Grier and I left around 10:30 to go to the hospital for his MRI-- Hayes and Grace were out of school and luckily my mom was off from work-- or this schedule was going to be near impossible-Hayes and Grace are getting the shaft each day as this schedule is taking a toll on all of us--- Lately, I have had to cancel school conferences because of a Hospital Stay, leave one or both at home after school and I am always forgetting something-- "surviving" is what I like to call it-- it is not multi-tasking because it is not intentional--- I am always playing catch up because the plan I made 30 minutes prior is messed up by a fever or something new that lands on the schedule-- I have not had too much compassion lately with schedule changes.... and I am not surprised. There really has not been a handful of days in the last month and a half that we have not spent the entire day at the doctor's or were in patient at the hospital-- hard to believe?? The other thing is that with these appointments no one asks me if they work-- it is not a choice-- it is scheduled and you just go-- I guess I could be like the rest of Charlotte and bring them to the LCH lobby and let them hang out-- that has become the daycare of the hospital--- and in my opinion if the "swine flu" is airborne than the under 18 group should not be in the lobby either-- since that is the only way to get to the floors!
Today was no different-- not sure what happens in radiology but being on time is just not going to happen- We waited 3 hours..... I was asked by 3 separate people about the history I just filled out on the profile for Grier--- and by the time it was time to go to the MRI machine--- Grier was DONE- he was fine when we got there but after 3 hours and all the explanations of what has gone on the last months and years and what was going to happen during the MRI he was DONE--- at the very end he just sat in my lap and cried-- very unusual for him to do-- but since he knows so much and listens so well--- he was thinking they were going to put in an IV while he was awake or use his port--- of which neither happened--- he had to breath the gas and then he fell asleep and they used a breathing tube-- which I hate for them to use-- but because they said 4-5 hours that was what they wanted to use-- and guess what-- it was done in 2! BY the time I got to recovery I was asked a zillion more questions about his "cough"--- well.... he did not have a cough before I gave him to you-- and all of a sudden I heard the "cough" and it was low. deep and wet--- I told them this is not how I left him-- and they called Anesthesia-- then it always gets into well-- has he been around anyone that is sick-- ??? And when did he have this lung surgery??? AND the BEST question of the day was.. WHY DID HE HAVE THIS MRI ANYWAY??? I answered no... except for his in- patient stay last weekend at the hospital-- and the surgery was over a month ago and we have not had any issues until now- and I had to bite my tongue about the WHY??? --Obviously he has cancer DR. and we were following up after 2 rounds of chemo!! All questions the 3 asked before the procedure--- He slowly woke up a little and they did chest compressions on his back to break up whatever was in there-- he was waking slowly and very "drunk"-- but we left-- he was awake enough to want a Bennie baby at the gift shop-- so we went it there to choose the new stuffed animal!!! While we were in there and looking he scooted to the edge of the stroller and when I turned to get the animal he wanted he fell out and onto the floor!! The lady was so surprised and he was just laying there and looking at us-- I knew he was alright and I just put him back in the stroller and paid for the animal--- ahhh--- just another day for us!
We got home around 5:15-- looked at a few emails and saw some good news-- with the help of a friend, our seats on our flights are not middle seats all separated anymore-- and we did not have to hope for someone to be compassionate on Monday afternoon! Thanks Deborah for that help!!! :) I was already planning for the three of us to wear masks on the plane in the hopes that someone would just not want to sit next to us and then swap seats!! We went to dinner-- something we have not done in awhile -- pizza at Luisa's --- I was actually out voted--- I just wanted to stay home-- but since we have not all been out in a long time I caved--! As soon as we got there Grier was shaking--- said he was cold and all of a sudden there goes dinner--- we did hang in there to eat pizza but left as soon as we could-- Grier was still saying he was cold and when we got home I checked his temp--- 101.2! FABULOUS--- just when I thought we were done with fever admissions---- I called and because he counts are OK-- I was allowed to give him Tylenol and wait.... we have to go in the morning anyway--! Hopefully we make it all night in our beds and this was just an anesthesia fever!
I guess the details... ( and trust me they are not the whole story) should give you some sense that this is hard as S@#$! And unless I figure out a way to clone myself--- things will just get cancelled or missed-- I honestly need to see if Blue Cross Blue Shield will pay for a full time mommy because I am the full time nurse these days----!! I will let you know what the case manager says to that!! :)
Tomorrow is another day (we actually go to the clinic)... I am hopeful it will be a little easier and that fever will go away -- Halloween is Saturday and I will be so mad if he has to miss it again!! Two years ago he was in PICU at NY Presbyterian on Halloween and it was not fun!!! We have tickets for NYC and they are non-refundable ( and trust me... the airlines don't care if I tell them we can't come because my child is in the hospital because of cancer-they don't have a policy for that!)-- I also just want to get this next step going so we can get a plan of some sort what life will be like in the next 2 months....NOVEMBER and DECEMBER! I have a feeling what it will be and I just need to prepare for the craziness NOW!
PS-- As we were driving home from dinner... Grier announced that he wanted to live at the beach because there are NO DOCTORS there! That about sums it up!! He did add that if he needed a shot at the beach I could do it :) That must have been the fever talking--
2 comments:
A fraction of that day would have had me screaming at the top of my lungs. My greatest pet peeve when we were in the system was what you recounted -- telling your story over and over again. Hello -- computers??? Surely it is all written down. And why do 3 people have to be briefed?? before you even see who you came to see. Goodness you would think they would know how taxing that is on the family. And does Grier have to fast before these MRIs that they are delaying 3 hours? yikes. My heart felt every step of that day for you all. And every minute of that dread at dinner.
There is no place better to recover than at home. May you be able to stay put for a bit that is, except for school and Halloween and sports. If it could all only stand still simultaneously while you caught your breath.
xxoo.
Ashley.
Just know that alot of people are praying for Grier and the whole family.
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