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.

October 11, 2007

Monday, May 31, 2010

Well, life is full of challenges, isn't it? Michael is doing well during this illness. We are quite proud of him. He is breathing fine and staying cheerful, but he has given up eating by mouth. It is frustrating and heartbreaking for us, and we are afraid that it is the beginning of an oral aversion that we will be spending years, if not his whole life, dealing with.

It may seem odd to know, but eating by mouth is a skill that if not used when very young goes away. Some kids with feeding tubes end up with a lifetime aversion to food and things in their mouths. Hopefully the speech therapist the County is sending out will be able to give us some ideas.

On to the childcare side of things. We have been so far unsuccessful in finding a nanny. We had several interviews, and a couple of great candidates. But we've been turned down twice by nannies we wanted to hire, and once by one we weren't sure about. For two of them, Michael was simply to scary to care for. One of them was even too afraid to tell us that while she was here, even though we asked her directly three times whether she was okay with the medical stuff or whether it was too much. Adam and I were really hoping to get someone in the home this month so that they would be comfortable to sail forth on their own starting in January, but we are starting to lose hope a little. The nanny agency has been helpful about it, but they are hearing from the nannies that because Michael has "medical issues" that we need to be paying more than we are offering. Adam and I don't want to be stingy, but we really don't agree that we are so far out of the right price range. After all, for the first several months, they won't be caring for him by themselves .... and he will be getting better and better as the months go on.

Which brings us to the nurses. The precertification of our nursing care ends on October 25. The recertification process begins on October 15. I'm honestly not sure what will happen, so I won't speculate. This, too, is frustrating and painful.

But, in the end, all we can do is be patient and trust that things will work out. After all, as one of my favorite authors often says, "The world will go as it will, and not as you or I would have it."

Adam will be in Front Royal this Saturday at the annual Fall Leaves Festival, taking our little craft booth on the road again. Please stop by and see him. We have not yet decided whether Master Michael will be making the trip separately with Mom, but he might be if the weather is nice. It is a long car ride for him, and we can't stay too long, but we love these things and want him to be a part of what we love.

Anyway, come on out and catch some of Adam's Hallowe'en pillows and get a head start on your Christmas shopping.

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October 10, 2007

Sunday, May 30, 2010

URGENT -- your help needed. This time it is Lynn and Alan's daughter who needs your help. And, this time, we are asking for more than prayers. We are asking for your action. [Author's note -- please remember that this is a reprint from 2007. Please do not call your Senators and Representatives, as they will not know what you are talking about.]

For those of you who might not yet know the story, Lynn and Alan are trying to adopt a sweet girl from Guatamala whom they plan to name Catherine. Right now this adoption is "pending" and is expected to be finalized early next year. But, the current government of Guatamala is planning to stop allowing all adoptions by US families as of January 1, 2008, including those that are in process. This means Susanna won't be able to come home. Her birth mother has already given up her parental rights, and Lynn and Alan are the only family Catherine has. (I'm sure I've got some of the facts a little bit askew, but you can learn more at the website in the next paragraph.) If her adoption is terminated, we don't know what will become of this innocent child. Guatamala simply does not have enough funds to support the 5000 children that will lose the only home they have if this situation is not fixed.

For those of you haunting this page daily, please check out www.jcics.org right away and look for information on the Guatamala 5000 and click on the link about what you can do to help. They are asking for your phone calls to your US Senators and Representatives no later than tomorrow (Thursday, October 11th.) and there are guidelines of what they want you to say. They are trying to get all phonecalls to occur within a 72 hour window that ends tomorrow. This is something real we can do to try to be sure Catherine comes home to Lynn and Alan. [Author's note -- again, this is a reprint. Please do not call.]

ALSO -- special request for folks in Florida, near Orlando. If you are a blood donor and are eligible to donate now, please donate blood and credit it to Alan ____. I understand you can donate at Florida Hospital or at any blood bank. Currently, Alan is getting more blood than is being donated back in his name, and this will continue until his kidneys begin to function better. This is another real, concrete way we can relieve the burden on Lynn and Alan right now while they are stuck in Florida.

Hugs to all of you, and thanks for everyone for your help. Please also share this story with your friends and neighbors and spread the word. I promise that we will return soon to the "Michael Story," but trust me -- this helps Michael. Keeping all pieces of this family together, including Aunt Lynn, Uncle Alan, and cousins Cori and Catherine, helps Michael.

Megan

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October 8, 2007

Saturday, May 29, 2010

Hello, everyone. I thought I'd drop you a quick note to let you know that Michael is doing fine. He is handling this infection well, which is great, great news for the future. We may or may not be upsizing his trach (which would stop his vocalizations) but that decision won't be made for a few weeks. It seems likely, though, that we will be getting a bigger trach at the next pulmonology visit. I will miss the sound of Michael's voice, but if it makes it easier for him to breathe and eat, I can't argue. He is sleeping a lot, but his coughing is improving, and he is still a happy baby. We watched Sesame Street this morning and had a good time.

Another side story -- D, the black and white cat, went missing for a while. Daddy thought he saw her when he came home from work on Friday and was wandering around the house looking for Mommy and Michael. (Car was there, carseat was there, food was left untouched in the bedroom, but no Megan and no Michael , and the diaper bag, suction machine, and emergency bag were gone as well. Adam was a little bit concerned ....)

Daddy spent the night in the hospital with Michael (Michael went to the ER sometime around 4:30, but we weren't admitted to the Pedes unit until almost midnight.) Mom came home and went to feed the cats in the morning. No D. That afternoon when Michael came home -- no D. Now it is getting alarming. Mom thought she saw a fuzzy cat running around the front yard when she got home in the middle of the night, but it was the middle of the night ....

Daddy went outside to call D. No answer. In a fit of real worry, he went looking in all the cat houses that Patches (the outdoor cat) uses. A minute later, in he walks with an armful of D! She had been outside for we aren't sure how long, but boy was she glad to see Daddy! We figure she must have slipped out when the paramedics came in, or possibly when the Home Care guy stopped by after we left for the hospital. We don't know. She is so terrified of the outside that we can't figure out what got into her to run "out" and not "in". But, she is back safe and sound, and we are so relieved. As a reward, Daddy took her to the vet. (Some reward, eh?)

I forgot to include our special thanks in the past few posts. Special thanks this time to the E___ family for helping me find Adam while I was watching Michael in the ER. Special thanks also to all of you who are praying for Alan and those of you who have reached out to Lynn on Alan's CarePage. Please keep it up. We need Uncle Alan around for a long time yet, and he is having a rough time of it in Florida.

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October 7, 2007

Friday, May 28, 2010

PART 2 -- read October 6 first.

We left our hero waiting for the ambulance to arrive. I have vague recollections of cleaning up the “to go bag” that spilled on the floor and starting to walk around the upstairs looking for my socks or shoes or something. I have a flash of walking into the bathroom and not knowing what I was doing in there, and Michael was in the crib whimpering. I said, “Michael, don’t cry,” and the operator kept saying, “no, I want him to cry so I can hear that he is okay.” I tried again to tell him that you shouldn’t hear a kid with a trach, but I’m still not sure he understood me. (I was probably not very clear.)

Anyway, the paramedics (6 of them) arrived. Despite my assurances to the 911 operator, I still think they thought the baby was not breathing. This part of the day is a bit blurry, but the short of it is they had no idea how to reinsert the GTube. They secured the giant catheter by using a ton of gauze around his belly, I gathered his things, and they carried him into the ambulance. (Three bags of stuff – diaper bag, emergency bag, portable suction machine.) He got to ride in a big-boy car seat with some blankets to help him stay upright. He spent the whole time STARING at me and saying, “ahh, ahh, ahh.” He would occasionally cough and wheeze from his congestion, and they couldn’t get an O2 reading, but he was pink. I asked if the pulmonologist could meet us in the ER, and about 1 minute out of the hospital, I finally made one of the paramedics understand what I was saying about the noise he was making, but then we were there.

Michael whined the whole way into his ER room, and wailed when his catheter fell off and when they inserted the new tube and tested it. (They tell me they see this all the time.) The ER doctor also gave Michael some sugar water to suck to distract him and listened to his breathing and vocal sounds. Turns out Dr. K_____ was already at home, and Michael had good O2 numbers, so he didn’t come in. We had to wait a few hours (okay many) for a dye test to be sure the tube was in correctly, and a chest X-ray that we were supposed to come in for anyway. While we were waiting, I tried many times to reach Adam , but no avail. I finally called our friends the E____ family, and they were helpful in agreeing to keep calling Adam's cellphone until they found him and told him where we were. The Doctor also suggested that Michael stay overnight for observation because he had a “rough day” (no kidding!). We agreed, spent the night, and came home the next day.

Michael has moved up on his football calls. He now calls illegal procedures and personal fouls on lots of things. For example, the other day Daddy called illegal procedure on Michael for puking (food wrong way), and a personal foul on Michael for puking ON Daddy. Michael called personal foul on Daddy for sticking the suction tube up Michael's nose to clean the puke. (It’s really more like “holding” – it happens all the time, but Michael felt that it was personal.) Mommy ruled that the personal fouls offset, and there would be a replay of mealtime with a thirty minute delay. (Michael also calls lots of personal fouls on Nurse Angie for tickling his feet and illegal procedures for being late with the food. I guess we need to learn “delay of game” next, eh?)

On Friday, we decided that it was an illegal procedure on the GTube for coming out, and a personal foul on Mommy for making it come out. The penalty speaks for itself. But, I’m glad it happened on my watch, because I know how easily it happened, and if a nurse had done it … well, I probably would not have understood how it was not anyone’s fault. Live and learn.

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October 6, 2007

Thursday, May 27, 2010

I hardly know where to begin! It’s that old curse, “may you live in interesting times.” The adventures of the past two days may take two postings!

Well, as you know, yesterday started out rough. We went to see Dr. C___, who diagnosed Michael with “tracheaitis” which is an infection of the trachea. The humidifier failure was at worst a contributor to something that was brewing. So much for the clean bill of health on Thursday, eh? It took awhile to get the antibiotic prescription filled (another trip to the specialty pharmacy) but Michael tolerated the wait. We had noticed some redness around his G-Tube site, and a small lump for a brief time in the morning, and I had been relieved for the antibiotics because it looked like another infection was brewing there, too.

We finally made it home, he got his meds, and the nurse left. I settled down to nebulize him and feed him, while waiting for the home equipment guy (G____) to come over with some new bottles for the humidifier. Apparently the equipment failure was due to some bad bottles which should have been recalled. Our lot numbers weren’t part of the recall, but the problem was the same.

Anyway, Michael was coughing up stuff and crying out loud. I suctioned his trach and started to feed him through the tube in his stomach. The phone rang, and G____ was on the way. Michael cried louder, and started to scare me with how loud he was. I have one clear memory of telling G____ that Michael was sick and upset and panicking, and I was starting to panic too. G____ said, “don’t panic.” Then Michael coughed BIG time, so I hung up with G_____, put Michael down to suction his trach again, and somehow in the process of putting him in his crib, the tubing that attaches to the button on his stomach got caught, and HIS ENTIRE STOMACH TUBE POPPED OUT OF MICHAEL'S BELLY. OH CRAP! (That isn’t really what I said.) This thing was shaped like a pacifier, and about that size, and it came out of a hole in his stomach smaller than the nail on my little finger. Needless to say, Michael was VERY unhappy! He cried and cried. I think the tube was on the verge of coming out anyway, which is why he was upset, but this was nothing compared to my shock.

Now, I knew this was possible. They told me that in the hospital, but no one told me how to put it back in. I knew it could be done, but I was looking at this balloon, and the little hole, and decided balloon A could not fit into slot B. I now know I should have taken a syringe and deflated the balloon, but live and learn. Thankfully, someone at the hospital had told me that I needed to get a special catheter into his belly to hold the hole open, or it would close in as early as 30 minutes. I ran to the closet, where the “to go bag” of emergency medical equipment was – it was unzipped and dumped all over the floor. I found the catheter, which is like a foot long, unwrapped it, and stared at it. Which end goes in the baby? No idea. I picked the rounded end – it looked better – aimed, and pushed. It went in fairly easily, but now there is like 10-11 inches of tubing sticking straight up out of Michael. Now what? How to I get this kid into the car seat? And with all that coughing (and my shaking), how could I make it to the hospital? All of this took maybe 5 minutes. It felt like 5 hours. Anyway, after arguing with myself for half an hour (or about 2 seconds) I decided to call 911, and they sent an ambulance over.

Well, there is a word limit on these [orginal Care Page posts]. I know you want to know the whole story, so let’s make this a short series. Suffice it to way that we are all fine, and we will pick up our story next time with Michael's trip in the ambulance.

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October 5, 2007

Wednesday, May 26, 2010

Well, it has been a nerve wracking morning. Somehow, the humidifier wasn't working right last night, and the weather today is heavy, and this has collaberated to mean a very bad morning for Michael and a scary day for Mom.

The humidifier was working last night, and it is working now, but at some point last night it stopped. Michael didn't give any sign of distress until he sat up for breakfast. At first he was fine with loose secretions, but then suddently it was coughing, wheezing, and some gasping. Suctioning him brought up thick, thick secretions that were hard to dislodge. He sounded like a kid with asthmatic bronchitis.

So, we called the urgent care hotline. No real worries at that time, but Michael did not improve the way he should have. We changed his trach and got some relief, but there was no blockage in the old trach, so we aren't sure what improved. Now, he is making all kinds of sounds with his vocal cords -- very unusual for Michael. A nyway, after numerous calls to various doctors, we're off to see Dr. C____ in about an hour and a half. The vaccination previously scheduled for today has been canceled, for the second time. Is there a message here?

We'll keep you posted. I'm sure things will be fine, but it is an adventure, isn't it? I think Michael was trying to be contrary, since he got such a clean bill of health yesterday from the lung doctors! (And that is what I THOUGHT I was going to be talking to you about!)

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October 3, 2007

Tuesday, May 25, 2010

Greetings, Michael fans!

Well, we've been "evaluated" by the experts. We've got some work to do. No one has said the word "delayed" to me, so I think we've got no major areas of gross motor development delays. We do have some concern areas, though. Michael has low muscle tone in his torso and a tightness in his neck that is affecting his desire to turn to the left and use his left hand. He is also showing the therapists that he is using excessive energy trying to breathe ... still. Even with the trach. The torso is related to that problem. We are ... disappointed with this news and will discuss it with the pulmonologist tomorrow.

So, we will have PT twice a month as soon as therapists become available.

As for speech (what ... speech for a baby? Well, speech means "eating" to a baby) we have eating issues ... big time. As I mentioned earlier, Michel has decreased his desire, and possibly ability, to eat by mouth. The therapists think that the extra breathing effort is interfering with his ability to coordinate the eating acts of "suck, swallow, breathe". Increasing torso strength should help, I am told by other parents. They are also seeing that Michael is refusing the bottle, batting it away, when we use the Haberman. He is not fighting the Pidgeon as much, but he has the ability to refuse to make the Pidgeon work right, and that gives him a different kind of control.

So, we have a lot of work to do, and they will send someone out weekly as soon as someone is identified to work with us. The short term goals are modest -- less than what we accomplished in the hospital, but at least we have help now. We weren't crazy -- things were getting worse, and the reflux medication didn't solve it like we had hoped.

That's our news. We'll keep you posted.

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October 1, 2007

Monday, May 24, 2010

Hi, all. Just a quick note to let you know that Alan has his own CarePage now. The name is [redacted]. Copy that in on the "Visit Care Page" page. Lynn has already posted an update telling everyone what has happened. Please let everyone know who might be interested.

Oh, one more thing. For those of you in Ohio who might have known my Dad's family from our time there, Dad's cousin D____ was killed in a motorcycle accident about the same day as Alan's heart attack. I can't recall if any of you "ohio folks" reading this knew any of that side of my family, but I thought I would let you know just in case. Sorry to continually be the bearer of such bad news. If you want to know more, send me an email to me, and I will tell you what I understand happened.

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September 30, 2007

Sunday, May 23, 2010

Hi, again. I just heard from Aunt Louise in Florida with a bit of an update on Alan, so I thought I would let you guys know what I know. Alan has been taken off the ventilator and his e.g. tube, and the tube in one leg has been removed. They are working to take out the balloon pump, and he is still on oxygen. (I think I have that all right.) He can now talk a little bit, but the doctors do not want him to strain his vocal cords. They have also said that he will need to be treated as an out patient for at least a week before he will be allowed to go home, and he will need to fly home when the time comes.

Unlike updates on Michael , I'm not having a dialogue with the doctors and asking questions, so I may not be as accurate as possible and Lynn or Aunt Louise may tell y'all something slightly different if you talk to them. I will do my best, though.

As for Michael, he had a great day playing on his play mat on his back and on his tummy for a little while. On Tuesday, Early Intervention is coming to assess his development. He will be physically delayed, we already know that, but we aren't worried. He will catch up, and he is already surging ahead in a few areas (as compensation, I suppose).

We have had nursing precertified for 30 days, so for the first time we have a consistent day nurse M-F. Her name is Angie. As for the nights, we still have no one Monday, Tuesday or Wednesday nights, but hopefully that will be corrected soon. Until then, or until my Mom comes back on October 15, we will take late night visitors. Let me know if any of you are insomniacs....

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September 29, 2007

Saturday, May 22, 2010

Hi, all. Here is the update on both Michael and Alan.

Alan is in the ICU at Florida Hospital, on a ventilator. We understand that he is doing well. He will be in the hospital for a minimum of 6-8 days and will have to stay in Florida for some time after that. Alan's mom is going down to Orlando on Monday. We may be opening up a separate care page for Alan so that everyone can keep up to date, but in the meantime, I will post here whatever I know. If another care page is created, we will put the name of it here on this page. In the meantime, I do not believe Alan can accept any flowers or gifts, as he is in the ICU. What I can offer is that if you want to send a statement of prayer or support to the family, type it in the Message Board on this care page, and we will be sure that both Lynn and Alan's mom get a copy of what you say.

Michael went to the doctor today and weighed in at 11 pounds and is 23 inches tall. He is doing wonderfully in the growth area, and after what I've been seeing on message boards from other moms of kids with PRS, we are blessed in this area. For those of you interested in learning a bit more about PRS, check out www.pierrerobin.org. Some of you have also asked for more information about clefts and why Michael has such breathing problems. Well, here goes part one -- about clefts. A "cleft lip" and a "cleft palate" are two different things that sometimes occur together. Michael has a cleft palate, which is a hole in the soft palate of his mouth and is invisible from the outside. If you look in his mouth when he yawns, you can see a large dark space where the "roof" of his mouth should be. (A cleft lip is a hole in the hard part of the palate and is visible from the outside.) Michael's cleft is large and is bilateral across the midline, which means that it is in the center of his mouth and is roughly equal distance on both sides of the center of his mouth. Some clefts are small or large holes on one side or the other. Kids with only cleft lips don't often have breathing problems or eating problems. But a hole in the soft palate means the mouth doesn't have the closure on the inside that it is supposed to. There is no "vacuum seal" for sucking, which can contribute to breathing problems. So, although Michael's breathing problems largely relate to other causes, there is a decent chance that once his cleft palate is repaired, he may be able to control his airway enough to breathe without his trach. Cross your fingers on that one, because we are very hopeful on that. Also, after his next surgery, Michael should begin to eat more, if not all, by mouth. Some kids with PRS have problems with eating for years or for their whole lives, and some have relatively few problems. We believe Michael will have problems until his cleft is repaired, and then he should have very few.

Well, I'm out of space. More later.

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September 28, 2007

Friday, May 21, 2010

A different kind of update:

For those of you logging in to read about Michael, I'm sorry. Today we are using [the original CarePage] as a way to reach friends and family of my sister Lynn and her husband Alan (I see all your email addresses, so I know this is getting to a large number of you.)

While on their vacation in Florida today, Alan had a heart attack. He has just come through a triple bypass surgery at Florida Hospital in Orlando (Main Campus). He is currently in the ICU. We do not yet know how long he will have to be in the hospital, but Lynn says the doctors will determine that over the next 48 hours. We also do not yet have any information about how serious the damage was to his heart, but we do know that he had the good fortune to be treated at one of the leading cardiac hospitals in the country.

I don't have a lot of details about what happened, but I do know that Alan was taken by ambulance to the Celebration branch of Florida Hospital and was then flown by medivac to the main campus. Lynn and Alan and Cori have friends and family in the area that are looking out for them. In addition to Lynn's aunt Louise, Alan's aunt and uncle are there for them, along with our close friend T____. Aunt Louise is spending the night with Lynn and Cori at their hotel, and after that Lynn and Cori will be staying with Alan's family.

When I know more, I will post it. I know the three of them and all of Alan's family will appreciate your prayers. This has been quite a shock to everyone, and I know to those of you who know Alan as well. (For those of you who don't know, Alan is a skinny guy in his early 40's who smokes, and Cori is their very charming 4 year old daughter. We might have expected any number of health problems, but not this one.)

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Setember 27, 2007

Thursday, May 20, 2010

Thursday:

Well, two nights ago (Tuesday night) Michael made his first trip to a restaurant. It wasn't exactly what we planned to do, but we ended up at IHOP at about 10PM. Michael was waaaayyy tired, and his car seat won't let him twist himself up in his "all night" sleeping position, so it was a long meal for him, but in all, he was a good boy. If he had working vocal cords, he would only have been whimpering and wailing a little bit, not shrieking all out.

Not much else to report -- we may have a small breakthrough on our nursing situation, but no permanent solution. More on this as facts become available.

Eating is still a royal challenge. Mom and Dad have tried again to use a Pigeon nipple -- it worked the first time we tried it (this time around), but not the second time. Michael liked it, but didn't get any food from it after the first attempt. We aren't sure what he is doing differently, but it is something. So, we're trying an enlarged nipple hole. It works, but that in itself seems to be creating a problem. Michael doesn't seem to like nipples that actually "work" for him -- only those that act like pacifiers. He prefers not to swallow if he can help it. Ugh.

Other than the above, there isn't much to report. More when we know more.

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September 24, 2007

Wednesday, May 19, 2010

Monday:

We had a nice trip to the new GI doctor today. Michael was all smiles and giggles all the day long ... until the doctor made him wait until 45 minutes after his afternoon meal time. Oops.

Well, the verdict is that we will try taking Michael off Zantac and onto Prevacid to try to get his reflux back under control. Zantac is known to be subject to increasing tolerance by folks who take it, and it looks like Michael may have developed one. It worked beautifully when he first tried it, but he has steadily been getting worse reflux-wise, which is typical of a tolerance. Increasing his dose helped, but not enough. It makes sense, so we'll see if Prevacid works. If not, the doctor has a few other things to try before moving to more drastic steps like pumped in feedings over longer periods of time (a big step backwards). Mom and Dad have a few new ideas we will try before we let him take that step (or old ideas, if you consider that they were Cousin Juliet-tested first, but for different reasons). We'll let you know what happens, but cross your fingers that this works, at least for a little while.

For those of you keeping track, this doctor clocks Michael in at 10 pounds, 8 ounces and 22 inches long. This is good news, as it means he has begun gaining weight again after his infection. The pediatrician should get a really good weight on him at our next appointment on Saturday morning.

On a completely unrelated medical note, we will soon have to take our cat D back in to the vet for more cancer screenings. She keeps testing positive for high calcium in bloodwork, which is an indicator of kitty-cancer. We have had some X-rays done, and bloodwork, but no explanation for the calcium level. I guess no news is good news, but it is time for another checkup. It may sound silly, but if D comes down sick, too, I think it would break our hearts. She has been Adam's special kitty for several years now, and she is very much a part of the family.

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September 21, 2007

Tuesday, May 18, 2010

Friday:

Hi all. Today has been a "most fun" day. (Note the sarcasm.) We had no nurses the past three nights, and family and friends have been helping us to watch Michael. Nonetheless, the reserves are getting a bit low. Michael, per usual, decided to keep Mom on her toes today by having out-of-control reflux, including a fair amount of puke today. No vomit is fun, but it is an extra bit of non-fun when a trach tube is involved, because we have to do our best to be sure he doesn't get anything into his breathing tube. The worst part is the screaming pain he has been in periodically today. Like all reflux-y babies, it is heartbreaking to see ... those big blue eyes pleading with Mommy to make it stop hurting. Mommy, unfortunately, is out of ideas. So, we go off to a new doctor on Monday. This time it is a pediatric GI specialist. Hopefully he can help us get this problem under control so that Michael's poor little tummy feels better and he can eat all he is supposed to without pain or (much) puke.

On a lighter note, when Michael isn't crying, he is usually laughing. He smiles all the time, and that is quite an uplift. It reminds us of why we are doing all this.

We just learned a few hours ago that our approved nursing hours have been extended until October 8 at 16 hours a day. Now if only the nursing agency will be able to staff it.... If not, well, we are open to suggestions.

Special thanks today to the E___ family, for their ever-present support line and implicit understanding (having been there themselves!) Today you were the glue to help us not unravel too far.

Thanks again, y'all. Hopefully we will be able to soon write how much better Michael is feeling. In the meantime, he is napping in the warm lap of Grandma. He is planning on rooting for PSU tomorrow in the PSU-Michigan game, but he has told me that the Michigan rattle from B___ and D___ is still the coolest one he has because it is small enough for his hands to hold. We've told him that when he is bigger he will be grown up enough to have a PSU rattle -- much better.

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September 19, 2007

Monday, May 17, 2010

We thought we would let you know that Michael continues to feel better. He doesn't have a very reliable hunger mechanism, but his appetite is coming back , so he is starting to eat a bit more by mouth then he was last week. Because of gas pains, Mcichael still is not taking as much food by mouth as he was consistently doing in the hospital, but we are hoping to get back to that eventually.

We have been living downstairs a great deal of the time, as we have found it a lot easier to care for him in the family room. It is easier to stay awake with the TV and with the kitchen right there. (We're still trying to organize the new kitchen, which is absolutely wonderful. It was a pain to live through the remodel, but it was so worth it!)

Michael's last pediatrician appointment showed that he has not gained hardly any weight -- within the margin of error. But, the doctor thinks that it was because of his limited eating and increased vomiting while he was sick. We fully expect the weight to continue to rise starting with the next visit.

In the meantime, Michael continues to smile, and he has started to laugh regularly. We have a lot of fun doing the football ref signals. Other babies learn "sooo big." We learn "touchdown!" It makes Michael smile. We also do "first down," "face mask," "time out," "start the clock," "illegal procedure" (which makes him laugh!), and a few others.

The most exciting (and terrifying) thing happened just yesterday morning. It is scary, and a bit gross, so the following paragraphs may not be suitable for all readers. Every Tuesday, Adam and I need to change Michael's trach tube. I removed the old trach tube, Adam inserted the new tube, I reached over to hold the trach in place while Adam began fastening the foam ties. I was just thinking, "that was easier this week then the last few weeks," when Michael puked all over everything. Here I was, holding his trach tube in place, with vomit everywhere -- pooling at the hole in his neck, dripping into his trach tube, just everywhere. Yikes! I immediately began yelling for the nurse to help. We had to suction his trach tube, suction out all the vomit on the outside of his trach near the hole in his neck, cut new foam ties because the old ones got soaked ... it was scary. The nurse didn't have her glasses on, so she was having trouble fastening his ties. We traded places so I could try, and I could hardly fasten the ties myself because my hands were shaking so hard. I kept saying to myself, "if I can get these ties fastened, we can let go of his trach." My hands kept shaking for over an hour.

Michael had the best attitude, though. As soon as all that offending milk was out of his stomach, he just smiled and smiled... kids are so resiliant.

On a different note -- we are behind on our "special thanks" list. Thanks to everyone, as always. But, special thanks this time go to Uncle S for helping Adam this past weekend while Megan was away. Also, thanks to K__, J___ and I____for staying with us last night and tonight to help watch Michael through some of the nights without nurses. And, thanks to Grandma and Grandpa for coming to stay with us for awhile to help keep Michael constantly supervised while we approach our next nursing expiration date. And, last but not least, thanks to all the wonderful folks at Megan's law firm for all their kindness, support and flexibility. Without your advocacy on so many levels, we would be truly lost.

Two last quick notes. First to the folks at the church, if you are reading this, we do still have your dishes and we will be bringing them back. Second, to those of you who have asked for more information on cleft palates and how clefts can relate to breathing problems, I will be answering you as soon as I can.

As always, best wishes to all of you and much thanks for keeping us in your thoughts and prayers.

Love, Megan, Adam, and Michael.

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September 16, 2007

Sunday, May 16, 2010

Sunday night:

It's Sunday night. Michael is doing much better. He developed an infection last week around his G Tube site, along with some "crackling" sounds in his lungs. In general, he had a crappy week (or, more truthfully, he made our week crappy). His eating declined, his puking increased, and we were all grumpy. But now, after a few days of antibiotics, things are looking up. He is showing signs of appetite, his belly looks much better, and puking has decreased. He still isn't back up to eating what he was before he got sick, but we'll get there. Sick kids are always fun.

Nursing scheduling does not look good for this coming week, our last week of approved nursing care (unless we get another extension). We have no night nurses all week, except maybe one on Monday and Friday, but that is doubtful. As far as day shift goes, we only have coverage through Wednesday, and then nothing until Sunday. It is going to be a long, long week. Hopefully something will come through.

In all, Michael is doing well -- much better now then last week. He is smiling, happy boy again, and that is a very good thing.

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September 6, 2007

Saturday, May 15, 2010

Thursday:

Not much new to report. We just wanted to let you know the current insurance situation. Michael has been certified for an additional 19 days of nursing care at 16 hours a day. The decision came in at 5PM on Wednesday night. The nursing company pulled out all the stops to try to get a nurse in place for Thursday day and night shift, but they were not able to. Thank goodness for ESPN Thursday night football to keep us awake for awhile, and thank goodness for Megan's mom, for all her help. She is staying for a little while to try to lend a hand while she recovers from her knee surgery (which went very well, by the way).

For those of you who have asked -- yes, we are accepting visitors. And, we welcome phone calls. It is really hard to reach for the phone and dial anyone by the time the evening rolls around, but we do enjoy talking to folks who give us a ring. It helps keeps our spirits up, because despite how wonderful a baby Michael is, this whole situation is daunting, and some days it is hard to smile.

And, yes, we are still accepting meals. They are a big help, and we are grateful. We don't know how we will ever repay all that everyone has done for us, and we are sorry that we keep asking for more. There is a light at the end of the tunnel, and we will get there someday.

Thanks again, Adam, Megan and Michael

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September 4, 2007

Friday, May 14, 2010

Another week. Hard to believe. Michael now weighs 9 1/2 pounds. We are trying to fatten him up for his next surgery, but instead of getting fatter, he keeps getting taller! He is now 22 1/4 inches tall.

Michael has been taking nebulizer treatments three times a day starting last Friday, and it has made life a little more interesting for Mom and Dad. Not only do we have another procedure to do with him three times a day, but also the procedure has changed Michael's secretions and what he sounds like when he is "normal". Before now, Michael's "normal" was thin, watery secretions that needed to be suctioned before, during, and after each meal and every time he cried. Now, his secretions range from thin and watery to extremely thick, and his suctioning schedule is more random. The big difference is that he has copious secretions after the nebulizer and can remain "clear" for anywhere from minutes to hours afterward. To make matters even more interesting, Michael is trying so hard to make sounds any way he can, so he continues to use these secretions to communicate. It is hard to tell when he is trying to babble with his gurgles, and when he needs to be cleared. (And it doesn't help that Mom had one day where neither suctioning machine was working quite right, so we could never get him as cleaned as we wanted him to be (and now, of course, we worry often that it is happening again!))

Michael is a sweet and happy baby who smiles all the time. It makes up for the sleepness nights and the added non-new baby difficulties like last Saturday, when the power went out to the house at around 9 PM. Adam was out of town, so Megan and two friends worked to pack up all of Michael's necessary things so we could go to a hotel room. (We called the power company and the doctor and decided a hotel was safest.) We packed up everything that wasn't still attached to the baby, which took some time. Then Megan called a nearby hotel, to confirm they had a room and power, and while she was speaking to them, the lights came back on. (Yay!) Well, it came back to most of the house. As it turns out, there was a problem with a shorted "neutral wire" in the fuse box that was not diagnosed and fixed until late Monday afternoon, so Michael has been living in the family room for four days. It has been an adventure! Cutie Michael just smiled through the whole thing. He didn't miss his room one little bit.

Thanks as always for folks who have been bringing by food and coming to help get Michael out the door for doctors appointments and stuff. Thanks also for all the folks calling to check in on us and praying for us. It is hard to name everyone, but special thanks this week to K___, J___ and I____ for helping Megan out on Saturday during the power outage. We are so glad you were here with us.

For those of you keeping track of our insurance situation, we have no news to report. As of this time, our nursing care ends on Wednesday.

On a happier note, Michael wants you all to know that he is cheering hard for Penn State this year, and he hopes you will all do the same. WE ARE ... PENN STATE!

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August 29, 2010

Thursday, May 13, 2010

Wednesday:

Well, Monday and Tuesday were a bit of an adventure for us. After the nurse left on Monday, Michael had ... a spell? We aren't sure what it was, but he sounded off on his O2 monitor every minute for 40 minutes. This was not one continuous alert, but repeated alerts where Michael's O2 levels would drop too low, he would recover, only to drop again. This is not uncommon for short periods of time, but 40 minutes is unusual. We called the emergency after hours line at the pulmonologist (as well as the insurance company) and Megan had to decide whether to take Michael to the emergency room or wait until the next day to see the doctor. It was a hard choice, but we thought it best to wait. We had no night nurse Monday night, though, and Michael continued this breathing pattern almost the entire night. A few times we almost did pack up to go to the hospital, but in the end we stuck it out to wait for the doctor. Needless to say, only Michael slept on Monday night.

The doctor is not entirely sure what triggered Michael's O2 levels. It may have been related to his increasing reflux, or he might be getting sick. They tried a nebulizer treatment, and it seemed to have beneficial effects on his lung sounds. The pediatrician tried another one on Wednesday, with comparable results. So, this will be a new regime to add to our daily routine, along with a new reflux medication added to the one he already takes.

In the meantime, Michael is sleeping soundly today. He is almost lethargic. This may be more of the same or it might be that he is relaxing because of the benefits of the nebulizer. We will have to wait and see.

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August 28, 2007

Wednesday, May 12, 2010

A Brief Reprieve:

We have a bit of good news. While we are still waiting for word on the result of our appeal to extend our nursing care beyond September 5, the insurance company has agreed that the care can be 24 hours/day (instead of 8) from now until the 5th. The nursing company is working hard to staff the extra hours, and we are grateful for the chance to have the skilled help. As it seems like we have said so many times, the fight isn't over. The deadline still looms, but we are hopeful that this is a sign of more good news to come.

Thank you all for the emails and calls. We know you share our frustration and concern for Michael's well being, and it is a comfort to us. We especially appreciate those of you who have called to ask to be trained in caring for Michael so that we have more hands available if we lose the appeal. Your generosity is deeply touching. We know that no matter what happens, Michael has a very large fan base who will rise to the occasion, and it is awe inspiring.

All our love, Adam, Megan and Michael.

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August 27, 2007

Tuesday, May 11, 2010

Well, its Monday. Tomorrow is our last day of 16 hour nursing care. Then we have a week of 8 hours, at night. Then if the insurance company has its way, we will be cut off. We are doing everything we can think of, and we have called in all the resources we can imagine, but so far no luck. We aren't giving up though.



We'll keep you posted, but if we lose the nursing, a lot will have to change for the next few months. Michael cannot be unobserved because of his inability to cry and his risk of aspiration if he vomits because of his reflux. It means that when there is no nurse (like tonight because she is sick) there is not a lot of sleep going on for Mom and Dad. (And you thought it was hard to take a shower with a typical baby in the house, eh?)



Thank you all for your calls, thoughts and prayers in this difficult time. At the end of the day, he will be well, whole, and ready to take on the world. We just have to get him through the next 8 months or so. In the meantime, at least he is home here with us.




All our love, Megan, Adam, and Michael.

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August 19, 2007

Monday, May 10, 2010

Sunday:

The past two days have been a nice breaking-in period. We are getting used to Michael and the day nurse, and both of them are getting used to us. We had a minor equipment malfunction Friday night, which we repaired after a call to the equipment company at about 10:30 pm. It was a challenging night for Megan and the night shift nurse, and there are some communication gaps that need work with that particular relationship. Live and learn. Satuday night and the coming Sunday night are "nurse free" because the weekend night nurse had a family emergency. (Mom, Dad, and Michael did fine on our own with friend T____ to keep us company.)

We then had a bit of a change of equipment here in the home on Saturday, after a call to the doctor that things were "not right" with Michael. His trach was too dry, there weren't enough secretions, and he couldn't really cough anymore. Part of this was carry over from the equipment failure the night before, but he just wasn't recovering as well as we would have liked. The pulmonolgist on call was not one we knew, and we were a bit anxious that this was not an appropriate "emergency" call, but we made it anyway. Turns out, the pulmonologist was very nice, and he thought our call was quite appropriate. He ordered the new piece of equipment (a heater for the humidifier to help Michael adjust to how dry our house is, which we hopefully will not need too often), and he modified some of the written orders to the nurse so that Michael could be off his humidifier (and hence out of his room) more of the day. We were pleased that Dr. F____ asked to talk to the nurse for an opinion of Michael's condition on an absolute scale, without regard to his prior behavior/condition, and also listened to Megan's concerns that there was a change from Michael's prior condition. He applauded Megan's maternal instinct that "something wasn't right" and encouraged her to keep listening to it. (A HUGE relief to the anxious parents.)

On Sunday, Michael challenged Aunt Lynn to keep the sleeping baby awake during lunch, and challeged both Mom and Dad about whether he would give in to sleep and stay willingly in his crib. It isn't clear who won the battle of wills, other than that food was eaten, and sleep prevailed. We have a true stubborn man on our hands.

In all, a learning experience. Tomorrow is the first of many doctor appointments, which Megan, Adam, and the nurse will all attend with Michael.

I know you all want to hear a lot about Michael, but I hope not to make this a forum on his diaper production and eating schedule or what will undoubtedly be a test of everyone's will. It would be the height of conceit to think anyone really cares about the day to day aspects of raising a baby, other than Dad and Mom. We, of course, find these things fascinating. If I were to type in that kind of log, I imagine you would all tune out pretty quickly. So, I will try to keep this [blog] focused on Michael's medical life to keep everyone posted on how he is progressing and what the next steps are. This means less of a day to day journal, though, as much of the next weeks are focused on giving Michael as normal a babyhood as possible despite his restrictions and home medical equipment.

Love to you all -- Megan, Adam, and Smiling Michael.

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August 17, 2007 -- Homecoming

Sunday, May 9, 2010

Friday:

And on the 58th day after birth, Michael came home. Our little boy is finally home. It is almost as if he knows and understands, because he has been smiling and sleeping all day. Our fussy, cranky boy has vanished. He woke up in his car seat, inside his crib, saw his new Mickey Mouse Mobile, and smiled. He even puked up a whopper of a stomachful into his crib a little while ago, and once we assured him we noticed and were cleaning it up, he began to smile.

Mom is still getting used to the idea of having a nurse around. I'm not sure what I'm supposed to do, and what he (the dayshift nurse is a man) is supposed to do. I'm not sure where I make the decisions and where he does. It will be a learning experience for all concerned. I know Adam shares some of the trepidation, but he and his brother are sleeping over at the zoo tonight, so it is not something he has tried to struggle through directly yet.

In the meantime, friend T is spending some time with us, to help us deal with our torn up kitchen, stuff we can't find, and a baby. K___ (the nurse) is helping us organize the baby's medical stuff. I hate that our pretty nursery has been changed to look like a hospital room, but there is no real help for it. He needs what he needs. I just really hope that he doesn't need it for years and years.

This past week has been really challenging -- we didn't expect that I would move into the hospital for 10 days and that Adam would have to juggle the necessary tasks of the home and the construction work with visiting Michael and me. One thing was an unbelievably big help, though, and that was the wonderful dinners, every night, provided by our new friends from [United Church of Christ]. Honestly, we ate far better then if we had been at home with our brand new kitchen! The nurses and techs at the hospital were always commenting on how well we were eating. Adam and I can hardly believe our good fortune to have found such a wonderful and caring group of people, and we are overwhelmed at how they have reached out to us. We are almost perfect strangers to the congregation, having visited only a handful of times before learning of Michael surgery and calling Pastor J___ to say, "Please help." It didn't matter how new we were, though, and we don't have words enough to express our thanks.

I can't possibly thank all those who deserve our thanks, but our friends and family have moved mountains for us and for Michael . From the warm messages here [on the original Carepage], to the errands on our behalf, to the visits and calls, it has all been a rock to us. Again, words are not enough. Suffice it to say that we have never before been in such need, and we have never before seen such giving spirit, and we are touched beyond description.

The reality-story of Michael will continue as we move toward his cleft palate surgery in 4-7 months.

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August 15th, 2007

Saturday, May 8, 2010

Wednesday:

Short and sweet. I came home last night to get some real rest, and I'm on my way back in a few moments. Michael is doing well. He is a bit anxious about new things and people in a way we find sad (what are YOU going to do to me?), but we are helping him learn that the world can be a gentle place.

The latest is that we will be home on Friday. The insurance situation is improving, but we still have work to do. Adam and I are so grateful for all the moral support and offers of help. You all have some pretty great ideas. The folks in my law firm share your indignation and fury at the situation Michael found himself in, and they have been instrumental in making a difference. I won't go into any more detail than that, because, as I said, the fight isn't over.

Love you all, Megan, Adam, and Michael.

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August 11, 2007

Friday, May 7, 2010

Saturday morning.

This entry will make you angry -- be prepared. Michael is caught in an insurance nightmare that we are hoping desperately will come to an end on Monday. As you know, Michael needs to be on 24 hour nursing care most days and all nights for the hospital to discharge him. The insurance company has only pre-certified 5 days. Nothing will change with Michael in 5 days, though. In the meantime, the hospital has been trying to staff the 5 days, but the preferred in-network provider will not take on "temporary" clients, as they do long-term nursing only. The other in-network provider does not have sufficient staffing available. So, we still wait.

On Friday , the hospital began prepping Megan for what they perceive to be a pending battle with the insurance company to keep Michael in good care. The real rub is that the insurance policy is written for unlimited "medically necessary" nursing care, and if it hadn't been, then Michael would have qualified for Medicaid to pick up any gap in nursing coverage.

To make the morass bigger, the insurance company next denied Michael any further hospitalization. In doctor to doctor consults, the insurance company stated that the inability to staff Michael's nursing care was "not their problem".

Late Friday evening, a glimmer of hope came. Something finally worked, with a case manager from the insurance company finally calling to discuss the specifics of the situation and to say something other than, "I'm sorry, but I can't help you." They began advising on how to approach the appeal process, but then later called back and asked that we stop all formal appeals pending a review of the situation by the Medical Director first thing Monday morning (California time). We have not agreed to stop any pending appeals, but Megan and Adam have agreed to temporarily abstain from filing any new ones by themselves. We have, however, told them that the hospital's decision to pursue any pending or new appeals was out of our control.

And there we are, waiting again. The temporary case manager let us know that something we have done has made waves and got the attention of people who can make a difference. It really stinks that valid medical claims can be given appropriate consideration only when someone is not afraid to make a real pain of themselves. I know a lot of the progress came because Megan's law firm employer made a lot of phonecalls on our behalf, but for Michael , we will take any advantage we can.

We don't know how things will turn out on Monday, but you can bet we won't be giving up. Things look hopeful now.

On a brighter note, Adam passed his certification exam on Friday. He has been in classes all week, and now he gets to add some initials after his name.

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August 9, 2007

Thursday, May 6, 2010

So, you are wondering what happened to us? No doubt. Sorry about the delay. We thought the silence would be for a few days only, but hospital life has all kinds of unexpected surprises.

For example, last Friday, Megan arrived at the NICU to see Michael and found out that he was being discharged to the pediatric ward. Needless to say, we didn’t know this was even an option, and we thought we were staying in the NICU until we went home. So Friday afternoon, Michael and Megan both moved into room 543 in Pediatric South and met a whole bunch of new doctors. One of the blessings of the pediatric ward is that Michael has a room of his own, and parents can stay all day and all night with them. Visitation was generous in the NICU (any time but during shift change and when a procedure was being performed on a nearby patient), but parents couldn’t sleep in with their kids. Here, there is a sort of chair bed and bench. So, both Megan and Adam spent the weekend with Michael – our first time together where we could care for Michael as if he our child, and not one we borrowed from the nurses for a few hours. (Please understand – we love our NICU nurses, and Michael missed them very much when he went “upstairs,” but it was a long awaited day where Michael's daily routine and care was in the hands of his parents first and the nurses second. It is the other way around in the NICU, as it should be.)

I could go on and on about life over the next week, but I’m only allowed a limited number of characters per entry. [Author's note - the original Care Page had a 1000 character limit initially. This limit was later changed.]

Well, we were supposed to go home Monday/Tuesday-ish, if Mom and Dad could check off all the “training boxes” on the discharge worksheet, which we did. But, the home nursing care Michael requires didn’t come through. At first, the insurance company wouldn’t approve it, but they finally approved 5 days worth. Then, the in-network nursing providers could not provide sufficient staffing, and that is where we are. It’s Thursday evening, and we don’t have any idea when we can go home. We can go when the nursing agency can provide a sufficient number of nursing hours to satisfy the hospital, and not a minute sooner. (“Sufficient” is supposed to be 24 hours/day for 5 days, but the doctors will allow some gaps if they aren’t too big.)

So, here we wait. One perk is that Michael no longer needs to be hooked up to the leads. As soon as they are detached, Alex will be free! (Sort of.) What will be left is a pulse-ox monitor (measures oxygen saturation) during the night and/or when they come in to take his vitals. (It isn’t clear to Mom at the time of writing whether they will use the nighttime hookup all night or just at vitals. It’s a bit long to explain why.) Also, Michael has to wear the “blue hose” at night and in alternating 3 hour blocks during the day. So, there will be whole three hour periods during the day when Michael is unencumbered by wires and tubing. What a difference that will be!

Well, we’re out of space. More when we can.

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August 4, 2007

Wednesday, May 5, 2010

When things start to happen they happen very quickly. Michael is continuing down the path to recovery. Yesterday his feeds were upped to 70ml, 30ml of that 70 is to be done by the bottle and the rest by the G-tube. Depending on Michael's mood he can do the 30 in a very short time and sometimes even looks around for more. At other times (tired or angry) he will not do more than 5 and gets very upset that we are not listening to him.

Other good news for Michael is that he has been moved out of the NICU and is now in the pediatric wing of the hospital. This gives mom and dad the chance to show the hospital that they have learned how to take care of him. The hospital requires both mom and dad to show that they can handle all of the challenges that Michael presents on a day to day basis before they will fill out any discharge papers. This step looks very promising towards Michael coming home sooner rather than later. However since NO discharge orders exist mom and dad are continuing on a day by day evaluation.

Because of this new turn of events postings to this carepage may become less scheduled. We will continue to update everyone when there is more news and we have time to get home to access the carepage.

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August 2, 2007

Tuesday, May 4, 2010

Thursday.

Michael, Michael, Michael. He keeps things interesting, that is for sure. All day today, he has proved himself a championship eater. His 15 mls have gone down quickly, without a fuss (but with some pretty impressive burps). The schedule is that Michael is to eat 15 ml by bottle, and have an additional 50 by tube, for a new total of 65ml.

His nurse today said that she had to put him down in his crib in the middle of the bottle to attend to something, and he belched so loudly that everyone in the NICU stopped to look. There is a sign at Michael's bed that says "SHHHHH, please be quiet at my bedside. Michael." A cardiologist visiting another baby looked over and said, in response to Michael's performance, "I thought we were supposed to be quiet at that bed?"

But, tonight, at 8pm, Michael was playing and not eating. He had some burps, but nothing like the dayshift drama. And, his stomach was distended. They had noticed during the dayshift that his stomach seemed a bit large, but Michael had no symptoms of distress. At the 8pm feeding, though, Michael seemed to be in some discomfort. His belly was fairly turgid, so we stopped feeding. He did not burp, and the nurse called the nurse practitioner to take a look. His belly softened before she arrived, but she ordered an x-ray anyway to see if anything was going on. When we left tonight, the x-ray was taken but not yet read, and Michael's belly was soft, he was happy, and he seemed to be content. We'll find out when we call later on what was on the x-ray. We doubt they will see anything worth reporting, but we will let you know.

Tomorrow, Michael meets his new pediatrician, who will be coming to the hospital on normal rounds and will stop in to meet Michael . He is all set to help in the care and well being of the baby when the long-awaited date of discharge finally arrives!

More to come after we know....

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August 1, 2007

Monday, May 3, 2010

Wednesday:

More feeding today! Michael is allowed four attempts to bottle feed during a day -- at about 10-15 ml/attempt. The rest of his now 60 ml of food goes directly into his stomach. Mom got the first two bottles of the day. At noon, Michael was a champ and chugged 15 ml with little problem, but a whole lot of burps. The second bottle at 5pm was good but not quite so successful, as Michael couldn't seem to stay awake for the last part. He managed about 10 ml, which is all the doctors were expecting. Mom and Dad, however, keep telling Michael that he needs to stay awake for bottles, because most people have to eat through their mouths and don't have the luxury of sleeping while food pours into their stomachs. Interesting thought, though, isn't it?

Dad got the 8pm bottle, and again, Michael chugged a good 15 ml, with some huge burps. The last few mls were an exercise in keeping the baby awake, but we managed. Blowing on his face works wonders ... for a little while. (And for those of you who know Michael's cousin Lynn, we have been warning Michael that the ultimate baby wake-up call involves dunking his feet in the water, but he doesn't seem to care just yet.)

The nurse will give Michael his last bottle of the day, so we'll have to find out how that one goes later on. Who knows -- he may be eating it as I am typing. (Or, as the medical staff says, he might be "feeding" as we speak.)

Mom and Dad had their CPR training, and some more trach tube training today, so we're doing our part to get him home. 1-2 weeks is the target. We'll let you know when we know more.

Thanks again for all the prayers and good wishes. It truly keeps our spirits up knowing you are all out their pulling for us.

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July 31, 2007 -- Adam's Post

Sunday, May 2, 2010

Tuesday:

Today's Carepages Message is brought to you by Adam and the letter "B". Adam speaks:

Well, Michael had another great day. Several things were going on for the little guy today. First off he had a hearing test today. This was an interesting event. We were told that they hooked a couple of electrodes onto Michael to monitor the signal between his ears to his brain. Something that probably works better than telling him to push a button when he hears a sound. The final results from this test won’t come back for a couple of weeks but things looked good.

After that Megan got to give the little guy a bath by herself. Although the nurses are still quite protective of their star, so they kept a constant watch on mom. Michael did not like anything about the bath and fought mom the entire time. He did not relax until he figured out that mom was drying him off and that he was done with the wretched water thing… at least for now.

After the bath the speech therapist (does the feeding analysis) came by and made sure that Michael was still doing okay on his bottle feedings. Mom got to give Michael a bottle this morning. We are not sure if he had more milk or air during this feeding. He ate about 6ml of milk and was passing air out of both ends for most of the feeding. The only reason he stopped was because he fell asleep… probably because he fought so hard during his bath.

Dad got the second attempt of feeding Michael by the bottle. He did better than mom… he got Michael to eat almost 7ml….I take my wins where I can get them :). Again though we are not sure if had more milk or air as he was continuing his trend of passing air out both ends the entire time he was eating. Michael even burped so loud that the nurses and mothers on the other side of the NICU were wondering what in the world had happened. For those of you that are worried that we are not feeding Michael enough, he also still gets his regular feeding of 55ml by the tube going straight to his stomach.

As you can see Michael had a big day today. Let us continue to go forward down this road of healing.

"B" is for "Buuurrrrrrpppp!"

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July 30, 2007

Saturday, May 1, 2010

Monday Milestones:

Michael had his "video swallow" test today. He passed! What that means is that he demonstrated his ability to drink from a bottle without aspirating into his lungs. He tried several bottles, and the therapists will be working with him and with us on selecting a bottle that works the best and training us on how to use it.

Michael will not likely be able to use a regular nipple until after his cleft surgery. Cleft palates contribute to a "weak" suck, due in part to a lack of a good vacuum seal. Michael's tongue falling backwards does not help. The current bottle candidate for Michael is one called a "Haberman" which is a normal looking bottle, but it has a soft nipple with a variable flow and can be compressed by the feeder to help express the liquid from the bottle into the baby's mouth.
Michael took the test rather quickly. There was some pessimism that he would not drink easily because he has only had food by mouth a few times, but he performed like a veteran! (Mom got to watch.) We are proud!

Michael is also pleased with his performance today, and he enjoyed the field trip to the radiology room. He was well behaved, and did not fuss or cry from the moment he left the NICU until he got back. He was wide eyed and looking around. But, it was tiring to be so alert for so long!
Tomorrow is the hearing test. I don't think we can watch that one, but it would be neat if we could. They are hooking up electrodes to his head to read the reaction of his brain stem to auditory stimulae. All kinds of sci fi images come to mind....

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