Tuesday, September 6, 2011


Brilliant title, I know.

Keegan had a pretty good Labor Day for being in the hospital.  He went outside and played in the playroom.  His port appears to be doing well, so there was no need to reassess his line situation since losing the PICC on Sunday.  He was generally in good spirits.  Until we decided to order some mashed potatoes for him at dinner time.  I think we had all been operating under the assumption that once permission was given to eat, no matter what was offered, he would eat it because he hadn't been able to for so long.  We were sorely mistaken.  We have offered potatoes, pasta, chicken, and vegetables.  So far absolutely everything offered has been not only rejected but resulted in major, screaming meltdowns ... except goldfish crackers.  And only goldfish crackers.  That's not really helping GI make any determinations about the state of his intestines.  They need him to eat some more complex foods, which he is flatly refusing to do within the realm of his allowed diet.

He has tolerated about two full servings of crackers per day so far without throwing up.  The diarrhea took a definite up-tick.  We were unsure whether or not to attribute to the food or not.  I think we are still unsure, but at least today we were able to collect the last few stool samples for labs.  These labs may give us a little guidance as to where in his intestinal tract the problem is occurring, i.e. large vs. small intestine.  The team is also weighing the need to proceed with a full motility work-up.  It's not a fun process, and frankly, the results might not tell us much anyway.  For now, we will proceed with adding more dry carbs and offering real food daily, even if it is declined.  All bets are off during fever cycles though.  We know he doesn't tolerate minimal tube feeds during them, so solid food is likely not going to work either.

As Keegan's fever pattern has morphed recently, we weren't sure whether to expect it last night or tonight.  Only a few times has he been inpatient and on monitors for the initial spike.  The silent indicator of the fever is his heart rate.  It is normally in the upper 90s-100s while he is asleep with no fever (a little higher than the average for his age but not uncommon for a transplant kid).  At the highest temperatures, he will reach the 170s, and he will not come below the 130s until the entire cycle is over.  The benefit of being inpatient on the monitors is that we can theoretically see them coming.  Usually, he will "simmer" for a day before the first spike.  He will get flushed, feel warm even if his actual temp isn't too high, and slow down energy wise.  We saw all those things happen today, so everyone is a little on edge, Gray and I especially, waiting to see what Keegan will do.  Since he has been asleep, he has stayed mostly in the upper 110s, and he has already had one moaning/crying-in-his-sleep episode that we are familiar with the night of the first spike.

The good thing is that we feel like the transplant team has had time to catch up and prepare for the next fever cycle, whenever it hits.  The plan is to try oral tylenol again and possibly a dose of ibuprofen (just one, and one only since it is a big risk for his kidney) before going back to the IV tylenol.  They really want to see what he does in order to determine if the fever follows a particular pattern that could clue them into the source.  But we won't let him get uncomfortable either, and unfortunately, the highest temps tend to be at night when he should and needs to be asleep.  The team hasn't clued us in to any thoughts they may be having at this point in regards to a cause for the fever, if any.  We will just have to wait and see.

Thank you to everyone for your continued love and support for our little family.  We are so appreciative of every prayer and well wish.  I am really struggling with being apart from Audrey.  I miss her every minute she is not with us anyway, but to top it off now, she has her very first ear infection.  I don't think my heart can break much more knowing that I can't be there for my little girl when she needs her mama most of all.  She seems to be responding to the antibiotics, but I would adore it if y'all would join me in prayer for my little Ladybug.  I hope she knows how much we love and miss her and would scoop her up and never let go if we could come home today.  I love you so much little girl...to the moon and back!


Ashley & Chuck said...

Thanks for all the updates, Maddie. We are continuing to lift you all up to The Father!

Kira Willingham said...

Poor Audrey and mommy. I know it breaks your heat that you can't be there to help make her feel better but maybe think of it like this. Its the price of sending a child to mothers day out. Which you were so happy for her to be able to do. And she is going to LOVE school. Every kid gets sick when they first start school. I know you know all this, just thought I'd remind you, and maybe alleviate your guilt if only for a moment... Keep up the good work beantown drs!

Maegan McClellan said...

Thinking and praying for all of you. Your faith and strength is so admirable, Maddie. I hope you know that!

David and April Vinson said...

Thanks for the update! Praying you would each experience peace beyond understanding.