Sunday, August 17, 2014

The countdown has begun!

Well friends, the countdown has officially begun! I returned home last night from a super fun trip in KY for mk and reality has sunk in 110%! We leave in 16 days for the scope that we have been waiting almost 3 years to the day for! Is Preston's airway ready to allow him to breathe on his own??? I have been so stressed out and emotional the past 2 weeks regarding this trip. Could not stop crying for several reasons. Then I woke up the other morning and sent a text to 2 girlfriends who I knew would pray for me. One of them reminded (after sharing how scared I was) that "God has not given us a spirit of fear, but of power, and of love and of a sound mind." 2 Tim 1:7 Then I read another devotion from Jesus Calling and had a 'clouds parted' experience. A huge wave of peace came over me and I realized that SPEAKING the words "well he might have to have the surgery but we aren't sure yet" was not what I needed to be verbalizing everytime someone asked what the trip involved or what was going to happen. So instead, we are speaking and believing the surgery is not going to be necessary and we will come home with the trach and capping trials will begin (a weaning process to get the trach out in months to follow). Yes, it sounds nuts that we would prefer him to come home with the trach but this surgery is REALLY REALLY rough and he would be sedated for a week and I want to spare his little body all of that if we can avoid it.  His breathing is amazing us everyday- we hear him taking breaths all on his own via mouth and he wears the speaking valve for periods at a time. The results are not in our hands so I am ready to see what God has in store for us. I am welcoming whatever the results are after the scope on Sept 2nd with OPEN ARMS. What other choice do I have? Continuing to be a bundle of nerves is not what God wants for us. Still doesn't mean I don't have moments of anxiety, fear, worry, sadness etc but I am comforted knowing we have not been left behind thus far so we are in great hands and what is meant to be will happen. I think some of my concerns revolve around being alone on this trip. Tim is ALWAYS with me. That is a huge amount of support that I NEVER take forgranted anymore. The school year and coaching season are both off to a FANTASTIC start and I am so glad Tim will be here for Reid every night. Reid lately has been asking Tim to sing this song at bedtime that Tim sang in church camp growing up (sorry I just outed you Tim) and usually I am the one who Reid prefers at night to sing a song or tickle his back. Well I don't know this specific song (yet :)) so Tim is the one Reid wants when its time to go to sleep. This little transition is confirmation that Tim is suppose to be the one staying home with Reid so he can keep up this routine and comfort him at night. I have no doubt Reid will be longing for his brother and Ms Jess (and maybe me) sooner rather than later. 

I didn't realize until I looked at some old baby albums that we found out on Sept 7th 2012 when the boys were just 10 months old that Preston would have his trach till approx 3 years old. We processed the news and believed Preston would surprise us. Well, its safe to say he has surprised us MANY times but not for the one thing we hoped for. The trach is still in and not years later we are actually thankful. Sounds crazy again but this past year has been filled so many INCREDIBLE things and AMAZING relationships built and NEEDED PERSONAL GROWTH (for me mainly;)) all because he is not trach free.  

So I come to you tonight asking for prayers that our travels are safe on Sept 2nd and no complications arise while flying alone with Preston. We plan on settling in to the Ronald McDonald House that day. I will pack a travel bag and head to the hospital with Preston the next morning and he will be in the O.R. on Sept 3rd for a full scope of his airway. Not sure of the plan after that. I know we will be inpatient for at least 4-6 days (not looking forward to that one bit). The plan will all be based on what they see and how much more room his airway now has due to tonsils and adnoids OUT and everything is healed. 

I hope everyone had a fantastic summer and the school year is off to a wonderful start! Hard to believe our pool days have come to an end. My next update will be once we arrive in Cincy! Stay tuned...........


Friday, August 1, 2014

I have learned Gods delay is not His denial

We have been anxious for our trip to Cincy for P's scope- he is breathing so differently and tolerating the speaking valve great! We were supposed to leave on Tuesday. We received a call last week that Preston's scope and surgery date was cancelled and rescheduled for Sept 3rd. That was a FUN call to receive after I spent 1/2 a day planning hotel reservations, RMH short stay room reservations, airfare arrangements, care for Reid, and the most important piece- Tim was going to be able to come with me. All of that has changed. I forced myself to believe this was for a reason and a lot of things started to fall into place even more perfectly than before. I am still having a hard time getting over the fact that Tim won't be coming with me. I will be flying solo with Mr. P for this BIG trip! Tim insisted taking time off work etc but I think it is VERY important Reid have one of us here for him and Tim starts a new job with a lot of adjustments and he starts soccer season too- it doesn't make sense to leave those 3 pieces of the puzzle behind. The boys are at an age where they really need at least one of US. We have child care arranged for Reid while Tim is at work and coaching. Tim *might* fly out to be with us if we end up having to stay longer than planned. I have no idea how long I will be gone with P. That is really hard for me to type. The unknown is scary. I would be lying if i said I wasn't nervous about going on my own. I have done it before for a follow up appt but not for a planned surgery and a big one at that (this will be 4-6 hrs if he needs the surgery). I won't have a car this time and I am allotted 4 nights at RMH reserved in advance and then its a hotel room after that. There is a wonderful shuttle the hospital provides which should help. Just requires a lot of logistics and planning ahead I am not used to. My parents have a trip they have been planning for a LONG time to see best friends and they were going to cancel it to come with me. I said NO WAY! For the past almost 3 years I feel everyone has stopped their life in some form or fashion for us due to traveling for Preston and I am saying NO MORE unless its an emergency. I know if it came down to desperate measures they would do it for me. I am simply updating everyone to ask for a few specific prayers and THANK YOU for delaying your 'Trache free for P' wearing shirt day till Sept. 3rd. We leave Sept 2nd to fly into Cincy and his scope is Sept 3rd. Dr Rutter will then let me know how his airway looks and admit Preston to the complex airway floor for 4 nights and 5 days. They will take aggressive measures to get him breathing as close to trache free as possible (drill a hole in his trache and downsize it etc). If he cooperates and is ready, they will avoid the surgery and probably send us home with a smaller trache and a capping plan/prescription. That is what we are PRAYING HARD- VERY HARD FOR! If he doesn't seem to tolerate the 'tricks' Dr R is going to do in hopes to avoid this surgery, he is scheduled for a single stage LTR on Sept 10th. 

If you think about it or have a minute, it would mean a lot to us to have you pray specifically for:
- No complications while flying (I will get a pre-board auth which should help a TON) and to sit next to someone understanding and helpful (nobody will ever fill my friend Kristen's shoes in this dept;) 
- My strength and stamina- anyone who knows me well, knows I require ALOT of sleep for health reasons and I anticipate being tired with a 5 day stay inpatient and Preston not wanting me to leave his side for a second. Sleep in the hospital is non existent. 
- Doctors wisdom and guidance for what is best for Preston 
- Peace for Tim (i am pretty sure this will be equally hard for him staying here as it will be me leaving) and an easy transition for Reid (i anticipate a lot of "Where's brother and mommy?" happening- the boys are VERY close at times. 

I will be updating the blog during our visit and asking for more prayers if we need them.  I just can't thank you all enough for the private messages you send me during these periods. Calls and texts are NEVER a bother even though many of you are always afraid to 'bug' me- NOT THE CASE E.V.E.R.!  
I learned in my Mary Kay business years ago that Gods delay is never God's denial- I couldn't believe this to be more true in my personal life when I received the call from the hospital with delaying P's scope/surgery. I started reading Jesus calling for my daily devotion and I wanted to share one of my favorite's that resonated so deep in me. I hope this encourages YOU as it did me. 

KEEP WALKING with Me along the path I have chosen for you. Your desire to live close to Me is a delight to My heart. I could instantly grant you the spiritual riches you desire, but that is not My way for you. The journey is arduous at times, and you are weak. Someday you will dance light-footed on the high peaks; but for now your walk is often plodding and heavy. All i require of you is to take the next step, clinging to My hand for strength and direction. Though the path is difficult and the scenery is dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. Psalm 37:23; Psalm 16:11 

On to the next step we go…………...