Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Monday, May 21, 2007

Just kidding!

Well as we have said before..... Alex will do as he will do. I spoke too soon. On Friday he tried to get that pic-line in, only to be unsuccessful. He also failed his swallow study. This kept him in the PICU on Friday so they thought maybe they would move him Saturday. Well he went down that morning for another stab at the pic-line and failed again. Ry and I went to ride Thomas the Train in Heber during this time. At about twelve they took him to the third floor where he lasted one hour until he went into respiratory distress and was taken back to the PICU and put on cpap. I was very disappointed to say the least. It is hard watching him struggle. He had an uneventful night. This morning we went to church at Primaries and after went to see him only to find he had come off cpap and was resting well. He had a very quiet day today and seems to be back to himself. The doctors aren't sure why things like that happen. These kids have nothing in reserve, so just the fact that he had been moved all around and poked so many times over stimulated and wore him out. I feel like he is so fragile. It is scary to think that even moving him around like that will make him sick. He will make another try at a swallow study in a couple of days and we will see how things progress. We have been practicing and he is taking his Binky pretty good now. Again I will try and post pictures soon....


Anonymous said...

So how is Jeff doing on his quest to be the primary branch president?

Anonymous said...

Wow Brynn... I don't know how you do it! You are so strong! Keep it up lady! He will get stronger! What a tough weekend for you! I am glad he is resting and doing well now! Praying for you always,

Anonymous said...

One month! You've been through so much in such a short period of time. Like many others I am in awe of your strength, testimony and growth. It has been a blessing just to follow your journey. You and your family are touching the lives of so many people and each of those people are thinking of you and praying for you everyday!

Sent with Hugs, Hope and Happiness~