Tuesday, April 25, 2006


Max went to the doctor yesterday to get his ideas on the increased O2 and the vomiting. It was interesting traveling again with his oxygen tank...it had been a week since he was using it during the day. But no biggee...I have two working shoulders! :)

We were there for hours and hours because he needed several chest xrays and there was a long wait. And of course Max garnered much attention from the other patients. There was an older gentleman that just kept staring at us and all the equipment. He wasn't trying to be rude, he was just very curious! I forget sometimes what a sight we are!!! :)

Max probably has not had a chest xray for over a month and let me tell you, it was MUCH easier last time. He showed his strength yesterday and refused to lay still even with two of us holding him down. It was quite the fight to wrestle this lil' baby! But finally they managed to get decent shots...and fortunately no pneumonia, serious aspiration, etc. Same chronic lung disease with just a slight worsening in one area...but nothing terribly new.

The most difficult part of the experience...in addition to having to restraining my crying baby (not fun at all, I had tears in my eyes too!)...was that this particular technician had not worked with Max before and could not grasp the concept that Max can not sit (YET). She kept asking, are you sure he can't? I'm like...hmmmm yes, I'm sure! She must have commented on that 3 or 4 times saying how much easier that would be. I'm thinking, yes A LOT of things would be easier if he could sit (or even really hold his head) but that's just not our reality right now. :)

Fortunately yesterday and over night he had no more vomiting episodes but his oxygen requirements are higher. He had a million desats last night but half the time they were because he moved his cannula to on top of his nose. That's his funny lil' trick. I kept him on Pedialyte most of the day and added in regular feeds at a very low rate over night. For now, we are halting any "oral feeding trials."

We leave in about an hour for Max's EEG. They said to bring his favorite bottle to keep him relaxed...which made me smile. For those of you who don't know, Max cannot drink out of a bottle...only through his Gtube. But the nurse of course would not know that...she was just calling to prep us for the procedure.

Anyway they said we would be there for several hours and hopefully Maxwell cooperates! We are trying to keep him very active this morning so that he falls asleep or at least lays still for the test. I don't know if we will have any results today. I think I will have another appointment with the neurologist once he has a chance to thoroughly review the results.


RebeccaA said...

Amy, The comment about the sitting for the x-ray brought back a memory - when Cameron was about 4 months old we had a photographer come to the house - it's a company that only comes to homes for baby pictures - the photographer is setting up the shot and gets out the wedge to use to place Cameron on his tummy then tries to get him to hold his head up. I knew he would not be able to lay on his stomach and keep his head up for any decent amount of time. Cameron had zero gradiation on head control at that time - it was up (briefly) or down. The poor guy kept trying. I kept telling him that Cameron couldn't do it. "Sure he can, come on little buddy..." he says. And at that time we didn't know Cameron was deaf so that made it even more silly. Anyway he never did get a shot of Cameron and never called back either. Some people just don't listen! :>)
- Rebecca

elle said...

silly person you should of jsut sat him up and said now see wat happens eather that or launced in to a thing abotu charge about week nerves hearing loss all this stuff which mroe people need to know abotu and you would of had a charge lesson and a succesful xray all in one LOL weve educated people about me techitians and stuff lol i remember muelling me man that allways did me in xray allways looked after me had to do mum and mum went off at her when she told him at the last minnute she couldnt have that one dye the poor man was like your a mum of a special needs kid who ive cared for and you forget that i just had to laugh when she told me coz she given them tones of lessons on me an well one was giving her a lesson on being a mum and remembering her health not just mine LOL well please write about the eeg results

elle said...

and update charge ladnt to