Alex and Maddy

Alex and Maddy

Thursday, October 29, 2015

Not the greatest of months

I am usually excited to blog about the fun we have had during the past month. Unfortunately this month didn't have a whole lot of fun, cool activities. Instead it was filled with a lot of medical appointments and hospital visits. What this month did give me is a reminder of how scary mito can be and an appreciation for our new norm which involves a lot less hospital time then it used to!

We started the month with a trip to Houston to check in with our specialists down there. It wasn't the easiest trip for Alex as he had several tests that are less then fun! On Monday, we started the morning with pulmonary. He was happy with how Alex is doing. Then both kids saw Cardiology. He also was happy with Alex and wanted to keep everything the same. He did confirm that Maddy has a hole in her heart, but wants to watch her and not repair it until she is a little bigger. Monday night Alex had a sleep study. He hates having all of that "stuff" hooked up to him, but he handled it better then ever before.

Tuesday we saw Dr. Koenig. She didn't want to change anything with Alex, but did let us know we need to do an MRI of his spine again as it has been two years. She was really happy with the progress that Maddy has made in physical therapy, but still does not like the way she sits, the positioning of her feet or her gait when she walks. She wants us to continue therapy three days a week. She also re-ran some labs that were off the last time we saw her. Once our appts were done Alex had to have cardiopulmonary testing done. It was really hard and took almost 3 hours to complete.

Wednesday we finished up with Dr. Pacheco. She is still watching Maddy closely as she feels like she has an immune deficiency that just isn't clear yet. She always likes to keep a close eye on our boy! After a TON of labs, we headed home.

We arrived home around dinnertime on the 7th and overnight Alex called me because he was extremely nauseous. He took his temp and it was fine so I gave him meds and went back to sleep. When I woke up at 6:00, he was crying that the meds didn't work and he was so nauseous. I went in his room and he had 103.9 temp. I quickly scrambled to pack a bag and head to the ER. Before we even got out the door his temp had climbed to 104.3. He was okay on the way down, but took a turn for the worse shortly after we arrived in the ER. His blood pressure that was fine on entry starting dropping rapidly and he lost perfusion (blood flow) to his extremities. His hands were as white as the sheets and ice cold. I know from past experience that this is not a good thing! The ER doc stayed in our room for almost an hour giving continuous orders. he was given a HUGE amount of fluids and a HUGE dose of hydrocortisone and finally started to stabilize. he was admitted to the PICU in assumed septic shock. However cultures never grew anything and he stayed stable! We were in the hospital for four days and the final decision was that he went into shock caused by adrenal crisis because of either a virus or his flu shot. It was the first time in a while that Alex scared us and was a reminder of how quickly things can turn.

We had a quiet week and a half recovering and then we were back to the hospital for surgery! Alex needed to have his port changed and a mole removed. Alex's current port was placed in January of 2011 after he was in septic shock in December of 2010. We were told that we couldn't leave a port in place longer then 5 years because it starts to adhere to everything and becomes difficult to remove. We feel incredibly lucky (and have worked extremely hard) to still have a port almost 5 years later without infection! So this was a planned surgery. The surgery went as planned. Alex has two incisions on his chest. One that is pretty small and one that is almost 2 inches long. He also has a long incision on his jaw line (maybe an inch and a half?). He proved once again how tough he is as he made it through recovery without ever taking a dose of pain meds.

We are happy it is almost November and hoping this month will bring back fun times and less doctors visits! I am continually reminded of how strong and determined my two precious children are and how very grateful I am I get to be there mom!

Ali

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