I think it is well beyond time that we give an update. Overall since our last update, life has been interesting and fun! We “enjoyed” a bout of norovirus and covid in the household that kept us from most of our holiday gatherings.
The big update:
As you may remember, when Richard was hospitalized in late April of 2022 the Surgical Team at Seattle Children’s Hospital said that “there are no more surgical options for making Richard’s feeding tube work correctly.” That was when we switched to a central line (IV in the aorta/next to the heart) for Richard’s nutritional needs. With the central line there is a notable increased risk for blood infections and liver issues. Also, we now get weekly deliveries of “specialty medication” (his IV nutrition) that is restricted to the state(s) in which the prescribing Dr. is licensed.
Richard’s GI doctor recommended we get a second opinion from Boston Children’s Hospital, who is the forerunner in the field for Richard’s niche of medical challenges, to see if there are any other options, other than a central line. They would do some tests and studies to see what’s going on with Richard’s anatomy and come up with some ideas. The doctor we spoke with said he found it “hard to believe” there were no other options than central line, and the goal would be to figure out a way to get him off a central line, which would open back up a lot of doors for us.
On that note Richard, along with the family, will be traveling with the 5th wheel to Boston Children’s Hospital for a 2 to 6 week inpatient visit (likely but still unknown). We do not have a departure date yet. But we will likely take 3 or 4 weeks to drive over to Boston and then admit.
One question you might be asking is, why don’t you just take a day and fly out there? Well, we would want to all go as a family, for one, especially because we don’t know how long of an admission it will be. Secondly, due to our experience with our camper at Seattle Children’s it is so much better being “close to home” during such a stressful time. Unfortunately Boston Children’s Hospital does not have RV parking but it looks like there are campgrounds not too far away and definitely closer than Washington state.
One of our sayings with Richard is, “whatever Richard needs, Richard gets.” We want to make sure we’ve explored every option to give him the best quality of life and more health freedom. We have a lot of logistics to work out, not only with Boston, but getting there and still coordinating Richard’s weekly nutritional deliveries (as described above), and Katie not taking a bunch of time off work. So…we might be coming to a town near you! We will be trying to get there quickly but will have to stay in a few towns for a couple days for his deliveries.
We will keep you all updated as we know more.
Please be praying for peace of mind that this is the right decision, for everything to work out with insurance (or not if we’re not supposed to go), and for finances, timing, weather, and everything to come together for this massive trip.