What's Normal?

I think this will be a short update (yeah, I know, I've said that before), then I've got a favor to ask.

The last couple of weeks we've been trying to figure out what's normal.

Sleep
Ethan's 27 months old now, and until recently we'd never tried to get him to go to sleep by himself. We would always hold him and rock him while he laid on a big pillow on our laps.

I suppose it's silly that we never worked to teach him to go to sleep in his crib. But, with a kid who has spent so much of his life sick or in pain, or under the effects of drugs that screw with his sleep or upset his stomach, comforting and putting him to sleep have seemed two sides of the same coin.

We know he can go to sleep on his own because he does it during nap time at daycare, when all of the kids just curl up on their cots and go to sleep.

Now, we're starting to try to teach him how to go to sleep at home, and as natural as it may be for a normal kid, I find myself torn about working on this simple thing with him even now. Because I know that within two months his body is going to be torn apart by chemotherapy again, and I know that I will pick him up and comfort him until he can go to sleep, however long that may take.

Blood Pressure
Ethan had a check up with his primary care doctor a few weeks ago. She and we wanted her to double check Ethan ears and ear tubes after he came off of back to back ear infections. When they did his check in vitals, Ethan's blood pressure was 115 over sixty something. Dr. Oltmans commented that it was high for a kid his age, and my response was that it was ten points lower than it usually is because the docs at Doernbecher recently put him back on Amlodepine to counteract the effects of the steroids.

Dr. Oltmans raised the point that even though he's on steroids and has MPS and has been through transplant, there's no reason to allow a higher blood pressure, because it doesn't do anything for him except make his heart work harder. So, she gave us a referral to a specialist and we're scheduled to take Ethan in on Dec. 2.

Nobody at Doernbecher has seemed overly concerned about his blood pressures being in the 120s, so I never knew that pediatric blood pressures were typically in the 80s for kids Ethan's age.

So, the question becomes what's a normal blood pressure for a kid like Ethan? How do the combination of MPS and transplant affect his blood pressure? How aggressively should we treat it? Is it even worth treating it more aggressively at this point since transplant will throw it completely out of whack for the next six months? Add to that the effects of the steroids on his blood pressure are cumulative, at least until he comes off of them, and I wonder if anyone can answer any of these questions with any certainty.

Prednisolone and Rash
We're continuing to slowly taper Ethan off of the prednisolone steroid. He's coming off of it pretty well now. His rash recurs every few days, but it's nowhere near as fast as it was and there were a few days in the middle of the week where we were able to go without the steroid cream as well.

The steroids are still screwing with Ethan's sleep, but it's not as bad as it was. He's slept through the night the last couple of nights, which has been nice for all of us.

Donor Search and UMinn
We knew that UMinn had start the donor search 3-4 weeks ago, but we hadn't heard anything from them. We finally e-mailed them yesterday and learned that they'd made some progress. Dr. Orchard has decided to go with cord blood again, as opposed to an adult donor. That's consistent with the research that we've done which indicates slightly less risk of gvhd with cords.

They've lined up two units and I think those arrived at UMInn yesterday for secondary testing. Both units are 5/6 matches. Ethan's first transplant was a 6/6 match. A five out of six match is perfectly within the guidelines, but I think we'll have to wait till we get there to talk about what the clinical significance or consequence of the lesser match might be.

We were a little surprised that no one at UMinn had contacted us with the results of the search or to start scheduling things. After e-mailing and talking to them on Friday, Sarah and I got the sense that since they do so many Hurler's transplants, they may feel like they've got the playbook and don't take as much time to keep families informed or to explain.

Sarah and I are agreed that we will have to disabuse them of that style when we get out there. Maybe if we'd gone out to Minnesota originally, we could have just deferred to the doctors and wouldn't have felt as much need to have everything explained to us and wouldn't have ended up doing so much research on our own. But the last 17 months have trained us that we have to ask the questions and get the explanations and know what's going on. So the pros at Minnesota are just going to have to deal and make some extra time for us.

Ethan's Latest Trick
He seems to be able to whistle!

A Favor
Last but not least, we've got a favor to ask.

We would like to ask everybody reading this to put together a sign or poster that we can hang up in Ethan's hospital room and back at the Ronald McDonald House.

We would greatly appreciate signs from letter sized to poster board with pictures of you and your family and messages of love and support. They would be wonderful reminders of all of the people who are sharing this journey with us.

It would be nice if some of you could do signs or posters for Ethan at the hospital and others could signs or posters for Caleb at the house so he knows that he's important, too. Please feel free to get creative, whatever you have the time or inclination to do would be much appreciated.

It looks like we'll be leaving Portland around December 27 and it will probably take four days to drive out, so we should get there on New Years Eve. I think you can send them to us at the Ronald McDonald House even before we get there. The address is:

Sarah Aaserude & Todd Waddell
Ronald McDonald House
621 Oak St. SE
Minneapolis, MN 55414

Thanks very much for being there.


Comments

Jen Rike said…
I love the idea for the posters. We'll be sure to make one for Ethan and one for Caleb. What a great way for all of us to show our support!
Erica said…
UofMn will have Ethan hecked by their Cardiologist- Dr.Braunlin so she will be able to guide you on the blood pressure thing - I do not see her but alot of families really seem to like her. (I see a few drs at Mn but not all).

As far as wanting some control over your sons care - I feeel the same way about my own care these centers need to realize that just bc they might be the best and have the most specialists in this disorder doesnt mean they dont need to communicate bc we as parents and individuals deserve as much knowledge and to have as much input in care as anyone does - these are healthcare providers granted but we are the ones living with these disorders and know our kids and ourselves FAR better than anyone ever in healthcare ever could. Never stop asking questions - as you can see I get in trouble all of the time for asking questions and for sticking up for myself but it doesnt mean that you shouldnt be standing up, sticking up and holding out for better answers!

Erica
www.caringbridge.org/wi/ericathiel
Y said…
Hi Todd,

I'm not sure about the sleeping thing, because Max has always always fallen asleep in his crib. We used to swaddle him and give him a pacifier and he would be good. Maybe it isn't worth all the tears if you're just going to undo it in a couple of months anyway, though. But I'm not an expert, just my guess. As far as the blood pressure goes, Max's has never been in the 80's as long as I can remember. Once in a while it's in the 90's, but usually its more like 110ish and no one seems concerned about it.
When we did the first transplant, we knew every step during the donor search. This time, we only were told when the doctor selected a donor. Possibly, because the first time we were talking directly to the search coordinator. Now our nurse coordinator contacts us when there is news.
Finally, the posters are a brilliant idea we'll try to make some!

Wishing your whole family a lot of strength,
Yana