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.

November 6, 2007

Tuesday, June 8, 2010

Well, we're sick again. Yep. Again. That's three times since we came home, in case you were counting. This time its a "cold" so no antiobiotics. (I can't tell a cold from tracheitis, though -- they look like the same sick kid to me.)

We had to see Dr. O at the pulmonologist since our regular doctor was on call at the hospital. Dr. O was pleasantly surprised to see how well Michael was handling being sick, so that was good news. The better he handles illness, the less likely they are to want to wait to remove his trach if he is ready to remove it during winter (respiratory virus season). So, that is good news for us. The other plus about illness is that it brings out Michael's voice. (I have no idea why, but it does.) So, we're sitting around enjoying listening to Michael coo and whine at us. (Sounds horrible to say it that way, doesn't it?)

In the meantime, Michael is still struggling with swallowing. Sometimes he gets it, most of the time he doesn't. We have another speech appointment today, so we'll see what happens. I've been warned that this appointment is mostly "paperwork."

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November 2, 2007

Sunday, June 6, 2010

Well -- lots of little things. We learned from the interim speech therapist that Michael does NOT have an oral aversion. He wants to eat, but he really can't. He has an uncoordinated swallow because he lacks the correct muscles to pull things together. He managed it when he was smaller, but it gets harder to manage the bigger he is. So, now we have an elaborate mealtime routine to make him THINK he is eating, and he seems to be responding well to it. The good news on that front is that we should see a dramatic improvement after his palate surgery.

Funny thing ... we spent a few days trying to wean Michael from the "dumb green hospital pacifier" onto a more socially acceptable (Mickey Mouse) brand. Now the speech folks tell us that for Michael's unique physiology, the dumb green one is preferable. I hate the green one. (If you couldn't tell already.)

Adam and I also got training on Gtube replacements (!) (So now it will never happen again, right??) It turns out that the manufacturers recommend checking the water in the balloon that holds the Gtube in place about once a week. (So much I didn't know!) They checked it at the doctor's office earlier this week, and guess what -- it was only half full! Where did all the water go? Thankfully, they refilled it for us and it should be good to go for awhile again.

And, here is the blow of the week. Michael's regular day shift nurse has to take a training class for her other job, and she will be leaving us as the regular nurse starting two weeks from now. Michael, Adam and I are heartbroken and we don't know what we will do without her. Just when we feel like things are finally getting stabilized ....

Well, we need to roll with the punches and keep our chins up. What I can't figure out is why the little things feel like the heavy things. I think it is because the big things are too big to think about.

Thanks as always to all of you for keeping us in your thoughts and prayers.

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October 25. 2007

Saturday, June 5, 2010

WE HAVE A DATE! Keep your fingers crossed that we are all still healthy, but Michael is scheduled to be back under the knife on December 20th. What a great Christmas present -- a whole new palate!

It's funny, but this past weekend I found myself singing, "Because we need a little Christmas, right this very minute ...." How fitting.

So, the moral of the story is, if you are coming to visit Michael, PLEASE GET A FLU SHOT. Also, if there are sick folks in your house, we ask that you not visit. I realize this is a pain, but we must insist because we need to limit the things Michael is exposed to. With his open airway, it is way too easy for Michael to get sick.

On other news, we will be upsizing Michael's trach in a few weeks. He is switching from a Neo Bivona 3.0 to a Pediatric Bivona 3.5, for those of you that are curious. The "Neo" versus "Pediatric" tells you how long the trach is. The "Bivona" is a type of trach that Michael uses, and the "3.0" versus "3.5" tells you how big the airway is. According to the pulmonologist, Michael is doing great, and we will be starting experiments with the Passy-Muir speaking valve once the new trach is in. We'll have to keep you posted on that.

Thanks, all. Onward and upward.

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October 23, 2007

Friday, June 4, 2010

GOOD NEWS! Michael is heading for surgery soon! We are tentatively scheduled for palate closure in the first week of January, but it might be earlier. Michael is on the wait list for a spot on December 20, and we'll know by Thursday if the person already scheduled for that date will have to change it or will confirm it. And, Michael is also on the cancellation list to take any spot that opens up because another patient gets sick or whatever.

Basically, Dr D_____ thinks that Michael is big enough and strong enough that "there is no reason to wait." YAAAYYYYY!!!!! I'm sure we are the most excited parents to ever plan surgery for their kid! It will be a hard thing for Michael , but it really is the next step on his road to getting better. It will help his breathing, and it will really change the way he approaches eating. (And hopefully it will be a major improvement there, too, but we will have to see.)

We'll keep you posted!

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October 22, 2007

Thursday, June 3, 2010

I just wanted to let you all know that our nursing care has been extended for another month. This time, we got notice early enough that there should be no break in Michael's care. This is great news since we unfortunately had no help this past weekend. Sunday nurse had other committments, and our night nurse had an emergency and was not available. Thank goodness my Mom was here!

Michael and his parents had their pictures taken at Sears this Saturday, and he did very well. Better than we did, that is for sure!

This coming week is full of doctor visits -- four in fact, but hopefully we will have more progress to report after they are over. In the meantime, the kiddo refuses to drink by mouth, which is frustrating beyond belief. In an effort to stave off what seems to be a growing oral aversion, he is allowed tastes of baby bananas a few times a day, and he thinks they are GREAT! He is the first baby I've ever met who doesn't thrust his tongue out to reject solid (mush?) food. I swear, he doesn't even need a bib! Well, if it keeps him active in the mouth, we will do what we need to do. More on this as it progresses.

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October 16, 2007

Wednesday, June 2, 2010

Fun weekend! Michael had a great day at the craft fair. We met up with some of our friends that live in Front Royal, and Michael was the hit of the party.

One thing to think about is that this kid hardly ever goes outside, so this was a big deal on a lot of levels -- more than we quite realized, as Michael let us know. First, it was his longest car trip. Second, it was his first "cold" day outside, with a jacket and a hat! Third, it was his longest stint outside ever. (The world is bright, mommy!) In all, he took it like a champ.

The funny thing is, we've almost never taken Michael to a place where he wasn't the center of attention. When he went to the car dealer, his grandparents kept him entertained. When we went out to eat at Pizza Hut, everyone came over to "see the baby". You know the drill. But this time, there were lots of people walking by, and only a few of them came over to talk to him. He was sitting behind the booth, looking at all the people walking past, and doing his little "Hi, Michael!" wave. He does it regularly, but it is still a bit uncoordinated. Yet, he knows that is what you do to say, "Hi!" Problem is, no one was looking at him, and no one said, "Hi" back! He wasn't sure what was up with that, and he kept looking at me like, "What am I doing wrong, Mommy?" It was pretty cute.

There was one acquaintance of ours who did come up and talk and wave, and she kept saying, "It looks like he is waiving back at me." When we told her he was waving, she tried to tell us he was too young to do that. Obviously not!

Adam and Michael went to the pediatrician yesterday, and it still appears that Michael has had no ill effects from his trip to the ER last week or from the G-tube disaster. His stomach is looking great. Even better, the doctor doesn't think we will need the second round of antibiotics for the infection, but we need the pulmonology consult on that, too, before we decide. Way to go, Michael!

Next week is a busy one for us, with lots of doctor appointments, including the plastic surgeon, so we will keep you posted!

Finally, and best of all, Uncle Alan is breathing on his own now, up and around his hospital room, and back to his old rascally self. We are so thankful. I can't even bear to think about how close a call that was, and I have to confess that I was beginning to think we really were going to lose him. Thank heavens we didn't. Now we just have to focus on making sure that Lynn and Alan's adoption of little Catherine can be finalized and she can come home to her family.

OH -- PS -- I know there are some of you that want to know about kid-sweaters and other crafts for Christmas and birthdays but don't want to ask. As you might imagine, I have not had time to make a lot of new stuff, but Adam and I still have a fairly large inventory of things. If you are interested in anything in particular, give me a call or drop me an email and I'll call you. We would love to have the inventory moved out of our house, so you would be doing us a favor if we have anything you might want.

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October 12, 2007

Tuesday, June 1, 2010

Just a quick note today:

Michael is still recovering nicely from his illness. We have decided that, unless he takes a turn for the worse, we will try to visit Front Royal tomorrow. The nurse will be arriving here at 7:30 to help mom get all the "just in case" equipment in the car, along with the baby and all his usual stuff. Should be fun, although I will miss helping Adam at the booth. Hope it doesn't rain!

Anyway, Michael still goes through periods of loud vocal sounds. Yesterday he did it to nurse Angie while she was holding him and warming a bottle in the kitchen, and she was so surprised she almost dropped him! (She says she now understands why I was so alarmed last Friday -- it is unnerving to hear him the first few times.) He doesn't do it unless he is trying pretty hard, which generally means that he is upset, but he can do it.

Most of the time, though, Michael spends his day smiling and (I think) giggling. I do wish I could hear him, though. I'll bet it sounds pretty cute.

Thanks to all of you that have been sending gifts and cards and bringing food. As my sister says on her CarePage, there is so much comfort we get from your notes on the Message Board and your thoughtfulness. It really, really does make a difference.

I hope we'll see some of you tomorrow. Send your friends over so Adam doesn't have to pack too much stuff when he comes home!!

Best, Megan, Adam and Michael.

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