I want to shed some light on what has been on my mind, what we have been discussing with the doctors, and how delicate this process is. Instead of giving you bits and pieces, I am going to do my best to paint the entire picture. In doing so, you will hopefully understand why I have some specific prayer requests that are taking the spotlight today and over the next several days. After I put this amount of detail into explaining it, you should get a good picture of why Reece’s particular situation is so complex and why he continues to be in the hospital.
- First, for the majority of our hospital stay, Reece has been on IV nutrition which is called “TPN”. For much of the time we have been here, he has had no desire to eat anything, like most of the kids that are here. At times he has been on 24 hours of TPN. Right now, he is on 12 hours of TPN (the lowest time setting you can be on before they take it off completely).
- Second, he is on a steroid for his GVHD. Steroids give you a boost in appetite, so often times when people are on them, they gain weight for that time period. Reece’s body’s reaction to the steroid is difficulty in regulating blood sugar. He has high insulin needs because of it.
- Third, Reece receives insulin added in his TPN to compensate for the sugar he receives through it. It is a very high dose of insulin. Additionally, he receives insulin “adjustment” shots if his blood sugar is too high, but the TPN sugar he gets overnight is generally balanced by the insulin that is added.
- Fourth, Reece is not a big eater. He is eating 600-800 calories per day on his own, which is a lot for him. He is a child who couldn’t care less about eating. Since birth, it has been a constant negotiation with him to eat food. We bargain, we strategize, I don’t give many snacks in the day in order to get him to actually eat during mealtime. In fact, he still prefers that I feed him bites versus him feeding himself (even before hospitalization).
Keeping all of that in mind, the other tricky deal with this is that his lungs are incredibly sensitive to his weight gain. Reece has weight gain from steroids to some extent, but mostly, he is retaining fluid. During BMT, cells become weakened and can leak fluid into tissue. This is very common on this floor. When Reece was admitted, he was 17.1 kilos (1 lb = 2.2 kilos). Today, he is around 20.5 kilos. It is when he gets upward of 21 kilos that his lungs really struggle. In an effort to keep his weight down, they will give him diuretics, so that he urinates more frequently to get the fluid off. However, the more diuretics you give, the more irritated your kidneys become as they get dried out. Lungs like to be dry, kidneys like to be moist. So they are trying to find the right balance of getting the fluid off without making his kidneys so agitated that there are problems.
Because he is so sensitive to weight gain, it is important to consider how much fluid is entering Reece’s body. They monitor what he drinks, but he is allowed to drink as much as he needs. They want him to resume normal eating and drinking. The other two major sources of fluid are from red blood and platelet transfusions and, our good ol’ buddy, TPN. Clearly, there is no option with his blood transfusions. He has parameters higher than most for platelets (as a precaution for his hemorrhage–although they have greatly reduced that to almost the “normal” parameter for the other BMT kids). He needs to receive blood to survive, so there is no way to adjust that. However, the TPN is a much debated subject and was no exception at rounds this morning.
I have been chatting about the TPN for days with the doctors, trying to figure out at what point they judge whether or not to take a child off of it. My two cents, as Reece’s mom, is that if they are looking for his appetite to increase even more before they take him off, it’s never going to happen. This is the most he is going to eat without the removal of that bag of fluid. I’ve never heard Reece talk about food this much. Sure, he only eats bites of things, but he is talking about eating all the time and clearly very interested in doing so. Additionally, TPN is like grazing. Reece is given a distribution of calories over a 12-hour period. It’s like snacking all night long. Therefore, he snacks throughout the day as a way to even out the 24-hour period. I don’t see how he will actually eat a full meal until his body is motivated to eat more with the TPN removed. The best reasoning I have received from a doctor as to what other benefits TPN serves in replacing calories is that Reece’s body needs additional calories to heal. That is a decent answer. However, I still haven’t heard what parameters they use to judge how to take him off of it. We are rapidly approaching Day +100…it isn’t like he just had his transplant a few days ago. The biggest kicker to me is the amount of additional fluid he receives via TPN. For a kid who is fluid-sensitive, this is my first thought in trying to get his fluid intake down, as long as he is eating. And the eating part is where I feel my mom-expertise is important. No one has eaten more meals with Reece than me. A standard answer for any question up here is, “Every kid is different. It depends on the child.” Ok, well, let me help you understand how my child is different. That’s part of my job here.
All that said, I have pled my TPN case with the doctor–multiple doctors–on several occasions. This morning, it was quite a lengthy conversation during rounds between probably 10 different people. They essentially came to the same conclusion as what I outlined and decided to cut his TPN nutrition in half. He will still get it over a 12-hour period, but it will be reduced. I hope this is the right decision. I stepped back into the room and thought, “Oh boy, if this doesn’t go well, we could be here several more days trying to iron this out.”
Another key discussion point in rounds this morning was Reece’s hospital departure. We are planning on Saturday or Sunday, assuming things hold steady or improve. I think part of the doc’s hesitation on the TPN is his desire to hold steady and find the right balance in order for Reece to get out of here. So, I really hope this doesn’t throw everything out of whack and cause further delays. I am a big believer that we can never replicate through drugs, machines, and other unnatural methods, what God created to be. Thus, the body needs to at some point work on its own. Side effects from BMT are because of things that have been done to Reece, not because of his MDS. It’s a trade-off, but I feel strongly that once his body gets the chance to click in, it will. I hope I am right.
Additionally, I was given the schedule for Reece’s steroid taper today. It has him slowly tapering down until he is off of it completely by mid-June. As soon as I picked it up and began looking at it, I felt the need to pray over it. To have his body completely rid of GVHD and to not have any flare ups as he tapers down is such a desire of my heart. The steroids are key to getting rid of GVHD, but they are also creating his need for insulin and working against lung progress with the additional weight gain. I’m not even entertaining the reality of long-term side effects from prolonged use of steroids. They need to be done.
So, if you feel like there are many plates we are trying to keep spinning, that is basically where we are at. Everything is intertwined. On top of the things I normally request prayer over, here are the two things tugging at my heart today:
- TPN wean to be helpful, not harmful. That it alleviates his fluid retention and doesn’t cause further delays in the hospital.
- Reece’s GVHD to be completely gone in his body with no flare-ups as the taper begins. No further setbacks that require further steroids than what he has already had. Reece to be done with steroid creams with no further problems.
Thank-you for your faithfulness in praying for Reece and our family.