Heath's Journey 5/8/09

mujul79's picture

I just got to step away.

Last night I had to stop feeding him at 4am so he could be sadated for the EEG and MRI. At 8am they took us for the EEG. He did well and we did not need to give him any meds during the test he just slept in my arms in a chair. The test took about 45 min.

The rest of the day has been spent with many teams looking at him and eatting nothing by mouth so he was not happy.

All we know now is he is delayed. He was seeing by PT. He is only starting to his milestones that should have been hit at 4 months and even some of the 4/5 month stuff he is not doing as of yet. They also think he is having sensory issues so OT is comming to some him some time this weekend along with a genetic workup. And before we leave they hope to have us set up with a program called "babies can't wait". It is suspected that something is going on but I just found out the EEG showed normal brain waves. It is possible he is having infantile spasms but we won't know anything until the full picture of the MRI is done. It has also been noticed that his left side is smaller then his right side in all parts of his body. (this is what I have been calling his weak side for months now and droopy eye, tongue falling that way ect.)

We are staying until Monday for more test. Because of the apnea they decided not to sedate him for the MRI and they want to put him to sleep with a breathing tube instead. (mama is scarred of him being put to sleep) But they can't get the appointment for all the Doctors that would have to be together to do that until Monday so it looks like I will be here for mothers day. I got the clearance to start feeding him at 12:00 and after 8 hours of not nursing he was so happy to get to that he nursed over 30 min.

Only thing they have done so far other then the IV (he hated that) and the EEG is give him iron (CBC showed it was low) He also was given B in the ER to help stop the seizures. He has not had any more major ones and it has been 28 hours so that is good, but I have seen some small "blank" events. I was told the "blank" spaced out things he is doing could also be a type of seizure.

David and the kids are at home. David is sick and can't come to the hospital and this is killing him. The other 2 seem well when I talked to them on the phone last night. Heath does not have any signs of being sick.

Part 2

When typing before I had a scare I went back to the room and he was GONE. We found him having and U/S that I did not even know he was having. Turns out genitc ordered one while I was in the library to look at his abdomen and sent a genetic screen (blood test) for Beckwith Wiedemann Syndrome we won't have the results for about a month but right now that is the best guess to what is going on. His right side is bigger not only in size and tone but length too they found after exam and it fits it well with his previous issues and breathing from an infant and could explane why the apnea is not improving with age.