Thursday, April 21, 2011

Dayo Uno: Houstono


Nate and I crossed over the Florida state line earlier this evening, and we are now nestled quite snuggly into our hotel room in Pensacola, leaving us about 5 hours of traveling remaining tomorrow. Leaving the Houston city limits this morning was accompanied by a good cry...partly due to sheer exhaustion, partly due to being quite overwhelmed by all the new info, and partly due to the emotional toll all of this takes on us from time to time. And it probably didn't help that I was listening to old Sarah McLachlan CD at the time, which isn't exactly the most chipper thing to listen to when you are already a bit down in the dumps. But it was definitely one of those cries that makes you instantly feel better when it is over...ready to tackle everything head-on all over again.
This trip gave us a lot of info...and a lot of that knowledge wasn't all that great. It was most definitely that hardest trip we have taken so far from a medical info standpoint. While our team at home is absolutely incredible, it doesn't even begin to compare to the mito clinic in Houston. They just know so much more about this disease. We have known for some time now that Nate was having increased problems, but with the lack of knowledge about mito at our home hospital, we didn't test or become too concerned about the new or worsening symptoms. Ignorance is bliss sometimes...until you realize that your suspicions are even worst than you even imagined.

The first full day of medical testing and appts started bright and early in the morning and ended at near quittin' time. Since we had to be at the hospital so early in the morning, the 4 hours of sleep I got the night before wasn't nearly enough to tackle the marathon day. But the day was indeed tackled, and my littlest guy amazed me once again at his ability to face so many tough situations without complaint. He truly does amaze me...I can't say that enough. Sometimes I want to kiss his face off. Especially when at the end of our very long and arduous day, and after his first blood draw of the week, he looks at me and says through tear rimmed eyes "I so pwoud of you mama! I did so good with my blood and I so pwoud of you!" Obviously in need of some intense praise, I just hugged his teeny body close and made sure he knew that it was I who was proud of him.Nate partook in a mito/GI study on Monday. Essentially, it is a research study that looks at the gastric emptying and motility of patients with mito. They needed 26 patients for the study and when we received the call asking us to participate a few weeks ago, it made Nate number 26. I am really looking forward to the data that will come out of this research.

We already knew that Nathan had gastroparesis. A gastric emptying study done when he was less than a year old showed that. I can't remember the exact number, but his half emptying time then was around 100 minutes when a normal half emptying time is under 90 minutes. He has been on motility meds for a little over 2 years because of it, but we have noticed over the past few months that they don't seem to help him all that much and that he is eating less and less and really struggling with weight gain. I knew that it was pretty much a given that his gastric emptying time would be delayed...but it was even a shock to me with how delayed it actually was.After eating his toast, orange juice and a radioactive egg, he was placed under a nuclear medicine machine that took pictures every minute for 90 minutes as the food moved from his stomach to intestines. My amazing little fella laid still for the 90 minutes, perfectly content to watch cartoons. We went back 4 hours after he ate for another minute scan and again 6 hours after he ate for the last of the scan (another short one).

When meeting with the GI doctor conducting the study, he said that Nathan's motility testing was grossly abnormal and overall one of the top worst ones in the study. "Grossly abnormal" are definitely two words that you never want to hear when someone is talking about medical tests. Nate's half emptying time (time it took for half the food to leave his stomach) was 196 minutes. That is a dramatic change from just 2 years ago. This test also showed that there was delayed small bowel transit, and that there was absolutely no food in his large intestine at the 6 hour mark, which is significantly delayed (food should be there by 4 hours). This testing showed that not only was his stomach horribly delayed in emptying, but his small intestine is suffering from terrible motility as well. Essentially, his GI dysmotility due to mito is progressing at a rate that we never expected. Though his recent increased symptoms make complete sense now, it is so very difficult to see how much his gut function has declined so drastically over the past 2 years.We also met with a different GI doc in clinic that day as well. I wanted to meet with a GI that is more familiar with the presentation of children with mito than our home team in Florida. While our GIs are wonderful, the docs at Memorial Hermann have so much more experience with mito kids. This GI doc ran quite a few blood tests on the little guy and also recommended that he have an upper endoscopy when we get home to check for eosinophils in his GI tract which would give another reason for his stomach pain and failure to thrive. We also have some big and serious conversations to have with our GI team when we get home on the next step for Nate regarding treatment.

So, a long day to start off a long week. The little guy was a trooper...simply amazing as he tackled the annoying testing with no complaints at all. I am so thankful for this little guy.Day two and three of the trip to shall come tomorrow or Saturday. :-)

6 comments:

Lauren said...

You are right around the corner from me. I am about 15 minutes outside of Pensacola! Hope you and your little man get good rest tonight and have safe travels tomorrow.

Christine on April 21, 2011 at 10:56 PM said...

Oh Amber! Nate is in my prayers always. Such hard news, even if it does help make sense of things. It certainly isnt any easier!!!

I just found out that one of John's co-workers has a son who is 4 or 5 has recently been dx'd with Mito as well.

Much love and many prayers going out to you and Nate and your family!

~plaid on April 21, 2011 at 11:10 PM said...

Wow! I can understand the "ignorance is bliss" line. :(

It is weird to read eosionphils again on another mito blog. It is something that is really making me curious. Did the docs in TX say there is a relationship with mito an eosinophils?

We had been recommended to go out to TX a couple of years ago since docs here felt they exhausted everything they had, but we just didn't know if it was worth it. Thanks for sharing your experience. We are likely going to go one more round here w/ specialists, but are going to start considering TX if things aren't figured out here. It helps to know what experiences others have to know if it's worth the real hassle and expense it would be to go out of state.

I hope that though the information is overwhelming, that ultimately it helps to improve Nate's care.

Lok on April 22, 2011 at 2:02 PM said...

Amber, I just want you to know that EVERY time I read your blog or see FB updates, I pray for Nate and for y'all.

Is there any chance that Nate would benefit from breastmilk in some way? Would it be easier for him to digest?

Kyla on April 22, 2011 at 8:12 PM said...

Sorry you guys got tough news, but at the same time, I'm glad he has a team that is on top of things and you guys can now act based on really solid info.

I'm so looking forward to our first visit with Dr. K this summer.

Anonymous said...

Amber, I'm certainly praying for little Nathan right now and for healing. I know God is able!!!
Big hugs to you both and all your family!
My love,
Aunt Geraldine

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