Friday, September 12, 2014

Home, Happy, and Healthy

We are HOME and settled already for the most part. The flight home was a bit of a mess but that is a thing of the past. Let's just say due to weather and a flight delay, I ran a 5K with a stroller thru Ohare to make my connecting flight at 10pm at night. FUN TIME! Tim has been nominated to fly Preston out for his follow up scope in approx 6 weeks. I am D.O.N.E. with traveling for awhile. :)

My mom brought Reid over to the house yesterday to see Preston and get settled back home. Well, I am sure if i had recorded it, it wouldn't have played out the way it did. Reid took one look at Preston as soon as he got out of his carseat in the driveway and said "Hi Brudder!" Preston in his scratchy whispery voice said "Hiiiiiiiii" with big smiles and Reid yelped and said "I HEAR HIM MOMMY! HE TALKED TO ME!" and then he looked at Preston and said "I MISSED YOU BRUDDER." My mom, Jess, and I all started to cry. Reid has since been telling EVERYONE who comes over or while we are out running errands, "Brudder's trach is out and he talks to me now!"  My heart is forever 1/2 melted away! ;) 

Preston's closet and our whole house has been stripped of supplies (they are packaged up and ready to donate to my good friend Kelley for her little girl Kaydence). We are keeping the pulosx and nebulizer since we own them. Will be good to have for the future. My stroller, car, and his nursery are ambu bag FREE. I have never been happier to clean and weed out drawers, shelves, and closets! 

Today was the first time in 2 1/2 years I went to a gym and took the boys to the kids play room while I did a pilates class. I can't even describe the feeling. Our drop off at Preschool on Oct 6th is next on the list!

Tonight is our last night shift for Preston and Amy is coming at 5pm to spend the whole evening with P while we take Reid out for pizza to spend alone time with him. It will be bittersweet. He still gets nursing care for the next 10 days and we plan to pull the g-tube out once he has his follow up scope. 

LIFE IS GOOD! We are ready to find a new routine with transitioning Jessica from day nurse to nanny, preschool 4 days a week in the a.m. and diving head first into speech for Preston once school starts. They get to be part of the Blue Valley preschool program (Reid will be  peer model) where an OT, PT, and speech therapist will be in their classroom DAILY so I pray Preston's speech starts exploding! Its already off to a great start. He has a VERY quiet voice and its a bit raspy but that will improve a little. I will take any noise - he LOVES hearing himself! 

THANK YOU AGAIN to all of our family and friends who have loved us unconditionally, supported every decision we had to make, and celebrated this new start with us! Can't wait for our big party coming up! We are so fortunate! 




Tuesday, September 9, 2014

1 day till we go home!

Just a quick update. We are discharged and hanging out at the Hampton Inn in KY. Lots of walking to kill time and watching trains go by and off to the Zoo today with friends. I just love that one of my mk consultants lives an hour and 1/2 from here (she has a 3 year old and 1 year old) so she offered to come here and pick us up and I was able to get us zoo passes! SO FUN! Thank you Nancy for making our Tuesday fun filled. I appreciate you coming here for us! 

Tomorrow we pack up, head to the hospital for one last scope at 11am of P's airway in O.R. We fly home tomorrow night at 8pm. We have to come back in about 6 weeks for a follow up scope. I am so EAGER to get home. I miss Reid terribly and everyone is dying to see and HEAR Preston. It will be so fun this weekend being home with more noise in our household and watch the boys interact. 

Prayers for a successful scope tomorrow and safe flight home would be wonderful! In some crazy way, I feel like we are starting a new life. It feels so incredibly awesome. I had yet to shed a tear but yesterday when I left for a walk with Preston and didn't have to worry about a suction bag and took in the gorgeous view of the river, it hit me like a ton of bricks. This is it. We are DONE. Its OVER. Our prayers have been answered. Makes me emotional typing this. I get to fly home with my healthy and happy little boy who deserves this fresh start more than anyone I know. THANK YOU JESUS!

Saturday, September 6, 2014

Trach FREE for P


I have so much I could say but I am ready to relax after today's event and I want to spend my evening with Tim before he leaves tomorrow :( Preston is doing fantastic. Today was AMAZING! We are living a testimony of God's faithfulness thru the ups and downs of life. We never lost sight of His plan for our son and family. I have 2 healthy, happy, smart, ornery, energetic, loving, tender boys and I can't ask for more than that. When I think how far Preston has come from a fragile newly trached 8 week old to today, I am humbled. I feel honored that I got to experience such a highly rewarding parenting and life experience with him. Tim and I look forward to our 'new normal' in the next step on our journey of being Trach FREE for P! God is GOOD! 


Friday, September 5, 2014

Tomorrow is D day!

Preston rocked his capping trial! He was off monitors all day since his breathing has been perfect. We called Tim on his way to work this morning Preston said Hi Dada and a few other whispers of 'words.' This is all so exciting! He is loving hearing himself giggle. We have the orders and decannulation will be happening tomorrow! Its finally official. Tim is in route on the plane as I type this. I still can't believe this is happening. We are becoming a bit bored after being in the same room for 2 straight days. It will be awesome to celebrate tomorrow and have Tim here all day tomorrow and Sunday. He has to get an IV tonight (i am dreading this b/c he is a hard stick) but must have for it decannulation. They need immediate access incase of emergency.

We had fun today making videos of Preston saying HI and being able to hear himself breathe. He is pretty proud of himself. We also got to take a little field trip to the gift shop and walk a little bit. My heart is SO FULL tonight! Reid had a day of fun with my sister and Ava while Will was at school. He is obsessed with their sweet kitty, Willis, and had fun getting to do drop off at school this morning. My in-laws have him for the weekend and I am just so thankful he is a secure little boy who hasn't once asked for me or cried about me being gone. He is being spoiled! :) I certainly wouldn't be crying for me if I was getting all of the attention and goodies he is receiving!!

We plan to take video tomorrow of his decannulation so he can watch it when he is older. I pray it is uneventful and he is stress free and doesn't panic. We have prayed and DREAMED of this day for years and Tim and i can't even believe this trip to Cincinnati marks the end of a LONG journey! It took us by total surprise! SO many wonderful things have come from Preston being trached and it also brought a lot of heart ache, stress, questioning, and anger at times. I wouldn't trade any of it for the GOOD that came from it.

The highlight will be posting pics of my little man's NAKED NECK and a video of his decannulation!
Thank you thank you thank you to each and everyone of you for sticking by our side! The t-shirt pictures have been my favorite part of the end to this journey- SO FUN seeing everyone wear them to support us. Preston will be sporting his tomorrow for obvious reasons! ;-)

Thursday, September 4, 2014

A glimpse of reality!

Today has been the best day and he hasn't even been decannulated yet! 

This prayer from Reid the other day was heard LOUD AND CLEAR! Now when Reid says, "Talk to me brudder, please talk to me!" (broke my heart the first time I heard him say that). As of today, there will finally be that chance for Preston to speak. Praise God! 



Where do I start- Capping has been 110% successful. Dr just rounded on him and plans to take out the trach are set for Saturday.  They even throw a party on the floor for him. I love this place! The nurses are just as excited as I am. Tim flies out tomorrow night (i am beyond excited about this). This will also help transition us from RMH to hotel this weekend. My in-laws and sister in-law have Reid all weekend. I have to admit that I haven't had a moment to miss him much with all of the hustle and bustle here with things moving so fast for Preston. I can't wait to see Reid's reaction to Preston when he sees his trach is gone. They play a game called 'Trach change' and they both lay on the floor and we pretend to change P's trach (like we normally do) and then Reid lays down and we tickle his neck and he loves it. I never wanted Reid to feel left out with all of P's trach cares so we made him apart of everything from day one and now they have made a game out of it. 

My folks get back in town next week to keep Reid till I get home. I am thankful for technology so I could face time with Tim and have him be apart of the capping this morning. Preston is sating 98/99 and has no strider, no retracting, no laboring of any sort. We are on our way to TRACH FREE FOR P. My shirt has a whole new meaning to me :)

Here is a glimpse of our new normal. I got to hear him laugh for the first time- a REAL out loud laugh today. First sneeze was funny and first cry was shocking. It just dawned on me today that I will fly home next week with my little man being apart of the NAKED NECK CLUB. He will sport his adorable tan line on his neck. No more strangers staring at his neck or asking me about it (you would be amazed at the balls some people have)…..especially while traveling. The suction bag celebration is next- that thing is going somewhere FAR FAR AWAY! LOL We can remove the ambu bags from our strollers and cars and his room. Bath time will be SO MUCH FUN - my boys don't even realize you can fill the tub past their little hips and actually splash! Swimming next summer will be in full effect. The list goes on and on. 

The hardest part will be saying bye to our nurses. That will be a post for another day. I don't want to rain on such a wonderful parade today. Our nurses have become family to us. I may need to increase my zoloft for that transition LOL LOL The boys start preschool in October and I DREAMED of them going to school with Preston trach free. No more Jessica going with him everywhere. I will drop them off and they will be on their own and not a worry in the world about his health/emergency situation will be on the fore front of my mind. Church is at the top of our list and we already have one picked out to try with dear friends who also have twins. 


Here is what we did today! 

Our RT is awesome and put this fun play mat on the floor for him (he has been on it ALL day) because he has to stay on monitors 24/7 to ensure his sats don't drop while being capped. He passed out this morning after a busy morning of learning to breath 100% on his own. 

Eating a grilled cheese (he has had 4 of these since arriving) and sporting his fun fireman hat from Kelley and Kaydence.  We had a FUN visit from my dear friend Kelley (who i met last summer at RMH)- they came to Cincy for a dr appt for Kaydence and brought me a sub sandwich. REAL FOOD was heaven and the company was even better! I also had the thrill of giving her all of our trach supplies they can use! No more suction caths, hme's, or trach ties. I have 3 huge boxes for her at home that I plan to give her too! FEELS SO GOOD! 

fun mail we got from a dear high school friend (who is also a mom to multiples)

Eating like a king before we capped him

Up close pic of him napping- was zonked by 11am

Playing tonight before we watch Cars at bedtime 


Wish us luck on capping day #2 tomorrow. Prayers for Tim's safe travels and no hiccups would mean a lot to us! May the day we have awaited since Preston was 8 weeks old get here quickly. 

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!



Recovery


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! 

Tuesday, September 2, 2014

We are here…..change of plans already!


 Travel today was great! Its always exhausting to get up at 4am to leave by 5am but no delays and no lost luggage- we are good to go! Preston did great flying- slept on 1st leg of our trip and watched Frozen on the 2nd leg and then slept the entire run I was able to get in once we arrived at RMH. We have one of the new 'short stay' rooms and its really nice. I am sitting here while Preston is still sound asleep in the stroller and i was able to shower and get in sweats before we have dinner and play here all evening. I even found a Starbucks at the airport to complete our day of travel. Great day!!! Thank you to my friends who sent me messages with well wishes. The video of Reid praying for his 'brudder' was the highlight of my day! 

We have a change of plans! I got a call from 'same day surgery' while on my walk and Preston got moved up on the schedule. His new O.R. time is 1:15pm instead of 4pm. HIP HIP HOORAY! We check in at 11:15am so this means he won't be going ALL day without food! I am one happy mama. Always another day to visit the zoo. That was just my plan to distract him. We will go for a run together in the morning during breakfast time instead and then watch a movie before heading to the hospital. This also means we won't have to be checking into our room on the complex airway floor late in the evening. I only have to wait on pins and needles for 1/2 a day to hear what new Dr Rutter has for us  instead of the entire day. I AM SMILING EAR TO EAR!!!!

Here are the pics from our day. I will be updating the blog tomorrow night with the plan of action for Mr. P! 


Catching our connecting flight out of Charlotte, NC
A boy and his plane 
This child thinks he is Buzz Lightyear. When we got ready to land during both flights, he put his fists out and signed Buzz the whole time. I thought he was going to give himself a heart attack he was so intense about it. LOL 
Changed clothes (i am a freak about germs and airports) and off we went running….he was out in 2 minutes. 

GAME FACE ready!


 No matter the news tomorrow, i have one HAPPY boy and thats all that matters! :)





Monday, September 1, 2014

Cincy bound tomorrow……let's do this!

I am all packed, I have my head in the game finally (i have been in a bit of denial….okay, a lot of denial but thats over) and Mr. P is ready to rock n roll on another plane ride tomorrow! He is ready and HEALTHY (thanks to breathing treatments around the clock and kicking whatever started to flair him up on Thursday). Of course, he has no idea what is around the corner for him. I hate that part. Reid has been a hand full lately. Lots of time outs and asking me 'whats wrong mommy?'- I have a feeling he senses what is about to happen. Not on a large scale but on a small scale I think he senses a change coming. Thankfully, I have a FUN week lined up for him and having daddy home at night after practice or games will be wonderful. 

Tim is going to gain about 10lbs while I am gone with all of the wonderful meals delivered to him this weekend from friends and family. This does not help make me look like a great wife in the meal dept. ;) All joking aside, we are BEYOND thankful for this support and help! I have been consumed with trying to pack for an unknown period of time. How does that work, you ask? Good question. I am packed for a 10 day stay. If i am there longer b/c we find out the single stage surgery is a must, then Tim will drive our van out here loaded to the gild for the surgery and fly home once we are re-settled post surgery. That is our plan B. We went on a date night Saturday to dig ourselves out of denial a little bit and come up with a plan B. We don't want to be blindsided. My mom will fly out to be with me the rest of our stay if I am in Cincy awhile. Thank GOD for my wonderful mom! I would be lost without my folks! 

I feel like a broken record when people ask what this trip is for and I am hate boring people with details but it feels good to have friends/family care and ask. I can barely keep up with the details so i can't imagine everyone else remembering each trip and the course of action that will take place. I apologize if i am repeating myself again **Skip if you are bored LOL** Preston and I will arrive in Cincy tomorrow around 1pm. We will check into the RMH house and get settled. I plan to take him on a long walk by the hospital and a park to get fresh air. Not sure how nap time will work out tomorrow so this can be his 'chill time' and then we will eat dinner at RMH. I am hoping to see some of our friends who are currently there till the end of the year (yes, the end of the year- we are SO grateful to be able to come back home after each trip). His O.R. time isn't till 4pm on Wednesday (poor guy has to be NPO all day :( and we need to arrive by 2pm at the hospital at pre-op. So we are heading to the ZOO all morning. Its right down the street from RMHouse and will be a great distraction from not being able to eat all day. Once we get to the hospital on Wednesday, Preston will be inpatient the ENTIRE time we are there. Not looking forward to that. So as much fresh air that we can get the better! 

Preston's scope on Wednesday will tell us the next plan of action. He will either be a guinea pig for the following few days with trying to downsize his trach and drill a hole in (called a fenestrated trach) and keep him hooked up to monitors to see how his O2 sats are and if all goes well, we will go home with orders for capping trials and wean him off the use of his trach for the following 4-5 months. Then once he is capped daily and nightly, he will get it out. OR he will be having the single stage LTR on Sept 10th and Dr Rutter will take rib cartilage to build a new graft to repair his airway 100%, trach comes out for good, intubation tube stays in for a week (he will be sedated for that period of time as to not move or jerk the tube in any way causing the graft to be displaced). Then we have to stay put in Cincy for 4-6 weeks with a weekly scope to see how he is healing. Both scenarios have major perks and drawbacks. I can't decide which one is what I should be praying for. So my prayer has been whatever is BEST for PRESTON, least amount of pain, and most successful long-term future for him and his airway! For the first time ever, I can visualize what my little man's neck is going to look like naked. When that will be is up to his little body and Gods plan! 

I will be updating the blog nightly (the best therapy ever and to keep everyone informed). Our prayer warrior friends and family have kept me feeling at peace over this trip and the outcome. Leaving Reid behind and missing Tim nightly is what tugs at my heart the most. I just HATE leaving my Reidy Roo for more than a few nights here and there. I will miss being with Jessica each day and taking the boys to the park in the morning or going to story time together. Those things will be waiting for us when we get home…….trach free or a plan to be trach free SOON! 

Thank you for all of your well wishes, prayers, and word of encouragement! They mean so much to us!