Sunday, April 11, 2010

More of Houston...


Abby: How are there hospitals in Texas? Texas is really, really poor.
Me: Huh? Poor?
Abby: Yeah. You know...it's that state with all those balls of string.
Me: Balls of string???
Abby: Yeah. The balls of string rolling around the town that's empty.
Me: (thinking...thinking...thinking...AHA!) Oh, you mean tumbleweeds?
Abby: Yeah! Tumbleweeds!
Me: You need to get out more, kid.

I do believe that I left off somewhere after Wednesday afternoon on our trip due west to the land of Houstonians. Nate slept a good portion of the afternoon that day and we headed a little further west to the city of Katy to spend the evening with another family dealing with the effects of mito.
This is the Pohla family. Nicholas, Nathan, and Daniel...all three with the exact same genetic defect of mito but completely different symptoms. That's how this disease works...strange little thing that it is.
Daniel is just a couple of weeks younger than Nate and is such a cutie! All of these boys were so sweet to share their toys with my little guy, who was totally in hog heaven with a house full of boy toys. While visiting, we were able to see Mr. Nicholas in action during his tae kwon do class. He had an upcoming belt testing coming up, and he was working so hard to break the board needed to pass the testing. I received a call Saturday night from the kiddo saying that he did indeed break the board and obtain the next level in belts. Way to go, Nicholas!Thursday morning was a very early day, as we needed to be at the hospital at 6:30 for Nate's MRI/MRS. After the work up, his procedure wasn't until 8:30, so that is quite a while awake without any food or drink, but the little guy did pretty well with it. We had an anesthesiologist who handles a good amount of the mito kids at CMHH, and she was absolutely incredible! Since she was more familiar with the way these kids handle anesthesia, she had tweaked her own little cocktail of meds to tailor to these kids. Mito patients are sometimes affected by anesthesia differently than others, and some anesthesia medications are toxic to the mitochondria themselves. It was such a relief to be where this was known and these "certain meds" were avoided. She also started Nate on a dextrose solution for the procedure as well to keep his body stable at all costs. Even though we have excellent care at our local hospital, being in a hospital that deals with these patients regularly is a huge difference. I'm so glad we had this testing performed in Houston.
It took quite a while for Nate to wake up from the procedures, but he woke up okay. After a late lunch, and a trip back to the hospital for some more blood work, we were able to spend a few minutes chatting with another mito family from the Dallas area who was admitted to CMHH that morning. It was so good to see this family, and the only hard thing was that we didn't have more time to catch up. Hopefully we can get on the same appointment schedule in the mito clinic and spend more time together in the future. Please pray for Ali and Alex during their hospital stay.

After this, we headed back west through Houston rush hour traffic (Thank God for HOV lanes!!) to spend the evening with the Knight family once again. Nate felt better that night than he had all week, and he had an absolute blast with Samuel and Lauren. They ran through the house back and forth and back and forth, and it was just a matter of time before the 84 feet of oxygen tubing (from both Nate's and Samuel's tubing) was wound together so tight that no one could move very far. Samuel came to me sometime in the evening with his tubing rather tight, so I tried to pull on it a bit for some slack...only, in pulling the tubing, I was reeling in a bewildered Nate on the other end. It was about that moment that we let the boys both have some "oxygen free" time. Samuel...oh, that boy completely stole my heart. The two of us hit it off from the start for some reason, and by the end, I was seriously contemplating the intricate details of how exactly I was going to be able to stuff him in my suitcase for the trip home. In fact, he and Nate had made a deal that Samuel would come home to Florida with me and Nathan would stay with his family in Texas. I came out of the bathroom at the end of our visit with Nate looking at me and saying "deal, mama. deal." He had agreed to the deal, and it was all settled between the two. The only problem I proposed to Samuel was that I didn't know how to access his central line, so it was probably a good idea that he stay with his mama who did indeed know this big detail in how to take care of the sweet guy.
I would have taken him in a heartbeat, though. He and his sister, Lauren...who reminds me so much of Emma that its not even funny. These three were totally the three musketeers all night and had an entire bundle of fun. We can't wait to come back and visit in 6 months! Friday morning brought about our return trip home. Nate woke in a good mood, and I couldn't help but smile as his little hand shook my shoulder saying "Dood Mornin' Mama!" over and over until I opened my eyes. The little guy sure did enjoy having someone to sleep beside him all week...my back, which had knees crammed into it all week, could not necessarily say the same, but it was sweet to wake up to that precious high-pitched voice each morning.The return trip was fine. We were both exhausted and Nate was very, very pale the entire day. He once again slept through the duration of both flights home, which made the trip especially easy. I think I may call his ped tomorrow morning to see if we need to start the little guy on some iron again, as he seems to be having a tough time making the red blood cells needed to restore the blood he lost this past week. It was a great trip! We should be getting the results of the testing trickling in over the next month, but I am not expecting any results that are huge. We head back the third week in October for more visits in the mito clinic. In the meantime, we have a very busy few weeks and summer ahead of us.

4 comments:

MamaHam on April 12, 2010 at 8:46 AM said...

Great pictures! He is soooo sweet. I am curious if you have seen Dr. Shoffner in Atlanta. He is the only Doc our Neurologist has suggested to us and I didn't know anything about the docs in Houston until I read your blog. They sound amazing and I wonder if it is a better option than Atlanta for us. Just curious....email me at energy4ethan@yahoo.com

Melody on April 12, 2010 at 10:46 AM said...

AWESOME pics, girl! Thanks for taking and posting them! I might just need you to email me some of those... Glad you had a good trip and you were able to visit with everyone!

Lisa on April 14, 2010 at 7:26 PM said...

Wonderful pictures! So glad you were able to visit with our mito families.

Lisa Q

Heidi on April 15, 2010 at 7:17 AM said...

GREAT pics Amber! AND finally some new ones of Melodys boys :) Daniel is really growing up! Sweet pics of the Samuel and Lauren too, they are adorable. Sounds like you had a wonderful time with our Mito families, totally jealous! I can see Jack fitting in perfect that day too. Thanks for the update, always hugs & prayers for little Nafey.
Heidi & Jack.

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