Alex with his "best girl" Stacy
Tuesday, March 29, 2011
Alex with his "best girl" Stacy
Monday, March 21, 2011
The other problem we have been battling is Alex's distention and slow motility. For several years now we have known that Alex holds an unusual amount of gas in his GI tract. It doesn't come out and often causes an ileus or obstruction of sorts. We have never found a cause. Our GI came by today and decided to perform an unusual test on Alex's secretions from his Jtube to see if he has an overabundance of bacteria that can account for the gas. So after his transfusion tonight we will turn off feeds for 3 hours and perform this test.
Feeds are slowly creeping up. We are at 28 cc/hr. I am still hopeful that once he gets his blood his motility will pick up and we will be able to move a little quicker. We would love to get to full feeds by the end of the week as we are supposed to be camping with the cub scouts.
We have a quick turnaround as we head home for 10 days before we need to head back here for more outpatient appointments. I am hoping after that trip we will be able to enjoy some down time and not have to come back to Houston for a while.
I will update from home tomorrow.
PS- There is now an option to be notified by email when I update. If you are interested in being notified please filll out the "follow by email" box. I will give people a few updates to sign up, but then I will stop notifying by caringbridge.
Friday, March 18, 2011
A picture of Alex's poor, bloated belly!
The other problem is that Alex is not keeping his saturations up when he is sleeping. We are pretty sure that this is due to either the anemia or the distention (which can put pressure on the lungs). We are very hopeful that this will resolve when the underlying cause is addressed. Today alex has not fell as well as he has the rest of the week. He just looks puny and tired. I am hopeful we get a better feel for what is wrong when we see labs tomorrow.
One nice surprise this week was an impromptu photo shoot with one of the renal doctors. Sje is a doctor we don't see, but who has an office on our unit in the hospital. Sheis an avid photographer and had asked me in January if I would allow her to photograph Alex. She had her camera yesterday and came by when Alex woke up from nap and photographed him in his hideout. I can't wait to see if she got some good shots. Alex had a really good time with her andasked her to take pictures of him again! Now that's my boy!
Once again, Thank you for all the prayers and well wishes.
Tuesday, March 15, 2011
In the meantime, Alex has been busy playing and enjoying music and has created a hide out in our room.
Alex has long loved the rooms that have these big windows sills. He often calls them his playrooms. One of his girls suggested hanging a sheet to make it a hideout. It has made for some good fun. I wish we had thought of it sooner.
I appreciate all the prayers and thoughts that had been sent our way over the last weeks. It means so much to me. I am sorry that I can't always respond to each one of you. I hope you realize how much the messages, texts, cards, calls and emails help me survive day to day.
Sunday, March 13, 2011
Believe in what your heart is saying
Hear the melody that's playing
There's no time to waste
There's so much to celebrate
Believe in what you feel inside
And give your dreams the wings to fly
You have everything you need
If you just believe
This has been an emotional week for me. It has been three years since Alex recieved his diagnosis of Mitochondrial Disease and I learned that he most likely will not be able to fulfill all the dreams his little heart desires. Since that day I have strived everyday to make his life full, to let him experience as many things as he can, and to help him create dreams that he can accomplish. I have worked to keep my fears in check so that I don't force him to live "in a bubble". And yet he still has so many limitations placed on him. It makes me sad and angry to know that there are people who throw this all away. How could you possibly sell out on your child like that? I will continue to believe and fight for sweet Bug.
So we made a detour on our way home Friday to complete Alex's last requirement to move up in Cub Scouts. I am very proud of him. Despite all of the obstacles he is faced, he completed all 15 tasks to be able to graduate to a Wolf Cub in April. Cub Scouts has been such a positive addition this year and we are blessed with the best Den and Pack who have really taken Alex under their wing.
We finally arrived home around 6:00 PM and did a few things before crashing for the night. We woke up yesterday morning and I continued to get everything reorganized so we could get back to "normal" this week. Alex went with Bruce to get a haircut and mail a package for me. Right before nap Alex started complaining of a bad headache. But he went right to sleep and I finally got a chance to hit the couch and relax. Alex woke up sooner then usual and called me in his room. He told me his throat hurt too bad to swallow. When I checked his temp he had a fever of 102.3. I knew what this meant. There was a brief thought about trying to get someone to just look at his throat locally, but I reminded myself of the promise I had made in December. In December, we almost lost our precious Bug and only quick action kept him alive. At that time I promised myself and my family that no matter how tired I am and how much I hate the drive, I would not risk Alex's life. And so the frantic routine of throwing together supplies began. We were on the road less then an hour later. Antibiotics have been started and labs drawn. His White Blood Count (a sign of infection) is VERY high for him. We are waiting on the culture from his line as wellas a flu test and strep. At this point his throat and head are better. Unfortunately his gut appears to have shut down as he was HUGELY distended last night forcing us to stop feeds. We are in a wait and watch mode right now as we try and figure out what is going on.
I have to admit to feeling a little defeated today. We have barely been home since the beginning of the new year. I am tired physically and emotionally. We are falling behind on our schoolwork. We had a fun day planned today. We were supposed to be heading to Six Flags for the day. We were excited to enjoy some fun, family time. I have promised Alex we will still go when we get home. I am just ready to get back to a routine and stop living out of a suitcase. I am trying to just grin and bear it, but I am ready for a break. I am just lucky to have such an incredible group of family and friends to keep me going.
Thanks for putting up with my crankiness today!
Tuesday, March 8, 2011
We had a GI test done today to see if we can find a cause for Alex's excessive bloating and xray findings. We should have the results tomorrow. We are also watching his blood counts closely as he is very close to transfusion level.
Alex feels really good and has spent he day playing and enjoying hanging out with his "girls".
We have been so lucky to have met some incredible people along this journey. There are a few families that we have formed true friendships with. We lift each other up when we are down, check in with each other, get each other drinks and snacks and cry on each others shoulders. Several of these families have had a rough week and could use our prayers. Please think of the Knight family this week as they say their final goodbyes to precious Cooper and lay him to rest. Cooper had a joy and smile that was infectious. We will all miss him. Also, pray for sweet Lily who had to be moved to PICU yesterday after having a code called. Christy and Tyson and incredible parents and people who I have grown to love over the last year. Last, please pray for Chad and Leah and baby Cade that they can get home and stay there as Cade has spent much of his first year inpatient. When Alex and I are bored and lonely, they are the ones we go find. cade always brings a smile to our faces and Alex likes to flirt with Leah! It amazes me daily, that in the midst of these hard times we are able to form this family of support who along with the nurses and child life have become our family away from home. Having a loving support system here makes it so much more bearable for both me and Alex.
Sunday, March 6, 2011
Please continue to pray For the family of Cooper Knight as they prepare to say their final goodbyes at the services over the next few days. The mito communtiy is small and close knit and we have been hit extremely hard over the last few months as we have lost numerous little ones.
Saturday, March 5, 2011
I have so many people to thank......
To Mimi and Pop-Pop- for getting us to the hospital quickly and holding down the fort that first night so I could sleep a little.
To Grandpa, Aunt Jen-Jen, Uncle Jimmy and Skye-Skye- For putting up with another crazy, stressful end to a vacation.
To Amber- For being such an incredible friend and driving 2 hours to spend Thursday with us. Having you there made the day so much better. we miss you.
To the staff at Wolfson's Children Hospital- For being so compassionate and understanding. They really worked hard to make us comfortable and try to get us home.
To Dr. K and Keesha- For always being there. For loving us and being willing to work for whatever Alex needs.
To Missy and Ben- You guys are the truest friends anyone could ever ask for. Whenever we have a need you are there. It doesn't matter what day or time I know I can always count on you guys.
To our anesthesiologist and surgeon- both of who changed there schedule yesterday to ensure that Alex was less scared and cared for by people who know and love him. (It sure made mommy feel better too)
To all our nurses and Doctors at CMHH- For making this our second home. A place we feel loved and safe. For being our friends as well as our caretakers. We love you guys and are so happy to be back here.
To all of our friends and family- who prayed, called, txsted, emailed and sent ideas to help us get home. We continue to feel blessed by your love. Your friendship buoys us at our lowest moments.
Wednesday, March 2, 2011
I am sure some of you are wondering what is going on. Here is the whole story to fill in the gaps left by facebook! Yesterday, right before dinner, Alex and Skye were playing outside and spending some good bonding time on their last night together. Alex came up the back steps with a look of panic on his face. i thought that maybe Skye was hurt and he was coming to get us. As soon as he came in the door, I saw blood dripping down his stomach and a hole where his Jtube should be. We all immediately sprang into action. Alex was in quite a bit of pain. Alex's Jtube was placed 2 years ago in a surgery that took over 4 hours. He was opened up and had this tube surgically placed. I quickly grabbed our spare Gtube to see if i could get it in his intestines to keep the stoma (hole) open. I could not get it in and it was too painful to play around with. It was very clear we were heading to the hospital. We headed to the local hospital. They quickly let us know that they could not help us and that we would have to go to the children's hospital in Jacksonville. We drove the hour and a half to Jacksonville (the first hospital was not even equipped to transfer a pediatric patient). We arrived at the second ER around 9:30 last night. The two main concerns were damage to his intestines and a possible infection. We got here and they didn;t do much before deciding he would need surgery and they would just observe him until a transfer could be arranged. I did at least convince them to run some labs which looked okay. They started the process of transferring us to Houston when we hit our first road bump. Memorial Hermann's plane had left to fly out of the country and could not come get us. This hospital doesn't have a fixed wing plane so they started making some calls. They found a company capable of transferring us, but they would not do it without a $15,000 credit card authorization to ensure their payment. We do not have cc's so that was out. After much frustration it was clear that we were stuck until the morning when insurance authorization could be aquired. Today we spent most of the day in the ER still waiting on approval. Around 3:00 we were finally given a regular room. The social worker, the doctors, the transport company and the team in Houston all worked tirelessly to get thenecessary approval for us to be transferred. At 7:00 tonight I got word that Aetna has denied a transfer. We are still working on an appeal and also trying to get medicaid to pay it. If neither of those happen we aren't sure what to do. We do not feel it is safe for Alex to have surgery in a hospital unfamiliar with his care and then have to navigate his metabolic state post anesthesia and restarting feeds, etc. Our only other option is to get our home health to send supplies to run IV fluids while we try to take a commercial fight from here to Houston. No one thinks that is the safest thing for Alex either. So right now we are stuck between a rock and a hard place with no good options. We are just praying that one of the insurance companies will do what is best for Buggy and get us home.
On the bright side, Bug seems okay and has been an absolute angel. He really wants to get to Houston, but I could not ask for better behavior.
I will continue to update on facebook as things develop.
Thank you for being so loyal and loving our family through all our ups and downs.