Arabella’s transplant was four weeks ago.  Since that time, as mentioned in our last post, we’ve been trying to adjust to our new “normal.”  Unfortunately, we don’t know what normal is supposed to look like yet.  Currently, Arabella sees the transplant team every Monday and Thursday.  She has labs, is examined by a physician, changes are made to her medication plan and then we come home (which is what we call our apartment these days) to be ready for the next visit.  

Recent labs have shown a worsening.  An ultrasound has shown something potentially pushing against the kidney.  Surgery was scheduled last Friday to remove her hemodialysis catheter and drain that “something” at the same time on an outpatient basis.  Instead, Arabella was hospitalized when a drain was left in place to be pulled at discharge.  Rather than going home Friday, we left the hospital last night at 9:30.  

Here’s what we know so far from additional tests:

1.) The “something” that is near the kidney is actually a bruise, likely a result from the transplant.  It should dissipate over time.

2.)  The kidney is retaining urine, which isn’t what kidneys usually do, but that, in and of itself, doesn’t appear to be causing a problem and may resolve as the kidney settles in its new home.

3.)  Arabella must drink 3 liters of fluid daily.  Sometimes even that isn’t enough.  It’s hard to drink 3 liters a day when she has been limited for so long and is currently nauseous and vomiting frequently.  

4.) She is taking an incredibly high dose of one anti-rejection medicine.  We will get results in a week that determine how her body is using the drug.  Some think that this could be the reason for her worsening labs.  Unfortunately, many medicines used to help with kidney transplant/disease/failure can also damage the kidney.  We hope that is not the case, but one test shows it’s a possibility.

5.) Rejection is being discussed, but we won’t know more until after next week’s results from the medication testing.  

We’re staying calm and believing that better days are ahead.  Our critical issues are:

1.) For Arabella to drink her daily requirements and more.  While her labs may be due to something going on with the kidney, they’re virtually guaranteed to be worse if she’s not adequately hydrated.

2.) For her to feel well enough to drink the fluid limit, we need her nausea, vomiting and headaches to decrease.  It’s hard to eat and drink when she’s sick to her stomach.

3.) For her to have adequate pain relief.  Lots of kids feel great soon after transplant.  We expect she’ll get there, but she’s not close yet.  Spending 5 days in the hospital when we planned to come home throws a curveball to her attitude and spirit.  We need for her pain to decrease and her endurance to increase.

Thanks for staying with us.  Our team reacts to the numbers and follows them closely.  We look forward to the day when we are celebrating that they’re both good and stable.  

Tonight’s picture shows a syringe of medicine that Arabella had to swallow during her hospitalization.  The doctor told her that it tasted horrible.  The nurse told her it was a small dose that was equal to about 1 teaspoon.  She quickly realized her mistake as it was really 12 teaspoons…of awful tasting stuff.  Arabella just stuck it in her mouth and chugged it down…like she does with all of this journey. I’m so proud of how this young woman handles these difficulties with strength and grace.