Monday, April 25, 2011

Day 3: Houston...and some changes on the horizon


Everyone knows someone who has earned the label as an excellent hugger. I...am not one of those people. I often go in for a hug too clumsily, stop too early and make it seem superficial, or do a half-hug that only seems to mean that I am totally uncomfortable in the embrace. When I initiate a hug, it usually ends up more awkward than not. Its just a skill that needs fine tuning on my end.
But we all know someone who seems to excel in the art of hugging. They come towards you with complete open arms, which makes you never second guess that it is a warm invitation for an embrace. Their hugs wrap around you snuggly and make you want to instantly melt into their chest. Its rare to get an embrace so genuinely loving and warm without a hint of hesitation, so it is a special treat when it does happen.
Our immuno/pulmo in the mito clinic is one of these expert huggers, and I can not get enough of her warm, welcoming embraces when we see her. Hugging seems so natural to her, and it is amazing the sense of trust and admiration that grows in her as a person and a doctor when she gives that warm hug after a few months of being away. She's a dignified lady, who makes jokes about how she loves the "grey haired" look of her age. She's classy and friendly and loving. She won our hearts and trust the first time we met her, and our love for her grows each time we visit.

Our appt with her this time was extremely easy and enjoyable (despite the little man being in some kind of mood that day...but it was day 3 in a long stretch of appt days, so I gave him a little leeway). She did up his dosage of Flovent since he is still grunting with exhales some in the evening and wheezing during activity from time to time. After not responding to his pneumo vax and being revaxed, he has finally mounted a beautiful response. We will check these again at a later time to make sure that he is indeed keeping these titers. She ran some more labs on him because he continues to have numerous lymph nodes that are enlarged, though I am fairly confident that we will never know why they remain that way. All in all, it was a great visit. A great ending to a tough trip.
We headed eastward toward home the next morning. Although it was good to be heading home, it was also hard to say goodbye to those friends that we have grown to love so deeply over the course of our trips to Houston. We leave our hearts with them each trip and look forward to 6 months down the road to see them all again. The trip home was uneventful and made me thankful once again that my little guy is such a great traveler. While traveling, I called our GI team at home to set up an appt to discuss our Houston trip and new testing information and was surprised that they had an appt opening for Monday morning.
Jay, Nathan and I headed to yet another appt this morning. Through this journey, my darling husband has accompanied us to all of the big appts...essentially, he will drop whatever he is doing to be at any appt I say I need him, but most all of the follow-up appts are left to me and the Nateman to tackle as Jay works or takes care of the girls. After our first appt with neurology, he came to all of the neuro follow-ups with us until Nate was diagnosed (those were really tough and long appts). The three of us went to Atlanta together and to Houston the first time we started in that clinic. And today, since we both knew we would be met with big decisions regarding Nathan's care, he accompanied us to our GI appt.
As it stands right now, Nathan will undergo an upper endoscopy on Thursday morning to take biopsies from his GI tract. He will have a repeat gastric emptying scan done soon so we can get an accurate view of how his gut is responding to the motility meds he currently takes (the last GES in Houston was off meds for a couple of days), and we will meet with a surgeon soon in preparation for the placement of a feeding tube.This plan did not catch us off guard. Our GI and Pulmo team has mentioned a feeding tube a couple of times in past visits, but we have never felt that we were quite there yet. We did, however, know that it would be inevitable in Nathan's life and care. He has struggled with growth and motility issues for some time now, and he has recently struggled quite a bit. He refuses some of his favorite foods because in his description "they hurt my belly". He complains of stomach pain almost on a daily basis and has recently really started to struggled with intense bloating on top of it all. He has been on 3 different motility meds and none seem to be helping as much as they should. We knew he was struggling, but we didn't quite know what to do.

While in the nuclear medicine waiting room before Nate's GI study in Houston, I prayed that God would give us guidance and show us the path he would have us go with our son's care. We know that Nathan and others suffering from this disease have to live life with daily pain...its a horribly unfortunate part of the disease process. But, we also know that with the daily pain he deals with, there are pertinent times where we can intervene and help in his quality of life. The problem is knowing what we can do and when we can do it. So in this moment, I prayed for guidance. "Lord, please show us if we need to intervene with further measures to help Nathan's GI system. Give us clear guidance." was my prayer in that waiting room.Clear guidance was indeed what the Lord provided. After meeting with the GI doc conducting the study, in which he told me that Nathan's results were some of the worst in the entire study, I thanked God for the evidence he gave us to know the next step...a step that we have been so unsure about for over a year. Conversations and emails between Nate's other doctors confirmed what we had on our hearts...it was indeed time to intervene and give Nathan additional help from a nutritional and hydration standard.

So, Nathan will have a feeding tube placed within the next few weeks. Our GI team is recommending a GJ tube instead of the usual first step of a G tube. For those not familiar with the medical terminology, a G tube is a tube that is surgically implanted directly into the stomach for feeding. A GJ tube is a tube in the stomach and a tube in the small intestine. We will feed through the J tube (jejunum: small intestine) and vent through the G (gastr: stomach). Our team feels like a GJ is inevitable in Nathan's case, so they would rather start with a GJ instead of a regular G tube. However, the final decision comes to the surgeon who will be placing the tube.He will still be able to eat by mouth anytime he wants. A feeding tube for him will not change that. However, Nathan has been eating less and less the past few months. We will still encourage eating in every way, but we will also have the ability to supplement him on a regular basis with the nutrients and fluids that he does not get. Like our GI mentioned this morning, this is a "quality of life" decision for Nate. We can help him feel better by helping in this area and potentially give adequate nutrients and energy for the other parts of his body as well. He went on to explain that helping this little disease-related issue may end up helping other issues along the way and make him feel so much better in the meantime...much like it was when we started oxygen a year and a half ago.
This road is a tough road at times. It is quite difficult knowing that the "extras" Nathan has (oxygen, feeding tube, multiple meds) will most likely be with him the rest of his life. That is one of the reasons we are always so hesitant to add new things...because we know they are probably here to stay. But if it means that he will have happy and healthy days, we are more than willing to try anything.

We prayed for guidance...and guidance is what was provided. God is so merciful.

10 comments:

Other Mother on April 25, 2011 at 11:01 PM said...

Hugs to you all as you continue on your journey. Having a lot of g tube experience (but not GJ), if there's anything I can do, please let me know. I'm thankful you have other mito families who can support you, becuase they truly understand what you are experiencing.

-Karen

Clara-Leigh on April 26, 2011 at 1:19 AM said...

Sounds like a lot to digest....sorry, no humor intended there.
I sometimes miss Garrett's g-tube. I seriously do. I was worried that it would be a huge deal, and while it was to us at first, once we got over the thing sticking out of his precious tummy, it became our best ally. We were able to give feeds and meds and KNOW what he was getting was enought and the right things. I know seeing it in after surgery was a shock to me and even made my knees weak, but all in all, it saved Garrett's life then, and often Oscar and I wish we had it back!!!!!! Hugs, and let us know when surgery is scheduled. We are praying for you guys!!! And could the Nateman get any cuter?????? My gosh, I want to pluck him off this screen and hug him!! PRECIOUS!! And of course I ALWAYS love your photos!!!!! Blessings to you and yours, my beautiful friend and SUPERB mom!!!!
Clara-Leigh

Dianne on April 26, 2011 at 7:06 AM said...

Just love and prayers for this incredible journey Nate and you all are on. May God continue to give clear guidance for the steps.

Angie E on April 26, 2011 at 9:31 AM said...

I read your post and just cried. My heart aches for you all and for little Nate. Amber, you continually amaze me! God has given you such grace to well, keep up with it all and you are continually giving God praise. Praying that God will continue to provide guidance and His sustaining grace through it all. Life is so precious. Now I'm off to go play and love on my kids with renewed zeal and vigor!

april on April 26, 2011 at 10:57 AM said...

I cried too, but I am so happy that you got a definite answer that you are comfortable with. Let me help with the girls on Thursday. Love you all, missed seeing you last week!

Amanda on April 26, 2011 at 11:52 AM said...

The Lord has a way of preparing us for tough steps we eventually will have to take. I remember you talking about the tube several times last year and dreading having to go there. It’s a relief now for him to have it; no matter how difficult it will be to adjust. Even though it will be tough it will be a blessing and a relief for him and y’all. The Lord is marvelous in all His ways. Miss y’all.

Mighty Mito Mom on April 26, 2011 at 2:22 PM said...

Oh, this made me cry. He is just such a cutie pie! The feeding tube was personally my scariest nightmare but turned out to be the biggest medical blessing for us. So much more peace, physical growth and rest came with it. Praying for a quick and easy transition with this for you all.

Feeding Tube Awareness on facebook is an excellent help for all the many questions that crop up along the way. Those ladies are such a help and respond immediately when you need answers.

Hugs,
Amy, mom to little Molly who has mito, too.

Care Page: LittleMissMollyPop

Jen on April 26, 2011 at 8:51 PM said...

Sending love and continued prayers for Nate and your family.

Leigh, Tucker's Mom on April 26, 2011 at 10:16 PM said...

Hi Amber,

I am not even sure what to say.

My first reaction is WOW, Lauren has grown up! She looks too old in those pictures.

I just read over the last few posts, you all got so much information in the last few days. I will pray for guidance for you, your family, and Nate's doctors.

Thanks so much for sharing the updates and your journey with us.

Leigh

Kyla on April 26, 2011 at 10:31 PM said...

Getting KayTar's g-button was the best decision we ever made for her, though we struggled a lot with it before hand. I hope the same will be true for you guys. It has improved quality of life so much!

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