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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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