Wednesday, September 3, 2014

The results are in!

I am still processing what the dr shared with me today. After all of the time, money, and planning spent to seek care out of state for P, today confirmed every bit has been MORE THAN WORTH IT. Dr Rutter is absolutely the best in my opinion! He is a strategist and always makes sure i understand everything before moving on to the next step. I appreciate that especially when I have to re-explain it to Tim. :) I am not sure if I should be jumping for joy or scared that I am getting our hopes up. Faith and fear can't live in the same place so I need to stop worrying. We received exciting news. I will cut to the chase. We have a plan A and a plan B. Maybe a plan C. I will be here till at least Sept 11th. 

Plan A
Preston has a new trach in- its called a Tracho 3.0 (its smaller so he has more room to let air around and breathe). Its also fenestrated…so it has a hole drilled in it. He is breathing totally different now. I hear air moving from in and out of his mouth a ton. Good news with that! We are settled in his room for the night to let his airway heal after the scope today b/c they removed skin that was around his trach (not granulation tissue……this skin they removed actually helped to open up his airway even more and won't grow back). The pulmonologist said he looks good too! 
*Dr Rutter wants to cap him starting tomorrow for 2 night to see how he tolerates it. If he does great, they will take his trach out the next day for good. We will stay overnight for observation the following 2 nights post decannulation. Then we will stay in town till Sept 10th for another scope to see how his airway looks. Yes, you are reading this correctly. Trach could be out by this weekend.

Plan B
Tomorrow is the true test…..if he does not tolerate the capping well, then Dr Rutter wants to go back to the drawing board with a Plan B. He is keeping him on the operating schedule for Sept 10th incase his capping trial is not a success to go thru with the single stage LTR surgery or see what else may need to be done. 

So, I sit here with another night of waiting! The unknown is KILLING me. I am not thrilled to be here for the next week but I am prepared. It is EXHAUSTING being on my own. I miss Tim terribly.  Preston does not want anything to do with anyone. Going to the bathroom takes convincing. LOL I know he is scared and tonight has not been feeling well. He was doing awesome today until I had to put his gown on in pre-op and big alligator tears streamed down his face. My heart broke- he knew what was coming. Thankfully I don't have to pass him on to a nurse to be put under. I get to go back to the O.R. and sit and hold him while they give him meds to go to sleep. 

I will let you know how the capping goes tomorrow. Not sure what time that will take place. I pray he tolerates it. I can't even fathom going home with a trach free little boy- my mind is racing with all of the possibilities. For Dr Rutter to be willing to decannulate this weekend means his airway looks strong enough and good enough to even THINK this. AMAZING!!!!!! I am sorry if this sounds cheesy but I looked at Preston as he laid on the operating table before they wheeled him in for his scope and can honestly say I found my true hero in my son today. 

New banners up at RMH- i love this place!

Loaded and ready for the hospital 

Playing in the playroom with Mickey ears this morning! 

Brother went to Barnes & Noble with Grandpa Walker for Story time and legos!


Finally feeling better getting his tummy full 
Getting used to his smaller trach has been tiring. He hasn't let me leave his side. 

I think he was hungry…..had a grilled cheese, pb&j sandwich, and pizza! Much better mood after that! 

PS- We have our favorite CMH RT for the night- Dan the Respiratory man LOL This guy cracks me up and he is a huge educator in the respiratory field. He was walking me thru the steps for tomorrows capping trial. He got me excited! Such a positive and uplifting guy. He has seen thousands of kiddos decannulated so he had lots to share with me. We also have our wonderful nurse, Aaron, who we have had before. He is so compassionate and I just can't say enough about the Complex Airway floor here! They are the BEST! Feels like home and they were excited to see us back. Lots of other nurses popped in to say hi and see how Mr P has been doing. We are also back in Room 512 like last summer when we lived here. I feel as if this is all full circle and it feels GREAT! Here's hoping to a SUCCESSFUL day tomorrow! 

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