Alex and I both spoke at the service. I am so glad I said what I needed to say. Otherwise I would have had regrets. The service was nice with lots of staff members telling stories about Samuel.
Over the last week I have not been as detailed with some of Alex's medical info as I have been preoccupied with my sweet Samuel. So I am going to try and catch you up. When I called Bruce last Thursday night to let him know about Samuel, he was understandably shaken. He has heard comparisons about the boys for years. Needless to say he got up Friday and drove here to be with me and Buggy. Knowing how scared he was, I asked Dr. Koenig to sit down with Bruce so he could ask any questions he had. Little did I know Dr. Koenig would surprise me with info. Apparently, Dr. Koenig is much more concerned about Alex's liver then I realized. He will most likely go into liver failure at some point and we will probably have little warning. We are already doing everything we can to protect his liver, so we will just pray that his liver continues to function. We also discussed the fact that in the last year we have been much more lax about coming down to Houston for fevers. That simply cannot continue. A fever that we ignore and do not treat promptly could be the difference between life and death. Protocol for any child with a central line is to be on antibiotics for 48 hours for any fever while they rule out an infection. We have to go back to following that protocol. It was a hard conversation to have, but we were glad to get chance to ask Dr. K anything we needed to.
Where we are now.....We are trying to change Alex to a new seizure med in the hopes that he can absorb it better through his GI tract. We are slowly ramping up to a full dose while tapering off his IV keppra. We are watching to make sure he tolerates this medicine and also that he does not have an increase in seizures while we make this transition. In the meantime, Alex's labs have not looked good the past few days. At this point we don't know why they look so bad. It could be that he is on the verge of getting sick again, it could be from the new med, or it could be from the blood transfusion (oh yeah, he got blood last night). And so we sit and wait and watch labs. We are hopeful that they will look much better tomorrow. We are also watching his heartrate as it has been much higher then baseline the pst few days.
The hope is that things will turn around and we will be discharged on Monday. Alex is in good spirits and giving the nurses (and me) lots of much needed love.
Thank you for keeping us in your prayers.