Here We Go -- Originally Published December 20, 2007

4:54 AM:

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

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

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

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

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

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Mom Knows Best -- Originally Published December 15, 2007

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

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

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

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

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

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

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

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

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

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

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

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

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Getting Prepared -- Originally Published December 8, 2007

We saw the doctor yesterday. Here is the result:

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

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

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

I think that about sums up everything from the doctor.

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

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

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

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

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

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

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Rollovers -- Originally Published December 6, 2007

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

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

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

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

Best to all of you!

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