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

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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