Jacob Back in the Hospital, and Not Dying

Is it me, or do the doctors at the hospital look like teenagers?

I’m not talking about the volunteers or the techs/nurse’s assistants.  I keep meeting these people who look like they should be taking highschool classes and going to seminary dances, and then they say things like, “Hi, I’m the resident!” or “Hello, I’m the intern”.

I’m certainly not disparaging them or saying they’re doing a bad job.  They’re great.  But it must be saying something about how old I’m getting.

Playing Minecraft with his bro

Anyway, this time it seems like he’s had more issues with his guts being all plugged up, and not so much trouble with his lungs.  He’s been pretty cheerful through the whole experience, except for the day he had to get the catheter and the enema.  I’m glad I wasn’t up here with him when that happened.  Yeesh.

The other day, when I came up to visit, the call came out over the intercom for a Mormon Elder, which I am.  That meant that someone needed an Administration for a Blessing.  I went and assisted (it takes two), and as I met the family, and listened to the prayer being offered, I realized that these parents were in fear for the life of their child.

We come up to the hospital a lot.  Appointments, clinics, a clean-out once or twice a year, even an occasional surgical procedure, etc.  These things are important, and very serious. But it has been a very, very long time since I have felt total fear that my child would die.

I remember one time, when we were in for a cleanout, he had a bad fever, and he went into a full-on grand mal seizure.  They gave him anti-seizure medicine, and he stopped breathing.  They had to get the breathing bag on him three times.  Alarms were going off and the staff got real focused and serious for about a half hour until he got stabilized.  I was terrified.

And, of course, when he was born, two months early, and whisked from the first hospital up to Primary Children’s the first time (on Life-flight, no less), with a ruptured intestine.  We were scared for his life, then, too.

In the special-medical-needs world, we often find ourselves in situations where, at least on the inside, we look at a family and say, “I’m sure glad I’m not in their place”.  We often don’t realize that they’re saying the same thing about us.  But this time made me remember times that were scarier, and made me more grateful that these hospital stays, while being important and serious, are not because he’s at death’s door.

At least not this time.

Fairness, Cystic Fibrosis, and Cerebral Palsy

So, Jake’s been sick a lot this week.  It’s been both bad and not so bad, depending on the day.  He’s been fighting with diarrhea several days, and even though his stools have been pretty solid today, he’s still had a lot of GI wooziness.

With Jake having Cystic Fibrosis, we have to take all of this very seriously, just like we do when he gets bugs in his lungs.  It can be pretty bad for him if he catches something fierce, even in his guts.

So, he’s staying home from church tomorrow.  This is kinda frustrating, because it’s a big deal for his older brother.  Brendon gets to speak in church.  In Mormon churches, members of the congregations preach the “sermons” each sunday, though we call it “giving a talk”.  Often they’ll ask the youth of the congregation to do a short one before the adults speak.  It’s really good for them, and it’s a big deal for a teenager to do.

But, Jake and one of us of the parents will have to miss it.  It turns out that I get to be the lucky one to go, because I sing in the choir, and we’re also performing.

It’s kinda tough to split up the family activities for a day, but that’s what we’ve got to do.  Fortunately, Brendon understands, and hasn’t complained too much.  He does, however, sometimes gripe about other aspects of the inherent unfairness of Jacob’s condition.  Jake misses a lot of school, and Brendon would sure like to do that.  Jake, because of his Cerebral Palsy, can’t do any household chores, so more of that falls to Brendon.

We try, as parents, to find some kind of balance, for both of them.  But, really, there isn’t a balance.  It just IS, and we all have to deal with it in our own way.

The Hero Returns

Jacob is back from the hospital now, after having his Cystic Fibrosis cleanout.  It ended up not being quite a full two weeks this time, which was nice.

Jake is growing up.  He’s a few days under 12, now.  During this hospital stay, he started to noticeably engage more in the talk with the staff.  In the recent past, he’s been involved in some opportunities to speak to the nurses, particularly the student nurses, and teach them how to better deal with children patients.  He told them all to talk more directly to him, as the patient, instead of just talking about him with the parents, while he’s in the room.  

I think that, this time around, that this experience has given him a lot more confidence in dealing with the nurses, the techs, and even with the doctors.

For example, when the Cystic Fibrosis pulmonologist was in, and they were talking about just how long to keep him in, he piped up and said that he wanted to do as much of the full cleanout as necessary, because he “didn’t want to have to come back in a few months!”  The decision was made.

A couple of days later, talking with the same doctors, they said he was well, and sounding clear in his lungs, and they asked him if he felt he could go home.  He was excited and said that he definitely wanted to.  They were including him in the decision making process.

He’s a sharp kid.

Time at the Hospital

This last week and a half, Jake’s been up at the hospital, having his annual/semi-annual Cystic Fibrosis lung cleanout.  It started when he came in to have his sinuses cleaned out of growth and gunk, which had been causing cluster headaches last summer.  The headaches had faded, but the scans showed significant blockage, so they decided that it would be a good idea to clean it out anyway, and that it would probably prevent future instances of the headaches.

What I wanted to write about was our school principal, Mr Conley.  He brought his family up to visit Jacob, and to bring up a bunch of cards and letters from some of the classes at the school (including some beyond Jacob’s own class).

First of all, I think it’s cool that Mr Conley comes up and visits.  It’s cool that the other staff here at PCMC are surprised to see a school principal visiting a kid.  It’s also cool that we’re not surprised.  That’s just the kind of man he is.

Early in Jacob’s school life, we were in a different school district, and obviously at another school.  We started our relationship with them with an adversarial posture.  We went to the IEP meetings with the attitude that we were going to have to fight to get every service we were legally entitled to, and they were there with the attitude to fight to be forced to do as little as possible.  As you can guess, we didn’t get that far.

When we moved out to Eagle Mountain, we came to the school with an intentionally more cooperative attitude.  We were also fortunate that the people we were working with in the administration were also predisposed to a more cooperative attitude as well.  It was some pretty fertile ground to plant and grow a great working relationship.

Over the years that we’ve been out there, the few small disagreements we’ve had have been over things like how best to implement plans, rather than what services should be included.  The school has been proactive in their efforts and adaptations for Jake (Jake also has Cerebral Palsy, as well as Cystic Fibrosis, and is in a wheelchair full-time).

Maybe someday, I’ll blog about my IEP experiences, and more about how it works.