Hard to believe we have been home for 3 weeks tomorrow! Time has slipped thru my fingers much quicker than I anticipated. I haven't had time to update the blog nor have I felt much to share. It was a HUGE transition for everyone the week following our home coming. YIKES! I was in a bit of a funk. From Preston biting Reid to Reid realizing he was no longer the KING of the house! Melt downs were in full force and Tim and I were wiped. Things have leveled out, we are in a great routine FINALLY. We attended church (my childhood church) for the 1st time as a family of four. It was awesome. Just wish the boys could go to the nursery but that day will come. They love the music and it was great seeing our friends. Preston now has a new feeding 'super mini size' backpack he can wear while getting his feeds. Its awesome. He looks SO CUTE wearing it.....its like a mini north face with a waste strap and everything. It may be cute and all but I am dreaming of the day we can stop giving Preston g-tube feeds so he can go back to eating by mouth. We leave in 2 weeks and 4 days for the stint to be removed from Preston's airway. This means no more g-tube feeds. I can't wait! I am nervous to make the trip without Tim........we asked my mom to come with me (so thankful she is available whenever I need her for times like these) so he wouldn't have to take so many days off work since he is making trip #2 the following week with me. Tim and I decided to have us fly into Indianapolis from now on instead of Louisville. It is a direct flight on Southwest so there is no plane changing which takes up a whole day to travel. Plus, the drive is much better. Its 100 miles to Cincinnati and we plan to rent a car again. My mom and I are excited for this adventure and of course we plan to make a pit stop to Graeters for their Fall flavor....PUMPKIN! Its sad when ice cream becomes a highlight of the trip. LOL On a serious note, I am relieved my mom will be going with me because she now suctions Preston and really helps with his trach care. Takes a lot of pressure off me when I am not with Tim. We will be staying in a 'short stay' room at RMH and already have it booked for both visits. GREAT NEWS! :) We fly in on the 18th and Preston will be inpatient on the 19th once the stint is removed for observation and the feeding team will consult with us regarding his next step to eating orally again. I am sure we will have to do honey thickner for liquids like last time. We will fly home the night of the 20th. Then Tim and I plan to fly back on the 24th for his bronch on the 25th. We will fly home late that night. That will be our 'big' trip in terms of hearing what the future holds for P once they see his airway after the stint has been out for almost a week. I would be lying if I said I don't think about this every day. I just want to know so badly when his time will be to sport a naked neck! :)
I also think about how much will change for us and our daily life when that time comes and I honestly don't know if I am ready for that either. There are 4 scenarios the dr gave us that could be answers once they bronch him. I apologize if this all seems confusing.
1. His airway could look awesome. The stint did it's job by keeping his airway strong and open and the graft that they think is gone is no longer an issue (either way). His swelling (the big issue) has gone down significantly with the new meds he is taking to help with this. We could go home ready to work on a speaking valve and schedule our next trip to be bronched a month or 2 later. This is BEST case! I am remaining hopeful but being cautiously optimistic.....I just don't want to get my hopes too high and be crushed if this isn't the case.
2. His airway is no longer swollen (so they will be able to determine the outcome of the posterior graft) and if the graft didn't take and the stint didn't do what they needed it to do, the LTR surgery will have to be done again. I can't put into words how I feel about this. Totally sucks! But this time it will only be a single stage instead of double stage since the other graft looks great! This will take place around January or Feb. Just a guess.
3. His airway is still swollen so they can't see if the graft took or not BUT the stint did it's job so now we have to wait out his swelling before we move forward with any plan to decannulate.
4. His airway is still swollen so they can't see if the graft took or not and the stint didn't do it's job so now we have to wait out his swelling before we can do anything. They need to see if the posterior graft 100% is gone or 100% took. They are taking aggressive measures to get his swelling to go down but Preston has an 'active larynx' which means he is prone to swelling instantly. This has been a surprise to all of us. We didn't realize this when he had his surgery. This isn't good when they want to see far down his airway. The dr said some kids take 1-4 years post LTR surgery until their airway is big enough and the swelling goes down for the trach to come out. I about fell on the floor when he said this. But he is being honest with us and giving us real examples of what the future 'could' hold for Preston and I appreciate that.
Once Dr Rutter spelled out our options, I point blank asked him, 'I just need to know......will Preston ever be able to get his trach out?' and he said "OH YES! It just depends on how inconvenient it will be for him and us to see that happen but he will be decannulated." That was all I needed to hear. We are living life to the fullest. Preston is HAPPY and HEALTHY and we know what to expect on a day to day basis with his needs. We no longer let the nursing agency stress us out over shifts even though I think they are idiots 90% of the time. Sorry but I could write a book on that place. I have Jessica every day with me who I can't imagine life without. She has a bond with my boys that i cherish. I have Amy almost every night making sure Preston is safe so we can sleep soundly. We just oriented a fantastic new night nurse to fill in the gaps. When Preston doesn't have a night nurse, Tim sleeps in his room and we have that routine licked. Life is GOOD and if it means that Preston has to keep his trach for however long God sees he needs it, then that will be the way its supposed to be. Doesn't mean we aren't totally sick of lugging around his darn suction bag everywhere he goes or sick of paying for flights to Cincinnati and wondering when we can take a break from traveling. The boys are in full blown TURNING TWO mode and they are keeping me on my toes. I am more focused than ever on spending quality time with them each day. Our walks, trips to the park, playing in the back yard, pretending with food in their play kitchen, letting them brush my hair with their comb (lol), trips to the time out corner, telling me NO NO when I ask for them to say sorry, ....the list goes on and I cherish all of these because I know Kindergarden will be here in the blink of an eye and I only have one shot at shaping them and molding them the best I know how before they leave for school. I worry about speech delay with Preston and I try very hard to help him form words with his lips. Jessica is FANTASTIC with helping me recognize when he is saying words to us. I hope and pray the work we put in at home with him will pay off once he in 'catching up' mode after decannulation. Tim is in full coaching mode and I am really enjoying seeing that side of my husband again. I didn't realize how much I missed it until I saw how his cup is full again and he comes home so full of life and excitement after practice. I try hard to thank God every night when I go to bed for the GOOD things he has done for us and not dwell on the negative. By the time I start listing the things I am thankful for, I have fallen asleep. I would say that is a good sign that I am wiped enough to crash and not worried so much that I can't sleep.