Tuesday, April 7, 2015

I am in familiar territory in a town that I do not know at a place that I’ve never been. Eli was curled up asleep in the bed of our hotel room last night after recovering from a three and a half hour sedated MRI of the brain and spine with an added test called CINE, which evaluates the flow of CS fluid within the central nervous system. After a day, yesterday, which started 0715 hours, and ended at 1715 hours, we ordered pizza and watched SpongeBob and soon after he went to bed. Yes, I have been here many times before, rushing him to appointments within a hospital labyrinth; convincing him that the nurse knows what she’s doing; coaxing him to pee in a cup when he is dehydrated from fasting for sedation preparation; putting hospital scrubs on him; translating his looks into words for the anesthesiologist; finding the cafeteria which is called a cafe’; talking with people I don’t know like little Patrick, Jaydn, a man named Frank, and a woman named Ruth. I’ve been lost many times before today at
hospitals, but I know how to ask questions and I know how to say, “I’m new, I do not understand.” Like today, the sedation nurse was dismissing him, and in her humorless Indian accent, she said, “You need to go to the pedi clinic now, can you get there?” I said, in my best Alabama drawl, “Well now, I’ve mastered elevator C and elevator F, can I get there on one of them?” She paused for a second and looked solemnly at me then said, “I will call someone to take you.” I did not sense confidence.

To catch up my blog readers: After we arrived at Lads to Leaders in Nashville, we got a call late Friday afternoon that our insurance had gone through quicker than expected at MD Anderson, so they wanted to move Eli’s MRI up from Thursday to Monday morning at 0745 hours. Our ear-jerk reaction is “Great”! Our brain reaction after answering the nurse with “We will work out whatever we need to work out” is, “Wait, did she say Monday as in two days from now?” So, after the kids finished their participation in Lads on Saturday, we came on home, expecting Eli
and me to drive back to Houston all day Sunday in order to be ready that early on Monday. I was so incredibly tired from already driving to Houston and back that week, and straight to Nashville, and then home from Nashville late Saturday.

If I had driven to Houston on Sunday (and we only had Sunday to drive) I think I figured out that we would have driven 2600 miles, made three hospital stops, stayed at four hotels, and touched five states in six days. The plan at the time, according to the MDA schedule for us last Friday afternoon was for us to be gone until the next Tuesday, but now it looks like we will go home Thursday or Friday. I made arrangements for the kids and Vic. Consistency and routine is very important for their own little every day lives, so with long-term situations (can't be a party
everyday, friends and fun all the time), I try to keep their care to just a few options. It also simplifies things in their world for them.

On our way home from Nashville, we were persuaded to fly to Houston for the first leg of our trip. I was just so tired, and we had to get there so fast, so we caved pretty quickly. I just prefer the independence of driving myself. But, Eli (or any of the kids) had never been to an
airport, or flown. So, he was soooo excited. Easter morning, I was able to get the house a little bit easy to deal with for helpers, and had more time to pack according to the carry-on rules, and we were able to get some paperwork together about Eli’s medical history in case we were stopped for the
metal in his head. Thanks to my substitute Easter Bunny, the kids all had something better than their real East Bunny could do for them Sunday morning, so we enjoyed that time going through all of that and eating Easter Bunny cake for breakfast together.

Eli was very excited to fly on an airplane for the first time. It's been 15 years at least since I've flown. I was not so excited about flying, but was happy about cutting down our travel time. We will drive home in the rental car. The Huntsville airport is very simple, and it was super easy to go through. We weren't sure how Eli's shunt, with the metal valve, would do, but we had a medical card for it and they said none of the machines had any magnetic properties, so we went on through
smoothly. I did not want to have to deal with waiting on baggage, so we only had a child's suitcase, my laptop backpack and Eli has a small backpack that we carry wipees and waters in. We packed very very minimally. Even if I wanted to pack more, I could not have because I had not been home to do laundry in a week, and had not done it before we left for Houston so abruptly.

We landed in Houston about 1530 hours. The plane was so tiny!! I am very claustrophobic, so I was a little worried how I would do. But I dozed and just distracted myself watching Eli play angry birds. He was so excited. He was trying so hard not to smile. I couldn't tell at first, he looked kind of funny once we first got in the air, I thought he might have started to feel bad. But he settled after he
ate. Houston was pretty easy to navigate, and I imagine wasn't busy compared to what it usually is. We got to ride a bus to the rental car place, and I thought we were going to get a mustang. It was several upgrades from our reservation, and the guy gave us his employee discount, but still way too high for so many days. Then when we picked out our car, there were not any with backseat airbags in that range. So, I did upgrade once to get the airbags since we had such a long trip home, and navigating unfamiliar territory in an unfamiliar car. So, I picked out a blast from my past, a VW Jetta. I've had two, and LOVED them. Don’t know that they are great cars as far as reliability or anything, but I just flat out like them. Eli was not so impressed, but we did start with a mustang, so hard to reign him in from that. We've had our
lunch/supper at cracker barrel and headed to the medical district for our hotel. I thought I picked a hotel from across the street from where we need to go. So, up until Sunday night, everything working very smoothly.

The universe righted itself Monday morning. We ain't in Kansas or St. Jude any more! And I really could have benefited from a yellow brick road to lead me this morning, and a wizard and/or a fairy godmother - I am an equal opportunity recipient. I remember being so overwhelmed being at little LaBonhuer Children's hospital in Memphis, but was so reluctant to leave the 7th floor in January of 2012 to go to St Jude. Then, St. Jude became like home as well after we realized everything for patients is actually so small, and Eli loves to go back. Anything that can be made easy, is made easy at St. Jude.

But, wow, at this place. I guess because it's adult and pediatric, so it is like a multidimensional maze - buildings are numbered, and elevators are lettered. And, just little things are different, like parking at the hotel is $11 every time i go in and out, and wheelchairs have to stay on hospital grounds, like i cant wheel him back to the hotel. We don’t have a meal card, and we MIGHT can get a discount - not free - at the zoo, children’s museum, etc. Valet parking has a huge line, the shuttles look crowded, just things that we are not use to are done differently, as it would be everywhere.

And, you guys are amazing. How humbled I am when you all are come to my rescue with names, phone numbers, places, such beautiful offers of help after you read my whining. I’ve tucked it all away for when I need it. You are all like soldiers with your hand on your sword, just waiting for a reason to wield it. We are doing very well, don’t let my whiny narrative prattle deceive you - just sharing the color of our day. We may not be efficient in time or money yet, but we’ll get better. Eli is kind of being shoehorned in, so I think they are doing things as they would not normally here at the hospital. The nurse even apologized that they weren’t making a very good impression, but I know that we are a little bit of an exception, and everyone has been willing to make double sure that we are where we need to be, getting and doing what we are needing to do, so we are patient and don’t mind figuring stuff our ourselves when we can. We were spoiled at St. Jude, and even did not take advantage of the travel reimbursements from there. I always thought that we benefited in so many other areas, we would just pay our gas to Memphis and leave that for the program to give to others. So, I’m not use to “applying” for reimbursements and discounts (I am not even a coupon clipper at home. Not because we don’t need it, but time and brainpower is scarce), but I will need to learn it here if we end up here for the trial. We were very rushed to get back to Houston this trip, and even then we only got word that we were
coming Friday afternoon, so no business days to work with. I didn’t have time to look into places like the rotary club hotel, or any real patient-oriented places. We do have a social worker that has given us a list of places, and I’ve checked out Joe’s House website. We just had to pick up and come so quickly. The cheap patient places take reservations days in advance, maybe months, so they book up and have waiting lists. It’s not like St. Jude, where if the Delta House is booked, they send you to a hotel on their dime. If patient housing is booked here, you are on your own.

I thought I did so good with where the hotel is located, so that we could walk to the hospital. Well, that only works if you know which way to go coming out the front door of the hotel. Monday, Eli and I walked - at a good clip - for 40 minutes before we found the door we were suppose to go in at MDA. Then another 15 getting to the first check in (great workout, but not for a little boy who is already a little weak and has not been allowed to eat or drink). As we suspected, they had only moved his MRI appointment to 0745 today and not the preparatory appointments, so we had to get his port accessed. Since it is from another hospital, he has to go
somewhere else first, blah, blah, blah, waiting, waiting, waiting, finally got that done. Then his shunt was an issue. Had to hunt down info about it, bring neurosurgery over to check setting, several things. So, he finally was under at 11. I think we are dealing with "Research" department and "pediatrics" and "neurosurgery". So, it's like three different places are trying to work on things. So, we think our schedule for the week has been updated, and eli and I should get to come home Friday, and we should know by then if we are over this hurdle, which is big. If he gets through this, I think all that is left is the the ethics committee. Today, he had a lumbar puncture to check for cancer cells in the CSF, and we are enjoying
 the familiarity of Chick-fil-a in the cafe. Lastly, today, we have an appointment with the oncologist to talk about the MRI. I am anxious to see how much the disease has progressed since February. We do not see very many children, except once we get to the little clinic, but I have learned that we need to go to the ninth floor for fun, and thankfully that is via elevator F.

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