So it's been 3 months since my last blog post. I started to write over the last 3 months, but ended up too busy or just didn't have it in me to complete. Our lives have been pretty hectic lately. We sold our home and moved into Thomas' parents vacant house. We just put a contract on a new home for our family last week. The last few months have been a whirl wind of emotions and one hell of a roller coaster ride. I'm ready for everything to settle down, but then again I would be complaining of being bored :-)
My main reason for the post today is to journal Traces medical history before I forget something. I hope one day soon I can write a fun post with lots of great photos. But for now it's just a boring medical update.
May 21 - Appointment with Dr. V (epileptologist). We decided that Trace will not be receiving a Vagus Nerve Stimulator. This was a decision made by us after concerns were expressed from Dr. K (mito/neuro) and Dr. P (immune). Their main concern was the high risk of infections. Trace has immunodeficiency. And it's worse than I thought. He is unable to fight any infection on his own. Placing a foreign device in his body would most likely cause infection. If we were to go ahead with the procedure, he would undergo IVIG two days before and then stay for a few days on IV antibiotics in the hospital after. VNS placement is a day surgery for most people. The risk outweighs the benefit, so for now he will continue having seizures. It's pretty heartbreaking to say the least.
May 30 - Trace had a sleep study. Sleep studies are the worst, but he did much better than last time. Guess he's growing up or just getting used to all of these procedures. We did receive the results which showed everything was okay. However I had to cancel his appointment with Dr. J and we have yet to get in to see her. She's one busy lady. She did order some labs which were drawn end of July.
June 18 - Trace had an opthamologist appointment due to more chalazions. He had 5 total (3 in right eye, 2 in left). We used Azasite for 2 months along with the usual Bacitracin. They are finally gone.
July 30 - Trace saw Dr. K (mito/neuro). I was excited to see her as Trace has been doing very well since his last hospitalization in April. She told me she was sorry to burst my bubble but she thinks he's only doing well since it's not the cold/flu season. She's still concerned about his immune system. I was okay with all of that since it's been the hot topic of all things Trace at the last few appointments. She wants immune labs drawn in October at our appointment with Dr. P. There has also been talk about IVIG from both Dr. K and Dr. P. This is not something I want to put Trace through. But then again, I will do anything to keep my child as healthy as possible. Double edged sword. She ordered an Echo and EKG as Trace's heart hasn't been checked in 2 years. No concern, just procedure to check these things.
August 9-11 - Trace was hospitalized for infection. It was a huge blow to have him back in the hospital so shortly after receiving Pneumovax. It proves everyone right. It's sad. This was an entirely different hospital experience as we were on vacation. We arrived in Port Aransas Friday at 4:00 PM. We noticed Trace was very fussy all day, but chalked it up to traveling. We took him down to the beach and he played in the water for about 20 minutes. He loves the ocean! He was exhausted so we went up to the condo and gave him a bath and dinner. He went to bed around 7:30 only having one small myoclonic seizure. He woke about 9:00 and was having a tonic clonic seizure. We administered Diastat and the seizure lasted a total of 30 minutes. This is an extremely long seizure for Trace. After family made a couple of phone calls, it was decided we take Trace to Driscoll Children's in Corpus Christi. This is something I should have researched before we even left town. But Trace has been doing so good lately I didn't feel the need. Stupid mistake, which will never happen again. We arrived and the ER was full and we were told to fill out paperwork and wait for triage to call us. This made me crazy as I'm used to my child being taken in immediately at CMHH. Trace remained postictal for over an hour. During that hour he spiked a fever of 102.4. I explained how we needed to be seen before the child with the small cut on his cheek and they didn't seem to care. That child went in and came out with a bandaid on his cheek and we were still sitting there. So I had to get a little more demanding. They finally made room for us after I explained how Trace's organs could be shutting down to the triage nurse. I know that's a little extreme, but they just weren't getting the severity of things. They had never seen a Mito child and had no idea how fast things happen. You do what you have to do for your child because no one is going to do it for you. Learned that lesson many years ago. The ER doctor contacted the pedi neuro team at CMHH. They instructed Driscoll doctors what to do. I did have Trace's medical protocol letter and it was a great help to the doctors. It also turned out to be something many doctors, nurses and med students wanted to read. Trace was admitted and we arrived in our room at 4:00 AM. Saturday AM his labs showed infection and it was decided that Trace not be released until Sunday at the earliest due to his immunodeficiency. There's that word again! All in all the team at Driscoll did great and continued to consult with CMHH pedi neuro the entire time. It was a learning experience for all. Thank you to all who prayed for our little Mister!
Hope, Love, Courage &Faith,
Laurie
