Tuesday, May 28, 2013

Countdown is on!

We have started packing for our trip! How do you pack for 4-6 weeks? I am doing my best! Our bedroom is nothing but piles to make sure we don't leave anything behind. I have 2 big boxes of Preston's supplies! My folks can always bring stuff out for us if we leave anything behind as they will be visiting 1 week post surgery to be with us! These next 4 weeks are going to FLY and I want to soak up the sun with the boys as much as possible while I am home. I have a few dates in June with just Reid planned. I am REALLY looking forward to them. Tim and I are going to take him on a date the weekend before we leave so we can spend time with just him. I know he has no idea what is about to happen and he won't ever remember this. It is going to be much harder on US than it will HIM. Thank goodness....that is how I want it to be! I am trying to wrap my brain around the fact that Preston is having his LTR surgery in 4 short weeks. It seems surreal. I am gathering up my favorite bible versus to lean on. I am praying for so many things! Mostly for Preston's health and well being and a successful new airway. I want this so badly for him. I am trying not to worry about him and I want to trust in God instead of letting my nerves take over. He is so precious to me. I hold many raw emotions from the day I realized what his trach would mean for him. I let it define him in the beginning when I was overwhelmed by our circumstances and now I know it has nothing to do with HIM. It is just the way he breathes.....not for much longer God willing! I would give ANYTHING to give him a FUN summer filled with trips to the pool, our morning runs that he LOVES, and lots of time at the park and all of this being done with his best buddy, Reid! That is obviously not the plan so I am embracing the summer we have been given for him but I would be lying if i said it wasn't eating me alive at times. I am graciously asking for your prayers! In the midst of these crazy emotions, I have such a sense of peace about this trip too!

Tim is wrapping up the school year and will be done on Thursday! Hallelujah! I can't wait to have him home! I need his fun spirit around the house and his support the most! He is so positive and the boys love their wrestling buddy! And then around August 1st I am ready to kill him and wonder when school will be starting! LOL :) I am sure he feels the same way!

We have spent the last 2 weeks finalizing all of our travel plans and arranging a 'normal' situation for Reid as much as possible. We leave on June 24th and Tim is driving to Louisville's airport to meet Preston and me. I will be flying with P and Jessica (our day nurse) and once we arrive in Louisville, Jessica will fly back home and then the 3 of us will drive the rest of the trip together to Cincinnati and arrive at our hotel. We have 1 day to get settled, unpacked, and repacked for our hospital stay. Then on June 26th its surgery day for P! Tim and I will be taking turns staying with P while he is in the hospital post surgery and one of us will be staying at the hotel until we get into RMH. I sure hope we get to the top of the waiting list FAST! The hotel is 20 miles from the hospital and RMH is across the street. My folks plan to come visit around July 1st. My in-laws plan to come visit WITH Reid a week or 2 later. All of this could change of course depending on P and his recovery but its a tentative plan for now.

Many friends and family have asked about Preston's surgery and what specifically will be happening. I wanted to just explain so everyone knows. This is the best I can explain it:
His surgery will be anywhere from 5-7 hours (I can't even handle that thought so I am blocking that out!). A horizontal incision will be made in his neck above his trach and that is where they will get the damaged portion of his airway.  Dr Rutter will determine what size cartilage grafts will be needed after he opens his windpipe.  Once he determines this, he will harvest the grafts from Preston's right ribs. It will take about an hour for the anterior graft to be placed and 2 hours for the posterior graft to be placed. A silicone stint will be placed in the airway and secured with sutures in the middle of these 2 procedures. From there P will be sutured up, taken to the ICU, and will be sedated for awhile. For the following 1-2 weeks he will be fed by G tube. He will have a nutritionist and feeding team to work with him take food by mouth once he starts to heal. 1 week post-op Preston will be taken again to the OR and the silicone stint will be removed through his mouth and the transplanted tissues will be examined to ensure they are healing and growing and the airway does not collapse on itself once the stint is removed.
Our hope is he will be released with the plan to have a bronch 1-2 weeks later to make sure there are no signs of collapse. We will take everything one day at a time and hang out in Cincinnati until we are given the 'go' to head home for a few months before we return again.  I will be updating our blog as much as time allows!
I hope everyone is having a great start to SUMMER and we covet your prayers, support, and love!

Sunday, May 12, 2013

Big decisions with a hard pill to swallow

It has been a whirl wind since we got home from Cincinnati. We have spent a lot of time discussing the best plan for this upcoming surgery in terms of travel plans, investigating lodging options, booking flights, discussing the best option for Reid, and how to keep P as healthy as possible post surgery. I had no idea how much time this would all take. You know you have spent A LOT of time on the phone when you have to charge your cell twice in one day by 5pm. Thankful most of it is planned! Preston currently has a bad cold (i am sure he caught something on the plane or while at the hospital this past week) and the idea of flying back and forth each week for 4-6 weeks post surgery for procedures that will need to be done is not in his best interest to keep him heathly. Plus it will cost us a fortune. We also have no idea when and how often we will need to come back. The Ronald McDonald House has a waiting list unfortunately so we have arranged temporary lodging till we get in. I have a new found appreciation for hospital social workers and the resources they provide. The woman helping us at CCH is WONDERFUL! Hopefully it won't take long to get in to RMHouse but once we leave, we have to go back on a waiting list. Not good!:( As much as we don't want to do this, we have officially decided to stay in Cincinnati for 4-6weeks (could be longer but not sure till we get there). We plan to arrive a day before the surgery and stay till we are officially released and Preston won't need to go back to the O.R. for another bronch for several months. This surgery will be 5 hours, risky and complicated and we don't want to expose him to anything that could cause his airway to collapse or hinder the healing process in anyway. We have also made the decision to keep Reid here with our family members and nanny. This part of the journey is a really hard pill for me to swallow. The thought of being away from home that long is bad enough but then to be away from Reid that long seems unbearable. I know it is for the best to get Preston trach free and finally have a non-damaged airway but it still stinks. The boys are going to miss each other like crazy too! We met a family from Manhattan while in Cincinnati and their twins were in the same boat as ours......she said as soon as their family came to visit with the twin brother who was left at home, the disposition totally changed in their twin who had surgery. She said it was the best decision they made having him visit! That is my hope for the boys! My in-laws are going to bring Reid out for a visit hopefully! Thank goodness for skype too! My parents have already picked their dates to come visit us which will be wonderful! Thank God for our family and circle of support we have in our dear friends! I have already been asked if we will have an address to send us care packages. Really? Talk about feeling humbled. We are blessed! When I think back to a year ago at this time, I can't believe the boys were only 6 months old and Preston was so frail. We were dealing with eating issues and using his g-tube. Just to get out of the house was so complicated. Today we enjoyed a gorgeous walk before heading out to brunch with my family for Mother's Day and then played all afternoon outside. It would have been such a ray of hope a year ago to know in just 1 short year he would be having airway surgery for decannulation and life finally felt 'normal' for us! We were thinking it would be 3 years before all of this. He eats like a horse and we can't wait to pull the g-tube after surgery is all over. He is our easier child by far in so many ways. Funny how things work out! I have so much to be thankful for this Mother's Day! I am cherishing every single second at HOME knowing we will be gone most of the summer. I am cherishing every single second with Reid.....even the stubborn and ornery times. I will miss them! And I am really looking forward to the alone time with Preston (and Tim) once we get settled in our home away from home since I will always feel like I need to make up for so much missed time in the beginning months with him. We are living in the moment for sure!!!

Wednesday, May 8, 2013

Cincinnati here we come!!!!

We have a date! JUNE 26th!!!!!!! 7 weeks on the dot till Preston has his surgery! Ahhhhh! What a great feeling! :) I want to do something fun for a count down! IDEAS???? Would love to hear some! :) Thanks for sharing in this great news! Now we get to book flights and make arrangements for Reid and let this all sink in!

Tuesday, May 7, 2013

I second 2nd opinions!

We are home sweet home and I am getting ready to hit the pillow.....bed has never looked so good! I had no internet to be able to send this post I wrote earlier today. So thrilled to share our news! :)

I am sitting at RM House while Preston naps trying to rush and give an update. Many dear friends and family have been following us along this journey and I can't wait to share this news! I have to hurry (more details later) b/c we fly home tonight. First off, I could write a whole post on how amazing this place is.....i feel humbled x1000 after seeing what other parents are going thru that makes our situation seem like nothing. Once again, great perspective I will always be glad to have!
We learned today that getting a second opinion (no matter how much time, money, hassle, stress, etc it takes) is WORTH IT 110%!!! Dr Rutter confirmed that Preston CAN and WILL have surgery early this summer to begin the process of decannulation (fancy word for getting his trach out). HOORAY! He is plenty big for it (24lbs to be exact). Dr Smith gave us an indication this was a possibility but wanted Dr Rutter to confirm and also give his recommendation on WHICH surgery would be the most successful given Preston's trach site damage. It was the type of surgery that was the big question. We have an answer! He will indeed have the LTR surgery and it requires a posterior and anterior rib graft for this. We have decided to have this done in Cincinnati under Dr Rutter's care. We were very impressed with him. Once we got there, we just knew it was where we needed to be. Love that feeling! The best news is he won't have to go on bypass and have his chest cracked open for this type of surgery. The other option required this and I was not feeling good about it. HOORAY! He will not get the trach out immediately after surgery but the goal is 6weeks- 3months after the stint is removed following surgery. I don't have time to go into all of the details about what this type of surgery requires but its the one we were hoping would be the option suitable for him. We will also be working on the speaking valve at home and capping him with a smaller sized trach following surgery. We also prayed for this to happen this summer. Works out great with Tim home for 3 months. This surgery will require several trips back and forth to Cincinnati weeks following surgery so we will be traveling fools in the coming weeks and if it means decannulation, we will live at the airport! :) :) So its safe to say this trip was a total success. Tim and I soak up the time spent with just Preston which are few and far between. We can't wait to get back home to Reid (who is going to need some re-training from the spoiling he is getting :)). God is good and we are so incredibly blessed to have the most supportive friends and family on the planet standing by our side during this roller coaster of a journey :) Thank YOU! I should have a date tomorrow for surgery so that will be the next piece of GREAT news!