- Ronald McDonald House, Twin Cities
The best way I can think of to start this new year’s post is to say thank you to everyone who has helped us a little or a lot over the last year and a half. There are literally too many of you to thank individually, and I’m afraid we didn’t quite get to Christmas cards this year. But your help and support at various times and in different ways has helped us to smile or relieved us of a worry or allowed us to focus on something else that needed doing. To all of you who have helped, in big ways and little ways, thank you.
Caleb, at least, had a very good Christmas. His six year old mind was filled with the expectation and excitement that is all Christmas should be for children. As Sarah and I started thinking and focusing more and more about the trip the day after Christmas, it was Caleb who kept me centered and reminded me why Christmas was important, too. Caleb had a great time handing out and opening gifts. Ethan, on the other hand, wasn’t too impressed. This was Ethan’s third Christmas, but he wasn’t interested in opening gifts. Sarah’s mother, Pat, came by and we had Christmas brunch. Unfortunately, Sarah’s father wasn’t feeling well, so he wasn’t able to come by. Nonetheless, it was a fun morning, filled with happiness, smiles and warmth, just as Christmas should be.
By two that afternoon, Sarah and I were packing the mini-van, and we got on the road a little after 9 the next morning.
The 2,000 mile drive was uneventful. We ran into about an eighth of an inch of snow in the Blue Mountains in eastern Oregon, and some fog in Idaho and Iowa. But most of the time, including our two days in the Rocky Mountains, were clear and sunny. The weather was so nice that now I’m wondering if I can get a refund on these snow tires and chains!
We drove eight or nine hours each day. By the end of each day, Caleb and Ethan were restless and tired, but they did great. For me, the highlight of the trip was spending some uninterrupted time with Caleb. He is such a bright and charming boy; I really enjoyed his comments and questions about things we saw and listening to him continue to process this extended trip and what it means.
Ethan had a good trip too, though for him that primarily means that he didn’t have any significant medical issues during the trip. Up to two days before departure, we weren’t sure if Ethan’s health was going to be good enough to make the drive, and we were considering the possibility that he might have to fly. The Wednesday night and Thursday night before we left, Ethan ran small fevers of 99.5 or so. Both nights, the fevers went away without Tylenol or Ibuprofen, but we figured if they came back Friday or Saturday night, that there was a risk that he’d end up getting hospitalized for some length of time somewhere in Utah or Wyoming or something. Fortunately, the fevers didn’t come back.
Ethan was also on antibiotics at noon, 8p and 4a, during the first few days of the trip. That didn’t turn out to be a big deal, though it was an interesting experience unhooking an IV line while standing under an overpass an a small Oregon side road during a light snow, or in a 7-11 parking lot in Salt Lake. We weren’t sorry to end the antibiotics on Tuesday, though mostly because it meant the end of the 4a-5a hookups and a solid night’s sleep for all of us.
Medically, the main issue that we’ve been dealing with is that Ethan keeps scratching off the dressing that covers his central line. Normally, his dressing consists of a small round patch (biopatch) that covers the insertion point, and a thin, clear plastic stick on dressing (Tegaderm) over that. When Ethan was inpatient a couple of weeks ago, his skin got really dry and irritated, and he started scratching his dressing off. The tegaderm is adhesive, and between Ethan’s scratching and the peeling off of the adhesive, his skin under the dressing became even more irritated.
His skin was so inflamed that the Wednesday before we left, we took him in to have him looked at, and everyone agreed that we needed to stop using the tegaderm for a while to give his skin a chance to breathe and heal. But we still need to protect and cover his insertion point both to keep it clean and to make it harder for Ethan to scratch. As a result, Ethan is wrapped in two rolls of gauze in a gladiator vest style. It does keep him from picking at it, but it’s a chore to do and we have to change it every day or two. We tried to go back to his normal dressing last night, but he scratched it off again overnight, so it looks like we’ve got at least another week or two of the gladiator.
So, anyway, back to the trip. We arrived in Minneapolis just after lunch on Thursday. We got really lucky, not only did the Ronald McDonald House have room for us, but one of their long-term apartments had just opened, so we could go right in there and wouldn’t have to start out in a smaller, hotel like room and change later.
The room is decent, a one bedroom apartment probably about 500 sq feet. The bedroom’s got two queen sized beds AND a set of bunkbeds (so Caleb felt right at home), as well as two good sized closets and a desk. The living area has a small living room/dining table/kitchenette, and there’s a bathroom off of the entryway. We’ve gotten most of our stuff unpacked and even got most of the posters up that folks have sent us..thank you again! We’ve also got Sarah’s computer set up…thank you NWEA for helping make that so easy. The internet connection leaves much to be desired, but we’ll figure that out next. We’ll have to figure something out for a second work station when Todd gets back to work as well, but we’ve got a few weeks before we need to have that worked out.
So, we’re catching up on laundry, and getting to know our way around the House again. Caleb loves the game room and the playroom where there is a place to do a good train layout, and the other playroom where there is a play grocery section and some toy castles. Ethan also likes the playroom where there is a toy kitchen he can fix us imaginary soup. When we were here last summer, we weren’t really here long enough to get into the routines around here, so now we’re learning about Bingo night and where the SuperTarget is, etc.
We’ve also met two other Hurler’s kids and their families who are here at the house at the moment. Believe it or not, we’ve met kids with other MPS/ML types, but this is the first time we’ve ever met other Hurler’s kids.
At the moment, since Ethan hasn’t started his appointments, I feel a little like an interloper here at the house—using the facilities and services, but not really deserving it. I know that will change quickly enough once Ethan starts chemotherapy and during his outpatient period. It’s at that point that the house will be an irreplaceable resource, allowing us to concentrate our energies on caring for Ethan and helping him get better.
On Monday, Ethan starts his pre-transplant work up. Here’s a list of his appointments.
Labs and Calendar Review, Chest X-Ray, EKG, History, Echocardiogram, Cardiology Consult
Neuropsychology, BMT Coordinator Mtg., Audiology, Ear, Nose and Throat Consult
Radiation Therapy Consult, Simulation, Occupational Therapy Eval, Ophthalmology Consult
Social Worker Mtg, Pulmonary Consult, Endocrine Consult
Physical Therapy Eval
I think he’s going to start chemo the week of 1/10 on an outpatient basis, and then will probably be admitted a week or so later depending on how his body reacts to the chemo.
I've posted some pictures of the trip on FB:
Thanks for checking in on us.
Happy new year!