Saturday, January 14, 2012

Houston: Days 2 and 3

The drive out of Houston is always difficult. As I head east, passing the towering skyline of this Texas metropolis, the drastic range of emotions from the week always seem to hit. I bounce between the sadness of leaving the company of the dear friends I love so much there to the excitement of seeing my husband and girls as soon I arrive at home...the exhaustion of talking into the wee hours of the morning each night against the adrenaline of driving home...the extreme sadness at the realization of the medical complexities that encompass my son against the elation of the turning points in treatment options we are given to hopefully give Nate the best life he can have. The drive out of the Houston city limits is always difficult.

This trip was encouraging, for the most part. We seemed to have reached an amazing turn of events in the mito world, as there are numerous treatments and meds on the horizon for this disease to potentially improve quality of life. This is the first time in Nate's life that I have been excited and confident in the research and treatments that are at our fingertips. At the same time, going to Houston is always a difficult eye-opening experience as we are made aware just how complicated Nathan is in a medical sense. This disease has wreaked havoc on his tiny body, and that sobering realization just hits us every once in a while.

It was good to see our mito neurologist again and the gals working in the clinic. They are all so dear to our hearts. Dr. Koenig was very pleased with how Nate looks right now. She said that at this point, his body really needs time to recuperate and feel good and told me that we should not change any of his maintenance medical care (wean down oxygen, etc) for at least 6 months. His body needs to rest and continue to do so with the added support we are giving him. He needs to stay looking this good for quite a while before we are able to start decreasing some of his care. That burst my bubble quite a bit, but I understand what she is saying.

She is still a bit interested about the disease involvement in his liver and still wants to do a liver biopsy at some point, checking for mitochondrial depletion syndrome. She is going to try to get their GI docs to do this when he is under for the heart testing/possible repair, but it may be difficult to arrange both procedures together. I honestly am not too concerned about his liver just yet. Sure, he has random elevations in his LFTs and other strange labs pointing to liver disease due to his form of mito, but they do not seem severe in nature yet. I do wish we knew why these labs seem to fluctuate so much.

A good thing is that she does not think Nate has scoliosis, but is labeling it "functional curvature". It is what his body is doing to adjust to the stimulator and should improve as he grows bigger. That makes a lot of sense and is encouraging.

After the appt, she walked Nate and I down to meet and talk with the head of the peds GI team there. He wanted to see Nate and talk about the gastric stimulator. We talked for quite a while while Dr. Koenig wrangled with my energetic kiddo and tried to keep him out of trouble. It is always so wonderful seeing her interaction with these kids. She is so good with them. Nate loves her so much. Anyway, I had a great conversation with the GI doc about the stimulator, and he is very excited about this new treatment. This has definitely been a life changing treatment for Nathan, and Dr. Koenig kept remarking that she has never seen him look this good from an energy and pallor aspect. It was a good day all around.

We saw our mito immunologist the following day. This doctor is perhaps the best hugger in the whole world and has a fun sense of humor. I wuv her and always enjoy visiting with her a bit. Shortly after coming into the room, she started feeling around all of Nate's enlarged lymph nodes. You see, we have realized over the past few years that every time one of his lymph nodes swell, it never goes completely back down like normal. It stays a bit enlarged. He has several of these shotty nodes all over his body and has new ones enlarged every time we see her. Its strange, and we have no idea why it is happening.

Another weird thing we realized this trip is that Nate has abnormally elevated dr+ T-cells and has an additional strange finding with his double negative T-cells. Dr. Pacheco said that while she is not too concerned at this point, all of this is very odd and may be the reason behind the enlarged lymph nodes. She ordered more testing this week and may send some testing to Cincinnati soon to try to help determine what is happening with his immune cells. There are always more questions than answers in relation to his medical oddities. I wish we knew more about what is truly happening in his body.

Anyway, it was a busy week with a lot of information to process. I look forward to the day when we go to Houston and come home without the burden of processing new findings. The little guy did so well all week. He had a blast playing with all of his little mito friends and was so sad to leave them. He looks forward to spending time with kids who are just like used to tubes and oxygen and feeding pumps and lab work and countless hours logged in waiting rooms. Kids who have parents with bags under their eyes and perpetual worry lines in their face. Kids who understand the hardships of each other's lives and who are resilient enough to still laugh and play amidst everything.

These kids are pretty amazing.


Small Town Joy: on January 14, 2012 at 3:40 PM said...

So glad you have some new information under your belt. I pray for Nate from time to time (I always pray for Nafey-boy). It was interesting to look at the picture of kids and recognize almost all of them.

aprilnoshoes on January 14, 2012 at 5:04 PM said...

I love reading your blog, and I love the pic of the little ones sitting together in a circle :-) so sweet and I am sure so comforting for Nate too!

Kyla on January 15, 2012 at 8:53 PM said...

Dr. K is SO good with the kids. KayTar loves her, too. We always leave the appointment chuckling...until we cross the hall to the lab. ;)

Ashley Penn said...

Love his little heart! God blesses everyone of you to be able to handle these burdens. Not everyone could do it, Amber. You and these parents and mito kids are so strong. We love you and continue to pray for your family as well as the other families dealing with this same disease.

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