Good-bye Beautiful Mic-Key G-Tube

After waiting all of 8 months for James' nice button Mic-Key G-tube we got to enjoy it for all of 8 weeks and now he has an even uglier long tube hanging off his belly again. It suddenly dawned on me that if I didn't show up with a Mic-Key tube on Thursday for his tube change then we would have to wait until the next time they changed the tube as this is not a tube that can be changed at home ... I'm usually more on the ball. I spent a good part of my time at home on Wednesday trying to see if I could get him a Mic-Key GJ tube, but there are only a couple places that deal in this type of medical equipment/supplies and a GJ tube is even less common then a G Tube, so nobody stocks them. In the end it didn't matter as the doctor who put the GJ tube in recommended that we wait another year before putting a Mic-Key. He said due to the design and size of James' bowel we would likely have clogging problems with the Mic-Key GJ. So ... at least whole year with big ugly tubes ... but, if this is going to help everything else it's not so bad afterall! :)

Thursday night James slept well ... except he needed oxygen again. By 11:30pm we had adjusted and moved him often enough to realize it wasn't helping and so we put the nose prongs back on. Before he was only taking 50-75ml of oxygen when hooked up ... this is really just a whiff of air and what they use on neonatal babies ... but it works for James. This time he needed 160ml ... still not really much, but more then what we've been getting by on. He slept after that and unfortunately woke up earlier then I had hoped ... but at least he had to go down early this time so I didn't have to distract him from food too long ... it being over 24 hours since he had eaten and absorbed only a small amount of formula (he threw up everything he ate yesterday afternoon, to the point of drive heaves) he was rather hungry.

They came for him just before 9 and of course he knew something was up, but remained relatively calm, although constantly asking me to confirm "no hurt". It's hard to answer that one honestly ... really he won't be hurt, he'll be asleep ... but since hurt to him seems to means any trauma then I'm lying to him. I held him while they gave him the initial sleep medicine through the IV, I like this way as he's still comfortable in my arms and not all worked up because they've taken him or made him lie somewhere. I left the room as they tried to stabalize him since he was kicken and squirming and trying to get off the bed ... doesn't this sound like what we went through a week ago.

The procedure is actually quick ... I feel asleep while waiting, but it took them about 45 minutes before they came out to confirm it was done. I didn't think too much of this timing, even though I knew that the actual procedure only takes about 10 minutes ... but they had to put him under so I expected it longer then just 10 minutes. The nurse came out to let me know that he was done, she told me there was absolutely no way we would even have been able to sedate him the day before as it took almost adult dose to keep him asleep. She said the anesthesist couldn't believe how much they had to give him. But then of course she rushed on to tell me that it was safe and they knew what they were doing, etc. etc. Regardless three times in a one week period of such high dose we remain completely thankful that our Heavenly Father watch over him and nothing happened to him (especially considering we know of a child who went for a simple procedure and because of the anesthetic never woke the same). I was then told I could go wait in the Post Anesthetic Unit until they came to get me, which shouldn't be long.

An hour and forty-five minutes later I was still waiting and becoming rather concerned ... maybe I misunderstood where I was suppose to wait ... but then I've waited here enough times I really knew that that's where I was suppose to be. They finally called and I found him sitting in bed quite calmly with oxygen on. They put a mask type on ... don't know how they managed that without him ripping it off. The first thing he asked when he seen me is if he could take it off and then proceeded to rip it off ... which they replaced with nasal prongs and he was fine with that. He kept asking to go and seemed completely fine ... boy was I glad to skip the screaming and kicking that he often does and what we had gone thru the day before.

I was then informed as to why it took them so long to call me, as well as why the actual procedure took long. When they first sedated James his SATs dropped into the 60's and so they had to work to get him back into line. Then when they went to bring him out of sedation and take his ventilator out he went into what seemed like a bronchial spasm (like an asthma attack) and so they had to resedate and ventilate him. His breathing went up, she said high, but I found out it was only in the 60's. When I told her that was normal for him she said "oh, wish you had been there to tell us" ... well ya, but you won't let us be there. I guess his chart says his normal breathing is 45 ... he does breath that, but normal is anywhere from 45-60 for him. Regardless they were concerned about his breathing and sent him for an x-ray which showed his left lung to be in rough shape. I'm not sure what made them decide to try again, but eventually they brought him out of sedation and he was fine with a bit of oxygen ... and that is how I found him.

I can see why they wouldn't want parents around for the entire procedure. I like to think I wouldn't panic too quickly, but dipping into the 60's and knowing they had trouble with the sedation makes me even more concerned about future sedations, which we know he can't avoid. A two year old receiving almost adult doses concerns us. Sometimes you rather not know things, but yet we realize that this is important to know so that we don't just take anesthetics lightly.

He made it back up to the ward as a "happy" child ... and then the fun began ... AGAIN. He didn't know whether he was coming or going, what he wanted, how he wanted it, why he wanted it, where he wanted it. He'd be crying and crying to eat but then would throw anything and everything we brought him ... and we brought lots of options. Once again he was wobbly on his feet, but he wanted to walk and play ... he would walk like a drunk and trip and fall, making me worried we'd have another accident ... but get oh so mad if he didn't get his way. Nothing made him happy ... especially because this time I refused to walk him for hours in the stroller and since he refused to go with a volunteer this time he just wasn't getting a ride. I finally got him to fall alseep after screaming and crying and throwing himself around. Unfortunately he didn't wake up a whole lot better ... for a bit he wasn't too bad, but as the night wore on he became worse again. Thankfully I had company and therefore an assistant later on and so together we walked and talked ... didn't make him sleep, but kept him quiet ... until we got back to the room. After some kicking, crying and throwing himself around he finally fell asleep.

Once again by 11:30 he was on oxygen, about 100ml this time. He didn't sleep as deeply and soundly either ... waking often, wanting me to hold his hand, or suddenly sitting up and asking for a drink, and even deSATed once while on oxygen, but readjusting helped that time. This morning he woke up more himself, altho after an hour or so I realized he wasn't completely back to himself, but this time somewhat more toleratable. I was getting to the end of my rope again because he was so tired but refused to sleep and was miserable ... but then Daddy, Marietta and Rebecca showed up and he perked right up and was more himself. We went for a walk together, played in the playroom and had lunch together. Lucky daddy, or should I say talented daddy ... after we left James fell asleep in a couple minutes without a fuss.

I did run into the doctor yesterday who told me James' x-ray looked "horrible" and so they will need to repeat it again in a few days. Clinically he's doing okay, so likely it was just a bronchial spasm that made it look so bad. We're hoping that's the reason and that all the drugs is the reason for the need for oxygen again and this will clear up in a few days ... please, we really want to go home.