The "Odd Child"

Our poor little boy had a very rough day today. Yesterday, on the other hand, was a nice day. With nothing that needed to be done, since we were just waiting for the GJ tube and a SAT monitor, we were able to take off for home at 10 a.m. ... only to be told we had to be back by 6-6:30 so they could put an IV in ... a nice welcome back. Usually we don't go back until 8:30-9pm ... but regardless we had a nice stay home.

Today we got to the day for the GJ tube. James had to be off feeds for 6 hours prior to the procedure and was scheduled for 1pm ... another long morning of distracting him from food. Since we do not want to feed him at night, this means he's gone quite a while without food ... IV fluids do not help an empty stomach. Twenty minutes before 1 they came in to give him his "sleepy" medicine. He would only be sedated (or mellowed) for the procedure to avoid a whole general anesthetic and another intubation (tube down throat for breathing). Only a couple minutes later they came back to say that they were behind schedule and he would not be going until 2pm. But ... he should get sleepy so it shouldn't be too bad and hopefully he'd go for a nap and stop asking for food!!! YA RIGHT!!

Fifteen minutes later he's wired and irritable, twenty minutes later her starts crying, and cries for the next twenty minutes. Meanwhile his SATs keep dropping and then he starts gagging and coughing. Finally he has to go on oxygen, which just upsets him more, but the gagging settles down. It seems to me that this medicine is not working, but nobody seems all that concerned, they just get an extra dose and we're on our way! They give him a shot of morphine to help with the sedation and finally at 2:20 we arrive in the room where he, of course, realizes something is up and becomes even more frantic. After waiting for the doctors approval they give another shot of "sleepy" medicine ... and another, and another ... plus an extra morphine. You would think after the second shot they would clue in that this is definitely not working for the poor child, who is not in the least bit settling down, and besides having slightly heavy eyelids is wide awake, fully alert and beyond irritable. But they push it to the limit of what they can give him ... and the poor child has to deal with the consequences afterwards.

It is finally decided that this is not working and he needs a general anesthetic afterall. A call to anesthesia says there is no one available at that time and so we much go back to our room and have it booked when there is someone available. I asked if this happens more often and the nurse told me that "the odd child" does not respond or it has the opposite effect. That's our James.

All James wanted to do is eat ... he is irritable and crying and we think food will at least settle him down. So we get him some food and he eats, then he's sort of dozing off in the chair but only closes his eyes for two seconds before he starts crying up a storm. Then he starts to vomit, and cry, and babble about anything and everything, and ask for this and that and everything when wanting nothing .... and did I mention cry, not just wimper, but a nice loud upset crying. The boy is totally confused and totally unhappy ... and totally driving his mom nuts as nothing helps. Although the medicine didn't mellow him to sleep, it did mellow his muscles/body as he couldn't stand well and seemed "relaxed" if held. Unfortunately his mother was not very bright and forgot this point and when she took the tray off his high chair and turned for two seconds: he fell out, hitting his head on the floor ... of course with witnesses ... and then shortly afterwards vomits again (this was not the first time) .... and so more torturing as they had to access him and then call the doctor and reassess, etc. It seems the fall did not do damage, the vomitting and irritability began before hand and he seemed fine when assessed.

After almost two hours of trying to figure out how to stop him from crying and trying to get him to sleep I discover that only thing that will quiet him is a ride in a stroller. And so begins a couple hours of walking around the hospital. He is tired, but does not sleep. The ride keeps him quiet, if I stop, he cries ... my arms are about to fall off from pushing a stroller and IV pole, nevermind I'm just tired and hungry. Thankfully I find a volunteer to relieve me for 1/2 hour while I eat and call my daughters ... and more thankfully when the volunteer comes back he actually asks to come out ... 15 minutes later he is sound asleep on my lap ... and like they predicted, once asleep he is asleep, his body is limp and he doesn't react is you readjust him ... he's definitely sleeping ... hopefully for the whole night because tomorow morning he has to be traumatized again as we are booked for 9am to have his GJ tube changed under general anesthetic this time. I sure hope his body can handle this ... once again he can't be feed and so we sent the nurse off to find out what to do with him as he vomits if I feed him and since I cannot feed him he will now be going over 24 hours without protein. When they restart his feeds tomorrow it will only be at 10ml/hour ... so it will be 48 hours before he's getting proper protein again.

But although he's sleeping I should not leave him long as his SATs were not doing the greatest and I hate for him to wake up in his current state and not have mommy there.

On a good note. They managed to find us a loaner monitor which they brought in today and we're trying it out to see how it works in comparison to the hospital monitor. We can use this until we get our own monitor ... which we're STILL waiting for quotes on ... but now that we have a loaner it's their problem if things go so slow. James continues to drop his SATs 2-4 times a night and repositioning him brings them back up, so we don't need oxygen, but we do need the monitor to know when to move him around. This loaner will be identical to the one they are looking for quotes on, so it will give us a chance to try it out ... not like we know what else is out there or what other options are available.

Another good note. I had an ultrasound and OB appointment today. All is going well with the pregnancy, which I continue to be sooo very thankful for. Baby is growing, fluid is good, placenta is doing good, blood pressure is still nice and low, sugars are doing good ... yes, there is much to be thankful for. James has not allowed me the opportunity to worry about the pregnancy and things continue to go well ... I just hope my lack of focus on baby will not make me miss any signs. I will admit these last weeks have been very hard on accepting the idea of having a baby in the house again ... I really can't imagine what we would have done if we had a little one ... but I know the Lord helps us through all trials, just as he has helped us to keep our sanity the past 3 1/2 weeks ... there is no point in worry about something that hasn't happened, we'll cross that bridge if and when we arrive at it.

One more note ... the Team Meeting is scheduled for next week Wednesday ... I will have to wait another week to hear what comes of it as that's when I have my next pediatrician appointmnet. Hopefully results are in on the special "stains"/tests they did by that time. A lot of items have already been dealt with, but it's still wise to get everyone together so that they're all working towards the same goals.