Alex and Maddy

Alex and Maddy

Thursday, June 30, 2011

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.

Saturday, June 25, 2011

Catching Up

I don't know how the time gets away from me! It has been two and a half weeks since I last updated. We have had a busy start tot he sumer! Alex officially finished First grade and didn't want to stop. He immediately asked to start our next curriculum!

This week was VBS. I had to chuckle to myself when I saw the theme: Inside Out and Upside Down on Main Street. So very much of our lives is inside out and upside down. However, somehow in the midst of our craziness we see so many blessings surrounding us. The Kids spent the week learning how Jesus makes a difference every day and the lessons he wants us to learn. They talked about gratitude, compassion, forgiveness and faithfulness. I have watched Alex see these lessons play out in our lives throughout the last year. I was commenting to a friend this week that I have loved watching Alex's faith grow this year. He feels it, he believes it, he lives it. It is something he will certainly need to lean on in his life. One of my favorite moments of the week was a discussion Alex and I had in the car Thursday morning. He asked me about jesus coming to live among the people. I reminded him that God sent Jesus to live on Earth so that people could see him and learn the lessons God wanted them to know. Alex's response was what all of us Christians should say..."Mom, you don't need to see Jesus to learn about God because he is in your heart." What a statement out of my wise little man! We continue to be so very grateful for the amazing family we have at Keller First United. They embrace Alex and make him feel safe and loved. Alex was also thrilled to have one of his best buddies, Walker with him all week. So overall it was an awesome week. Alex is exhausted and paying a little bit of a price. He has been running a low grade temp since Friday. We are hopeful it does not get worse so we can stay home.
In medical news things have been pretty good. Alex had his 7 year checkup with Dr. Benzick and other then his growth, Dr. Benzick was pretty happy with where we are. We got him caught up and discussed the coming months. We are thrilled that Alex continues to be able to go without his nightly IV fluids. He is certainly not as hydrated as would be optimal, but he is holding his own. Because we are not using his port every day, Alex has been able to resume aquatic therapy with his OT. He is loving being in the water and is making some progress towards swimming independently. We head to Houston the first week of July to check in with Dr. K and Dr. N to discuss some concerns and make sure we are all on the same page.
One other big development over the last few weeks....All of us in the Mito community have hoped and prayed for a treatement to be developed to treat or help mito, but most of us did not hold much hope of it happening in our children's lifetime. Most of us knew there was a trial going on on the West Coast, but there really was very little info coming out. In the last few weeks we have learned that this drug has shown VERY promising results and they are opening up the clinical trial to a larger pool of patients. The criteria is still pretty stringent, but Alex is being strongly considered to participate. Please pray that this treatment continues to provide good results, that if it is meant to be Alex gets into this trial and that he is safe during the course of it. We all pray that this drug becomes available to all mito patients shortly!

Wednesday, June 8, 2011

Happy Birthday Buggy Boo!

7 years! 7 years! Where have seven years gone? 7 Years ago today God granted me the greatest blessing. My precious Alex. From the beginnng Alex exuded joy and an abundance of personality. I am the luckiest mother on earth that I get the joy of spending every moment watching this sweet boy blossom into the most incredible little man. Over the last year we have watched some of our closest friends lose their babies, we have watched Alex fight for his life and so this year I am even more aware of what an incredible miracle this day is.
To my Best boy, my buggy boo:
Mommy loves more then anything in this world. Seven years ago when God gave you to me, you made all my dreams come true. God knew you and I would be perfect together. I am thankful everyday that I get to be your Mother. You are the bravest, strongest, smartest,kindest, happiest boy I know. I love watching you grow in your faith and trust in God. I love watching your love of learning and your curiousity. I love watching you try and give away all your treasured possesions as you try and make your friends and family happy. I love watching your face light up in joy when you are having fun. I love cuddling with you. My sweet, sweet boy you are my greatest accomplishment and my greatest joy. I love you forever and always.

Tuesday, June 7, 2011

Heaven on Earth

Otherwise known as the beach. We loved every minute of our relaxing vacation. Here are pictures so you can enjoy the week with us.

The crab Alex and Skye caught

Alex playing in the water

My favorite picture from the week

Best Cousins

The boys with Grandpa

Buried Alive

An evening at the beach hunting crabs

The dolphins that swim just off shore

My Postcard

The boys loved riding waves in this boat

Swimming in the pool

Playing with Mary

Mary is the daughter of one of my closest college friends

Walking to the beach

Alex and his Mimi

Celebrating Alex's Birthday on our last night

Visiting the Grave Digger on the way home