Friday, August 14, 2015

Summer Setback, 2015.

Unfortunately, Jordan's camp experience didn't go as planned this year. After a week at gymnastics camp, he came down with a high fever.  He complained of chills, pain and was sleeping constantly.  The camp nurses brought him to urgent care and his chest was X-rayed.  He was eventually diagnosed with pneumonia. Phone calls from the health center are not what any parent wants to get when their kid is away at camp.  It's especially hard when you aren't even in the same country.  Funny to think that last year's big health drama was a call from Mina's camp warning us that one of the bunk mates had to be treated for lice. 

Simple times.

Jeff flew out to the States early, withdrew Jordan from camp and brought him to Grandma H's to recover.

Over a few days, his fever continued, despite Tylenol and antibiotics.  The infection in his lungs remained and he got very dehydrated.  We made the decision to admit him to an ER in Pennsylvania, and he began IV fluids and new antibiotics.  Jordan's cardiac team at Columbia was in touch with the hospital to discuss testing and medication.  Jeff has been by his bedside the whole time.

A couple days later, Jordan is recovering (fingers crossed).  More tests continue to make sure the infection isn't in his bloodstream or affecting his heart or organs.  That is really scary to even think about.  His fever is down for now (fingers crossed) and Jeff says he is starting to go back to being his normal, goofy self.  See pic below once fever broke.


Jordan was supposed to be enjoying the last couple weeks of August in the same camp that Mina is in right now.  Obviously that isn't going to happen.  I emailed the camp director and asked that Jordan be withdrawn due to medical reasons.  They were understanding about it.  Jordan hasn't said too much about not getting to go, at least not yet.  I'm also not there with him, so I have no clue exactly what he's thinking.  I'm still here in Bermuda, with the baby, trying to process all of this from afar.  Traveling with the baby and trying to juggle his care while being in and out of the hospital didn't seem to make much sense at the time.

I think that's the reasoning.  I don't know.  I regret not going.  Trying to gauge how Jordan is doing based on emails, texts, phone calls and Facetime is not the same as being physically present in the same room with someone.  I'm feeling massive amounts of guilt as a mom, as well as a bit of resentment.  Who cares if it was a hassle with the baby? Why did I agree to stay home? Maybe trying to make everything run smoothly shouldn't have been a priority. I don't know why I agreed to this.  I am kicking myself. 

The other thing that's been bothering me about this situation is the feeling of let down on Jordan's behalf.  Maybe he doesn't care right now that he missed out on the rest of camp, the adventures to Hershey Park, the water slides in the lake, the bungee jumping and overnights in a tent with campfires and s'mores.  But at some point, he's going to think about it, particularly when Mina comes home and talks about what a fun summer she had.

I really wanted them both to have a fun summer.  That's why we agreed to let them go to camp again this year and for a longer period of time.  I put aside any doubts  because both of the kids have gone to camp before.  I put aside any doubts about Jordan's health because I trusted he would be well cared for.  I made the call, as I have done a million times before, to treat him like any other kid and not let being a transplant kid affect every aspect of my decision making.  I never wanted that to be the defining characteristic about him.  I just wanted him to be normal.

I keep telling myself that any kid could have come down with pneumonia at camp.  It's not just something that happens to a transplant kid.  When you make the call to treat your immune-suppressed kid like everyone else, you have to be willing to accept that shit will happen sometimes.  And then you get to second guess yourself to death.  Did I do the right thing?  Should he have stayed home?  Was it too much expecting him to be away by himself?  Was there something I should have done differently, said to his counselors before, packed warmer clothes?


Jeff sent me this picture today.  Jordan is off the IV drips and is walking around again.  His temperature is still down, but they are going to keep in the hospital one more night to observe him as they switch him to an oral antibiotic, and to see if he can keep his fluids down.  He looks incredibly big in this picture, as he sits there goofing off with a surgical mask.  I don't know how other transplant parents manage the balance of achieving a semblance of normality for their kids.  Ten and a half years later, I'm still trying to figure it out. 

We've never let Jordan's health issue dictate how he was treated when it came to basic matters.  He started preschool at two and a half, was surrounded by regular kids, exposed to all the same germs and colds they were.  He was always carted around to parties and play dates and big open pits of germ ridden balls at play zones.  He's gone to amusement parks and flies on airplanes.  In short, he's pretty much been a regular kid.

With the exception of this year (when we pulled him out of school for a week during a chicken pox scare) I don't recall any major incidents of altering normal behavior because of his immune issues.  Granted, some of my blas√© attitude is because Jordan is on a very low dose of suppression.  Comparably speaking, his level of medication is minimal.  When we inform his anesthesia docs and nurses before every biopsy about his meds, they look incredulous.  Most transplant patients take a lot of meds.  Jordan has been lucky.  In so many ways.

I am going to try not to let my attitude affect Jordan's reaction to this.  If and when he decides to talk about it, I need to help him put this in perspective.  He missed some fun at camp.  That is a real bummer.  Sometimes bad things happen.  But there is still some summer left before school starts and we'll have to find a way to have some fun at home.  I'll leave my sober depressing thoughts for after he goes to bed.

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