Heath's Journey 5/11/09

mujul79's picture

Heath did well today.

He did need to have his IV put back in as he pulled it out last night and I was not looking froward to it because the original one that was done in the ER took 3 sticks as they kept blowing his vain and he screamed and fought. The poor thing is all bused and was used like a sticking pad and the nurse had no bed side conversation with him at all during it only kept calling in more nurses to hold him down. But last night the charge nurse on his floor did an awesome and only had to sick him once and he did not cry because she was talking to him during it all and he just was a big flirt as she was doing it.

Today ST came and they did think he needs some help but we can do that with "babies can't wait" also when the come out to do OT and PT.

At 10:30am they came to take him to do the MRI and I was unable to go with him. I was upset. I did do ok saying good buy but had 2 hours to kill and went to the gift shop for some retail therapy and to get a sweater because I have been freezing here. I also got him a cute blue frog for being so good. He got back to the room at 1:15pm and was sleepy. I was able to talk to his Dr. almost right away. The MRI scan looked good but she said because to his size we may have to have it done as he gowns in a few months just to check how they compare and that he keeps growing well in a few months if the spasms keep up or he is still developmentally delayed once we get home. As far as they can tell nothing is going on that should be causing them.

Only thing they can find wrong with him is his delays, that his right side is bigger then the left and he needs ealry intervention to catch up developmentally but until genetics come back we still have no answers as to why this is going on, but yes infantile spasms could be related to BWS. I am happy all his scans are negative but sad that I will be taking him home after 5 days with not many answers.

It felt so good to get him in my arms after the MRI, but he was loopy breastfed and is back asleep so I came to check in.

Now is just a waiting game until genetics come back (about 4 weeks). He is still in his room being watched but maybe we will be going home tonight and everything else will be done out of the hospital. Only other thing they want to see him do is become more awake and have his hearing screen redone and more blood drawn, before they make the call on if he can go home or not tonight.

Only bad thing is they have been 2 times to take blood for genetics and the first time they did not take as much as they should have and the 2nd time the lady put it in the wrong tube so it has to be redone before he can go home. They are getting written up for making my baby have 2 unnecessary sticks. This too is why he is on iron because of all the blood that they are taking is making his levels low.

Still have no answers on why he is so "sick" and congested at home and is breathing so well here. I kept being told babies his age can't have allergies but what else could it be? At home to help him breath I am putting vicks on him at night and using the neutralizer up to 4 times a day. Here his eyes are not goopy and getting stuck when he sleeps (they did see this when we arrived, but it cleared without meds in the first 48 hours after arrival) and his lungs sound good so I don't hve to suck him out and the cough went away and I can see he is pink and not struggling even able to be on his back. But no one can enplane why he is doing so much better here then at home. They keep telling me he must have had a cold at home but I know it was not a cold it has been his eniter life and a cold would come and go. Still they say it can't be allergies that he is to young. But as much as I wish we had some answers I will be ready to go home later tonight or early tomorrow.

Over all our stay has been nice and everyone has been helpful in answering my questions and getting us anything we needed during out stay. I just wish I had a few answers to go home with as much as I love his clear bill of health it is frustrating. Only suggestion was keep a journal on when he has events and bring it to the genetics team when we have our follow up with them.