Wednesday, April 7, 2010

A little update and lots of pics

After our appt with Dr. K yesterday, we came back to the hotel where Nathan proceeded to sleep for a few hours in an attempt to catch up on his traveling sleep. The day was absolutely gorgeous, so when he woke, we decided to head a coupe of miles down the road to the Houston zoo. The zoo is literally right past the hospitals on hospital row, so not only did Nathan get a kick out of all of the animals, but he was equally amazed at the multiple helicopter landings and take-offs from the near-by hospitals. In this pic, I have circled Children's Memorial Hermann Hospital directly behind the little guy:
Nate really enjoyed the zoo. He was amazed at all the exotic animals and kept asking so many questions. When we arrived at this cool beast, his running commentary was "Oooh, a cow! Noooooo. Oh yah, it a cow. Noooooo. Mama, what IS dat?"
Late afternoon, we dined on Nate's favorite food in the entire! Seriously, if the world only provided pizza and cereal, Nafey boy would be happy as a pig or lark or any other living thing that seems to be happy all the time.
With our bellies full and our spirits still high, we decided to take a casual stroll through Hermann Park. This park is absolutely gorgeous and peaceful, and we thoroughly enjoyed the walk. We even gave a dollar to a man with some jacked-up teeth playing the saxophone. The entire afternoon was just so much fun and relaxing and exactly what we needed.
This morning, we had an appt with the immunologist/pulmonologist in the mito clinic. This turned out to be such a big appt, since Nathan has quite a few problems with breathing issues and his immune system. Dr. P was extremely interested in all of Nate's labs...she has recently written a grant to study and publish information about mitochondrial disorders and immunological problems, and she wants Nate in the study if she is able to get it funded. It takes so much energy to create the cells we need to keep our immune system working properly, which is why we see low IgG with Nate and problems with retaining titers. Dr. P said that she is seeing this trend in quite a few of their mito patients, and they really need to study the reasons why more and publish this for everyone.

She was also interested in Nathan's blood gases and sleep studies and said that it is completely evident that his body needs the oxygen supplementation we have been doing for the past few months. Again, she said that she has a few mito patients who are like Nate in this area and oxygen has been an incredible help to them as well. It all boils down to energy again...for some reason, these kids are breathing extremely shallow, thus needing to breathe faster and harder to get adequate oxygen levels in their blood. They usually keep their saturations normal for the most part, but only with an extreme difficulty in their work of breathing (retractions, tachypnea, etc). They are exhausting themselves by merely breathing, and this is causing elevated lactic acid levels as a by product. This has definitely been the case for Nathan in every aspect, which is why we have seen such a dramatic improvement with him on O2. He is able to conserve energy so much better with the help of oxygen supplementation, which helps his body and other organ systems work better.

She did say that Nathan's spleen was a bit enlarged, but his liver felt fine this time. She also gave him a pneumovax and a lab order for eons of blood for multiple tests. I really loved this doctor! We talked for a very long time, and she was so thorough and easy to talk with. I can not be more pleased with the mito clinic here and am so thankful that this avenue was opened up for us. After the appt, we had lunch with Samuel, Missy, and Samuel's grandmother at an amazing burger joint up the street. As always, it was so much fun talking with Missy and her mom, and Samuel stole my heart once again when he climbed up into my lap. He is truly the sweetest boy! Wish I could say the same about my little hooligan today...he was just plain rotten. In his defense, he was tired and had half his blood drained, but he was still rotten.
After another nap, we headed to spend the evening with another mito family. Nathan was in hog heaven as he walked into a house full of boy toys! It was such a fun evening! I'll post pics of that tomorrow. As for now, well, it is getting late and we have to be at the hospital at 6:30am for Nate's MRI/MRS. I've set the alarm to go off at 4:30am to pump him full of as much apple juice as I can before we head for the procedure (they really do take amazing precautions with the mito kids here, even down to modified fasting precautions). It will be a long day tomorrow, but I pray that the little man will do well.


Heidi on April 8, 2010 at 4:24 AM said...

Beautiful pictures of your sweet boy (rotton?) I dont believe it! Im glad the appts went well and you had a great visit with Missy. Samuel is too cute! Praying for your little man tomorrow-
Heidi & Jack.

Anonymous said...

Was the saxophonist "Bleeding Gums" Murphy from the Simpsons? Glad to hear you are having a productive trip. We are all praying for you all.

Wendell Miers

Wanda on April 8, 2010 at 8:59 AM said...

Thanks for posting updates! Pray for safe trip home.

Autryville on April 8, 2010 at 10:47 AM said...

The picture of him eyeing his pizza on the fork is just about the cutest picture I've ever seen. We've been praying for you this week!

Anonymous said...

What type of anethesia/sedation medicine did they use and did they do any special protocol for an MRI of a Mito toddler? Did they let you stay with him? I hope it went well for your little one.

Melody on April 8, 2010 at 3:23 PM said...

Awww! Make me wait for the pics, huh? He looks like he had a great time at the zoo and park! I am so glad. Praying all went well today. Hugs, girl!

Amber on April 8, 2010 at 4:09 PM said...

They first gave him versed and ketamine to make him loopy before doing the IV. Once the IV was placed, he was given D5 and a precedex drip. The anesthesiologist was simply amazing and is the one who deals with a lot of the mito kids here. She has a good cocktail figured out that works for a majority of her mito kids. Loved her to death and really want to pack her up in my suitcase...just like I want to do to quite a few from here. :)

Melody on April 8, 2010 at 9:22 PM said... just have to move on down here, girl! LOL! Then you can have them all you want! You already have built in friends here... :o)

Dawn @ My Home Sweet Home on April 12, 2010 at 9:00 PM said...

May the Lord bless your sweet family. I love the monkey kissing photo. :-)

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