Isaac is getting an IV antibiotic every 8 hours, which means this mama has to make sure he’s getting it every 8 hours. It takes 30 minutes or so to run, however when you forget to unclamp the line (as I did this evening) it can turn into a 60 minute infusion. This gives me time to think, and ramble. We have been busy this week in Minnesota coming up with ways to entertain and exhaust one amazing little three year old.
We have visited an amazing train shop (if you’re ever in St. Paul Minnesota stop by Choo Choo Bob’s!), and we have visited the Minneapolis Children’s Museum. During these adventures we have seen this kid that was just on oxygen and about to be air ambulanced to Minnesota two weeks ago, run like a man possessed from one place to another with uncontrollable excitement.
It is remarkable times like these that remind us just how amazing he is. He is essentially doing all of this running and playing on 1 or so lungs….. the or so comes from the fact that the right lung is so very scarred we’re not sure how much of it he is able to use right now.
He is also doing all of this while breathing through a trach and being fed by a feeding tube (although the tube does mean less stopping for meals!).
Last week’s conversation with Isaac’s surgeon was anxiety inducing, to say the least. To hear the man who has saved your son’s life (and quality of life) offer options for saving the use of Isaac’s lung while eliminating chances for these horrible fistulas to keep occurring is anxiety inducing enough – our choices are to use a piece of muscle to separate Isaac’s lung and esophagus or remove the lower lobe of his lung.
To hear him tell you these slightly scary options, and follow them by telling you that neither will work for your son, to especially hear this man that you have all of the faith in the world in tell you that option two (removing part of the lung) is too dangerous to do now is frightening and makes you kind of mentally check out for a moment.
If the one person who has always been able to help and fix your child is telling you that neither of the options he has will work what exactly do you do?
When he tells you that the option that is “very dangerous” is something he’s holding onto just in case nothing else works and he has to resort to it how do you tell him no??
I have learned that it is important to mentally check out sometimes, because then I don’t blurt out every thought I have and I can process the hope he gives us in the next sentence.
Dr. Hess suggested keeping up what we are doing, very simply forcing the chest cavity to scar and block the fistula itself. It is tedious, and it requires frequent (as of now this means weekly) trips to the O.R., where Dr. Hess often throws in a surprise procedure or two.
This is exhausting, we are stuck in Minneapolis waiting out the next trip to the O.R., missing our family back home (Isaac’s baby brother and daddy in particular!) and missing the nurses that allow us to function as normal human beings on a daily basis.
It will mean a few more trips to Minnesota this summer, but we will do it. The care Isaac receives here is unmatched, and we understand that there are not any surgeons anywhere else that can do for him surgically what Dr. Hess does, or that can match the devotion Dr. Hess has to him.
It is hard to complain about the time away from home and the money spent, when you are at a place like the Ronald McDonald House, where you have witnessed loss on a whole new level (because the loss of a child is not a loss like any other).
We saw another family lose a beautiful little girl last week that Isaac once played with on a trip to Minnesota …. In the midst of all of our fear and concern we are reminded that we have very little to really complain about…… More on our lessons learned at RMH later.
-Kim