Thursday, June 27, 2013

LTR is behind us!

WOW! What a day yesterday was for our little guy. He is one tough cookie! We were wiped by 10pm when we finally got settled in his room. Every nurse and RT that we have met and is caring for Preston has been wonderful. Very compassionate and helpful! Thankfully a 'parent room' was available (it has a twin bed to spend the night in since there is only a pull out chair in his room). It was nice that Tim and I could both stay at the hospital last night and hopefully tonight too! Tim insisted I stay in the parent room to get a good night sleep and unfortunately, Preston had a bit of a rough night so looks like Tim will be taking a nap or 2 today! We were grateful they provided us a private room yesterday in the waiting area to spend some quiet time watching movies, updating fb, and getting a nap in while we waited. Just glad yesterday's surgery is behind us and the healing begins!

Total surgery was 7 1/2 hours. Now what anyone anticipated but they ran across some unexpected hurdles that took some time to fix. It's all good in the end! Mr. Preston just can't seem to do anything easily :) :) Dr Rutter placed the stint in his airway and was able to do everything that he wanted to do. Due to Preston's trach being placed emergently, Dr Rutter had to basically retrach him above his current stoma sight. We will be inpatient at least 5 days total and then released. We won't be back for the stint removal till the end of July. Dr Rutter wants to keep the stint in longer for several reasons. So that means we will be hanging out in Cincinnati for 4 weeks and hopefully most of that time will be at the Ronald McDonald House instead of the Hampton Inn. I call today to see how far up we are on the waiting list. Once he goes in for the stint removal around the 25th of July, he will go back to the O.R. a week later for a bronch (scope of his airway) to see how well he is healing and hopefully get the green light to go home! Tim and I will drive back home with him the first weekend in August and Tim starts school the following week. This was not the news we were hoping for but we packed with a 4-6 week stay in mind. Being away from Reid this long will be rough. Glad he will be coming out with my in-laws in a few weeks. The expense of being away this long is overwhelming but we will make it work. We will return to Cincinnati a month later for a trach downsize, cap trial and 2 night stay. We will also work on using the speaking valve. Then we will go home and work on doing the cap day and night. Then we will return another month later for trach removal with a 2 night stay. So we are looking at him being trach free by October/November. Then we will return to Cincinnati for an exam to see how his stoma is looking and if it needs some help closing. Just a timeline for those of you wondering what our next steps will be. 

For now, he is in a lot of pain today and had a slight fever last night so we are keeping on top of the pain meds. He is really juicy....lots of secretions which is normal. Just plan on spending the day by his bed singing to him and rubbing his head. Tim is already taking a nap. I haven't held Preston yet. His rib cage is super sore. :( Prayers for no pain and lots of rest would be appreciated. My parents can't get here soon enough and knowing Reid is being SUPER spoiled is peace of mind we needed more than we realized. Every time I call and touch base I hear him giggling or talking in the background and that makes me feel GREAT! "Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid." John 14:27

No comments:

Post a Comment