This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

The Vacation According to Michael, Part 2

Friday, October 8, 2010

Originally Published February 29, 2008

Michael's Travel Journal -- Day 2: Sunday (Transcribed on this, the following Friday)

Well, it seems that nobody but me got any sleep Saturday night. I heard Mom and Dad say to Grandma and our friend that they had to adjust my humidifier settings last night, including turning it up and turning on the heater. There is something about the dry desert air and we will have to be sure not to skip any more nebulizers no matter what.

We had to check out of the hotel to get to our time share today, so Mom and Dad packed; our friend went to get breakfast for the big people, and Grandma tried to feed me my breakfast in the car seat. Hehe -- I wouldn't eat. She'll learn. It took a long time -- we had a lot of bags and most of them were mine. Mom keeps saying we'll have fewer bags when we leave, but I'm not sure. The first thing Dad did at lunch was buy something called "Klingon Blood Wine" and it looked heavy to me.

So, round about lunch time we went to someplace called "Quarks" (and Dad bought the wine next door). We didn't yet have a stroller, so I got to ride in the Baby Bjorn with Daddy. It was nicer than trotting along in the car seat yesterday. Anyway, while the big people were talking, someone named "Roggle" who called himself a "Ferengi" came to see me. He said he knew all about tracheostomies and that they had them sometimes on Ferengenar too. He let me take my picture with him. But then, something weird happened. Mom and Dad didn't feed me on time. And they weren't just a little bit late either. They were a lot late, according to my stomach. I tried to tell them, but no one listened. Not Mom, Dad, Grandma, or our friend. I didn't know what to do! Finally, Mom looked at me and said, "are you hungry?" And then she opened a jar of sweet potatoes. Sweet potatoes? By mouth? Where was my tube of formula? Well, my tummy was so empty I figured this would do until they found out where the forumla was packed, so I opened my mouth. Strangely enough, it wasn't so bad this time, and it did make my tummy feel better. So I ate 1/2 a jar. Then Mom and Dad and Grandma went upstairs to someplace called "Star Trek" and our friend and I walked around. I liked the flashing lights a lot. But then something weird happened again. They still didn't feed me. After a few hours, we went back to Quarks and I asked to eat again, and I almost finished the jar. Everyone seemed very impressed, but then they FINALLY gave me my formula.

Then some lady called a "Klingon" came around and asked if she was my first "interspecies communication." Dad said no, I had already talked to a Ferengi, and she made some rude remarks about that. But we took our picture together anyway.

Then Dad and Mom and I went upstairs to the bridge of the Enterprise D while Grandma and our friend played the slots. I got my picture taken in the Captain's chair, and it was fun. Everyone said I was so cute.

Something else was happening in Vegas -- every where I went, I seemed to attract some admirers. I thought everyone would want to talk to me, so I smiled all the time, and sure enough, everyone wants to talk to ME! (And why not, right?)

I was also keeping a secret from everybody. My bottom two teeth had come in, and no one knew. Grandma suspected on the plane when I bit on her finger, but it was my secret, and I did it without ever crying. (Although when Mom hit my tooth at Quarks with the spoon I cried.) Now Dad says I have to learn not to bet my teeth. I'm not sure what that means, but I'd better not do it.

After that, we went to the time share. It was a bit smaller than they'd hoped, but it seemed nice. Mom and Dad went to the store, and I had a bath. Then I cried for my parents. They came back, and Mom said I was wired for sound. I told her I wasn't going to go to sleep at all, no sir, not at ... don't rock me ... help ... zzzzzzzzzzzzzzz.

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Michael's Travel Journal, or The Vacation According to Michael

Thursday, October 7, 2010

Originally Published February 28, 2008

Michael's travel Journal, Day 1: Saturday (transcribed on this the following Thursday).

Mom and Dad got me up REALLY early on Saturday. It seems like the very first time that I got up AFTER Mom and Dad. To make it even weirder, they didn't even change me out of my PJs. The last time this happened, we ended up at the hospital, and it HURT. But this time, the car turned the other way, and we went someplace called the "airport". Mom and Dad seemed a bit anxious about what was going to happen to all those bags we were taking with us (there were so many), but a nice lady at the counter took them and said there was no problem. We had to walk through some funny place where they took my carseat and Daddy had to carry me, and they asked a lot of questions about my suction machine, but we had no problems. They took Grandma away for awhile to look at something with her metal knees, but they didn't take Mom away and ask her about her metal spine, so that was good.

In the airport, I finished my tube feed, then quickly threw up. On the airplane (we got to board first) I slept and refused to eat and generally acted like my good sweet self. Mom had me out of the chair for awhile, and you wouldn't believe how many people were on the plane -- more people than I think I've ever seen before. There was a nice man next to Mom who talked to me and talked to Mom about my trach tube. It was fun, but it was NOTHING compared to the airport where we landed. I've never SEEN such colors and people and signs and there were these SOUNDS. I couldn't figure out where to look first. Look at that, Dad! Look here! What's that? WOW! Mom and Nanny Tracie got our bags, then Dad and Nanny Tracie got the van and came back to pick up Mom, me and Grandma. Mom said I was HEAVY because Dad took the carseat with him and took forever to come back. But, I wore my cool sunglasses, and everyone smiled at me.

Things got a little rougher at our hotel that night. We got the formula delivered just fine, and we picked up extra diapers and stuff, and I was so tired when we went out to dinner. We tried to go to Mom and Dad's favorite mexican restaurant in the Luxor, but it closed two weeks ago. So we walked around the floor, and the COLORS -- once again, I hardly knew where to look. But I was so TIRED. I would sleep for five minutes, but then I'd wake up to look around. So, Mom and Dad and Grandma and Tracie took me to someplace called the Miracle Mile at Planet Hollywood where there was another mexican place. This place served the fastest food you'd ever want to see.

Once again, I fooled around with my food and wouldn't eat, but I had so much fun looking around. By the time we got home to the hotel, it was well after midnight, I know. Strangely enough, Mom kept saying it was only 9PM. I just know she was wrong about that. B y the time we got there, I was so wired that I refused to sleep and told Mom I was NOT going to go to slezzzzzzzzzzzzz. (5 seconds flat)

But, the night was pretty bad. I had a lot of coughing spells and my O2 monitor was going nuts (as usual), so Mom and Dad were up most of the night with nebulizers and holding me and just watching the monitor insist that my O2 levels were only 85. (But when we reset the monitor, it would say 97 for a few seconds, like magic, it just wouldn't stay that way.)

I tried to get up when my tummy said "breakfast" but it was still dark, and I was still tired. It was confusing, but Mom came over and said, "Go back to sleep; it isn't morning yet." So I did, and that was the end of my first day of vacation.

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It's Vegas, Baby!

Wednesday, October 6, 2010

Originally Published February 26, 2008

Greetings from Vegas! We tried to download pictures, but Michael left the camera cable in Virginia, so no luck there. Michael wants to show you his pictures of him with the Ferengi, and him with the Klingon, with him on the bridge of the Enterprise in the captain's chair, and him in the Venice canal, but not today.

Michael has adjusted well to the time difference, after only one 3AM hunger attack on our first night here. In fact, Michael is having an UNBELIEVABLE trip. I don't know if it's the dry desert air, or if it's the fact that everything is new, but he is like a whole new kid. The baby that viewed every meal as a boxing match is now chowing stage 2 baby food like it's going out of style. Instead of struggling to get in one pack on his very best day, he's now eating almost one every meal (other than breakfast, which is dramatically improved, but still lags behind the rest of the meals). We've not been pushing the bottle, because we are so thrilled with his desire to eat that we are taking all victories without question. This is day 3 of Michael demanding (and being allowed to refuse) solid food.

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More Coverage Problems -- Originally Published February 21, 2008

Thursday, August 19, 2010

When it rains, it pours. Adam and I were just beginning to decide that this feeding issue is getting a bit out of hand, and we need more professional help then we are currently finding ... with all the time, expenses and potential heartbreak that could bring ... when out of the blue the insurance company calls. Our night nurses have not been recertified, and as of 2/26, we are on our own.

Well, not exactly. We've finally been approved for a nursing program on Medicaid, but Medicaid wages are a fraction of the insurance payments. The nursing agency has some serious doubts about whether they will be able to staff Michael's nights on Medicaid wages, so we might, or might not, be on our own. Obviously we need to appeal this decision, but it is hard to think about that again. One can hope that the nurses will come anyway, but who can blame them for going where they will be paid the most? And, if we don't appeal, aren't we giving up in the face of a significant injustice?

Let's just hope that we really are only 2 months away from trach removal, and that this is a short time problem. I know I've said to many of you that I refuse to get my hopes up, only to be crushed in April if they say, "No," but it is hard not to wish, and hope, and dream that the end is in sight.

Well, we're off to Vegas on Saturday, before the sun rises, if the weather holds. (Great lyrics from the song by the Indigo Girls, "Wood Song".) Wish us well.

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More Good News/Bad News -- Originally Published February 16, 2008

Wednesday, August 18, 2010

So many people ask me every day, "How is Michael. Is he getting better?" We often find ourselves at a loss on how to answer that question, because ... well, because its COMPLICATED! It really is "two steps forward, one step back." Or, as we like to laugh about it, "Good news, bad news." Let me give you a snapshot.

Good news -- Michael has learned to sit up all by himself.
Bad news -- we have pretty much confirmed that he has a small, pinhead size fistula (hole) in his palate where the soft and hard palates transition.

Good news -- Michael now loves his bottle and wants to suck on it all the time.
Bad news -- Michael still won't swallow, and all the milk runs down the front of him.

Good news -- we've got meal times down to "about an hour."
Bad news -- Michael tries to throw up at least twice at every meal.

Good news -- Michael is learning sign language. He said, "Daddy" today, one day after we first showed him the sign.
Bad news -- Michael developed his own sign first. We think it means, "help me I can't breathe." Or possibly, "Get this (*&^ Passy-Muir Valve OFF me!" (He uses it in both cases.)

Good news -- Michael loves the cats and the cats tolerate Michael.
Bad news -- the cats are so desperate for attention that they will allow Michael to pound on their heads and kick them because it is the closest thing to a good pet they've seen in weeks.

Good news -- Michael is up to half an hour on his PMV, with regularity.
Bad news -- he only does it when Bunnytown is on.

Good news -- Bunnytown is the least offensive children's show on TV.
Bad news -- there are only 8 episodes.

Good news -- Michael has started "helping" getting his clothes on.
Bad news -- Michael likes to put both legs in the same side of the pants.

Good news -- Michael likes to help wipe his face off at meals.
Bad news -- he doesn't use a cloth.

Good news -- Michael loves to talk and make sounds.
Bad news -- he won't do it when the PMV is on.

Good news -- Michael's O2 levels are very good when he is on his PMV.
Bad news -- Michael doesn't seem to be able to breathe during the few seconds his trach is removed when we change it each week.

Good news -- our insurance company is very generous in the amount of "HME" valves it lets us have each month (the covers for his trach that let him be free from his friend "blue hose").
Bad news -- our medical supply company is chronically backordered, so we no longer get what we order.

Good news -- Michael is really smart and has decided that he is going to focus on learning to talk.
Bad news -- he still has that trach, and we wish he would have focused on learning to crawl first!

Good news -- Michael is so focused on communication that he needs to learn sign language before he invents his own language.
Bad news -- our favorite sign language for kids book focuses on food as a motivating factor. (Don't worry, we're working around that just fine.)

Now, to wrap up some long overdue things. The surprise "special thanks" this week goes to ... Aunt Eve. (I can here it now. "Me, what did I do? I haven't even spoken to them since Christmas!) Well, Christmas it was, Aunt Eve. The farm you and the Uncle bought has proven to be this month's most-favorite toy. I think of you every time the "spotted cow goes moo, and horse is brown and neighs." But, it isn't about me, any more then it was about my sister Kim when I sent her kids drums for Christmas. It's about the kids.

As soon as we get back from Las Vegas, we have PLANS that we haven't told anybody (even the people who need to know). We think Michael made great strides when he met friend his little friend who is a few months older, so we are hoping to schedule some play dates with thatfriend again, and with another little boy "N" who also has a trach (now that neither "N" or Michael have any tests planned for March!)

Last -- best wishes to friend "N" on getting good sleep test results back. We're pulling for ya, kid!

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Is This Real Progress? -- Originally Published February 13, 2008

Tuesday, August 17, 2010

Well, cross your fingers. Michael seems to be making some real steps forward in the past few days. As is almost always the case, some of these will prove to be false alarms (which we are sadly getting used to), but some of them are surely real.

In the evenings, with Daddy (and sometimes Mommy), Michael can get up to 1/2 an hour with his PMV. He is seldom happy, and often cries, but we were evaluated by a different speech therapist with experience in the area, with good news. She had planned (after hearing our struggles) to come in and tell us that he needed to put the valve AWAY and not use it for a few months (hard, given that he needs practice in anticipation of maybe having a cap soon for a decannulation test in April ...) BUT, after having seen him, she decided that he needs to wear the valve MORE, not less. He does struggle with it, and tenses up, and isn't happy, but he isn't suffering any physical harm. Hopefully he will soon calm down to engage with us when he wears the valve. Currently, he only calms down to Bunnytown or similar distraction. Maybe soon he will even take a sip or eat a spoonful with the valve, which hopefully will help with his swallowing difficulty.

Which brings us to eating. The ever-present struggle. This tube feeding is in many ways a bigger handicap then the trach is because it interferes with being able to take Michael out in the world in a normal way. We always have to plan around this huge obstacle about how to FEED him while we are out. So, we don't go out much, and we come back quickly.

I mentioned last time that meals were taking up to two hours. Well, we figured out how to hook up the feeding tube to a bag (a bag that came with the food pump that makes him throw up) that we hang on an IV pole, and it drips into Michael's stomach. While that is going on, we can try to feed Michael a bottle and his baby food, so he gets the association between eating by mouth and a full stomach. Plus -- Michael can't kick the tube anymore, we have our hands free, and the whole thing takes a lot less time. Minus -- the bag doesn't have an outlet for air like the tube does, and gassy Michael can back up the system until it runs out his nose if we don't watch him carefully enough. (So pleasant.)

BUT, it looks like the effort may be working. Michael was really fussy last night and couldn't stay asleep as his last meal time was approaching. (We often feed him in his sleep.) He threw his pacifier on the ground (forcefully) twice and started crying, while making "hungry" faces. So, in the spirit of infinite optimism, I grabbed a bottle and offered it to him. Amidst the tears, he grabbed it from my hand and shoved it in his mouth and began sucking. Now, he didn't do a very good job at it, and more than a little bit of it dripped out his mouth, but he wouldn't let me take it away until Daddy managed to drip enough food into his tube that the owies in his tummy went away. It looks like we are FINALLY beginning to make some strides.

I don't really think there will be huge strides in eating until the trach is gone, at which time either Michael will figure out this swallowing thing when the air pressure in his throat is restored, or ... he will increasingly get his calories from solid food, as will be age appropriate for him by then. I think this is still a long road, as we have seen Michael grab for bottles before to have it amount to nothing after one small burst of fun. But, having him ask for a bottle when he was clearly hungry -- now that sounds like real progress.

Well, out of space again. Love to you all.

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Not Much Has Changed -- Originally Published February 11, 2008

Monday, August 16, 2010

I know it has been awhile since we last posted anything. You can file this under the "not much has happened" category. We're still trying new ways every week to get Michael to eat. Mealtimes have begun taking up to two hours -- 1/2 an hour to fight over the bottle or cup, 1/2 an hour for solid foods, and then (approximately) an hour to get the milk into his stomach by tube when he just wants to go (play/sleep, etc.) (Tube feeding only works when the recipient is calm and relaxed!) When you consider that he eats roughly every 4 hours during the daytime, it doesn't leave much time for anything else.

Nonetheless, he is a champion sitter, now, so long as he isn't on the couch. He thinks Daddy is the single coolest person in the entire Universe. Sam the cat and Michael are fast becoming best buddies, and even cool Chip came up and head-butted Michael when he was crying the other day. Dolly still sleeps in his room all the time. (Not sure if she is watching the baby or wishing it was still HER room!)

He's looking bigger, but not much else has changed.

Oh -- PS -- apparently, per my email, I have just been named the beneficiary in a will and will receive over $9 million, AND I have won 850,000 pound sterling in an on-line email lottery. Ain't email grand? ((What's on YOUR email this morning?))

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A Little Under the Weather -- Originally Published January 26, 2008

Sunday, August 15, 2010

Well, I promised an update, so here it is. We were re-certified for 8 hours of nursing care for the next month. Between that and the nanny ... I think we're going to be okay. It is a credit to Michael that the doctor thinks he is well enough to get along without a licensed nursing caregiver during the days.

In the meantime, Michael is not feeling well today. He's running a fever and has an upset stomach. This makes a 100% record -- if Adam goes out of town for a weekend, Michael gets sick. Actually, I don't think he is sick, per se. I think he is reacting to yesterday's flu vaccine (which was the worst thing in the world ever, according to Mr. Drama). I actually saw signs of "remembered pain" in Michael yesterday, which was fun to see, even though the overall experience was not fun. The shot was long over, and Michael kept touching his leg, turning to me, and THEN turning on the waterworks. A plea for attention? Possibly. Remembering the owie? I think so. (It doesn't help that Michael figured out what was coming before they even gave him the shot, and he was trying to squirm off the table and kick the nurse away when the needle went into his leg.)

Last Thursday, Michael went to the "follow along clinic" at the hospital so they could "evaluate" him. I've canceled this appointment before, and I had grave doubts as to whether it was worth anyone's time. We already know where Michael is developmentally because of Early Intervention and the pediatrician. He's basically fine -- a little ahead in some areas, and slightly behind in his muscle tone. We've been told on several fronts that there is nothing of concern. So, Adam and Nanny take Michael .... the hospital folks throw some toys on the table, set him in Nanny's lap, and have him facing at least three people he doesn't know, and expect him to play. He basically refused and clung to Nanny. He is, after all, 7 months old and is developing stranger-anxiety. They then put him on the floor and told him to roll over. He said "No thanks, I'm fine where I am." They were pleased by the way he can prop himself up on his arms, but in general they were "very concerned" about his developmental delay. He doesn't, they say, grab toys or play with his feet, and he is quite behind. Hah! Adam and Nanny said -- you should see him at the house!

I don't mean to disparage the nice folks at the hospital, but where is the accomodation for stranger-anxiety -- a normal stage of development? If they can't find a way to control for that, how will any child test "normal"? Needless to say, we don't believe a word of it. I was thinking, this morning when Micahel was shoving his foot near his mouth in the high chair, that it sure was a shame he didn't know where his foot was ... and when he grabbed Tigger and bit his nose, I was thinking it was a shame that Michael never grabbed toys. Oh well, c'est la vie, y'all.

Anyway, we're sitting around watching a little Mickey Mouse Clubhouse this morning, and we don't have energy for much more. Even playing with the super-cool singing stage is half hearted. I'm sure we'll get some more playing time in, but it will probably be a low-key day. His secretions are up today, too, so it is hard to get anything else done with all the suctioning. Heck of a way to celebrate our first official day when no day nurses are required, eh? (Did I mention that Michael always picks the weekends where there are no nurses to get sick? He'd better stop that now!)

Well, that's about it. Gotta go suction out Mr. Gurgles.

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Keep Your Fingers Crossed -- Originally Published January 25, 2008

Saturday, August 14, 2010

Well, keep your fingers crossed. Today is our last day of nursing care under the current certification. The doctor has indicated that the dayshift nurses are no longer necessary, but then he apparently wrote an order for 8 hours, AND and order for 16 hours, to the insurance company. They are telling us that because of the two orders, and the difficulty of reaching the doctor live (he was on call at the hospital this week), we have no answer on recertification. We have no idea what will happen tomorrow, or even tonight for that matter.

We will be applying for a new Medicaid program that should help us in the event that we get into this situation again, but right now ... we wait. In the meantime, Adam has flown to St. Louis for his grandfather's funeral, and Michael and I are on our own this weekend. We have friends standing by to help, and some of my family are planning to drive down Saturday evening just in case, because the doctor has confirmed that we are still supposed to keep an eye on Michael all night long. We thought we would be able to use our new oxygen monitor so we could sleep, but this one seems to be worse than the old one. It says his O2 levels are between 80 and 92 almost all night long, but that clearly isn't right. When you look at him, he is pink and fine.

Well, the best we can do is assume the worst and move on. We know you are pulling for us.

Love, Megan, Adam and Michael

PS -- we'll keep you posted as best as we can.

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Another Daddy Update -- Originally Published January 21, 2008

Sunday, August 1, 2010

Greetings all!! This is another Daddy update. Since Daddy updates are always sponsored by letters, this one is brought to you by the letter Y as in why oh why oh why. The last week has been very eventful. Since Michael is healing so wonderfully the pediatrician has set up a schedule to get Michael back on track for his 6 month vaccinations (Michael looovvvves needles).
Michael also got his first feel of snow while out for a doctor’s appointment. Michael does not like snow one bit. He thinks that snow is just too cold and doesn’t like how it oozes on him as it melts. After a few seconds Michael was giving serious consideration of going to live with Grandma and Grandpa in Florida until it warms up here in Virginia.

Michael also had an appointment with the million-dollars-an-hour speech therapist. She had requested that we bring all the feeding stuff with us so that she could see what Michael is and is not capable of. When we got there she wanted to start Michael off with some stage one baby food. He took to this right away. He ate about 4 spoonfuls and was just smiling like he was having the time of his life. The therapist then wanted to go the thickened formula by bottle. Again Michael took to this like a champ. He did so well that the therapist wanted to see how well he did with a normal bottle. Dad thought this was just going to throw Michael over the edge, as it has been virtually impossible to get Michael to take anything. Well….. He did just fine. He drank about 1 ounce for the therapist. During the bottle feedings the therapist noted that Michael could suck just fine but he did have some problems with the swallowing. From the brief evaluation she could not determine exactly why Michael had difficulty swallowing but she did say that it was not something to become overly worried about. To test his swallowing, the therapist took an open cup and basically poured half an ounce down Michael's throat. Michael loved this and drank all of he was given and smiled at the therapist and asked for more. The therapist said that Michael was doing wonderfully and that it would be a good idea to get him started on a sippy cup. Daddy was very glad to hear this and was excited that we had something to work towards. At the next meal Daddy tried to feed Michael like the therapist had done. Michael would have none of it and cried all the way through his next feeding. Why oh Why oh Why. Over the course of the next couple of days Michael has started to eat more but has still not eaten like he did for the therapist

Well that is the highlights from last week. We can only hope that things continue to progress and Michael continues to eat better in the days to come.

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The Sound of a Child-- Originally Published January 13, 2008

Saturday, July 31, 2010

I try not to post two entries over the weekend because I know a lot of you check only on weekdays. But, this is worth an entry, so if you are reading this on Monday morning, be sure to start with yesterday's entry and read all the exciting things that have been happening!

Today was a great day. Not only did Michael get to go to a store for the first time (Toys R Us, of course!), but he also made a breakthrough on his passy-muir valve. We actually heard Michael's voice today (he was crying). It didn't last long, but it did happen.

Special thanks today go to Melissa P for her advice on the valve. Melissa -- because of your suggestions on waiting for the coughing spell to end, we actually took a big step forward this afternoon.

Nothing is so beautiful as the sound of a child -- no matter what they are saying.

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A Plan, A Plan! -- Originally Published January 12, 2008

Friday, July 30, 2010

A lot has happened since our last posting. It's hard to know where to begin.

On Thursday, we went to see Dr. Pulmonologist. He took a look at Michael's palate, asked a lot of questions, and pronounced himself, "very pleased" at Michael's condition and progress. The next step is working toward decannulation. (Decannulation = getting the trach tube out.) Yep. That's right. We have a plan. It's a fuzzy one, and a lot depends on Michael, but we have a plan.

Basically, we go back to see Dr. Pulm in March, and we have to see the pediatric ENT. We already had one scope of Alex's airway (remember the tiny camera that attacked Michael and Big Bird the day of his trach upsize? That was it.) Nothing abnormal appeared on that test, so what is left is for a bronchoscopy at the hospital, and a 24-48 hour hospital stay to observe Michael's breathing when his trach is plugged. Then, if all goes well (O2 levels stay up, CO2 levels stay down), the tube comes out. But, in order to get to those two tests done, two things have to happen. First, RSV season needs to end because they don't want to put Michael into the hospital with a bunch of really sick and contagious kids (like the ones in the PICU right now). Second, Michael needs to show Dr. Pulm that he can tolerate having his trach capped, by using his Passy-Muir valve (aka speaking and swallowing valve). The current goal is to have Michael in the hospital sometime in April.

Right now, Michael is not tolerant of the valve at all, although he no longer gets mad when we come near him with it. It's a tough thing to learn -- breathe in through your trach, and out through your mouth. A lot of things have to go right, including conscious thought and sufficient airway. Michael can already do quite a bit of babbling when he really tries, so the airway should be sufficient. Now the question is how do we get this kid on the valve? Well, any way we can, I suppose.

If things don't work well with the valve, we may have some other options. It is often the case that kids get smaller trachs as part of the weaning process, but with Michael's copious secretions, a smaller trach seems like a bad idea all around, everyone thinks.

As you know, a trach is a tube stuck in an airway, so for a kid to breath *anyway* with that thing in the way, is a tough job. He actually has to work harder than any of us would without the tube, in order to get the tube taken out. This is not an easy thing we are asking him to do, but we really think he will find a way.

Also, we are cleared to take Michael on vacation at the end of February. (Las Vegas, here we come!!!!!!!!) The doc had no objection ... if you can believe it! It's going to be a blast to actually be able to do something that feels a little like a normal family. (Or as normal as you can get with two medical bags, a feeding tube, and a handicapped parking sticker.) With Michael's luck (both the good luck kind and his tendency to have super-rare syndromes and super-rare surgical complications to trach tube surgery) we should have him play a slot machine or too. We could win mighty big....

As far as feeding -- Michael is doing a fabulous job with baby foods. He loves green beans, sweet peas, and squash. He even asked for more peas at dinner tonight. He hates thickened formula, though, no matter how thick it is. when you spoon it in. Super-thick formula mixed with squash -- that's okay by spoon. Squash watered down and put in a bottle -- that's ... sort of ... maybe ... possibly ... okay if it has to be ... if you don't pay attention to the temper tantrum. But, it's temper, not fear like it is with the formula. He managed about an ounce today by bottle ... with a lot of struggle. Tomorrow we try squash watered down with formula. Then we go to the store, because we are out of squash!

And, we are out of space! Until next time ... us three.

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Eating is Such a Natural Thing, You'd Think -- Originally Published January 8, 2008

Thursday, July 29, 2010

Yesterday's posting was chock full of frustration. I guess that was obvious. Believe me, your suggestions are welcome, and I hope I didn’t imply otherwise. Eating is such a natural thing for most of us, that it is hard for me to believe that we might not win this fight, and I imagine that it is hard for you to believe that as well.

Michael continues to be a champion sweet pea eater, although he still wishes we wouldn’t. He’s agreed to take the bottle back in his mouth, but he is wary and afraid that it will squirt liquid at him. We’ve tried thickening the formula, but we’re having a hard time getting the consistency right to the point where he will swallow but it still comes through the bottle. (Pharmacy sold us the wrong concentration of thickener, and we’re having to work that out, too. Hopefully they will take it back, but it is now an open box ….) The bottle itself still seems to be a success, as far as Michael's preferences, but he can’t use it well sitting upright, as it gets in the way of his trach. I hate to make too many changes on him, but we might need to switch him up again.

Not much is new since yesterday. We’ll keep you posted.

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Running Out of Ideas -- Originally Published January 7, 2008

Sunday, July 25, 2010

Nothing new to report. We thought we had a bit of a breakthrough, but we let our hearts rule our heads, and things are now worse then they were before. But, in response to the many questions we have received in the past week, we thought you might appreciate a bit more information on Michael's feeding problems. We do like hearing suggestions from everyone, so we've also discussed some of the more common suggestions below and how they have worked for us. That way we can all be on the same page with our creativity.

1. Michael has almost no sense of smell, which dramatically affects his ability to taste. While it might seem as if we just gave Michael something "good to taste" he would be motivated. But, try this for one meal: eat the entire meal while breathing through your mouth. Even better, have someone prepare food without telling you what it is, then eat the first few bites with your eyes closed. Hard to tell what you are eating, isn't it? We had a minor breakthrough with Michael by switching bottles, to the point where we could struggle to get Michael through 1/2 an ounce over 1/2 an hour without spitting it out. Then we broke down and tried juice in case we were wrong about Michael's tasting ability. The juice was an unmitigated disaster -- it terrified him because it was so thin and hard to control. Taste was a non-issue. And now, consequently, we are not even sure if Michael will continue to allow that successful bottle in his mouth anymore.

2. Hunger is an obstacle, not a motivator. As hard as it is to believe, kids with physiological feeding issues (such as swallowing problems or an inability to coordinate "suck, swallow, breathe) are capable of starving themselves to death. Tube fed babies also have issues because the connection between swallowing and a full belly is broken, and instinct no longer functions properly.

3. Yes, we have forced him. We aren't proud of this, and we have been advised against doing it, but we have done it anyway. We have cradled him in our arms, immobilized his head, arms, and legs, and forced the bottle into his mouth. Simply forcing him to swallow once or twice has not improved the situation one iota.

4. Yes, we know about the cheek stroke and neck stroke. No help.

5. Michael will eat green beans and sweet peas now, and he is getting better at it every day, and we are very, very pleased with this. At least we know that Michael will not have the tube for the rest of his life. Once he is old enough to get all his nutrition from solid foods, we should be able to get rid of the tube.

6. As shocking as it is to learn, some babies never gain the ability to drink from a bottle. If Michael had had more success before surgery, we might have more certainty that he will be able to drink a bottle at some time. However, we do need to accept that there is a possibility he will be one of the babies that never takes a bottle.

7. Our current instructions from the doctor are that Michael will have his feeding tube for a minimum of 6 months. Our current worst-case scenario is that Michael will have his feeding tube until 6 months after his trach tube is removed. And, no, we have no idea when that will be either.

Well, gotta run. Until next time.

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Good News/Bad News -- Originally Published January 3, 2008

Saturday, July 24, 2010

Slowly we crawl, millimeter by millimeter, back from the abyss.

As you might have guessed, we are talking about Michael's eating ability. This is one of those good news/bad news scenarios.

Good news: Michael can suck. Bad news: He doesn't want to and gets really pissed off when he accidentally does.

Good news: Michael can eat green beans. Bad news: Michael has to eat green beans whether he wants to or not. Other than his monumental temper and his desire to not eat ANYTHING, Michael seems fairly typical in his green-bean-eating ability.

Good news: Michael can swallow. Bad news: Michael only swallows his own saliva and sometimes milk injected with a syringe into his mouth. Heaven help us all if the bottle squirts into his mouth or if he pukes and gets a mouthful.

Good news: Michael has a trach and the world is happy that we cannot hear his temper tantrums. Bad news: Same as good news.

Not much to report, other than we do have a STUBBORN child. This too shall pass.

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Celebration Time, Come on! -- Originally Published December 28, 2007

Friday, July 23, 2010

JINGLE BELLS, JINGLE BELLS, JINGLE ALL THE WAY! OH WHAT FUN TO CELEBRATE OUR PALATE REPAIR TODAY!

We went to see Dr. Plastic Surgeon today, and Michael is doing fabulously! His repair looks beautiful, and Dr. Plastic Surgeon think the chances of fistulas (holes) developing is very low. The best part of all, says Michael, is that the restraints are gone. Michael can suck his thumb again and jam anything he can reach into his mouth! Yay!

We're allowed to start oral feedings, and Michael has no more restrictions. He can even puke again, if he wants. (ha, ha.) This means we can work our way back to the old, old feeding schedule that Michael liked, which will make him very happy.

HAPPY NEW YEAR! I know we'll be having one. We're off to celebrate now.

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Merry Christmas! -- Originally Published December 26, 2007

Thursday, July 22, 2010

MERRY CHRISTMAS! Michael has had a great Christmas, but first we'll finish the story of the hospital.

One interesting thing about the oxygen monitor in the hospital -- once we were in the ward, it seemed to go nuts. It kept sounding off, and we couldn't get his O2 levels up. In the PACU we were holding him upright with his head on our shoulder so the blood would drain out, not back. In the ward, though, he seemed to breathe better on the bed. Even the resident came in and checked out Michael to make sure he was okay. This made no sense that it changed, and if it didn't fix itself, we weren't leaving on Friday ... so Mom did something she didn't have the nerve to do the last time we were in the hospital. She pulled off the O2 monitor, reversed it, put it back on, and put on a sock. Suddenly the O2 levels increased by at least 5 points and we didn't have a problem for the rest of the night.

Long story short, the night was long and hard. At 6 AM, Michael woke up from a short nap and seemed happier. He was thinking of grinning, and he even managed a small smile when Mommy tickled him. As one of Mommy's old friends said, "the tide always changes." For Michael, the tide changed at 6, and he began to improve from there. We were elegible for discharge by 8 AM, when Dr. Plastic Surgeon came by to take a look. We hung around because the doctor wrote an order for us to see the GI doc so we could be sure to get our feeding pump. (Unfortunately, the order was not specific, (written as a "consult") and the GI doc didn't know what we needed and it took a long time (5.5 hours) to get resolved. We ended the scenario by telling the social worker we were leaving and she had ten minutes to explain to us the consequences of our decision to take Michael out of the hospital without the discharge paperwork. Fortunately, they agreed and had everything wrapped up and the doctor over in ten minutes.) The pump was ordered and arrived the following Monday. In the meantime, we fed Michael over an hour by gravity. Now he gets his food over an hour by pump. (Oddly enough, the only two pukes he has had since surgery have been after pump feedings. Huh?)

Now, about Christmas -- Michael had a great time. He slept through most of the presents because we got a later start than he wanted, but he sure had a great time opening the gifts. The paper was a big hit, and he could rip it even with the arm restraints. When the fun got too much, the Bunnytown bunnies were there to help (thanks to a made from tv DVD that was a Christmas present from his cousin!) (Thank you!!!!!!)

We had the good fortune of Christmas lasting several days -- Saturday we exchanged presents with an aunt, uncle and some cousins, and on Christmas day with another uncle, and a grandma and a grandpa (and we had some fun gifts from the great-aunts and uncles and great-grandma, too!)

wanted to take a few lines to express our deepest thanks to everyone for your thoughts, prayers, and well-wishes during this hopeful yet difficult time. It seemed that every time we stumbled, there was a helping hand, and this has been going on for months. The past week has been a challenge, but there have been so many people on deck to make it easier. We had food from neighbors, and cooking from family, and company from the church, and blessings from everywhere. We could not ask for more in our wildest dreams. Special thanks to Michael's grandparents and to Pastor H___ for staying with us in the waiting room while the surgeons cut into our son (again). Special thanks to each of you for your notes on this carepage. And, perhaps most poignantly of all, special thanks to the parents of other children who have had this surgery -- all across the country -- who have counseled us and encouraged us and prepared us. We cannot imagine how to be prepared without you.

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Palate Repair, Part II -- Originally Published December 24, 2007

Thursday, July 15, 2010

Where were we? I believe we left our hero in his bed watching the taped-from-tv DVD of Bunnytown. The next thing that happened was the nurse walked in with a syringe full of Reglan, that awful tummy medicine that we decided Michael could never have again. I thought we fixed that post-op? Apparently it didn't get into the computer. So, the nurse called the doctor again and had it removed from the computer again. (So we thought ... this happened one more time before we left the hospital believe it or not.)

Mommy's second freakout came shortly after we got Michael into his room upstairs, before Daddy even made it back with Grandma and Grandpa. Michael started coughing and coughing, and it was so hard to listen to, with all the thick mucous post-surgery. It was clearly an effort to cough that hard, and in the middle of it, something clogged his trach. I heard it clog, which was okay, because Michael immediately began breathing through his mouth. It was obvious to me because I was holding him, and his breath went from my neck to my cheek! Wow! But, he still needed to be suctioned, and I wasn't sure I was up for seeing more blood just yet, so I handed him over to the nurse and respiratory tech. We knew the nurse was a good one because the very first thing she asked when Michael got into the room was how far down was Michael's suction depth, and she got a card and marked it so everyone would know. (The less cautious folks "eyeball" it or suction down to something called the "corina" which is waaaayyyy too far for an infant.) Anyway, after several tries, the tech and the nurse managed to break Michael's occlusion and suck out a bunch of thick gunk. For the first time, I couldn't look, and it was so hard to hear all of the thick secretions stuck in there. I'm sure I could have done it if I absolutely had to, but I was weak and was glad to have someone to pass the task to.

The worst part came at shift change, after the pharmacy situation had been resolved. Michael got his meds (AT LAST), but the night shift nurse had a very strict rule. His orders were written "every four hours as needed for pain" so she insisted that in order to avoid an addiction to codeine, Michael could not have the medicine every four hours after the first two doses. He needed to demonstrate to her he was in pain. At less than 12 hours past surgery? I won't disparage the excellent folks at the hospital, but c'mon, have a heart! He's thrashing in his bed! Between the pain and the nebulizers every four hours, Michael's heart rate stayed between 170 and 200 most of the night. We were lucky to see it go down to 160. And, due to poor timing on all our parts, he was eating, nebulizing, and running out of pain medication all at the same time every few hours. Poor little guy!

Long story short, he thrashed a lot on the bed and cried himself to sleep when he could. We had to hold him down a lot. It was a long, long night for all three of us. We are so grateful that the other baby in the room was also post-op, and the charge nurse allowed all four parents to spend the night in the room. (Normally only one parent is allowed to stay in a shared room.) Neither of us could have done it alone. Michael slept for only a short while at a time, and one of us needed to stay awake to be sure we weren't too tired to hear him when he was trying to cry. (No voice, you know.)

Anyway, as the long night dragged on, we had a bad spell at about 4 AM. Michael spent about an hour coughing, and nothing came up. We rang the nurse, but of course by the time she got there, he had collapsed in fatigue again in mommy's arms. She did page the respiratory tech, though, and they both listened to him carefully. No congestion in the lungs. The respiratory tech suggested that the coughing was irritation from drainage from surgery, but whatever it was, it wasn't his lungs, so there wasn't much to do about it. I t was miserable for all of us.

Out of space again. By 6AM he grinned.

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Palate Repair, Part I -- Originally Published December 22, 2007

Wednesday, July 14, 2010

Where to begin? It's a long story, so we have to tell it in chapters. Sorry, guys.

We got to the hospital bright and early to check Michael in. Everyone was pretty nice -- the kids are always a hit with the nurses. Michael was feeling alright. He was more concerned about his early morning wake up call then he was about missing breakfast. In fact, he fell asleep in Daddy's arms during the interview with the anesthesiologist. We laid him on the bed and they wheeled him away.

As Lynn mentioned, the ear tube part took a lot longer than we expected. It usually is 10 minutes or so, but it was over an hour before Dr. G____ came out to talk to us. Michael has a tiny ear canal, and it was a bit of a challenge. The surprising part was the actual mouth surgery, which was a lot shorter then anticipated, and Michael ended up coming out of surgery on schedule, despite the tubes. Truly, if one of the parts was going to be more challenging, Michael picked the right part. Dr. G____ advised us that we may face some chronic issues with one of Michael ears, but they may also have been prevented/solved by the tubes, so we will have to see. So far the ears look just fine -- no drainage or anything.

The challenges on the medications began in recovery. Michael had a pretty terrific post-op team that really catered to him. The hospital was very full, so we were waiting downstairs for a long time for a bed in the ward. They knew it was going to happen, so they were getting ready to let him eat downstairs because they thought he would feel better if he had some food. They were going through his list of at home medicines to make sure they had some sort of tummy medicine going into him before he ate. In short, they were really trying to get things rolling for Michael. The problem was that the surgeon had written a script for Reglan -- which is the nasty no-no drug that makes Michael cry. We corrected that immediately and told them what drug he was supposed to be taking. They were not familiar with it but they sure tried -- calling the GI doc and the pharmacy and anyone they could to get the right dosage. (The chart didn't have it, and we didn't remember it.) Long story short, it was difficult to get the dosage and Michael's tummy had to wait for almost two hours before they got the medicine to him. (It took a while to get the dosage, then it took the pharmacy forever to get it to Michael.)

In the meantime, they gave Michael all the morphine he was allowed to have, but there was a problem with his Tylenol with codeine and the pharmacy hadn't delivered that yet. So, they called to get another morphine dose because they didn't want Michael to hurt more then necessary. They were also helping mom and dad hold Michael and roll him around and clean him up so that he didn't cry. They even went ahead and suctioned Michael trach to make him more comfortable. (And this is when Mom had her first small freakout ... they suctioned a catheter of blood-colored secretions. We were expecting it, but it was SO HARD to see that come from his trach.)

When we got upstairs to the ward, things got a lot harder. Despite all the work of the post-op nurses, the Tylenol issue didn't get fixed. Apparently the wrong script was written, and the pharmacy wouldn't deliver it. It was 6 hours from the morphine dose before any more painkillers arrived, and Michael was in misery. He was thrashing on the bed and thumping both feet at the same time. He was crying, coughing and his heart rate was soaring. Mom, Dad, Grandma and Grandpa had a lot of work to do to try to console him, and we experienced our first relief of BUNNYTOWN! Thank heavens for that DVD. He watched it calmly with tears streaming down his face. It was heartbreaking how long it took to get him help.

Well -- out of space. More tomorrow. (Author's Note: The original Care Page had a word limit in 2007 that the current Care Page program no longer has.)

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A Brief Synopsis of Surgery -- Originally Published December 21, 2007

Tuesday, July 13, 2010

Hey, everyone. We're home. We were eligible for discharge this morning at 8AM, but due to a bit of a communication snafu did not leave until 1:30 PM when Megan threw a bit of a fit and threatened to just carry Michael out. We're all tired, and we have a lot to share, but in the short term, let us leave you with the following thoughts:

From Megan and Adam: We are so thrilled at the start of Michael's new phase in life. It was fun to see all our old friends in the hospital, but it was scary on so many levels. The ward was full of very sick little boys and girls and we had to wait a long time for a bed after surgery. As happy as we are that surgery went so unexpectedly well, this was one of the most difficult two days of our lives. We experienced things with Michael that he will never remember, and we might forget in about 50 or 60 years if we are lucky. In short, it was wonderful and horrible all rolled together. The surgery was easier than expected, but pain control was somewhat of a sad joke, and it took everything that both of us had to help Michael through the longest night of our lives. Gory details to follow later, as we have been up for most of the past two days.

From Michael: WHAT HAPPENED??? Big Bird, did it happen to you, too? I can't move my arms and I can't twist myself up in my usual sleeping position, and I keep coughing and coughing and coughing, and it HURTS! But, the bunnies of Bunnytown were with me EVERYWHERE! I sat up, and they sang to me, and when I laid down, they appeared above my head. They were on the big TV sometimes, too. Somehow, the bunnies made me feel better.

From Big Bird: Yes, Michael, it all happened to me, too. And we can get these things off our wings as soon as you stop trying to put my foot in your mouth. Also, can you tell mom to turn that little DVD player toward me a bit? You're crowding out the view.

Until tomorrow, Merry Christmas and Happy New Year. We have had the best Christmas present anyone could ask for, and the very best part of all is what we keep telling Michael: the past two days are two days we never have to live over again, and it will only get better from here.

Love, Adam, Megan, Michael, and Big Bird

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Surgery Update From The Sister -- Originally Published December 20, 2007 10:53 AM

Monday, July 12, 2010

Hi, it's Lynn, Megan's sister, and I have GREAT news! No, Michael is not Jesus, nor an Angel, but he is out of surgery! The doctors were able to close the cleft using just the mouth tissue. It was expected they would have to borrow tissue from elsewhere to close the hole. (I did not ask Megan, "from where?" because I don't think I want to know!) They also don't expect any further palate surgeries to be necessary, another unexpected good result!

His ear tube surgery was a bit more difficult than they expected, but they did get both in. So now his ears will work quite well and the worry about festering infections will be reduced. Now he can do the fun hearing tests like his cousin, does! That's one doctor he won't fuss about visiting.

Megan and Adam will be staying with Michael at the hospital mostly fulltime, so Michael has that comfort. Let's hope they are home by the BIG DAY (as expected) and resting comfortably. Or, as comfortably as Michael ever rests.

Let's also hope that this is the straw that's needed to get Michael eating on his own, by mouth, and we can start planning when the feeding tube can come out (or at least not be used!). That would be a great gift for this year.

Merry Christmas to all of you, and thank you for your steadfast support of Megan, Adam and Michael. It helps, and I should know!

Lynn (for Megan)

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Here We Go -- Originally Published December 20, 2007

Wednesday, June 30, 2010

4:54 AM:

Here we go. We'll update when we can.

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Tomorrow is Surgery Day -- Originally Published December 19, 2007

Tuesday, June 29, 2010

Tomorrow is the big day -- surgery at 8AM. Michael is keeping things interesting as usual. Yesterday we confirmed that he was coughing up yellow mucous after every long sleep, including this morning. And, he threw up this morning, more than usual. A quick call to the doctor this morning was in order, and so far there is nothing to stop surgery. We are on watch for more thick mucous and for fevers, but so far so good. Michael is taking so many nebulizers and antibiotics right now that I can't imagine what kind of infection he could be brewing that has survived all this.

The hospital will call today at 1:30 for pre-op check-in stuff. It looks like things are really going to happen.

By this time tomorrow, Michael's wait should be over -- ours, however, will just be beginning. :-)

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Mom Knows Best -- Originally Published December 15, 2007

Monday, June 28, 2010

Today is the first day of the pre-op antibiotics. Last Thursday we saw the pulmonologist for our pre-op checkup with them. On Tuesday, we start pre-op nebulizers. I guess we really are going forward -- it is starting to feel pretty real.

We also had an interesting discussion with the pulmonologist last Thursday, too. We were discussing pre-op preparation (medicines, etc.), and they wanted to have Michael on a low-stress dose of steriods by the anesthesiologist "because he has had systemic steroids before." He has? I didn't remember that, and neither did Daddy. We grilled the doctor -- "which medicines were steroids?" He mentioned a few I KNOW Michael had never had. He was sure Michael had had them -- we were sure he hadn't. The closest we got to steroids was a discussion about what happened if Michael didn't kick the last infection on antibiotics alone. But, it was never necessary. They checked and checked the records. They checked his last hospital stay, too, but nothing. We get the feeling that they had him confused with another baby -- which is interesting because it means that despite being sick all of November, Michael was not as sick as they had remembered him being and in fact was substantially better off. (We even think that until their recollection was refreshed, they had thought Michael's stay in the hospital overnight for observation had been lung related and had been longer then the overnight that it was.)

None of this is very important except that it is encouraging to know that Michael is stronger than expected and has handled his infections better than the doctors' recollections or expectations. It is nice to know when things are going well. And, it is a good warning to us that if we want Michael's airway to be measured in the winter, we will need to remind them of all the reasons we think he is a good candidate for winter testing despite the greater risks of infection. (One of his doctors is not in favor of testing until spring, but the others have not said, "no" yet.) As tempting as it is to think that our kid is so cute and special that everyone remembers everything, he really is one of hundreds they see every week.

Michael continues to play the nap game. He will nap for some nurses and absolutely refuses to for the rookies. He plays them like a fiddle and tries to convince them he really isn't tired. He cries, they pick him up .... you know. For mom, at least, he tries a different tack. He beats himself on the head to stay awake -- crazy kid!

Anyway, in truth, Michael is not relaxed around some of the nurses, and it doesn't matter whether I am in the room or not. If he gives in to sleep, he jerks himself awake at the slightest sound or movement, which is exactly the opposite of what he does with the experienced nurses or in the evenings with us. It makes me think that post-op might be a napping nightmare if Michael's anxiety kicks in. We will all have a lot of work to do to keep him calm, cool and collected. We've asked his favorite nurse from home to stop by the hospital on Friday to say hi if she can. Maybe seeing her will make things better. And, there is a small chance that one of Michael's favorite NICU nurses will be his post-op nurse in the PICU. We're actually hoping so, but we'll have to see if the scheduling works out.

Well, all we can do is wait and hope that no illness gets in the way between now and Thursday!

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Revolving Nurses and Missed Medicine -- Originally Published December 10, 2007

Sunday, June 27, 2010

Just a quick note today. Michael had a great day -- he even took some nice long naps. A lot of this has to do with his favorite nurse, A____, who still works with us on Mondays. She is still by far his favorite, and he relaxes so much when she is in the house. He is generally a happy and patient baby, who likes to play with anyone, but the revolving door of nurses since A____ had to leave has left Michael a bit adrift. He no longer keeps to any particular schedule, and he refuses to stay asleep for long unless A____is in the room.

Today Michael accidentally missed a dose of his tummy medicine, and boy did we notice a difference. His stomach took forever to empty (don't ask how I know that), and he was burping back food immediately after he ate -- something he hasn't done in several days. I guess we know that the medicine is working! Now we just need to be sure he gets it before every big meal. While we are on the medicine, Michael can have almost all of his daytime meals on his old schedule, with only a little bit left over for a snack two hours later. (Without the medicine, the meals and the snacks were roughly the same size.)

I guess when the pre-op antibiotics start, we will be able to see how much of an issue they present to Michael's tummy. (Hopefully none!)

We're very late with our special thanks list. So, here goes -- special thanks to Megan's family who spent Thanksgiving with us (our first at our own home). It was a nice adventure, and we appreciate y'all finding your way around our kitchen to make all that great food. Special thanks, too, to Debbie C for bringing Maggianos for dinner last week (yum!). And last but not least, special thanks to the B____s for helping us get our very first live Christmas tree this weekend.

We can hardly wait to see everyone in the New Year!

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Getting Prepared -- Originally Published December 8, 2007

Saturday, June 26, 2010

We saw the doctor yesterday. Here is the result:

We will have pre-operative antiobiotics to help prevent Michael getting sick again. It will take about a week for Michael's stitches to heal, and after that, Michael can start a bottle. In the meantime, the surgeon will be working with our GI specialist to keep Michael's reflux under control. The good news is that one small upchuck a day is not a big deal (but a small upchuck for every meal is a big deal). AND, Michael can keep his pacifier immediately post-op. (Yay!!!!) He can keep it because it isn't too long and doesn't go far back in his mouth -- the exact reasons why the speech folks do not prefer it. (Oh, the irony.)

He will not be in restraints, per se, but he will be in little arm pads that won't let him bend his elbows and get things into his mouth. This is supposed to last about a week.

We will be going in the hospital on Thursday morning (at about 6:30) for an 8 (or 8:30, I have to look that up) surgery, and we are scheduled to be discharged some time the following day. Discharge (morning or afternoon, or if we have to stay) will depend on how Michael recovers, and the surgeons will make rounds more than once a day if necessary. If we don't get out on Friday, they will discharge over the weekend as appropriate, so we won't be stuck there just because it is the weekend.

I think that about sums up everything from the doctor.

On the pacifier front, we are getting by right now with half a kleenex stuck in the depression, and so far no wetness and no sign that it will easily come out. I think we'll probably move to a small piece of cloth, but so far the idea seems to be working. Thanks to everyone for your suggestions -- if this doesn't work, we'll give some of the other suggestions a try. We got lots of wonderful ideas from y'all, and I am chagrined that we didn't think of some of them ourselves!

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Our Pacifier Is a Health Hazard -- Originally Published December 7, 2007

Friday, June 25, 2010

Well, today is our day to see Dr. Plastic Surgeon. We'll keep you posted on what he says. But, in the meantime, I thought you all might like to know that we have a new reason to hate the dumb green pacifier.

Now, I understand that it is more anatomically appropriate for Michael's physiology -- the shape is longer and reaches his tongue, forcing more correct sucking motions than his favorites, and it is closer to the shape of the nipples he will be using after surgery. So, we do try during meals, but he can't hold it in by suck and needs to use his hands, and he isn't as coordinated with it as he is with the other one (and when he is tired, only the favorite will do). BUT, Michael accidentally discovered another downside to the device. That hole in the back where a finger can slip in also fits snugly over a trach tube when mommy's back is turned.

YES, you read that right. Michael was playing with the pacifier during a meal. I turned away to get the suction machine, and he had put the depressed part right over top of his trach. I thought it was odd that he had stopped making the raspy sound he makes when he breathes, and he looked scared but not yet panicking, so it took me a few more moments to react. After a few more heartbeats, I grabbed the pacifier and pulled it away from him, and he began gasping for air and sobbing. Poor little guy -- it was just like a passy-muir valve test! He really frightened himself. And the new lesson of the day -- NEVER LEAVE THE BABY ALONE WITH A GREEN PACIFIER!

And, the puzzle for the day for all of you with "fix it" brains, is this: how can I plug that hole without using something that will be unsafe? I could tape it, but Michael drools like a champ, and tape will not likely hold. The pacifier is rubbery-plastic, so there is no sewing anything to it. Staples are out of the question. What haven't I thought of?

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Rollovers -- Originally Published December 6, 2007

Thursday, June 24, 2010

We have no nurse today, so I need to make this quick. Michael's reflux seems to be in better control these days, but he is refusing to take a morning nap that is longer than 20 minutes. I'm beginning to suspect that it might be the new medication, but that seems a bit farfetched.

On the developmental side, Michael volitionally rolled himself from back to front yesterday morning, and he has recently learned "directional kicking". He thinks it is fun to make his feet hit things. And we thought feeding him through a tube was hard before!

Tomorrow is our pre-surgery appointment with the plastic surgeon, where we will hopefully learn the answer to questions about recovery time, new bottles, pacifiers, reflux and restraints.

One last request before the holidays -- Michael and I had to have two trees taken down because they were rotten. Unfortunately, after two weeks, we were only able to stack a portion of the wood on our woodpile, and much of it is still in the yard where the trees were cut down. If anyone has a teenager who would like a little extra cash or some pizza, we could use some help to get this task put to bed.

Best to all of you!

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When You Overinflate a Gtube -- Originally Published December 4, 2007

Wednesday, June 23, 2010

Well, a lot has happened since our last update.

First, we found what is probably a big contributing factor in Michael's reflux and puking. For reasons that are NO ONE's fault, Michael's G-button balloon was over-inflated. Let me explain what that is. The button in his stomach is held in place by a balloon that is filled with water. This balloon sits inside the stomach and so takes up space. It is supposed to have 5 cc's of water, and his had 7. Here is how we think it happened. Two Mondays ago, we checked the water in his balloon, and it was only 3 cc's. This was not the first time we had checked it, but it was the first time it read "light" on water. We checked it several times in a row to be sure we were getting the right result. (You check it by pushing a syringe into the end, which triggers a release of the water into the syringe. Sometimes the water doesn't want to come out, so you need to pull it. So it is always a good idea to release the water and put it back in a few times before adding any water.) Now we did this on the day we took him in to the doctor for his most recent illness, which is also about the time the reflux got worse.

The next Monday we (Mom and a different nurse) checked it again, with a 5 cc syringe, and 5 cc's of water came out. We lost a little bit putting it back because Michael started kicking.

Now yesterday we checked it again (Mom and the first nurse again). Again, only 3 ccs of water, but this time it was obvious that the syringe was sticking. We checked it three times, with the same answer. So, we added two ccs of water. But, neither of us felt quite right about it. To begin with, it seems odd to lose that much water in one week, and Michael cried when we put the water back in. So, we got a brand new 10 cc syringe, attached it, and 9 ccs of water came out along with some air. Yes, 9. We are probably lucky the balloon didn't rupture. Two ccs we had just put in, but that leaves 2 ccs of water unaccounted for unless we go back two weeks ... to about the time he got sick with his infection and started burping up more (from the antiobiotic and his infection). Was there an additional cause that we didn't know about because if the timing? It seems likely. This could explain the excess mucous and why the same amount of food used to fit in his stomach and now didn't.

We have not yet started the new tummy medication because we wanted to see if he would improve after the water in his balloon was set to the proper amount. So far, he has improved, but there are still problems. It could be that it will take time for irritation in his stomach to heal -- we're checking with the doctors on this to see when they want us to start the new medication, but we will eventually start it. In the meantime, Michael is still eating 10 times a day, but during the daytime half of the meals are larger (2/3 - 1/3). He feels better with this, but it is sometimes hard to get all the food into his stomach without irritating him on the bigger meals. There is still a lot of gas and burping, and some reflux, but 24 hours with no puking!

Today we also tried the passy-muir valve (speaking valve) with the speech therapist. Sorry to say that it didn't work. Michael tried to breathe but didn't seem to be able to at first. On subsequent attempts, he didn't turn red, but he was struggling to breathe. (His O2 levels were fine the entire time.) Each time, when we removed the valve, he gasped -- so we still have some issues to work through.

Now, for those of you reading to the END -- here is the BEST news of all. WE HAVE A NANNY! She seems like a perfect fit for our family -- right down to being part of the Big 10. Her name is Nanny, and she will be starting a few days before Michael's surgery. Thank you to everyone for your help and ideas.

Well, we are out of space on this update, so enjoy those holiday lights, everyone. They sure are pretty at night.

Megan, Adam and Michael.

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December 3, 2007

Tuesday, June 22, 2010

So far so good. Michael's emesis for the past 48 hours has only occurred when he coughs too hard and gags himself. There is nothing we can do about that -- it would happen to any of us. So, the good news is that we have found a feeding level that is successful in controlling the problem.

Bad news is that Michael still isn't taking too well to it. He won't sleep for more than 20 minutes at a time during the day because he isn't "full". We'll work on that this week and talk to the plastic surgeon on Friday to find out what the threshold really needs to be. What is considered "no puking" for a baby? How long after surgery will it take for the stitches to heal? We'll have answers soon.

In the meantime, Michael is off his Augmentin (antibiotic for his last bout of tracheitis). That should make him feel even better for awhile, but he will probably get it back in the week before surgery as a preventative. We'll have to check on that this Friday, too. Today he starts low doses of another antiobiotic that is supposed to help empty his stomach faster. vIt takes the place of the Grumpy Medicine. vWe'll have to see if it works, and if it does, is the cure worse than the disease?

We hope to have more good news to give you by the end of the week. vThanks to all of you for tuning in to the Michael-Saga. We miss and love all of you and cannot wait to see each of you in the New Year.

Megan, Adam, and Michael.

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December 2, 2007

Monday, June 21, 2010

Shortly after I posted the last update Michael gagged himself and threw up. So much for adjusting his food volume, eh? But, one emesis in 24 hours is better than 6, right? (Emesis = medical for "puke").

Thanks for all the video offers. Someone is out there looking for Bunnytown for us, but I have read my emails recently and have heard from a good authority that the show is too new to be on video yet. I hope our good authority figure is wrong, but she seldom is. Just to be clear, Bunnytown is truly MICHAEL's choice, not ours, but it is comparatively low on the parent-annoyance factor as far as kids programming goes. Mickey Mouse Playhouse isn't bad either, and Michael likes that one, too.
Does anyone have a Santa suit we could borrow? We're thinking that it would be fun to dress up Adam and take Michael's picture that way. That way we won't miss having his picture taken this year. If no one has one, we can rent one or probably buy one in the pre-Christmas sales. Buycostumes.com is a pretty good website, if y'all haven't checked it out yet.

For those of you who turned off the Washington/Hawaii game in the first quarter, you missed it. Hawaii is making a big comeback. Go 'Bows!

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December 1, 2007

Sunday, June 20, 2010

24 hours and no spit up. Good news. Michael hates the new feeding schedule. Bad news. He thinks he is hungry all the time. We're going to try to make every other meal a little bit bigger and the other meal a little smaller and see if that makes him happier.

Some of the nurses still seem to be a bit concerned that Michael was trying to eat too much, and the new food schedule is so much better. I couldn't disagree more. He is eating about as much food as he is supposed to have, based on his weight and based on he fact that he is eating higher-calorie food. The volume would be much, much greater if he were eating unfortified food. As far as eating every other hour goes, it really is not appropriate for his age. Plus, with the reflux, it is really limiting. He eats, which takes at least half an hour, and then he has to sit up (or stand) for at least half an hour. Then he gets at most an hour off before it all starts again.

It is frustrating for all of us, but AT LEAST we know that it possible to get him through a day with enough food and no puking. This means that we should be able to get a stable post-op situation for Michael. The wild cards that we haven't been able to work through so far are: what happens if he cries for an extended time and swallows a lot of air? What happens if he coughs a lot and gags himself? Both of these things happen to Michael with some frequency, and both could easily happen after surgery. Hopefully we can keep him calm and comfortable, but it will be a challenge.

The other challenge will be the arm restraints. We have read that they will be part of our lives nearly the entire day for 3 weeks. We still have to talk to the doctors about what they expect in this regard, so we don't know if what we are reading will apply to Michael's situation. Some kids can take their restraints off under close supervision, but it isn't likely that Michael will be able to. The kids that don't have to wear theirs are those that aren't likely to put things in their mouth. Michael, on the other hand, has his fist or one of his thumbs permanently inserted in mouth. He also chews his blankie. If he doesn't have artificial restraints, he will need parental ones.

Well, I need to wrap this up. Michael is thinking about waking up. He didn't take a morning nap, and his afternoon nap has been waaaaayyyy too long to bode well for a good bedtime. There is no nurse tonight, so we NEED a good sound sleep tonight (especially because we have to get up twice to feed him just for starters).

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November 30, 2007

Saturday, June 19, 2010

I know you all are curious, so here goes.

No more oral feeding. There is too much mucous and stuff going on, so no solid foods or bottles until after surgery.

No more Reglan/grumpy medicine/no sleep medicine. We talked it over with the doctor, and the little benefit it gives isn't worth the switch between Michael Jeckel and Baby Hyde. Poor Michael just cried himself to sleep a few minutes ago, and I hope by the time he wakes up tomorrow we have our smiling happy baby back. He laughed and played today, but it was laced with a lot of real tears and no nap worth mentioning. He dozed on the way to the doctor's office, and on the way home, but that is about it since this morning. He was so tired it was hard to watch, but he would not sleep. I had forgotten how much fun it was to rock him and feed him when he was on Reglan last time. It takes forever to get food into his stomach while he is crying and throwing himself around with fatigue. We'll try a new medicine on Monday, but that one might be just as bad. We'll have to see.

Speaking of feeding him, Michael is now eating ten times a day (up from five). Basically, this averages out to every two hours during the daytime and two times overnight. (Before it was four times during the day and once overnight.) We are venting his Gtube for a full five minutes before putting any liquid in the tube and we are feeding him half as much at each mealtime. Using this system we have reduced ourselves to only one liquid burp all day. (The one try at 150 ccs that I mentioned in the last posting was a failure in that it resulted in a post-meal spit up.)

It is frustrating, but necessary for the time being. Honestly, if Michael weren't going into surgery, this would be so much no big deal. As we discussed with the doctor, babies puke, and I can clean it up with the best of them. But, it is the surgery and the stitches we need to focus on now, and we need to have Michael demonstrate to us what his stomach tolerance is. Once we have this feeding schedule set and we go for awhile without spitups, we can try to increase his volume a bit and see what happens.

As far as the hospital goes, the GI doc and the Plastic Surgeon will be consulting. But, as far as we are understanding, Michael WILL be on a feeding pump immediately post-surgery, and we will be discharged with it. He will have to use it until the risk of damage to the cleft repair is over. We don't know what the settings will be -- it could be that the food is pushed in over 60 or 90 minutes a set number of times a day, or it could be what they call "continuous feeds" (meaning, I think, 3 hours on and 1 hour off the pump). Also, the continuous feed part could be at night only. At this point it is all up in the air.

The feel-good takeaway of this whole episode is that, per the doctors, we will have a whole different kid coming home from the hospital as far as eating and digestion is concerned. Everything is re-evaluated at that point. The pump is just a means to an end.

Surgery is the first step to progress and toward normalizing Michael's food intake. With a closed palate comes less air in the stomach and (at least eventually) the ability to eat by mouth. In the meantime, we are treading water and trying not to make waves all at the same time. This crazy feeding schedule is just a means to an end.

Oh, and thanks to y'all that have called and emailed about your baby videos/DVDs. We'll take 'em, with thanks! Michael may be off the grumpy medicine, but we are looking at a food pump, and there will be arm restraints after surgery. It's hard to play without your arms! Thank goodness he does seem to enjoy children's programming --at least some of it.

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November 30, 2007

Friday, June 18, 2010

Things are changing fast. We spoke to the GI doctor last night, and for the time being Michael is back on Reglan -- a drug we really hate. It makes him so grumpy and unable to sleep. Last time we were on this drug, Michael slept from evening to morning but did not sleep at all during the day. Already, with only two doses in him, the grumpies are coming out. He has been whining most of the morning and won't even fall asleep in Mom's lap. So far he is distractable by watching Mickey Mouse Clubhouse and Sesame Street, but I think the car ride to the doctor today will be a disaster.

The feeding every two hours has decreased the vomit, but it hasn't made Michael very happy. He thinks he is hungry all the time (and the Reglan doesn't help). The doctor has indicated that a feeding pump immediately post-op is likely. As I understand it, this means Michael will be on a machine 3 out of every 4 hours, which will be very hard for an active little guy. We'll learn more today. I have a feeling that Baby Einstein and Sesame Street will become a staple for awhile, since he won't be allowed to do much else. I keep thinking this will make post-op even harder than it would otherwise be, but we will do what we have to.

We also spoke to the Plastic Surgeon's office again. They are not going to cancel surgery at this point, even in the face of a daunting reflux problem, but we are all on notice that the success of the surgery is at risk and we need to do all we can to minimize the potential risk. It is a vicious circle -- the antibiotics are contributing to the stomach upset, but the antibiotics are necessary for surgery. The air in Michael stomach is causing some of the vomiting that is putting surgery at risk, but if we have the surgery, some of the air will go away because the palate will be closed and the air won't be able to go that way anymore. The G-tube is undoubtedly causing some irritation, but the first step to getting rid of the G-tube is getting Michael's swallow fixed, which means his palate has to be closed .... you see the nested circles.

We'll post more after we talk to Doctor GI. At the moment, we are about to try to feed Michael a full meal (instead of the 1/2 meals he has been getting since yesterday) to see if the Grumpy Medicine has had any affect.

Assuming, for the moment, that we will go down the road of keeping Michael on this Grumpy/No Sleep Medicine, and we have to have a feeding pump .... then MOM and DAD will need some help with TV programs that won't drive us NUTS to watch over and over. There is only so much of Elmo's friend Mr. Noodle that I can STAND in a given day. For awhile we can see if holiday cartoons will work, but if y'all have DVDs of fun TV shows you wouldn't mind lending us for a few weeks, I promise we'll give them back as soon as Michael is back to his usual smiling self.

More to come -- maybe even later today.

PS -- does anyone know if they sell videos or DVDs of "Bunnytown," one of the programs on Disney Playhouse? If someone has a few moments to search the internet for me, I would really appreciate it. Michael would like some DVDs of "Bunnytown" for Christmas.

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November 29, 2007

Thursday, June 17, 2010

Well, this one is up to you and the power that controls the universe. We've confirmed something that we had begun to suspect for the past few days: If we can't get Michael's reflux under control, there will be no surgery this coming month. The stitches are dissolvable, and stomach acid will dissolve them. You get the drift.

As you can imagine, this is hard news. We have tried all but the most desperate methods. Now, we are off to see the GI specialist again tomorrow, and in order to save the surgery date, we may have to put Michael on a feeding pump with an extra valve in it to let air out of Michael's stomach. We've talked about this before and said, "no" because it took us so long to get a fairly wireless kid, but now we may have no choice. In the meantime, we are trying to move Michael to eating every two hours instead of every four to see if even THAT helps. (Can you imagine feeding a 5 month old baby every two hours???) If it weren't for surgery, this would not be an issue because Michael is gaining weight like a champ. So, a problem that shouldn't be a problem now IS a problem. It figures.

At times like this, we try to remember the adage from one of our favorite fiction writers, "The world will go as it will, and not as you or I would have it." Acceptance, though, is hard, and if we do have to postpone surgery for a few months, we will be crushed.

Please pray for us.

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November 28, 2007

Wednesday, June 16, 2010

Actually, TODAY was the day Michael got his bigger trach. Dr. K___, the pulmonologist, decided to wait one day so that Dr. B, the pediatrict ENT could do it. (Not to be confused with Dr. ____, the regular ENT that will be doing Michael's ear tubes....) We think Dr. K_____ just wanted to make Dr. B the big meanie.

Well, it was a rough visit, and Michael is having a rough afternoon. First came a scope with a little camera down Michael's nose to see his trachea, then came a scope down Michael's trach tube. Michael was pretty mad at this point. It took a Daddy hug to keep him holding still, and a quick consult with Big Bird was necessary to make sure that they were both still okay. (They were.) (Big Bird has a trach, too, and he gets all the same shots and yuckies that Michael does, and they commiserate.)

Well, it didn't end there. We packed up, went to another room, and Michael got to try on a kiddy straight-jacket. He thought it was funny at first. They strapped down his little hands, and he grinned. They fastened his feet together and then began wrapping him in giant pads kinda like a straight-jacket (really!). He thought it was pretty funny until he realized he couldn't move, and Mommy and Daddy were on the other side of the room. Then the anxiety began. OH NO, ANOTHER PROCEDURE!!!

Out went the old trach, in went the bigger one, and then came all the coughing. And coughing. And coughing. And coughing and wheezing. We were told that increased secretions for the day are to be expected. (I find this hard to believe given that my child coughs up a plateful every 5 minutes!) And, we were told that the coughing and wheezing was "okay". (Glad they said that, because he sounded horrid!)

As if this indignity wasn't enough, we went back to the other room for another quick scope down the trach to take a look. Oh the suffering! This one was quick, but NOT quick enough for Michael! Mommy came and got him and snuggled him while he told her all about it. He cried for nearly half an hour, and Mom carried him to the car while Daddy carried the car seat. He thought about not crying, and then he would start up again for the sheer indignity (plus, the air conditioner wasn't working in the building, and it was HOT!) We finally stopped crying altogether when we got outside and the cool breeze drifted by, and we even had a smile for Mom by the time we got in the car.

(For those of you in the frozen north, it is still pleasant weather here ....)

So, Michael fell asleep on the ride home and is now home in his swing, having a meal and wheezing. Hopefully he will feel better soon. He does sound better, despite the wheezing, but the coughing is hard to listen to. Michael already had a nebulizer this afternoon, and we've decided to let Michael's friend "Blue Hose" be with him for the rest of the day to help moisterize his trach area and give him a break. Oral feeding is out of the question for the moment because of all the coughing. In fact, even the tube feeding isn't going well because of the coughing and the leftover air from crying, but we are getting it into him slowly. I think it could be a long afternoon for the M-man. But, as we keep telling him, tomorrow will be a better day, and this should help with all the secretions by making them more managable. (WE HOPE!)

Rough day. And still, the little man will smile.

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November 27, 2007

Tuesday, June 15, 2010

Well, today is the day Michael gets a bigger trach. We have mixed feelings about this, but it needs to be done. The remaining question is what kind of trach? Will it be one just like the one he has, but bigger, or will it be a much longer one that sticks out much further and has a spring on it? We will have to let you know. Again, we have mixed feelings. I have to admit, I'm pretty anxious.

It has been an interesting period of time for us, nursing wise. We are precertified through Christmas, but staffing hasn't been as easy as it was in November. We have a new day shift nurse who can come some days but not all, and our weekend night shift nurse is not allowed to work anymore (she's 8 months pregnant) so we have lots of new people coming in. And, Michael is now old enough to really notice and to object. We can't just let him wake up to a new face in his room without risking some serious tears and anxiety, poor little guy.

Our Saturday nurse couldn't come because her car wouldn't start. Our Sunday dayshift nurse couldn't come because of a prior commitment that she had overlooked when scheduling. Our Sunday night shift nurse couldn't come because she said she was getting sick. Our Monday dayshift nurse called in sick, but she was willing to come with a mask and gloves. We said no. Of all these, only the Monday nurse was able to be replaced. *sigh* MAdam ark and I learned that our hideabed couch is really VERY comfortable -- more so than some of our spare beds -- so you can't fool us anymore when you come to visit!! Anyway, we spent Sunday night in the family room so we could get up with Michael when the monitor rang every 15 or so minutes. Long night, but a lot easier than trying to stay up with him in shifts when there is only two of us around to split the shifts.

Couple that with Michael's ever increasing suctioning requirements (about 3 times in ten minutes when he is awake) and you can understand why we are looking forward to the HOSPITAL in December. Hopefully palate closure surgery will show some outward physical improvement in Michael's secretions and his ability to eat. It would be nice to feel like we were swimming laps again instead of treading water. (I have to work on these analogies -- if you swim laps, aren't you backtracking over the same spot again and again? I need to think these things through a bit better, I guess!)

On the flip side, we saw the Pedes yesterday for a checkup. Michael is great -- 13 1/2 pounds and 25 1/4 inches tall. The doctor watched him rolling around and said he has all the muscle strength and coordination to roll from back to front whenever he feels like it -- we just have to find something to motivate him appropriately. I forsee that his toys will be just out of his reach for awhile....

We are eagerly looking forward to the time when we can open our home to visitors again and begin taking Michael out into public. Poor kid has been sick almost all of November, and we just can't risk more contaigon. How about a nice Valentines Day party?

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November 25, 2007

Monday, June 14, 2010

In the spirit of Thanksgiving, we felt compelled to share with you some thoughts. This holiday season has been an emotional one for us, and it is sometimes very, very hard to keep focused on what we have to be thankful for. So, to help us remember, we offer these words:

We are thankful for our friends and family who love and pray for us. We are thankful that Michael has a future that is full of health and hope. We are thankful for our parents and Aunt Louise who have come to stay with us in the past months. We are thankful for your emails of hope and encouragement. We are thankful for the gifts and cards you have sent to Michael and to us. We are thankful for the E___ family who are tremendous role models. We are thankful to live in an area where Michael can have surgery so quickly. We are thankful to live so close to specialists who know how to treat Michael. We are thankful for our employers, who have been more understanding and supportive than you can possibly imagine. We are thankful for our friends who have more pain than we do who still have the strength to listen and advise. And most of all, we are thankful for all of you who watch and read our story and help carry us through the times when our hearts are heavy, our bodies are tired, and our will is flagging.

We wish we could have had a professional baby picture of Michael in the hospital. We wish we could take a picture of Michael crying on Santa’s lap. We wish we could give our son a bottle and have him drink it. We wish we didn’t have to have a joke about Michael's friend “blue tube” that follows him wherever he goes. We wish we knew what to write in his baby book on the pages that assume our child was healthy and whole and home in three days. But, we know that the tide will turn and that in the end we will all be healthy, whole, and stronger for these hard times.

Seeing kids in strollers at the shopping mall or grocery store causes pain. Hearing children laugh on holiday commercials on TV causes tears. But then, seeing Michael smile and giggle causes joy. Watching him explore his world brings smiles. Knowing that some day this will all be behind us keeps us getting out of bed every day.

In the meantime, our nanny situation is desperate, and if there is one thing we need more than anything else, it is an answer to this problem. If anyone knows a retired nurse or someone who wants to learn to care for Michael, please send us an email. In the end, the only job requirement is common sense. We don’t expect anything for free, and we will pay a salary with vacations and with all taxes withdrawn from the paycheck. Time is not on our side, and the only options left are painful and hard to contemplate.

Smile through the tears, and laugh through the pain because these things will always be with us. And, no matter how bad things are, they could always have been worse.

Happy Holidays, everyone. :-)

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November 21, 2007

Sunday, June 13, 2010

HAPPY THANKSGIVING EVERYONE! We hope your holiday is happy, healthy, and restful. We've got the "happy" part down, but "healthy" and "restful" seem a little bit out of reach today.

Hopefully today will be a better day .... Yesterday was pretty rough for all concerned. Poor Michael's tummy hurts from the antiobiotic and all the mucous draining. And, yesterday, the fates worked against his little stomach.

We knew we were going to have to rush to the pediatrician at some point to get Michael's Synagis shot as soon as they called to say it had arrived. It has been a long struggle to get the shot for Michael -- although this time it was not the insurance company's issue. We don't know WHAT it was. Synagis is an antibody drug that is given to kids that meet certain risk criteria so that they can have extra protection against RSV -- a deadly respiratory disease for fragile infants and toddlers. Michael does not meet the usual criteria (premie, below a certain weight, etc.) but he is a high risk baby and was approved for the drug without any problems. (The shots are, we understand, about $1000 a dose.) Unfortunately, his first shot should have been several weeks ago, but it was not sent from the pharmacy until yesterday. No one knows why it took so long, but as of Saturday the pharmacy was calling my work number for more information and asking me to call them back. With all due respect to my work colleagues, I am out of practice in checking my voicemail at work on a Saturday. By the time I got to it, it was Monday morning, and I was a bit annoyed. In addition to Michael needing this drug to help keep him safe, the doctors wanted two doses into him before his surgery, and the doses must be 28 days apart. As you can see, we were RUNNING OUT OF TIME! (The hospital is a great place to acquire RSV, as you can imagine!) So, long story short, we got the medication overnighted to the pedes office for Tuesday delivery. The office then called and said they could give Michael his shot if we came in between 11 and 12. Well, it was 11:00, and Michael had just finished eating. And having his antibiotic. And having his rather caustic vitamin. And having a stomach full of snot. (Sorry.) I knew this spelled disaster -- no time for burping, at least not enough! We got into the car, and sure enough, Michael threw up twice on the way to the doctor's office, and the second one was a BIG one. Then, while lying in his diaper in the doctor's office, he did it again. Again, BIG. So much for that meal. Poor kid was stuck on Pedialyte for awhile, then we worked up to one ounce of milk every half hour all night long. There doesn't seem to be any stomach virus -- just all that other "stuff". This morning we spread his breakfast out over a longer period, and so far so good....

The poor shots were no fun either. He had one shot in EACH leg, and they stung! There are moments (very rare) where the world is a little bit glad my son can't speak. If he could, you would have heard the screams in Fairbanks, poor little guy. But, he dozed a lot in mommy, daddy, and aunt Louise's laps throughout the evening in between suctionings, and he was still full of smiles and some giggles in between the coughs and tears. What a great spirit this kid has!

Hopefully today is a much better day, with less secretions, less coughing, less vomiting, and more SLEEP!

Hopefully our next entry looks less like a mother's blow by blow of her kid's puking! Sorry about that, but I know you all want to know how Michael is doing, and all he is doing these days is being sick.

HAPPY THANKSGIVING!

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November 19, 2007

Saturday, June 12, 2010

Hmmm. Michael's lingering cold has taken a turn for the worse, and we have another lung infection. We are treating it aggressively with antiobiotics, but if he doesn't improve we may move on to steroids. The goal is to get, and keep, him healthy for that looming surgery date! In the meantime, Michael is *smile*, *cough, cough, wheeze*, *smile!*. He is such a good natured baby.

We're still waiting for his first Synagis shot (antibodies against the dreaded RSV virus). The company that was to send the shot has not done so yet. It has been a nice game of phone tag and whisper down the lane to get this straightened out, but hopefully it is on the way toward being fixed. The shots need to be given 28 days apart, and the doctors want two shots in before surgery. I keep telling every clerk and nurse that I get my hands on that we NEED this shot in the next 48 HOURS to comply with the doctor's orders. *sigh*

As far as the Prevacid debacle goes -- I still have no idea why it was "confidential". The drug apparently requires a pre-approval. The pharmacy handled the pre-approval last time, but for some strange reason the insurance company refused to tell them what was wrong this time. I dare say it is more than I can figure out. I'm getting to know Michael's pharmacist "Doctor Bob" better than I intended!

Well, Michael says, "Hi" to everyone. He is having a ball of a time with Aunt Louise, who is staying with us for Thanksgiving. They have hit it off like old pals. She has been a trooper and wins the "special thanks" award of the week. (Who else but an aunt would clean off your dining room table from two feet of paper and crap when you ask????) And, she had her share of staying up with us when our wonderful weekend night nurse was admitted to the hospital on Saturday. (She's pregnant, and we hope everything is okay ....) Lucky Michael got to sleep on her lap during the middle-shift. He was coughing too hard to lay down after the midnight meal, and she made Michael's night by holding him for several hours. Lucky Michael!

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November 16, 2007

Friday, June 11, 2010

Well, it has been a day of good news and bad news and confusing news.

Good news: our nursing care has been extended to Christmas.

Confusing news: Michael's stomach medication has suddenly been declined by the insurance company for a "confidential" reason that they will not reveal to the pharmacy. I need to call someone on Monday to find out why. (?????????) Apparently the drug is not covered, but they won't say why, or why this is different from the refill we got two weeks ago. (This is Prevacid, for crying out loud.)

Bad news: We thought we had an agreement with a lady to be Michael's nanny, but we just got the contract returned in the mail with a note that she cannot accept our job offer. I really thought we had it this time, and once again we have to start over. We stopped interviewing because we had gone so far as to make an offer, but I guess we can't even do that. We'll have to keep interviewing until a signed contract comes back to us. The problem is that we are now under the gun for time, as the nanny really needed a good solid month in the house with Megan before sailing forth, and now that can't happen.

Well, as we have found so many times before in this past year, all we can do is hang on by our fingernails. Michael is not allowed in day care and cannot stay in a home without a care provider that is trained in care of a trach tube and emergency trach changing procedures. We will provide the training required, if only we can find the person willing to help.

Please -- if you have any ideas, we are open to them.

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