Alex and Maddy

Alex and Maddy

Friday, March 18, 2011

Not Much to Say

I haven't updated because I really haven't had much to say! We have sat in limbo ever since admission. We are running antibiotics. They did not want to do it from home. They didn't like the way he looked when he came in and decided it was "too risky". His labs are okay. He is sitting with his hemoglobin and hematocrit right above transfusion level as he has for most of the last two weeks. We have not run labs in several days, but will check them again tomorrow. His Ct scan showed his clot to be resolved so we can stop his lovenox injections as of April 4th. I know Alex will be very happy to be done with these painful shots. We have two main issues that we have mainly been dealing with. One, his GI system is not wanting to work. He has been VERY distended since we came in. He is uncomfortable and is tolerating a very low amount of feeds which means that once again we are counting on TPN for nutrition.

A picture of Alex's poor, bloated belly!

The other problem is that Alex is not keeping his saturations up when he is sleeping. We are pretty sure that this is due to either the anemia or the distention (which can put pressure on the lungs). We are very hopeful that this will resolve when the underlying cause is addressed. Today alex has not fell as well as he has the rest of the week. He just looks puny and tired. I am hopeful we get a better feel for what is wrong when we see labs tomorrow.

One nice surprise this week was an impromptu photo shoot with one of the renal doctors. Sje is a doctor we don't see, but who has an office on our unit in the hospital. Sheis an avid photographer and had asked me in January if I would allow her to photograph Alex. She had her camera yesterday and came by when Alex woke up from nap and photographed him in his hideout. I can't wait to see if she got some good shots. Alex had a really good time with her andasked her to take pictures of him again! Now that's my boy!

Once again, Thank you for all the prayers and well wishes.


  1. Thinking & praying for Mr. Alex.

  2. Hugs, prayers, and can't wait to see those photos!! What a beautiful littl man Alex is!!

  3. I'm so sorry that he is struggling. I hate tummy pain and bloating. Q is bloated all the time, but doing better now that i drain her constantly. He's such a handsome boy. :)