Alex and Maddy

Alex and Maddy

Saturday, July 23, 2011

Balancing fear and life

Keeping living and fear balanced is not an easy thing to do these days. How do I let Alex be a carefree little boy and keep my Mommy's heart from stopping him because I am scared of the outcome? Not an easy feat these days. Despite tubes, ports, medications, etc I have always let Alex LIVE. But after 4 years of NEVER pulling out a tube, we have now pulled out 2 in 6 months time. And both times have been somewhat traumatic. He has to be hooked up. It is his only source of nutrition and fluids. BUT he also needs to play. So 1000 times a day he has to hear me say "be careful of your tube". It is not something I have ever worried about before. I am hoping I can find some peace and we can get back to "normal".

This week in the hospital was not one of our easier weeks. There is a level of frustration because all of the doctors and myself are sure something isn't right. The problem is that NOBODY can put their finger on what it is. The most likely cause and our biggest fear is that his liver has taken a turn for the worst. BUT his liver numbers are ok. We know those are not always accurate so we just wait and watch. Alex continues to run low grade fevers as he has for a month. We continue to struggle to control his Ammonia levels. (Although an increase in meds has definitely helped which is promising), we continue to keep his clotting numbers in range, we struggle to keep his blood counts normal and his color is TERRIBLE. Yet despite it all he is back to acting more like himself.

After how awful he looked and acted on Tuesday we figured out he was in a good deal of pain. He was a little better Wednesday. The plan was to finish antibiotics Wed. night and be discharged first thing Thursday Morning. Unfortunately, we woke up to labs that were not great Thursday morning and prompted a little scrambling before we could leave. Alex's blood counts and more importantly coags were off again despite intervention over the last few weeks. It was decided we needed to see Hematology before we could leave. They ordered some extra labs which confirmed what they thought was the problem. Some of your clotting factors are produced in the liver and need Vitamin K to work. One of those factors was very low (It has been low in the past, but was considerably lower this time). So Alex is receiving 5 days of Vitamin K injections in the hope of getting his clotting back to normal. Luckily we were able to be discharged Thursday, but we didn't get out until 4:00. I sure was happy to hit my bed when we got home. Poor Bug must have been exhausted, I woke him up at 9:00 yesterday morning!

Thank you once again for all of your prayers. You, our family and friends, lift us up when we are down. When I don't have the strength to put one more foot forward I know there will be someone to carry me. For that I am eternally grateful.


  1. Ali you are an AMAZING mother! You all have been through so much. I hope/pray that you are able to go on vacation as you both deserve and need it. Keeping you and Alex in our thoughts and prayers!
    Melissa G.

  2. (((hugs Ali)) Youve both have been through an awful lot. Been trying to keep up on FB, thinking about you both. Hugs and always prayers for your beautiful boy-
    Heidi & Jack.

  3. HI, I am a mom of many who have health issues. Our worst being our son who is 14. I have followed your blog for a little while and would like to ask questions. The geneticist at Cooks wants us in Houston and we are awaiting all the muscle biopsy results. If you have time I would love to correspond. My email is God Bless, Cynthia