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

Quick Explanation of the Past Few Days

I know I have lost some of you over the last few days (who follow on FB)....

Wednesday Alex woke up with a dry diaper from his nap. He never peed the rest of Wednesday. We had a wonderful dinner with my cousin and I didn't really think much about it. Thursday morning he again woke up with a dry diaper. Per our plan I started measuring his urine output. He did pee a very small amount that morning. By late morning I realized he was not going to hit his "goal for pee" number and started getting in touch with his doctors. After talking to the dietician who we work very closely with and Dr. K, we switched him to half strength formula. They also wanted us to run labs and try and get in with our local pediatrician. We ran the labs they wanted minus the urinalysis (because that requires pee which wasn't happening). Unfortunately our pediatrician is out of town all week and there were no appointments with anyone that day. I was also scrambling to get supplies (mainly IV fluids) from our home health with the expectation that this was going to end with Alex needing fluids. By late in the day on Thursday despite not having the labs back if was obviously that Alex was pretty dehydrated. It had been over 24 hours with only 100 cc of urine. So I was given instructions to give him a bolus of IV fluids that night. We were very happy to wake up yesterday morning to a very full diaper. The repeat labs showed a huge improvement. We have switched back to full straight formula. We have once again revamped our "fluid/dehydration protocol" with the GI and dietician.

Bug is doing ok. He obviously didn't feel great the past few days, but we saw a big improvement late yesterday. Unfortunately the lab work showed a few other past problems rearing their ugly heads after years of having things under control (ammonia and coags). So yesterday once again prompted quite a bit of communication with our fabulous doctors and their staff. The changes have me a little more concerned then normal because both issues can be independent problems or they could show a decline in his liver function. Alex's liver is our area of greatest concern. I pray that a medication change helps which will take some of the worry away.

Thanks to everyone who prayed and checked in on us over the last few days.
Ali

Too Long

I have been terrible about blogging lately (as some of my best friends have no trouble reminding me)!! I have been so tired. It seems like this has been the craziest summer! Luckily we have a slow week this week so I can try and catch my breath before the next crazy stretch begins!

Alex was discharged from the hospital on July 1st. After setting up fluids to be delivered to us in Houston we were able to head to the Knights house for a fun weekend! We left the hospital with a temp in the hundreds still and orders to run IV fluids through the weekend until we could come up with a plan at our appointment on Tuesday.

Friday afternoon Alex made a special trip to the cemetary with Ben to fly airplanes and have some boy time with Samuel. Saturday the boys and Lauren went to see Cars 2 while Missy and I went to meet a friend for lunch. Then we had a quiet evening. Sunday was a quiet day as we got ready for Monday's festivities. We did get to enjoy the afternoon at a friends house to celebrate her girls birthdays. It was a fun day of swimming at their new house with a pool. Monday we had a cookout at Missy's house complete with an inflatable water slide. I swear the kids must have gone down that slide a hundred times! The kids had a blast in the backyard and Missy and I were able to have some good girl time with her Mom and Sister in laws. And I got some much needed "baby time" by holding Missy's neice Amelia! We finished off the night watching fireworks. I had to chuckle as I listened to Alex and Lauren discussing how Samuel much be hopping around in Heaven to avoid burning his feet on the fireworks.

Tuesday we had two appointments. We saw Dr. N (GI) first. We discussed a plan for trying to keep Alex better hydrated. The fact of the matter is that we are stuck between a rock and a hard place. I have watched too many kids with mito die this year. The truth is that most don't die from mito. They die from a central line infection that their little bodies can't fight off. We all saw in December how close Alex came to losing his life to this same kind of infection. Alex's doctors know his body will not survive many more (if any) line infections. So the decision is not to use his port if we can help it. However, his motility is pretty poor so we can only get a limited amount of fluids in through his GI tract. So you can see our dilemma. There are no good answers. We use the line and risk death or Alex is chronically dehydrated. Not a choice that has a good answer. But the easy choice (at least for us) is to deal with the dehydration. At least with that we stand a fighting chance at life! So we have a plan, but it has many flaws.

From GI we moved on to Dr. K. There really wasn't much to discuss. We are leaving things as are for the most part. We did discuss when to repeat the Spine MRI, but we decided that we will hold off for now because Alex struggles so much after anesthesia and we don't want his GI system to take a hit right now. We also discussed a little more about the clinic trial that Alex may get to be a part of. We are still waiting to hear if we will be included.

We headed home on Tuesday exhausted and ready to sleep in our own beds. Plus Alex was anxious to see Daddy. Alex barely got out of bed on Wednesday. He just lounged around while I tried to get caught up around the house. Thursday was another quiet day as was Friday except fro therapy and a n appointment with his psychologist. As I have mentioned many times we are so blessed to have such incredible people working with Alex who love him and are willing to work with him at whatever level his is capable on any given day. So many of our medical team are so much more like family after years of working with them.

Yesterday, we headed to the waterpark for a family fun day. It was a pretty short day as Alex doesn't handle being unhooked from his feeds for long, but it sure was fun while we were there. I love watching Alex conquer his fears and push himself to grow. He really expects a lot of himself and continuously strives to make himself better.

This morning we went to church where we have been blessed with a new pastor that we really like. Bruce and I are really enjoying this change and the pastor's messages and personality. Alex went to Sunday school and had a great day!

So this week we will have a slow week except for our usual therapy and psychology appointments. Then we hit the road again. Alex and I cannot wait to begin our annual vacation to Mimi and Pop-Pop's. We always spend 3 weeks there in July/August and it is one of our favorite times of the year. This year should be extra fun because we start off the trip with Aunt Jenn-Jenn, Skye-Skye and Pop-Pop's daughter Kim and her two girls joining us for a week. The kids should have a blast!

I ask that you pray for The Hilliard Family- Jessica, Sean and Gabriel as they said their final goodbyes to their precious princess Eithene this week. I pray that they are comforted knowing that their sweet girl is playing with all our other mito angels: running free from all the attachments and illness that limits them here on earth.

I also ask that pray that Alex stays healthy over the next month as we leave our comfort zone and travel out of state. Alex and I love to be surrounded by the love of our extended family, but we are always concerned about the possibilities of getting sick in a place unfamiliar with Alex's complex medical needs.

Ali