Friday, June 17, 2016

Dusting off the keyboard for an unexpected update and request for prayers.

Well, life certainly has a way of twisting and turning just when we least expect it. I thought about wrapping up our blog a few months ago and brushed it off. I never thought in a million years I would be back on it with a medical update and asking for more prayers. I will cut to the chase. 

Since Preston's 1 year follow up scope last May (the last update I made to this blog) his health has been OUTSTANDING! He was cough free for almost 8 months! He had a hospital free winter which was our goal and Dr Lewis (his A.M.A.Z.I.N.G. pediatrician) did everything to see that happen! Kept Preston on his radar with any illness that seemed to creep up. Then February came and the cough returned.

Preston has been battling this cough/gagging/throat clearing issue since then and after many months of 'treating' it in every way imaginable while it got better and then worse again (swallow study, GI dr etc), Preston's pediatrician thought we should get aggressive to get to the bottom of it even more and we agreed! We lined up a scope with P's local ENT and checking in to KU the night prior for fluids and meet with GI again and feeding team. 

After the scope yesterday, we knew something was up once we saw the Dr for post op consult. He shared with us that P's airway is so much more complex than anticipated (it is malformed if you will) and he didn't have the ability to scope and suction given the complexity of P's airway. It would have caused more harm than good and swelling has always been P's issue and if his airways swells shut, there is no other option for safety to his airway other than a trach again. 

Then the CRAZIEST THING EVER happened. We met Dr Langner in post op (who is the attending PICU dr) and he started talking with us about the findings in the O.R. and shared with us that he remembers us from Cincy and took care of P on the PICU floor and even remembered his room # from 3 years ago when he was a Fellow. Say what? He knows EVERYTHING there is to know about what Preston has been thru and how complex his airway truly proves to be. He is the reason why transport to Cincy was going to happen. He spent 3 hours arranging everything and talking to P's Dr and the other ENT's to ensure someone could get him in the O.R. upon arrival. Talk about God SHOWING UP when Tim and I were not expecting all of this to happen. 

We have been in the PICU at KU and after an unsuccessful scope (that was planned a month ago) in the O.R. yesterday, we were preparing for Cincinnati Children's transport team to pick up P tomorrow morning via private jet so he can be seen and scoped by his ENT/surgeon who knows his airway best (after all, he rebuilt the darn thing himself) get to the root of the issue that caused us to plan the scope after all.  Only 1 parent could go so that was weighing on us heavily. Well, things went from good to puzzling to bad to disappointing real fast. Preston had a viral panel done yesterday and it tested positive. Cincy denied him due to the complications that could arise (and a possible wasted trip) from having a virus. His coughing is out of control. Transport was cancelled and P's ENT is requesting to see him in 4-6 weeks. Preston is on heavy steroids and meds to help him breath, control his coughing and make everything manageable from home. The roller coaster of emotions the past few days has been more than we anticipated to say the least. 

During the past 4 years of our family being divided at times and the boys being separated, I was rest assured by the ages of the boys. I knew they were young enough to not remember any of it and being apart didn't weigh heavily on either of them. Sadly, that is no longer the case. This has been a very different and difficult experience for all of us. Preston is SO brave but he was crying for Reid and asking a million ?'s b/c he was scared. My heart breaks for him. He didnt ask for any of this. He is so obliging for his nurses and he melts their heart. Saying please and thank you when they tend to him. It also helps that we literally know 1/2 of the nurses on Peds and PICU which is so great and a nice 'perk.' They are the BEST!!! I can handle the chaos, uncertainty and life in the hospital just fine. Its second nature to me. I struggle with knowing Preston may have memories of more hospital visits, being away from Reid and other random things that will be stored in his memory bank. I worry about his airway still. I want his cough fixed and I welcome a season of 'sounding perfect' like I heard from Dr Lewis last winter. Looks like trips to Cincinnati are in our future for awhile for scopes. I am holding on to God's promises and faithfulness through our continued journey of being TRACH FREE FOR P. 

Here are some pics from our stay. He was all about attention at first. As time marched on he was not too hip about being there. 


Ready for his grill cheese and chocolate milk to arrive! 

Movie time and settling in

Snuggles with Daddy- This man is the BEST father! 

Asked to go home and see his brother 

snuggling with Leo and Bear Blankie (from his Mama and Papa Tollie)

The evening after being in the O.R.- he was feeling like crud

Aunt Kim brought dinner and a puzzle Reid made for him that day at Kaleidascope

Smiles after a good night sleep

Finally got to get a bath, dressed, and go to play room and found a paw patrol game.