So there we sat...2 hours until boarding. What am I going to do with this child for two hours at 4:30 in the morning and no medication to be given until 8am. First, we checked out the coffee shop to be utterly disappointed in what we had ordered. I knew the Ipad had to last until we got home (assuming midnight since we were scheduled to land back home at 10:30), so I took advantage of the charging stations and allowed him to play on the Ipad while waiting. We took breaks to go to the bathroom, look around at the gift shop, and look at the planes out the window.
Then it was time to board with no incidents. He did wonder if he'd get a window seat and had hoped for one. He got it. :) He listened fully to the instructions by the attendant, by even getting out the pamphlet to read about emergency evacuations with the life boats, etc. This told me he had some concern about safety...so I reminded him of the helicopter ride and told him this would feel much different than that taking off and landing.
The take off..."whew, we're going fast. Ohhh, my stomach as we lifted off.", he said. He reminded me real quick, mom we forgot gum...we were supposed to get gum (he had been told this for his ears, but didn't know it to be fact that it was needed). This brought on a bit of anxiety, and I just said, "well, we can't turn around now". Asked him, what are you supposed to do when you are out of control in a situation and cannot do what you want? He said, "take a deep breath, be glad I have a supportive adult with me, and pray". I replied, "Perfect, and I'll pray with you". So he watched out the window as the city got smaller and smaller, he watched the wings, and questioned some of the shaking during turbulence (it was a really windy day). Overall he did fabulous. I couldn't have been more proud of him, his behavior, and attention to all that was around him.
Only what seemed like moments into the flight...we had an emergency on board. A few seats behind us a passenger had become unresponsive, as the attendant was yelling out to everyone asking for a nurse or doctor on board to come assist. I thought to myself first that ohhh no we're going to have to land, but was quickly interrupted in my thoughts by the sweetest voice beside me say, Momma...let's pray for that person right now. I nodded my head in agreement, and he proceeded with the prayer. I cried because I was proud of how quick he responded. Then, continued to cry on how disengaged I was from empathy and how self centered I was. Finally, because the words that only a confident child could say in faith.
We didn't have to make an emergency landing. When it was time to land, the pilot came on (that made Koda's face light up) to let us know that we would not be exiting the plane, but that the paramedics would be coming on to assess the passenger first. Landing gear came down, and Koda watched with amazement how the wing flaps came up to help break our speed. He said my ears do hurt, so can we please get some gum before we get back on tonight? I told him yes. The paramedics came on, assessed, then asked passengers to exit so they could get the sick passenger through the isle. The paramedics had the gentleman in a wheelchair pulled up to our seats so we stayed seated while they got him off. We told the gentleman we'd continue to pray for him, he smiled. I'm so thankful Koda got to experience a person being completely unresponsive to being responsive because then He knew he'd be okay even though he might be sick. Then we got off.
Now the anxiety hits me a bit, where's the car rentals, where's the bathroom, where's ...ohhh, thank God I don't have to go deal with luggage as we only had carry on's. We find that we have to be shuttled to the car rentals, so we get on the shuttle and go. Koda again excited to be the only ones on a shuttle bus, so he can direct the conversation with the bus driver. He takes those opportunities often as he has a lot to say (wouldn't know where he gets that from).
I had never rented a car before, so I was hoping my husband had all this lined out. Sure enough he did...and it was a NICE car. I go to plug in my phone to charge, and realize I had left the charger in my car. I didn't pack it, it was one of those last minute grabs that got thrown up on the dash. How in the heck did I forget my charger? Koda's Ipad charger doesn't work for my Android phone, so I was a bit frantic. The Ipad didn't have a internet connection so couldn't use that. See it was seriously at 3%, and I was in a town where I didn't know where anything was. I couldn't even get to the hospital if I wanted to without GPS. Where the heck is a map? Find a gas station and buy a charger, I thought. So, that's what I did. Well, it was a cheap thing that didn't work really. It couldn't keep up with the GPS on...so I hurried to find a local drug store, Best Buy, or whatever. Found Walgreens...yay, got a charger. Whew!
We are in St Louis at 8:30 with no appointments until 1pm. I gave Koda his meds and we headed to Science City. I will post all the pictures taken from the trip in an album on Simply LOLA Facebook page tomorrow. It was fun, interesting, and Koda got to build a dinosaur at the Build-A-Bear workshop, in-which he named Ripper. All was good. We headed to the hospital and with the first appointment being much of a disappointment; I needed to take a break and chill. So I took Koda to the center lobby of the hospital while between appointments, and let him play while I read.
Second appointment was worse, and this was with the neurosurgeon. He walked in, said "I'm not sure why you're here...I don't have anything for you. I'm glad you had another appointment." Ohhh wait a minute, no we're here to discuss the surgery. I have questions. I know what the plan is. His body language told me quickly while he was looking at his pager while stating he was on call; that he was going to leave the room with us discussing nothing. I said, but what about the dural ectasia, which plan are we going to finalize, and for goodness sake no one has showed me any images. He then quickly became the man I met the first time. Compassion set it, he grabs the computer, and says "here let's look at them". He showed me what the dural ectasia had done. :( What can be done about this, he looked at me and said, "nothing can be done". We don't understand it, we don't know why it happens, all we know is it is uncommon but has a history of showing up in NF patients.
He allowed Koda to take some pictures of the "scary/horror faces" from the MRI scans which will also be included in the album posted to FB. We did decide that plan C which is the final out of 3 different plans would be what we'd go with. This plan includes ordering the implant to perfectly fit the hole. The implant will be attached with a dissolvable screws/joints that will take about a year to completely dissolve. This is so there is nothing to affect with future MRI scans. Koda already has an adult size head, so we're hoping this implant will be able to stay with him. It is possible that Koda's head could continue to grow leaving the implant as a floater, which would cause for another surgery to replace. I still left this appointment very unhappy.
And the rest of the story...
(Part 2 coming tomorrow)
