Pages

Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, January 8, 2008

01-08-08

This morning has been relatively quiet. Alex had an Okay night. He spiked a fever that they are sending cultures to see if there are any infections, he also went on a series of antibiotics J.I.C.. He could be teething though and I think he might try and push those two top teeth in while intubated. They finally resolved trying to figure out if he needed a MRI and they will just do a CT right before we leave. The MRI is tricky because the patient has to stay intubated and also be pretty sedated because they want them to hold perfectly still, overall the CT is a better choice. So he is going to start spontaneous testing again and they will try and extubate a little later. He is more awake today and when he opens his eyes and sees me there he scrunches his little forehead and does the "please pick me up" look... I have huge anxiety and want to comfort him but I won't be able to hold him until he is extubated.... My guess it that he won't want me to put him down when I finally get to hold him...I have been taking pictures each day to record his progress..(one of my coping strategies) and I am amazed already at how he is doing and looking so much better...

3 comments:

Anonymous said...

Thanks for the update, we are all praying for you. love mindy

Sara said...

My heart is breaking that you can't hold him. I just hope that he understands why. I am thinking of you often!!!

Kenny & Michele Kingsford Family said...

Hang in there! Hopefully you'll get to hold him soon. It's so hard when they don't understand why. Glad to hear he is looking better though. We'll keep the prayers coming.

Michele