Ironing Frenzy

Gotta love a kid who pretend plays ironing. I know the camera setting is off, so pretend in your head that I can actually take photographs decently, okay?

Gage arranged a system for one of them to iron and one to fold. Witness them playing together without one of them screaming. This was so successful that I have insited they iron our clothes each night. As in "for real Mommy?"

Luke is now supposed to have his transplant this Tuesday. That is now the scheduled day for Gage’s liver biopsy and endoscopy. There’s no comparison really. Gage will be out the next day and Luke will be spending Christmas in the hospital. But after 5 years of knowing Luke’s family, Gage is in the hospital on the same day as Luke’s transplant. It feels strange.

Wishing and praying and chanting all good kidney things come your way Luke.

(Update: Luke was just diagnoses TODAY with an ear infection. Kirsten is unsure how this will all play out with Tuesday’s re-re-rescheduled transplant. They are however remaining hopeful that they "will just get on with everything.")

Julian is very nervous about Gage’s biopsy. I am not nervous. I don’t have the energy or time to be nervous. And I do believe that the kids pick up on when we are anxious. So, deep breath Julian. Do not act nervous around the boy about this procedure; even if you are scared to the core. In fact, be careful of the energy you put out there – the boy is smart and WILL pick up on it because he just will. He can pick up on every vulnerability we have and you know it is just to mess with us. Because that is what he does. He messes with us.

Back in the good old days (September) when we were blissfully ignorant before we knew dialysis would become a way of life, we had our first transplant evaluation appointment and we met everyone on our team who would assist us through transplant.

We met the transplant director/doctor, financial people, social workers, a childlife specialist, the surgeon, psychologists, hospital teacher, coordinators, nurses and more. Our heads were spinning before we walked in so you can imagine the comatose-like state we were in when we returned home. We could barely form sentences and communicate that night because the day was just too much.

During the later part of the day the director/doctor (who Gage happens to love, love, love!) after about 3 minutes of meeting us mentioned that Gage might need dialysis before we were ready for transplant (it turns out that was the UNDERSTATEMENT of the month). When I collected my jaw from the floor and sat back in my chair from falling off of it he asked if I wanted a tour of the dialysis center. I clearly said "NO, I’m not ready for that," yet somehow we ended up back there about 10 minutes later. It was a Tuesday – an off dialysis day – but there were a couple of people there available for in hospital patients and emergencies.

I remember clearly the people I met that day. I remember our general sense of fear and of hope. I remember the people I felt a warmth from and I remember many details discussed that day about Gage’s care and impending transplant and possible (at the time) dialysis. Being able to remember details is both a blessing and a curse.

That day as we met people from each department, and a week later for labs on the day we knew his kidney function was dangerously low, we covered a lot of basic things about Gage’s new life at Children’s Hospital. We were given some of the ins and outs of the process and an overview of the support we as a family and Gage in particular would receive.

One aspect is the hospital’s attempt to assist Gage educationally. It’s proven that children in renal failure do worse educationally and socially. During the three times a week that Gage is at dialysis we were told there was a teacher available to help keep the kids on track with homework. I clearly remember that she would work with the kids for 30 minutes on Mondays and Wednesdays. The teacher was available the first month and worked with Gage a few times. Not so much now. I sought her out a few times and asked her to work with him on something specific, but I really can’t remember the last time she worked with him. Six weeks ago maybe? I don’t know. For certain it wasn’t what was communicated early on when we were courting. Now, all the kids pretty much watch TV (Gage) or play video games. The older kids usually sleep. At least that is the case during our shift.

I’m extremely disappointed this aspect hasn’t worked out like we expected. I’m disappointed Gage isn’t stimulated at all educationally while he’s a CAPTIVE AUDIENCE. I’m disappointed that children’s hospital doesn’t have the resources to help the kids who are at the hospital with such frequency. I was a fool for thinking this aspect would magically work itself out.

Gage is very resistant to working with me. This is just a fact. I attribute it to the years of my forcing him to do therapy "homework" for OT, PT, sensory and speech from 2000-2004 that included body and mouth brushing, bean sitting, walking, muscle massage, finger painting, and texture eating. Which doesn’t sound too painful, expect he hated all of it all the time. I’m not saying me helping with homework doesn’t happen but it is a struggle. Can everyone say it with me? Gage is a button pusher.

Before dialysis we’d been taking Gage weekly to a tutor who is homebound. Unfortunately she’s unable to come to dialysis at this time so we’ve had to look elsewhere for help. Enter craisglist. Starting this week we have our own tutor for Gage that will go to dialysis for an hour two times a week.

This is not the ideal for us financially. In addition, it’s one more person I have to manage. But we have to pick up the slack where CH falls off. Not an option really. Which totally sucks.

We just met with a liver specialist this morning. She seems to think that Gage should have a liver biopsy and a scope to check for varices. A biopsy is to see exactly what shape the liver is in before transplant (so they aren’t surprised) and the scope is due to possible portal hypertension (not expected, but should rule out while they’re at it).

Knowing exactly what shape the liver is in probably won’t change any treatment or anything about Gage’s transplant (no double kidney/liver transplant) but it will give more of a complete picture of his total kidney/liver situation.

This will require a one day overnight stay. I’m told he may go in next Monday, have the procedure, recover, have dialysis and then stay overnight. The doctor wants to confer with her partner. I’m supposed to hear from the scheduler about the plan.

This is also the same day Quinn is supposed to have her annual testing in the afternoon for a few hours. I’m thinking we’ll try to keep those appointments. I mean we’ll be there anyway, right? That is time managment turbofied.

This doctor must be smart: after Gage was rolling out of the office door on the doctor’s chair like he was surfing through the department she decided to have us leave and touch base by phone later. Gage…wild? Ya think?

Luke’s transplant has been postponed again. Yesterday he didn’t actually show signs of improvement with his breathing so they have called it off again.

I guess first discussions were first of the year but Luke’s family still needs final word from the transplant team.

Luke is taking it all in stride and it doesn’t seem to bother him a bit for it to be rescheduled. Kids are resilient aren’t they?

Obligatory.

But cute nonetheless.

Yesterday was the first day that Julian had the (kidney) beeper since we got it over a month ago.

He had it for about 2-3 hours.

And he lost it.

No, really. It’s missing.

We’ve retraced all his steps, called everyone we thought might have it and its nowhere to be found. We’ve called it and put in all of our numbers thinking someone might call, but no.

I mean, it’s just a matter of life or death. I’m sure we can order us up another one.

Julian, it is okay. I’m sure this has happened to other families.

It’s no surprise that Gage has had his share of behavior problems. We’ve talked about it, I’ve written about it, cried about it, obsessed over it and I’m sure we made Dr. KATB’s holiday brighter by increasing his overall income – which by the way was worth every penny and more.

All day long Gage carries a small sheet of paper to his teachers. He has several during the day – his homeroom teacher, 2 special ed teachers, a few therapists during the week, computer lab and PE. At the end of the class they put a check mark for "good behavior" and a line for "needs improvement" and there are categories for behavior and participation. We tried Xs for bad behavior, but it became the focus, so we stopped doing that because we were desperate to try anything  Gage – who is an attention hound – didn’t care if the attention he gets is good or bad so the teachers share privately the problems for that day. So any given day Gage can have 6-12 check marks depending on who he sees that day. I give him two bonus check marks for bringing the reports home each day. We then enter these checks (not lines) on a big poster board that is on our fridge. We barely talk about the lines. I might say, you have a line for participation in PE, why is that? And I might say they want you to try harder, but that is about it…no focusing on the negative.

When he’s doing particularly well I might surprise Quinn and Gage with a treat of some sort, usually a small toy. Whatever it is, it’s random. One day I let him pick out a toy and he picked out big T0nka trucks. Quinn had a great week as well, and she picked out a tiger pup who drinks milk and makes noises. The great thing about these little treats (or big ones) is that they are not expected and we barely talk about them leading up to something as the reward. Good behavior is its own reward.

For many weeks now Gage has been doing great. His teacher, on more than one occasion has said "he’s not doing great, he’s doing awesome!" and we could not be more thrilled. Simply could not. Almost to the point of tears thrilled.

In looking back to last year* I believe that Gage felt completely horrible and he expressed it in his reaction to events and people. I don’t think any of us involved in his care would have believed the extent of how compromised renal function was playing a part in the behavior problems for him. Maybe for other kids it’s different, but for Gage his renal function compromised how he functioned in the real world. I’m deeply sad that he lost an entire year of living well. It’s a year we’ll never get back. Dialysis is giving him the chance to live a life that is on an entirely different path and I’m forever grateful that it exists.

*Admittedly the worst behavioral year on record for a child anywhere in our county, who only having tripped a deaf child in the hallway, had a "good day" according to his teacher. In addition, Gage holds the title as being the only child ever transferred in MARCH to another classroom.

The sign is from the wall of our children’s hospital.

I just heard that the Luke transplant is off. The extremely sad and frustrating part of the story is that Luke and Stuart (Dad/Donor) were prepped and ready, IVs in and they were outside the operating room. The surgery was scheduled for 7:30. It was 7:23.

The anesthesiologist decided to listen to Luke’s lungs one time before surgery and said no. Risky. Very risky. Apparently they had spent all day at the hospital yesterday, got a lung x-ray last night but no one with authority looked at it or examined Luke.

So, they are on hold for now. Obviously everyone is disappointed. But it is more important that Luke is as healthy and strong as he could possibly be for his long surgery.

If you are the praying kind or you whisper to the universe or Buddha, or your higher power please send a message of healthy positiveness out there. And it wouldn’t hurt to send some extra thoughts out to Kirsten and Stuart, Luke, Eliza and Charlie and his family. They’ve waited a long time for Luke to be on the healthy upswing and it’s heartbreaking that they have to wait longer.

Transplant might be Thursday, depending, of course.

We love you sweet family. I’m really trying to believe that this is all in perfect timing with the universe, as my friend Patty says about our family.

This is Luke. He’s the middle child of a lovely friend of mine, Kirsten (their blog). She and I met through the PKD Foundation and were fast friends. Her Luke is about 1 year older than Quinn, so we got involved with the Foundation about the same time. 

Luke has ARPKD. There have been many times doctors talked about letting him be transplanted. And his dad was tested over 1 1/2 years ago and was approved to donate. Then Luke stabilized. And while Luke has had many problems associated with being in the NICU, under developed lungs at birth, hard to control BP, extra large kidneys and a hearing lost due to the NICU time his kidney function was okay. Luke’s family has been waiting a long time for this transplant – lots of starts and stops. Barring complications, he’ll be transplanted on Tuesday.

I have always thought that Luke would be transplanted (as well as removal of his kidneys) well before Gage because his ARPKD was much more involved. They almost lost Luke to the disease. And he suffers the effects far more than Gage and Quinn, although they have their fair share. Never would we moms have thought that we’d be going through this at about the same time. But here we are. Different paths.

Kirsten, I wish and pray for all good things for your family. For donor dad, we are hoping your recovery goes well. For Eliza and Charlie, the best brother and sister in the world for Luke, hang in there, we know it’s hard to have a sick sibling.

And Luke, well…I expect to hear that you recover with the enthusiasm you have for life and I expect to hear that you are wearing your mom out in no time. Because I hear that you will have more energy!

And to my sweet friend Kirsten: your little family deserves better kidney ju-ju. And it better take effect on Tuesday.

We love you all.