Lots of Pics

While I have had the best intentions of updating about all the fun we had in Florida, I realize that now a month has passed and I am not going to get to all of it. So I have decided to quickly recap the fun of the last month and load lots of pics to fill in the gaps! Alex and I left on February 23rd for our yearly excursion to Florida to celebrate Skye's Birthday and enjoy being with family. We were so fortunate that the next day was one of the last shuttle launches. We headed to the beach to watch the shuttle. It was amazing. I am so grateful we were there to witness it. On Friday, we headed to Disney where Aunt Jenn-Jenn, my good friend Amber and I all picked up our registration packets to run our first 5k. After registering, we took the kids to Downtown Disney. Alex and I and Grandpa were lucky to have the whole evening to spend with Amber and her family. Amber's youngest son has mito and we have a friendship I treasure. It was so nice to get to spend some time with her in person. Saturday we woke up bright and early to head to Epcot to run. For anyone who wants to run, Disney is the place to do it. We had so much fun and crossed the finish line full of pride. After the race we headed back to Jenn's house. We enjoyed some quiet time before Mimi, Pop-Pop and Aunt Trishy and Uncle Jack all came. Sunday was Skye's birthday party and another crazy day. Monday was a day I will always treasure. I had the luck of growing up with two incredible women as role models and teachers. One was of course my Mom (who I still count on daily), the other was our next door neighbor, Mrs. Tesoro. Mrs. Tesoro was one of the most important peoplle from my child hood. I spent countless hours at her house learning to cook, knit, sharing secrets and lots of laughs. She is someone who was a constant reminder of the kind of woman I want to be. We had not seen Mrs. Tesoro in years (since I was in college). We made the decision to make a trip across Florida to see her and introduce her to Alex. Although it was a long day (almost 10 hours in the car). It was so good to hug her and share a few more memories and laughs. Tuesday was supposed to be one last quiet day before we were to head home. Of course, that night right at dinner time is when Buggy pulled out his tube and the craziness of the next few weeks ensued!

Alex with his "best girl" Stacy

Grandpa with Alex and Skye waiting for the shuttle launch

Alex and Skye playing on the beach

Always ready to pose for a picture!

Grandpa showing Alex the shuttle launch

Alex at Downtown Disney

Fast forward to this week....We knew if we could get out of the hospital we had a crazy week planned! After some catching up of all the household chores that needed to be done. We packed for a cub scout camping trip. We set up camp on Friday and expected a warm night with perfect conditions. That isn't quite what we got. While it was warm, the winds were unbelievable! I was sure the tent was coming down on us. I wish I had a picture of all the tents leaning. Needless to say no one had a great night sleep. Saturday was a day planned with lots of fun and excitement. We started with a hike. Alex took turns hiking and riding, but did a great job. Then was some free time which the boys spent playing in the dirt in true boy spirit! The afternoon they rotated through 4 stations: knot tying, matchless firestarting, fishing and first aid. Alex loved his time with his friends. He also found time to make it to the playground with his friends. After a late afternoon course on volleyball, Alex was exhausted. So although we had planned to stay till the end we headed home.

Hiking! The Three Musketeers

Knot Tying

Firestarting

Alex's Den

Sunday we woke up to head to Six Flags which Alex had been waiting two weeks for. He was so excited to try out some new rides. Bruce and I were amazed at some of the rides he was willing to go on. He is definitely outgrowing the baby rides and wanting more daring escapades. The camera died pretty early on so I don't have many pictures.

After leaving six flags we had a little quiet time and then finished the weekend at one of his buddies birthday parties. What a crazy, but fun weekend. I am so thankful for all the incredible people who helped us enjoy this weekend and make more memories that we will always treasure.

The fun of the weekend quickly disappeared bright and early Monday morning. I woke up to Alex yelling for me beacause he felt "really shaky". I went upstairs and after a quick temperature check which was fine, I checked his blood sugar. His blood sugar was 25!!! This is critically low. I quickly realized his pump had malfunctioned overnight and not fed him or alarmed to let us know there was a problem. I scrambled to follow our rescue protocol. Ran Monday labs and get in touch with the doctors to be sure I covered all the bases. Other then feeling pretty cruddy all morning and having labs to match, he seems no worse for the wear today. It is very scary to me that the pump could have issues and not alarm to alert me of problems. It is also scary how quickly he can become unstable. Most kids, even those with mito are fine for several hours without eating. Alex's body just cannot compensate without near constant nutrition.

I was lucky to have an awesome girls night out last night with some of my dear friends. They are always there for me and happy to accomodate my crazy schedule.I love you guys.

We have a few days to catch our breath before we hit the road again. Thank you as always for loving us and helping us enjoy this crazy journey.

Ali

Let's Try This Again!

Okay so here we are 10 days later and once again we are gearing up for discharge! I am praying that we make it home for longer this time! After a week of very little intervention or testing, there has been a last minute rush today to get things done before tomorrow. So after much deliberation and confusion over Alex's need for nighttime Oxygen over the last week, the final consensus is that he needs blood. He has been sitting just over transfusion level for the past two and a half weeks. he looks exhausted, is extremely pale and has been struggling to keep his oxygen saturations up. So although we were told all week we would not transfuse unless he dropped farther, their was a change of heart today.

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.
Ali

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.

Not Much to Say

I haven't updated because I really haven't had much to say! We have sat in limbo ever since admission. We are running antibiotics. They did not want to do it from home. They didn't like the way he looked when he came in and decided it was "too risky". His labs are okay. He is sitting with his hemoglobin and hematocrit right above transfusion level as he has for most of the last two weeks. We have not run labs in several days, but will check them again tomorrow. His Ct scan showed his clot to be resolved so we can stop his lovenox injections as of April 4th. I know Alex will be very happy to be done with these painful shots. We have two main issues that we have mainly been dealing with. One, his GI system is not wanting to work. He has been VERY distended since we came in. He is uncomfortable and is tolerating a very low amount of feeds which means that once again we are counting on TPN for nutrition.

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.
Ali

Sweetest Boy

Alex just told me, "Mommy, having you as my mother makes me the happiest thing ever". So sweet!

Quick Update

Alex and I are doing better. Although despite my best negotiating skills it looks as if we will be here through the week. Alex has been fever free since Sunday. His labs have looked better since being back on antiobiotics which all support that he had an infection. The problem is we never found a source. So every one is in agreement that we are treating something we just don't know what. Because of that reason the doctors feel it is too risky to send us home on antibiotics. We started feeds yesterday at 5 cc/hr and will SLOWLY advance them until we reach 45 cc/hr, but I expect we will be home before we reach our goal. His poor little belly is still pretty distended, but he isn't in as much pain. In other medical news he is still sitting right on the verge of a transfusion. He also had a CT scan done this morning to look at his abdomen/reimage his DVT (blood clot) that was found in December. We are supposed to be stopping his lovenox injections in April and they wanted to reimage around that time so we decided to get it done while we are here.
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.

Ali

Disbelief

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

-Josh Groban

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!

Ali

Home is in sight

Alex is doing great! We have ebeen advancing feeds pretty easily and he has remained fever free. He received IVIG (to boost his immune system) on Sunday. His fever broke after that so the question remains whether he was getting sick. We stopped antibiotics this afternoon and we will watch over the next 48 hours to make sure he continues to do well. Assuming all stays on course we will be discharged on Thursday.
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.
Ali

Quick Update

We are hangin in there. Alex did spike a fever this morning. He is already on antibiotics so we ran some labs and also gave him a dose of IVIG to boost his immune system. His temp has stayed between 100 amd 101 for most of the day. We do not have a cause, but we are watching him closely.
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.

Ali

What a Crazy Day!

Sorry for the lack of updates yesterday. I was exhausted by last night. Yesterday started bright and early. I had the nurse in Jacksonville wake me up at 2:30 to catch a 3:00 AM taxi. We arrived at the airport and made our way through security without any trouble. We had a 5:00 Am flight that landed at 7:30. Alex and I both dozed off most of the flight. We were able to grab our bags and meet Ben to get to the ER. Even with the traffic we were at the hospital by 8:30. They were expecting us. We had visit fro Dr. K and Lakeesha as well as a surgery resident. We got a room quickly, unfortunately it wasn't on our normal unit. They were totally full. We went to the room and met with the team. We were expecting a quiet day and surgery most likely on Saturday or Monday. At 12:00 our nurse came in and said the OR was calling for him. He was probably the most panicked I have ever seen him. He cried to the point of hyperventilating and finally fell asleep in my lap. We were in pre-op for a while and then he was taken back. We are very fortunate that the surgeon was able to just dilate his stoma and pop the tube back in. Because we were going back to a floor that deals with less complicated kids we had to stayin recovery longer. His vitals were stable, but not normal. Finally at 6:00 pm we decided to send him back up to his room. His vitals continued to be troublesome. (HR's in the 50's and blood pressures of 60's/30's for those that are curious). The process was expedited to get us back to our usual unit. We moved rooms at 9:00 last night. Alex slept comfortable through the night. He is VERY quiet today and is on the verge of running a temp. We are watching him closely. His labs look pretty good. His clotting numbers aren't great so we are holding his lovenox shot which Alex is really happy about. If it is high again tomorrow then we will have to treat it.
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.
THANK YOU!
Ali

The Whole Story

I have so many fun and cool things to blog about from this past week. And of course lots of pictures, but those will have to wait.

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.
Ali