Six Month Update| Facing the “T-word”

Just Keep Swimming, Swimming, Swimming

Minus our little overnight hospital hiccup, this really has been another great month. We are so grateful for each “good” day we have. After some reflection, I think the short hospital stay was actually a twofold blessing in disguise. First, it reminded us to not take anything for granted and to not let one day at home go by without thanking God for protecting Belle….kind of a wake up call if you will. Secondly, I had the opportunity to have a sit down with Belle’s head doctor and we hashed out a lot about her care, MMIHS.org, and some of his personal thoughts on MMIH treatment. It was a very positive and encouraging conversation.

Since Belle is now 6 months old, at her recent clinic visit, I asked the doctor for a “big picture” report. We spend a lot of time analyzing and trouble shooting her day to day, so I essentially asked him the same question so many people ask me, How is she “doing?”  apart from the obvious. Dr. Rudolph spent over an hour with us, and said we need to analyze three main areas for kids living on TPN: growth, liver function/damage, and line infections/sepsis episodes.

Regarding growth, although Belle had hit a bump in the road for about a month and a half, she gained very nicely since her last checkup with the increase in calories they gave her. She is definitely a peanut, but that’s not so bad. Her development is on track and although she is small, she is growing at a rate (now) at which they are comfortable.

As far as her liver function and possible damage, Belle’s labs show that her liver is currently completely normal and functional. Dr. Rudolph did tell me that the most efficient way to check for liver damage is through an ultrasound and biopsy. He may order the ultrasound soon just as a secondary measure, but he feels confident that her liver is doing well and that the fish oil based lipid she is getting (still in clinical trials in the US) is doing the trick to preserve her liver as long as possible.

We are officially 6 months in with no line infections. We are super protective of Belle’s line and do all of her line care ourselves (Joey does most of it, though I’ve recently become more comfortable so he can get out with his friends some in the evenings). Our nurses are incredibly dedicated to and meticulous about keeping her room and our work area clean so I know that is having a big impact. I know that an infection is probably bound to happen at some point, but the fewer the better as she can become extremely ill very quickly and over time, risk losing access veins for her nutrition.

So big picture, we got a very good report. One of the greatest blessings I have had as a Mom is seeing God’s protection over her life, even in some very scary situations. I’m trying to focus on looking back more than forward when it comes to Belle’s battle with MMIH, and looking back over the last six months, I am filled with joy and gratitude.

Facing the T-Word

While I knew Belle’s team was eventually going to approach me about transplant, it still leaves a parent in a bit of a fog when the doctor actually sits you down and tells you it’s time to make some decisions. At Anabelle’s six month appointment, her head intestinal care doctor told us he felt it was time we took action towards a transplant evaluation and probable listing. After our talk, he sent in the transplant coordinator to give us some information and answer a few of our initial questions. Since I have had a lot of people ask me if/when I think Belle will get a transplant, I thought I would try to explain and clarify a few misconceptions about transplant for Anabelle.

*First and foremost, transplant may not be the best choice for Anabelle, at least not now. Her intestines don’t work, however, technically you don’t need functioning intestines to live. Belle actually has a pretty good quality of life. There isn’t anything she can’t do that my son ever did as a six month old. Yes, she will have some challenges and requires a lot of care, but continuing to live on TPN is a viable option for her, for as long as her liver and other functioning organs keep on keeping on. There are very serious risks with transplant, lifelong medications, possible rejection which could lead to virtually living in the hospital, and I’m sure other complications they haven’t even told us about yet. The benefits of a transplant (getting off of TPN, no more central line, etc.) would have to outweigh the risks, or she would have to be so sick that there really wasn’t any other option. Perhaps that day will come, but it’s not the way it is right now.

*The first step, which will happen in the upcoming weeks or months will be a transplant evaluation. That will involve an inpatient stay at Children’s where Belle would have various tests ( BLAH….the WORST part about all of this is watching her go through crap), and Joey and I would have to meet with doctors, surgeons, psychologists, financial planners, social workers, etc. to be educated and informed about which specific organs Belle needs, what life after transplant may look like,  and a whole lot of other information I don’t know enough to write about at this point.

*In Pittsburgh, there are different statuses of listings. For one status, she would be storing up wait time, without being able to get a call, and for the other status, we would actually be waiting for a call. I won’t pretend to know everything about that or what they will recommend but I’ll keep ya’ll updated.

*I don’t like to talk the financial side of all of this too much. God has been so faithful and we truly do not feel worried. In fact, it fascinates me and has only grown my faith to watch him provide in the most peculiar and surprising ways. However, the coordinator seemed concerned about it and kept talking about authorizations and approvals for everything, so I did awkwardly ask the probably naive question, “So uh, does insurance cover this?” She said she couldn’t answer that for sure until our evaluation when they would give us a dollar amount, but that fundraising would be involved and we would have out of pocket expenses. The reason I’m mentioning this now is that the students (and faculty) at AHS are working incredibly hard on a fundraiser for Belle and three other families in our community. I recently told one of the advisors it is perfect timing as we start moving in this direction. Since I always appreciate knowing where my money is going when I donate to something, I wanted to share that the money raised at the Hawkthon will be such a blessing to our family. The timing is just amazing. It will be used to help with expenses of this upcoming hospital stay such as meals, gas as one of us will be driving back and forth in the evening to stay with Jonah, and living expenses as Joey will have to take another week off work. Having your own business is a blessing in that he can take off without fear of losing his job, however, it also means that when you don’t work, you don’t get paid. Anything left after that would go directly to a fund we will be starting for Belle’s future/transplant, or whatever medical treatment she will need. To the AHS faculty, community who has supported this event, and most of all to the students (many whom are my former students) who are working so hard to help four local families, please know you are truly blessing us and taking care of a need that was already in the works before we knew anything about the Hawkthon. What a blessing you all are to us.

The whole idea of transplant, of multiple organs, of more hospital stays and higher risk is an area to which I have to be very cautious about letting my mind wander. Although I’ve been dreading this evaluation, another hospital stay that puts Belle at risk for infection and having to leave Jonah and burden our families, watching her go through uncomfortable and even painful testing, I know it is an important step in Belle’s care plan and future, and something that needs to happen sooner than later. So again, we take the dark thoughts captive and refuse to let our minds wander too far past the blessings of today and the joys of the past six months with our sweet girl. I leave you with these words from scripture that I have to keep repeating to myself, and some fun pictures one of Belle’s nurses took with her.

Matthew 6:27, 33-34

“Can any one of you by worrying add a single hour to your life? …But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore, do not worry about tomrorow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

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