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

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

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

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

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

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

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

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

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

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

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

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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