Sunday, March 23, 2014

Answered prayer!

When we got the news another summer would be spent in Cincinnati I was devastated. I couldn't bare leaving Reid for another 2 months over summer so Tim and I went to the drawing board. We just couldn't come up with a perfect plan. We knew our families and friends would take wonderful care of him but after being gone last summer, I knew how much we would miss and I just couldn't do it again. Plus the boys are finally at an age where they play together and talk to each other and HATE when the other one is gone. We tossed around the idea of us taking turns flying home for a week at a time but the cost would be insane. We considered bringing Reid to Cincy AFTER the single stage LTR surgery but knew that was next to impossible with how different this surgery and recovery would be. Plus we would all be sleeping in the same room- no way that would work. My heart was literally breaking at the thought of missing out on another summer of being home and keeping the boys together. Who wants their 2 1/2 year old little boy stuck in a hospital during summer fun? Not me! He deserves a break! I was hoping they would say he wasn't ready till Fall. I know that sounds so twisted since we are so eager for him to be decannulated. I have longed to be able to take the boys to the pool together for the first time (even though it won't be nearly as much fun for P with being so restricted near water). All the morning walks to the park, going to the zoo, trips to Deanna Rose, and just soaking up the sun in the back yard playing together are things I want to do so badly. I started praying harder than I ever have before. Even several times a day. I was begging Jesus for answers. I fought back tears every time I would talk about this to friends or our family. Everyone has been so HAPPY for us to find out this surgery will mark the end to a V.E.R.Y. long road for our family. And we were happy too but the timing just didn't sit well with me. I know Tim being off all summer is perfect for this situation but when you have a twin son being left behind, it is not a HAPPY time. :( I won't lie- it was really dragging me down in every way. I finally had a talk with myself to release this. We didn't have a date for surgery yet. We were waiting on a call from Dr Rutter's amazing nurse, Janet, to tell us the final plan and timeline after Dr R reviewed EVERY test from his week long stay. We sold our house the very next day and that kept my mind busy! Then I was prepping to leave for St. Charles, MO for an MK conference so I didn't have time to think about this anymore. While in the car on the way to the conference this past Friday, Janet called me. It was the phone call that was the answer to my prayer and I still can't believe what she shared.

She said it turns out that Dr Rutter wants to remove P's tonsils before the LTR surgery. I was shocked. It will give him much more room and he needs the arytenoid cartilage on the right side trimmed back (whatever that means lol). Dr R wants to do both of these procedures together. He won't do it till June to give Preston a bit more time to grow. Should have a date tomorrow or Tuesday! We will be there for about 10 days and Tim and I both take him. We will all fly for this and hope the RMH has room. Otherwise we will be in a hotel again like last summer till room opens us. She said that means the Single Stage LTR surgery won't be till at least 8 weeks post Tonsillectomy so that means we won't be going back to Cincy for the month long stay for surgery till end of August. This means I GET TO BE HOME MOST OF THE SUMMER WITH MY BOYS!!! I have never been so emotional and filled with gratitude. Once again, this journey continues to be a testimony of God's grace and mercy on our life. We have made it thru every obstacle and trusted in Him when things seemed so challenging and hopeless. I will also be able to attend (for the 1st time in 3 years) the FULL conference and awards event this summer in Dallas for work. I look forward to this every year and I can't wait to attend the FULL event! It will fill my cup up before we head to Cincy at the end of Summer. This timeline poses a bit of a hurdle with Tim returning to work and his coaching season is Fall. :( But we will manage and I will plan to be with P the entire time and Tim will be with me for the surgery and I am planning on having my folks with me. Reid will have Tim home with him and I am working on childcare for daytime for the duration of my absence. He will be spoiled rotten and it will be great that Tim will be home every night with him and every weekend! I have a new pep in my step since receiving this news! I can't stop smiling! Looking forward to posting the date of P's Tonsillectomy for June soon! :) Now I am off to plan our summer activities and soak up every minute we are home. I sure have a new level of appreciation for being HOME :)

Thursday, March 13, 2014

Thoughts from P

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The above is Preston's first blog post, here is his new dog.

Wednesday, March 12, 2014

3's a crowd

An ENT, Pulmanolgist, and GI doctor walk into an OR....that's how the joke starts. Preston got a 3 way scope today from three different docs. The GI left an impedance probe to measure any reflux he has, but did not note anything concerning in his scope of the GI tract. The Pulmanolgist noted the bronchial floppiness, and will stay on the case. He did a saline wash of the lungs and sucked out that part. They will culture it to be sure nothing out of the ordinary grows. He said that he moves air well enough that it should not be a concern but will monitor the case. Dr. Rutter, the ENT, noted that the airway shows growth and still needs to grow. He said the lower graft is the one causing more problems and the upper one looks great. This is opposite of what we originally thought. He is not surprised that he can move air around the trache but does not tolerate the passe muir valve. It has a lot of scar tissue to move around. 

The plan then is to return to cincy this summer for another scope. At that time the ENT will determine if he is a candidate for a single stage LTR, the same surgery from last summer, and remove the trache at the same time. The scope happens and then the surgery is 5-7 days later if Dr. Rutter likes what he sees. We would be here for another 4-6 weeks after the LTR, with P it is more likely 6. He is full of surprises. He would be in the ICU for a few days while he is intabated. He is scoped then servals times every 1-2 weeks post decannulation to be sure he looks good. Then that would be all she wrote. 



An ENT, Pulmanolgist, and GI doctor walk into an OR....that's how the joke starts. Preston got a 3 way scope today from three different docs. The GI left an impedance probe to measure any reflux he has, but did not note anything concerning in his scope of the GI tract. The Pulmanolgist noted the bronchial floppiness, and will stay on the case. He did a saline wash of the lungs and sucked out that part. They will culture it to be sure nothing out of the ordinary grows. He said that he moves air well enough that it should not be a concern but will monitor the case. Dr. Rutter, the ENT, noted that the airway shows growth and still needs to grow. He said the lower graft is the one causing more problems and the upper one looks great. This is opposite of what we originally thought. He is not surprised that he can move air around the trache but does not tolerate the passe muir valve. It has a lot of scar tissue to move around. 

The plan then is to return to cincy this summer for another scope. At that time the ENT will determine if he is a candidate for a single stage LTR, the same surgery from last summer, and remove the trache at the same time. The scope happens and then the surgery is 5-7 days later if Dr. Rutter likes what he sees. We would be here for another 4-6 weeks after the LTR, with P it is more likely 6. He is full of surprises. He would be in the ICU for a few days while he is intabated. He is scoped then servals times every 1-2 weeks post decannulation to be sure he looks good. Then that would be all she wrote. 
The weather here is crappy too, just like home. We have a FIES swallow study tomorrow and then home tomorrow. Can't wait to see Lorna and Reid, who is raising some hell transitioning to a toddler bed. Good thing they both are not transitioning. I have spring break next week which will be nice to rest and recoup. I will be able to knock some other stuff around the new house and hopefully sell an old one. He loves his Red Baron airplane too.