Friday, September 9, 2011


I have got to be more careful about what I post.  Never a good idea to tempt fate with putting something in writing.

The great "oral tylenol + ibuprofen" experiment was an epic fail last night.  Other than the night after Audrey's birthday party, this was his absolute worst fever so far.  As I posted yesterday, Keegan's fever simply laughed at the oral tylenol.  It temporarily bowed to the ibuprofen, only to come roaring back about two hours later bigger and badder.  He climbed to 103.9, probably higher, but we were too busy trying to control his horrible nausea and vomiting to continue to check his temperature.  We know that Keegan's body restricts blood flow to his stomach during the fever episodes, causing retching and vomiting.  Ibuprofen can also cause stomach upset.  The combination of the two probably put him over the top.  I don't know if it is the ibuprofen or the fever or both for sure because that was literally the first time in his life to ever receive ibuprofen.  At any rate, we finally were able to get him an IV tylenol dose and zofran around 3am, and he was finally asleep again just before 6am.

Our brave Bug this morning

I think Keegan's fever was ticked off that we attempted to change the plan of attack, and it came out for another round around 8am, reaching 104 by about 10am.  Another IV tylenol dose worked, and he finally got some sleep until around 2pm this afternoon.  He "simmered" as usual all afternoon, and by bedtime, he was back at 102.  We've held off on the meds so far though because he is asleep.  We are trying to treat the symptoms as needed and not just react to the fever by overmedicating him.  Sitting here watching his heart rate continue to climb, I know that he will need another dose.  We're just trying to be safe with the bigger gun medications.

If the last two weeks' pattern persists, this should be the last night of big fevers with more "simmering" tomorrow before it finally stops.  This one has done a number on his labs.  We drew some repeat numbers just now, but he will probably need to have a blood transfusion, at a minimum, tomorrow.  He looks like crud and is refusing to leave his bed or room for the most part.  It was an absolutely beautiful day here today after a few rainy ones.  We convinced him to go to the garden, and ultimately, he walked around for about 10 minutes before giving up.  The last two days, Keegan has been walking with a very pronounced limp/stiffness.  We thought it was a fluke yesterday, but it was very prevalent this evening.  Another thing to talk to the team about tomorrow.

Playing yesterday from bed

If we can take away anything positive from a particularly bad fever cycle, it is that the team here is getting to see it in full swing.  Hopefully, that will help provide more insight to them as they try to figure this out.  I mentioned yesterday that there are a few things brewing as far as ideas for diagnoses (or lack thereof).  Basically, it comes down to one last possibility that could unify both his GI problems and fevers, or GI and transplant addressing the two separately.

  • On Monday, Keegan will undergo a motility study that should give us a bit of insight as to how well the nerves in the end of his colon are working.  If there is a problem with the nerves, we will confirm with a biopsy before considering which way to treat it surgically.  This is the one last idea that would unify the fever with the GI issues.  Basically, children with this condition are very susceptible to translocation of bacteria within the gut that can cause fever fluctuations.  To avoid a complicated explanation of this problem that may not actually be a problem for Keegan, I will leave it at that until we get the results of the study on Monday.
  • If the results of the motility study are "normal", then GI has pretty much run the gamut of every possible test or idea for treating Keegan's diarrhea.  We will have to have a very lengthy discussion with the team, but it sounds like the overall plan at that point would be no different than what we had talked about with our doctor at home.  Reduce his TPN to the absolute minimum needed to maintain growth; assuming that he will have diarrhea with formula or solids, allow him to eat normally without the tube feeds.  I use the word "normally" cautiously though because we are getting absolutely nowhere with eating.  A serving a day of goldfish crackers or pretzels is not going to cut it for very long.
  • The transplant team is calling upon the immunology and rheumatology doctors here to help them continue to research the fevers independently of the GI problems over the weekend.  If the results of the motility study are "normal", then they want to be sure they haven't wasted any time working up the fever.  We met with rheumatology today.  They were going to meet with the entire team, but they at least think we need to repeat the MRI of Keegan's brain to check on the micro-hemmorages there.  They also were going to consult hematology about his many different blood issues, and what they might tell us about the overall picture.  We had discussed needing a bone marrow biopsy a few months ago, and that is something we are leaving on the table for now here. The immunologist here was still reviewing the results run by the immunologist we saw in Dallas, but we anticipate seeing them in the coming days.
A visit from the clowns yesterday


All the other little bothersome things that need to be addressed with Keegan, like his fluid retention/blood pressure/immunosuppression levels, have been somewhat placed on the back-burner for now.  We are addressing the most serious issues at hand first.  This latest fever cycle has only reiterated the need to stop this out-of-control spin Keegan is taking us on.  All that being said, I think you can gather that this is shaping up to not be a short stay in Boston.

But Keegan is stable tonight.  So, I am asking you to save your prayers for him and instead focus on our friends Leah and Rylynn.  Leah's transplant went well overnight.  However, she is struggling with a post-surgical fever, and her lungs are having a difficult time adapting to her new heart.  Rylynn, who is on a Berlin heart while waiting for her miracle, suffered a very serious consequence of the pump yesterday when she had a small stroke.  It looks like she hasn't suffered any major complications from it, but today, she did have to go back to the OR to have the pump replaced.  It was done successfully, so we are praying that prevents any further issues for awhile.  Please, please keep these precious girls in your prayers.  They both need them desperately tonight.  Thank you, friends.

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