Well, today started off on a sour note and is unfortunately ending on one too. Last night involved little to no sleep for everyone. Preston finally perked up around 11pm after sleeping ALL day and was confused, drugged, and wanted nothing but me. I was of course loving that but it required me crawling in his crib and snuggling till 2am with him. We actually both fell asleep and Tim woke me up to crawl into the sofa bed once Preston was passed out enough to not notice me leaving him. I'm pretty sure I need a neck replacement! LOL Those hospital cribs are clearly not meant for adults! What we do for our babes! We noticed yesterday that when we go to suction P, we have some resistance when we reach the 10 mark (thats how far down we go to suction). So they put a small camera down his trach first thing this morning and decided he needs to go to the O.R. for several reasons. I am too tired to explain it all but it looks like his his trach is touching the back of his trachea. It is occluding his airway somewhat and he needs a trach change with a longer trach. He needs to be scoped and they want to be super safe and do it in the O.R. After several ER patients got admitted today, Preston's time slot that was supposed to happen this afternoon is now bumped to first thing tomorrow morning at 7:30pm. This is very disappointing. The poor thing has not had any feeds since 10am. He keeps signing to eat and drink and doesn't understand. They want him to keep an empty belly to be on the SAFE side so he doesn't aspirate if anything were to happen emergently. The issues he is having all stem from his procedure not going the way most LTR's usually go. It has been such an emotional day. Tim and I just feel like nothing ever goes the way it is 'supposed to go' with Preston. I feel like my poor little guy can't catch a break! The reality of being here for 6 weeks has sunk in and if I am being honest, it stinks. I have cried a lot today and it feels good to just release it all. I have held in a lot of my emotions up until now. I called home to talk to my mom and when I heard Reid in the background talking, i just lost it. I miss home, our morning walks, trips to the park, the chaos of lunch time, the quiet afternoons during nap time, our evening wagon rides, the snuggles before bed when the boys get their milk and blankees. I miss watching them play together and get into trouble together and crack each other up! I miss my bed! I miss my sister and niece and nephew and the play dates we have so all the cousins can play together. I miss being busy with my business and talking/seeing my customers and consultants. I know this is temporary but it feels so good to just say it and be REAL! Yes, we are in a great place.......the ONLY airway floor in the country with world renowned doctors and amazing nurses who specialize in Preston's issues! But that doesn't allow us to be close to HOME and be with Reid and enjoy our summer the way we should be able to! By the time we get home, Tim will start back up at school. I am grateful we have the opportunity to get our son the BEST care and we know the end result will be worth all of this......it is just so raw right now in the moment. We feel helpless in a sense. It is a waiting game to see if the LTR surgery took and will be a complete success for him. This is weighing very heavily on my mind and I am BELIEVING with all of my might that his grafts will heal and everything will take the way its supposed to! Easier said than done! I am not trying to be negative, I am just being real tonight. Tim and I have stayed strong for so long and I knew this part of the journey would be tough. I just didn't realize how tough it would be at times. I knew there would be days like this. Just didn't anticipate it coming so soon. We are turning in early for the night to watch a movie and just get our minds off everything. Praying for a successful bronch tomorrow morning and hopeful a new day will be just what we all need. Thanks for letting me use our blog as my personal therapist tonight! I feel SO MUCH BETTER! LOL Maybe we all need a blog! J/K
I will update tomorrow after his trip to the O.R. with results! :) One last thing.....RMH is still full with no rooms available. Will call tomorrow to see the current status! Hopefully we will get in soon!