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

Not much to report

You would think after being in the hospital for 4 days I would have a lot to update. Unfortunately, we are all kind of unsure of what is going on. I will do a quick recap....

Monday morning when Alex was on day 4 of a low grade temp, Dr. K asked us to take Bug to see his pediatrician. Dr. Benzick checked him out and diagnosed a viral throat infection because he saw pus in the back of his throat. Well his temp kept climbing and by dinnertime Monday Dr. P felt like we needed to come in.

We got to the hospital a little before midnight and went right into the ER. The ER doc thought Alex "looked too good" and admitted him to the observation unit and didn't start antibiotics against Dr. P's recommendations. We were in the obs unit for about 4 hours before we were moved to a regular room, but not in our regular unit. The team came by and confirmed that there was definitely a white patch in his throat, but they thought it was a cyst. He never ran a fever from the time we got the hospital until Tuesday evening. I was just get ready to leave with Missy to go to dinner and his temp was 100.2. I didn't think much of and off we went. When i got back a couple hours later they let me know that his temp was 100.9 and they had called the team. The on call doc quickly ran labs and called Dr. P. They started antibiotics. They also moved us down to our regular unit to monitored more closely. After starting antibiotics we didn't see anymore temps. In the meantime, it was decided that Alex was significantly dehydrated. Despite a bolus of fluids and then IV fluids running as if that was his only fluids and his feeds running he barely peed for 24 hours. We have caught up hydration wise, but it has reopened discussions on whether we need to do IV fluids at home like we used to. There has also been some disagreement about whether we need to do IVIG or not. As of now we have not.

Fast forward to today... the team decided to stop antibiotics and fluids and only do a bolus replacement once a day (like we used to do at home). A few hours later he had spiked a fever to 100.6 again. In the meantime ENT came by and looked at his throat. He had a collection of debris that was cleaned out. So here we sit not knowing much more then we did when we came in. The team is leaning towards virus and still discharging us tomorrow. I am not sure how Dr. K and Dr. P feel about that as I did not see them today.

I think that about catches you up except for one little incident. Yesterday morning I left for my coffee and Alex was asleep. When I got back he was sitting up and his face was bright red and swollen. My knee jerk reaction was "oh no, what is he reacting to". The I remembered one of his antibiotics was running (vancomyocin). It is known for a side effect called Red Man's syndrome that causes redness, swelling and itching. We know Alex gets this so we pretreat with benadryl and run it really slow. The night nurse hadn't read the orders carefully and was running it too quickly. They slowed it down, but the poor boy was red for most of the day. I guess that is one way to get him some color!!!!

Thanks for all the emails, calls, messages, prayers etc. I will update again tomorrow.
Ali