The Tide Turns

Sam makes the headline this week:  on the 'injured' list with high fevers, covered with cold washcloths and a rash. "Everything hurts and I need a special treat" -  Sammy 11pm.

Meanwhile, Jack had a fabulous week!  Harry pointed out to me that I wasn't really acknowledging this fact when people would ask. Cautiously optimistic, I would say "he's pretty good" when in reality he's never been better.  I suppose I was just too afraid to admit it, in fear that it wouldn't last. Then again,... the only constant is change. 

The kidney biopsy did not happen last week as his labs steadily improved (although still a work in progress) and his blood pressure has stabilized. The fevers have been banished! In his radically apparent new experience of freedom, confidence, and health he is an official wild man - running his mouth 24/7 , growing hair in odd places (thanks to steroids), and recklessly practicing his baseball swing.  OH... and eating like a truck driver.  (I thought the day would never come!)

 

Embrace the Mystery

After 6 very long days, we are happily back home again. Phew!  The docs have exhausted what feels like every possible scenario and completed an enormity of testing this week and continue to come up empty. This is good news and yet the uncertainty is unsettling. My yoga teacher always speak about 'embracing the mystery' and this most definitely is a courageous act and one that requires great faith.

The creatinine levels continue to bounce around so it is possible that we may do a biopsy next week on the kidney to rule out rejection. 'Bouncing around' is common with kids because they metabolize much quicker than adults. Time of day, hydration levels, drug interactions can all be factors in this. If rejection is happening they will treat it first with additional immuno-suppressive drugs. However, we need to ensure there is no viral or bacterial infection first as this would put Jack in a comprising situation. If his labs on Friday morning are stable then we'll continue to move forward ("proceed with confidence" as my mom says).

Jack and Sam are happy to reunite. They pretend as if they don't miss each other while they are away and then they act like flirty, shy teenagers when they see each other again. It's quite cute until someone gets whacked for hoarding a toy.  

Thanks to dear friends and family once again for keeping our momentum going.   

May all rest well tonight in the darkness. 

Bold move here... I have not had a cup of coffee yet. Anyone who knows me can confirm this is a risky venture....

quick update: the renal team met yesterday and all except for one of them agreed that a biopsy of Jack's kidney was not necessary at this point! (I know... you are wondering how many made up that team of docs and I'm not sure). A biopsy is done when they are concerned about rejection. In general, they feel confident my kidney is doing its job. (makin' me proud).

There is a very small area on Jack's lunge that is possibly the culprit.  It shows up a pocket of air or maybe even a small collapse of the lunge on xray and his CT scan. At 8am today they will be doing a little procedure in which a small microscope will be sent down his throat so they can take pictures and possibly swab the area to see if there is a small infection. His feeding tube could also be the culprit. Jack has had this since early Dec of '07 which is a very long time. (Most kids have these pulled off their faces in a week). So, they will take a picture of him swallowing and see if he is aspirating into the lunges because of the feeding tube.  Both of the tests today are fairly quick, easy and non-invasive. Jack will be sedated for the first one and quite possibly still snoozy for the 2nd one.  I suspect will get results quick.  If it is a small infection, they will treat it with antibiotics and possibly try to clear the area in his lunges. Sometimes they can actually lift up the area that is collapsed with the scope. 

It also may turn out to be nothing... just unexplained fevers which they have seen before with kids post-transplant. That would be fantastic and unsettling at the same time. 

Must get coffee and then sadly, take Nana to the airport.

(disclaimer: no coffee and this is second-hand info from Harry and his mother as I was not around when the docs visited Jack yesterday. Just like in the game of telephone, things get a little lost in translation. The scoop is accurate... the medical terminology... maybe not so much).

Superdads make Superheros

This pic was taken last week when life had somewhat resumed to normalcy.... boys wearing capes and masks,  hiding out in the forest (the closet) and all of us gaining more rest.  Nana (Harry's mother), although she is not adorned in her superhero costume, has clearly demonstrated her own physical prowess and stamina since arriving on June 4th.  A woman who raised 4 boys doesn't sit on the sidelines and watch! She has been mowing the lawn, weeding, strolling with Sam to the park, fishing off the front porch, laundry, cooking, and engaging the boys in lots of play. 

Jack has been back in the hospital since Thursday because of high fevers, slightly elevated creatinine levels, and signs of a virus or bacterial infection.  Lab work and blood cultures are not revealing much so we are all a little confused, frustrated, and anxious for answers.  Our hope is that this is viral but the possibility of rejection is always in the back of the doc's head.  I presume we'll be here at the hospital until we gain some answers over the next few days.   A CT scan has been scheduled for later today or tomorrow. We made one attempt to do this already but Jack was not sedated and for obvious reasons it did not go smoothly.

Sam is hanging tight, patient as ever.  He is definitely starting to understand the routine and different energy around the house when Jack gets ill. Coincidentally, he'll need medicine and decide that his leg hurts. I remind him his new big wheel can't be driven if his leg hurts and we have a miraculous healing. 

 

Harry is doing well -- steadfast, unwaivering in his strength and trust.  Sam and I brought him breakfast in bed today for dad's day (a fancy bowl of cheerios and OJ).  He's seems to emulate the shape-shifting sort of superhero (think Plastic Man) who can transform himself depending on the situation at hand.... marketing/chemist guru, baseball coach, doctor, carpenter, pharmacist, outdoorsman, champion coffee drinker and occasional napper. I'm proud of him and look forward to the days when these boys are old enough to appreciate how extraordinary he is.  

I'm back to teaching yoga and back to handstands (hooray)! Backbends to follow this week??!?

Thanks for all the continued thoughts and prayers. More updates this week as we learn more.

xoxo,

Ali

(scootin' around the hospital on Saturday night on a tandem tricycle... stirring up some trouble and laughter)

Xmas in June!?

Jack is back home from the hospital (hooray!), Nana (Harry's mom) comes on Wednesday for 11 days (hooray!),  AND we had a lovely ice storm last night. I hope my plants are as resilient and courageous as our boy Jack is.