Key Word is “Hopefully”

What I wouldn’t give to have a normal experience with Reece here.   I have come to expect that Reece will be the kid with the oddball reactions.  Oh to have his body react in any sort of normal fashion to any of these medicines, procedures, and processes.  This latest hospitalization has been no exception.  When we were discussing the ATG in clinic last week I kept asking about side effects.  I said, “I feel like I am not asking you something I should be asking.  What are the odd side effects, because that is what tends to happen with Reece.”  I came up dry. 

Fast forward to yesterday.  Reece had a decent day as far as his spirits.  My mom stayed overnight with him and he seemed content despite his obviously uncomfortable state.  He had his NG tube placed.  The nurse and child life helper said it was the easiest tube they had ever placed.  They ran the tube through his nose and down his throat while he was awake and he drank water through the process to assist.  No real compaints.  He is such a trooper. His weight continued to climb throughout the day despite the amount of diuretics he is on.  He has very little urine output by comparison.  Last night and this morning he weighed 22 kilos–his normal weight should be around 18.5 kilos. His breathing is labored but stable and his lungs sound ok.  There hasn’t been any more talk of pneumonia.  Now that I think about it, I really wish I would have asked the doctor about that.  It’ll have to wait. 

This morning my mom was with Reece and as Terry and I were planning to take the girls on a walk around the lake, we received a call that Reece may need to go on dialysis.  So we packed up the girls and drove to the hospital to get a lay of the land.  Here’s where things stand as of 2 pm, Saturday:

  • ATG: Reece’s skin is responding well; he has had three of five planned days of the medicine.  There is a rare side effect that can occur with ATG where it essentially breaks the blood cells open and causes issues with the kidneys.  They believe this is happening with Reece.  Because his cells are breaking open he has higher levels of uric acid.  This is causing issues with his kidneys and kidney functioning (I will explain this in the “Kidney” bullet point).  They have stopped the ATG today and, unless he has a major turnaround in kidney functioning in the next day or so, he will not be given any further treatments of ATG.  The doctor is very positive that his skin is responding so well.  We were originally told to wait 1-2 weeks after the last round of ATG before seeing any visible results.  So, that is good!  Five days of ATG is optimal, but his body is telling us he likely can’t handle any more, so it is likely he will be done with that.
  • Kidneys: Because of the uric acid and diminished kidney functioning, there was discussion of placing Reece on dialysis to get the fluid off of his body.  His urea nitrogen (BUN) and creatinine levels actually look good, so they don’t  believe at this time they are dealing with kidney failure.  However, Reece is retaining much fluid and the thought is that part of the reason is due to his kidneys being taxed.  There is more to this story, but that is the bottom line.  It has been a perfect storm for this to happen and, because his kidneys are not functioning on a normal level, the ATG may stay in his blood longer than 24 hours (the normal amount of time it stays).  Thus, Reece’s numbers could get worse before they get better.  They are going to watch him for the rest of the day before they decide to do anything further.  So, as of right now, no dialysis.  I won’t write further on that until we need to cross that bridge.  I was just told he is on a 24-ounce-per-day fluid restriction.  That includes blood products and medicine.  Since he gets more than 24 ounces of fluid in those two items alone, we won’t be adhering to those limits.  Still, we will need to limit what he drinks.  And since we can do so little for him, not allowing him to drink what he wants has proven to be one of the hardest things to do here as a parent. 
  • Weight: Reece needs to get rid of fluid.  They will be monitoring this closely. 
  • Oxygen: The hope is that once the weight comes off, his lung functioning will improve.  His breathing isn’t as bad as we’ve seen it.  He is on regular flow oxygen, but we don’t want it to get any worse.  Considering all of the lung issues he has faced, I would say he is holding his own remarkably well. 
  • Skin:  As I mentioned, the color is coming back to normal.  It is very flaky; he is essentially shedding his old skin.  This is a good sign as it means there is healing taking place.  However, due to low platelets he is bruised again.  With the added weight, his skin is taut.  Because his skin is so fragile, it cracks and bleeds.  He is having nose bleeds and bleeding in any area where there are skin folds…again, due to his weight.

As I stated a day ago, Reece’s body is a mess.  Many things need to pull together to get him well.  They will watch him closely today and hopefully things will be stable.  Hopefully, once the ATG is out of his system, the blood will stop breaking down.  Hopefully, once the blood stops breaking down, his kidneys will become more efficient.  Hopefully, once his kidneys become more efficient, the fluid will come off.  Hopefully, when the fluid comes off, the lungs will be relieved and improve in functioning.  And hopefully, Reece can pull through this, get rid of his GVHD, and get on with life.

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1 Comment

Filed under Bone Marrow Transplant

One response to “Key Word is “Hopefully”

  1. Heather Baden

    Praying with hope. Thank you for taking the time to write all of this out. So thankful that Reece’s kidney function is holding right now. Praying that the fluid drains out of his body. His lungs will be stronger as this happens as I get the fluid/lung association from our story. What an amazing boy God have to you. He inspires me every day with his courage and attitude. Love to all of you!

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