Not much happened today. Alex was up a lot last night which meant so was I. We were able to sleep some this afternoon which helped. While we were sleeping the Dr. came in and hooked up his feeding tube. He was receiving 5cc an hour of 25% strength Ele Care formula. He slept for awhile but then woke up very upset. It continued to get worse. Finally, this evening I had the nurse disconnect his feeds for about 45 minutes. After about 20-25 minutes he had calmed down and fallen asleep. The nurse reconnected his feeds again while he was asleep, and within 20 minutes he was awake screaming again. After an hour and half I asked the nurse to disconnect the feeds again. Within 30 minutes he was calm and sleeping again. I guess I will have to talk to the pediatrician in the morning to see what happens next.
The geneticist had ordered hand x-rays of both his hands. They came upstairs and did them at his bedside which was nice. I hope they let me see them tomorrow because I am very curious.
The immunologist also came by again. He had a lot of labs drawn today to be sent to a lab in Ohio. The results should be back tomorrow or Friday morning.
OK, the pediatrician who is on tonight just stopped by. They are going to hold his feeds over night and make a new plan in the morning. I am going to bed now just in case he wakes up soon. I am glad it is supposed to rain the next few days. I can not sleep during the day usually, but today when it was cloudy it made the room a bit darker. I got a 3 hour nap and might have slept longer but Frank and Grandma and Papa came in. It was great to see Frank because he doesn’t get to come by all that often. He will be back tomorrow afternoon as well. Mom came by this evening and brought me dinner from Outback. YUM!
Alex will need a blood transfusion soon. He made need them on a regular basis but I don’t know yet. I am unable to donate because I am post partum. He is A positive. If you would like to donate your blood to Alex, you can email me. There is some paperwork and testing you have to do to see if you are compatible. Even if you are not, I urge you to donate blood. There is a blood bank shortage, and everyday there are kids just like Alex who need help. If you can donate and do not match, just think of it as repaying someone who donated for Alex. Mom will also have the information if you are interested.