Saturday, October 23, 2010

I love modern least most of the time. I am sitting in the van (NOT driving!!!) logged on to the internet thanks to my new phone and Verizon's graciousness of providing two free months of using my phone as a mobile hotspot. This is very sweet. :)

We are on our way to Scottsville, albeit much later than planned, to help Chelsea and Roman move. We have had the girls since last Saturday and they are totally exhausted. Chloe likes to awaken before dawn at my house, so she and Emily are currently sleeping really well in their car seats. Will is traveling with an IV since he is just not feeling well. We have packed an extra bag of fluids for him, but hopefully we won't need them.

We are supposed to head back to Ohio in a little over a week. This past week was spent seeing Dr. T to discuss Will's current condition and to make plans for the coming two months. We would really like to avoid another metabolic crisis like the one that caused our tour of hospitals. I once again asked her if we had to go through with this surgery. Her response was so disheartening. His upper extremity reflexes were gone several months ago, and now the lower extremity reflexes have deteriorated. We have no choice but to continue forward and pray for the best. Ugh. I truly hate that answer. We have no choice but to move forward but we have no guarantees. We have hope, but no guarantee. I know that this is where faith comes trust that the Lord is in total control of this and we have but to follow the path that He has established, but the mom in me is just screaming on the inside.

We also met with a new cardiologist. This particular cardiologist was the one who evaluated Caroline's heart murmur and actually had a grasp of mito, POTS, and Ehlers-Danlos. (My favorite statement is that he could use mitochondrial disease properly in a sentence.) :) He cleared Will for surgery and is also going to send a letter to the neurosurgeon to recommend that William remain on hydration therapy (an IV) the entire time he is inpatient.

This week we see Dr. Aaronson for Will's pediatric pre-op appointment and finalize preparations for Ohio. We have requested an Angel Flight for Nov 2, need to discuss nutrition issues with CCHMC for Will postop (a wired jaw and food allergies are gonna make this interesting...), and still need to make arrangements for the older boys for while Billy and I are both in Ohio. There are a bazillion other details like organizing Will's schoolwork, ordering IV fluids for the week we are in Ohio before surgery, organizing our lodging until we can get into the Ronald McDonald House (takes about five days on the waiting list to get a room), and determining whether I can afford a new blender. Researching how to give Will decent (healthy and tasty) food while his jaw is wired shut is going to be a bit time consuming. If anyone has great soup recipes that don't look absolutely disgusting when blended;, don't contain milk, corn, or soy; and don't take all day to create, please send them my way! If you have a soup recipe that tastes like a hamburger, then that would be totally ideal. :)

Will does know about this upcoming surgery. He handled the information amazingly well...I pray he isn't internalizing it all. All he said was, "It is only for six weeks, right?" regarding the jaw being wired shut. Lord willing. We did laugh and chat about how he could practice his ventriloquism technique while he is wired. Is this a case of "we either laugh or we cry?" I'm not sure.

Tbis past week was 740 miles long (not counting the drive to Chelsea's today). We normally hike in the Shenandoah Park on Halloween, then have a campfire. This year that is looking so uncertain. Will cannot hike six miles, so we are going to have to find a new tradition...This coming week is a bit crazy in preparing to leave again, but hopefully it won't be nearly so crazy as this past week. Will is not feeling well, so I am praying that he isn't going to become really sick. That would require a postponement of the surgery. It took three months to get this date...

No comments: