Not Feeling Great, But Still Having Fun

I haven't updated in a week so I thought I would give a quick update on the last few days and some pics!

Alex is still not himself! He has been pretty puny. Mostly wanting to stay in bed and watch videos and play his Nintendo DS. Mimi and I have been "forcing" him to get out and have some fun the last few days with lots of quiet time in between. We have seen friends, been swimming and riding go-karts. I'll let the pics tell the story.

Alex and his Cousins

Want some Seaweed?




Sand Monster

Beach bum

At the creamery with Mimi and PopPop

Mommy's Angel

Buggy and Cayman

PopPop and Bug leading the Race

Buggy DID NOT like driving himself!

Win #2

Where Bug has spent most of his time!

In some other exciting news....I had mentioned a clinical trial for a new medication they are using with some Mito patients. We just got word today that Alex has been accepted into the trial. Thank you for all who prayed for us. We are very hopeful for what this may mean for our Bug!

Ali

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.
Ali

Would much rather be in NC!

AAAAHHHHHHHHH!!!!! That is the sum total of my feelings over the last two days. Yesterday morning was a typical Monday morning in the Beckwith house. Alex was watching a movie in his playroom. I was getting ready to draw labs and give meds and get our day going. I had called Alex in to his bedroom (more then once) and went to the playroom to grab him so we could get everything done. When I got to the playroom I grabbed Alex's hand to lead him to his room and our hands got caught between his body and his feeding extension. As I pulled his hand, it pulled the tube and popped right out. I felt terrible as we both immediately realized what had happened. Alex was a trooper as he was in intense pain and I had to pop another type of tube in to hold the stoma open. I got the tube in, wiped away the blood, put some guaze on and taped the heck out of the tube to hold it in till we got to the hospital. Then I carried Alex to the couch to lay while I called the doctors and packed our things. I held myself together until I got Dr. K on the phone and immediately started sobbing. I felt so bad for causing Alex pain and was so sad as I knew our trip would have to be postponed. Less then an hour later we were on our way to Houston.

Once in the ER things only got worse. Someone made the decision that we should attempt to replace the tube with out taking him to the OR and putting him under General Anesthesia as we have always done. They told me it would be pretty easy. I should have known better. It was the worst 20 minutes for poor Alex (and me). It took 3 attempts and an unbelievable amount of force to get the tube in. Alex told me it was the worst pain of his life. And then it took close to an hour to get him a dose of pain meds. Needless to say the tube will NEVER be replaced that way again! On top of that, Alex was in the ER for almost 9 hours despite having a bed waiting for him upstairs bc the ER was so shortstaffed they couldn't get him up there. In the ER his temperature also stayed in the 100.8-100.9 range so the decision was made to start IV antibiotics. We did a study to be sure the tube was correctly placed which Praise the Lord it was! We finally got up to a room around 9:30 last night.

Alex had a pretty good night. After the trauma of the day, he had fallen asleep at 5:00 in the ER and slept until 6:00 this morning. Unfortunately something just isn't right with him today. He has been extremely quiet, hasn't wanted to get out of bed, wouldn't go to music. He is just off. Everyone agrees that something is wrong, but no one is sure what! So we are waiting and watching. We are hopeful it is just the stress of yesterday. Alex's feeds are at 15 cc/hr. His meds are all going through his tube. Labs look ok.

Alex and I are still hoping to make it on our trip to see our family. As Alex keeps telling me, "No matter what, I have to be there for Mimi's Birthday". We are doing everything we can to get healthy and get home so we can head to NC.

Thank you for all your prayers and love.
Ali