The develoments of the day

So after the last ammonia being 99, a doctor’s appointment was scheduled with his gastro dr. as well as hematology. Initially, I was supposed to be at my practicum site but felt I needed to be in the office today with the docs as there were some questions I wanted/needed answered.

Ultimately, levels ammonia is of concern (many of you know this from post past) but also given the fact that his factor levels are low which of course influences some of his numbers in terms of the risk of bleeding/not clotting). The conversation is barely in my head but this is what it boils down to:

Lennon was admitted to the hospital to monitor him, his ammonia and his factors. In addition, he is looking at a liver biopsy because the concern is that a) he is having low-grade rejection or b) because of all the clotting issues and thrombosis of some of his veins that the liver is slowly dying. Of course, I don’t want to jump the gun or conclusions and am just taking it to minute by minute. However, just an hour ago I found out that his ammonia is now 164. This is pretty devastating news.

Without jumping ahead too much, Lennon may only receive one more transplant to save his life, but this decision will NOT come until after biopsy results. The chance that if the third one would not work and he would get the fourth one is not great. This is pretty harsh ~ but I get it.

I also wanted to mention that the increased ammonia does not necessarily relate to the Urea Cycle Disorder but directly to that he may not be able to absorb the required medication for the CPS Deficiency or the other already mentioned issues.

At this point – with reality in my face – I am taking it one second at a time because to do anything else would not benefit me or Lennon. I do ask for prayers, positive energy, and good grief I don’t know what else. It is one second at a time that I can function while maintaining strength for Lennon as well as his siblings. I am currently quite numb and in shock and think that it won’t hit me until after the biopsy.

Please know that while all of this medical stuff is going on, Lennon is funny, he is playing, he is awake, he is loving and he is ultimately being 6 years old.

3 Comments

  1. Birdhouse Blessings

    I just wanted you to know that we will definitely be praying for you and your son. The Lord is the ultimate physician, I will ask that he help you through.

    Reply
  2. Jutta

    i am so sorry to read this and it sadens my heart that you all have to go throu this again. i wished i could help and not being so far away! miss + love you all! i'll pray for my grandson and you! love Mom

    Reply

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