Wednesday, June 11, 2014

Fly home? Not sure.....

I am keeping this short and sweet. Wish it was filled with better news. Preston is not eating and aspirating on everything he tries to eat. We are taking him into clinic tomorrow. Its been a LOOOOOOONG week. He is getting all nutrition via g-tube. He was doing great and now not so good. We are tired and the suctioning is constant still. The plan is to fly home at 7am on Friday. God I hope we can get home and the dr doesn't want us to stay. Prayers are appreciated. To say we are ITCHING to get home, sleep in our own bed, and love on our other little man is an understatement. I called to talk to him today and he said, "Mommy come home!" I am working on it buddy, trust me! Thanks to my sweet friends for texting and messaging me loving and supportive messages.

Tuesday, June 10, 2014

T-shirt order going in Thursday at 12noon

T-shirts for P are being ordered Thursday at 12noon. I can't wait to get these in everyone's hands! We have over 125 shirts ordered so far- THANK YOU to all of our friends and family who have ordered one! This has been SO FUN-thanks for the messages with excitement! :) Email me your shirt size and color if you want to order. lwalkermk@gmail.com The adult shirts are $11 (sizes small- 3xl) and $7 for the kids shirts (2T, 3T etc). The shirt colors available are white, pink, green, orange, blue and purple. These will be classic colors (the green is Kelly green, purple is a k-state purple, and blue is royal blue- hope this answers many of your 'color questions' :)) Our goal is 500 shirts and when we reach that goal, Tim and I are drawing a name/family to get reimbursed for their shirt order as a huge THANK YOU. 

We couldn't think of a more fun way to celebrate this milestone for all of us! Our dear friends sent us the design and I just can't stop smiling when i see it! We plan to have a HUGE decannulation party for him and for ALL OF YOU who have been by our side through this journey and we want everyone to wear their shirts for a huge group picture! I want to have the picture made into a canvas for P's room! I would LOVE to have everyone wear their shirts on the day of his next scope (August 5th) and send me a pic or post to my fb page (of you or your family wearing them). I cannot wait for the day he is old enough for me to show him the pictures of all of you sporting his shirt and showing your love and support for him (and us). 


Cranky pants and HME's for Diego

How is Preston doing you ask? Well, the picture below describes his mood quite well. If you know P well, you know he is always happy and easy going. However, he doesn't seem to be in the mood these days to be messed with. I guess somehow he thinks if he puts his blanket over his head, he won't be seen. LOL He has been a good sport with lots of walks, shopping in the really nice mall by our hotel room (the rain ruined plans to do the zoo or aquarium or butterfly exhibit. He really enjoyed spending one-on-one time with Tim yesterday while i went to KY. Preston is still really juicy and needs lots of suctioning- nights are far worse than days. He still is on and off with his eating but as long as we stay on top of his meds, he is tolerating everything fine. Ready to get home early Friday morning and see brother. He asks for Reid and I know he misses his side kick. I got a video today of Reid singing Twinkle Twinkle for the 1st time and i couldn't stop smiling. He is so loved and having a blast this week playing with dear friends and getting spoiled by Grandma and Grandpa Walker while my folks are out of town. 
Tim and I almost peed our pants when we realized he was like this 1/2 way thru shopping! I am sure we looked like parents of the year! LOL

EXCITING update about Diego (see my post called The American Dream for the full story). About 1 hour after my post I got a text from my friend Heather. Her little girl has a trache too but she is capped so no longer needs HME's aka noses. She asked for our address saying she has a WHOLE BOX of hme's for Diego! I about cried! I immediately contacted Diego's mom via fb and she was speechless. Heather OVERNIGHTED the box to us yesterday and I got it at 12noon today. We are headed to RMH after Preston wakes up from his nap to deliver this precious cargo to this family! Everytime I see an HME, i will think of Diego in Mexico! Thank you Heather for being an angel in disguise! I have also received several inquiries about how to help this family more. Pretty awesome! 


WE GOT THE BOX OF HME'S!!!!!! I was pumped!! Thank you Heather for this gift!!!

Sunday, June 8, 2014

The American Dream

Can you imagine spending 3 years saving up $27,000 so your son could be seen by Dr Rutter (Preston's ENT) and receive 4 procedures that are necessary for his trache to be removed and facial abnormalities to be fixed??? I can't return home without sharing the story of an incredible family we just met last night at RMH who did just that. They are from Veracruz Mexico and the mom (who i talked to) is one of the most GRATEFUL human beings I have ever met. She told me this was her ultimate DREAM for her son to be seen in the U.S. (she has never been here before) and this trip is their DREAM COME TRUE. They have sacrificed in ways some of us would never think is possible and her little boy, Diego, is beyond smart and sweet. He took to Preston right away and even put his arm around him when I asked the boys to pose for a picture together. His face just devastated me when I think of all the pain he will go thru for future surgeries. She said so many people look at him and just shy away because he is so deformed yet he is the kindest little boy and so very tender and sweet. :( She was telling me how the RMH is like a total dream to them and the hospital does not even seem real to them. They can't believe they get their own bathroom in the room at RMH and have access to food that is for everyone. She can't believe that nobody steals their belongings if they leave them at the table in the cafeteria (when they get up to get silverware or a drink). She said the supplies for Diego for his trache are too expensive to purchase so they go without certain things (like the HME Preston wears on his trache for humidity). Really??? She was given 2 from the hospital yesterday and is 'saving them' for a time when he desperately need it. Ugh! I just wanted to give her the rest of our stash so badly. Preston gets a new trache changed (by me and Jess) 1x a week- Diego gets his changed by the hospital every 6 weeks. I wish so badly I could do more for them. I have never been so HUMBLED to be an American until I talked to this mom. I would like to believe that moments like meeting this mom and hearing her story are reminders from God that no matter how rough the road seems, it is always worse for someone else and I need to be thankful and grateful and focus on the positives. Here is a precious picture of the boys playing last night in the game room. May God continue to bless this family! I am forever touched by them! 
Diego and Preston playing together in the game room




Day 3 and 4 recovery

We are discharged from the hospital, checked out of our 'short stay' room at RMH and now have a hotel room till next weekend. Preston is doing so-so. He seems to be at his best with a full tummy of liquids/food/medicine. Makes sense. Nights are terrible. He needs constant suctioning…..like every 15-30 minutes. Makes for little sleep for everyone. Hopefully tonight goes much better. We need good rest.  We have been g-tubing Pedialite to keep P hydrated and we did a can of Pediasure today- he was refusing to eat all together. Now he is much happier and had some grilled cheese and apple juice. Hopefully that continues. Glad we are in town a little longer incase he doesn't improve but I am believing he is on the upswing for sure! 

On a more fun note, I get to leave tomorrow afternoon for Kentucky to do an MK Beauty Bash event in the evening with several of my consultants. I can't wait!! They are only 2 hrs from where we are staying so I wanted to be sure and take a little trip to do an event with them. Will be a nice change of pace and I am so lucky to have MK be incorporated in the 'traveling portion' of this journey we are on. 

It has been really nice weather (in the 70's) so we have been walking lots. Preston loves his walks so this is nice! We are also near a very nice mall for when the rain hits. Hope everyone is having a GREAT weekend!! 
Loving his walks! 

Friday, June 6, 2014

Day 2 recovery

This recovery stinks! Preston has been miserable. We were planning on being inpatient for just 1 night but we are here for night #2. He just can't turn the corner as quickly as they would like for him to. Thank goodness for his g-tube to push fluids through so he stays hydrated. We are staying on top of the pain meds which seems to be helping a lot! Lots of drooling still. Nose running is calming down. Tim stayed last night at the hospital and got a total of 30 minutes of sleep all night. I came this morning and stayed all day while Tim slept at the RMH. Preston is always our happy guy so to see him grumpy and in pain stinks. 

The weather here is simply gorgeous. Hoping to enjoy it this weekend with lots of walks and runs while Preston comes along for the ride and rests. We found out today another family we met last summer has been here since we left last August- their little girl who is 5 has been inpatient for 300 days. She has had every side effect from a transplant you can think of. Almost lost her twice. They are from New York (the same little town Tim's family is from) and they have watched their 8 year old son grow up this past year via video and a hand full of visits. I have been missing Reid but knowing i get to be back home a week is not so bad after all. Makes our 2nd night in the hospital seem like no big deal. Perspective is a wonderful thing! I am praying hard for that sweet family who has it much more difficult right now. 

THANK YOU to everyone who has ordered shirts! I am astounded by your support and excitement for them. Can't wait for August 5th!!!

Thursday, June 5, 2014

From barf bags to BEST NEWS ever! Lets celebrate with T-shirts!

The LORD will fight for you; you need only to be still. Exodus 14:14 This is the verse I have leaned on all year and boy was it hard to be still but I embraced this past year with open arms and I now see how God has fought for us big time! 

Let's be honest, after yesterday, any news today would be great! ;) Well my friends, we have some amazing news! Tonsils and adnoids are OUT and Preston will be TRACHE FREE in approximately 8-10 weeks! Yes, I said it and we are believing it. It hasn't sunk in yet. We have a plan of action after consulting with Dr. Rutter. All details are below and further details follow with the  announcement of P's t-shirts that were designed for us!! 

Preston is recovering and its been a rough recovery :( He had a plug right after surgery and that was not fun. He took 2 hours in post-op to come out of anesthesia and wake up. His nose is a faucet, he needs his mouth suctioned every 5 minutes and his trache site is sore from a few other things. Thank goodness for Toy Story and his new penguin from RMH to help distract him. lol It's the little things! Our favorite nurse from last summer was his nurse today and she is about to have her 1st baby (a boy!) and I can't tell you how this complex airway floor feels like home in a way. She was so excited for us to get exciting news and loved seeing Preston. 

After only 2 hours in the O.R. this time, Dr. Rutter sat down with us and dove right in with the details. He said, "I can't begin to tell you how much better he looks and I actually think he may not need the single stage LTR surgery to get his trache out"**insert our jaws dropping to the floor here** Wait what?? We were taken back. He said this is the best Preston's airway has ever looked and he sits right on the fence to MAYBE needing the surgery or maybe needing his trache downsized or a hole drilled in it (to allow more air to move around) and some capping trials need to take place first to give him a chance before surgery occurs. I am so used to bad news at every visit so this was a weight lifted off our shoulders for sure! He wants to do some trials in August when we come back. His next big scope is August 5th and we need to plan to stay for 3-4 days (possible 4-8 weeks IF he ends up needing the surgery- won't know this until we see if Preston tolerates the capping trials- if he doesn't tolerate them I will stay here and he will have his big LTR surgery). The good news is Tim will still be off for summer so we can come together for this next scope! Yay! Tonight we are celebrating this amazing news! Preston has come SO FAR and we are nothing but impressed and pleased with P's team of doctors and nurses who care for him as if he is their son. They truly love him! Yay for today! :) Happy tears are the best thing I have felt in 2 1/2 years! 

Now for the FUN part- P's shirts! Aren't these GREAT!!!!


We couldn't think of a more fun way to celebrate this milestone for all of us! Our dear friends sent us the design and I just can't stop smiling when i see it! We plan to have a HUGE decannulation party for him and for ALL OF YOU who have been by our side through this journey and we want everyone to wear their shirts for a huge group picture! I want to have the picture made into a canvas for P's room! Plus, we have to travel back in 8 weeks for yet another trip (and these t-shirts will of course be a huge help with all of our travel expenses). The adult shirts are $11 (sizes small- 3xl) and $7 for the kids shirts (ask me about sizes). The shirt colors available are white, pink, green, orange, blue and purple. Our goal is 500 shirts and when we reach that goal, Tim and I are drawing a name/family to get reimbursed for their shirt order as a huge THANK YOU. If you are interested in a shirt, email me with your order at lwalkermk@gmail.com - shipping will be free if you live out of town! I would LOVE to have everyone wear their shirts on the day of his next scope (August 5th) and send me a pic or post to my fb page (of you or your family wearing them). I cannot wait for the day he is old enough for me to show him the pictures of all of you sporting his shirt and showing your love and support for him (and us). 
Our day started out walking b/c surgery time wasn't till 11:30 and we needed to keep his mind off food lol 

He was SPENT after surgery was delayed by several hours. 

And someone feels like crap :(

Wednesday, June 4, 2014

Cincy summer trip #2- we have arrived!

We are here! Boy does it feel like yesterday I was sitting in the living room area of RMH updating this blog just like i am now. CRAZY how time flies! Preston and I flew into Indianapolis this morning and Tim left at 4am to drive and pick us up. We all drove into Cincinnati together arriving at RMH around 3pm. Aside from forgetting a piece to the stroller and the flight being the worst flight in all the years I have flown (turbulence from the storm we encountered was so bad that other passengers were getting sick in their barf bags….lovely I tell ya……all the while Preston was bouncing on my lap and clapping LOL) it was a decent day of travel. A few other hiccups not worth mentioning just made me feel grateful to be on the garound and safe! I felt a bit green once we landed but grabbed some lunch and felt better. God sure has my back with who takes the 3rd seat in our row each time I fly with Preston. This time it wasn't anyone as dear as my friend I gained last year (thought of you all day Kristen ;-)) but the man sitting next me actually helped me carry P off the plane for a few reasons. Let's just say I am thankful for strangers in this world who are such good human beings. Makes me want to be even more aware of how I can help others who I don't know! Here are some pictures with my travel buddy today! 




Jessica (our amazing day nurse) gave this plane to P last year in Cincinnati and he hasn't let it out of his sight since then. It was the only toy we took with us today and snapped this shot of him right before we took off. Jess sent me the picture below from last year and I had to post it b/c it shows how grown up Preston is and I love how he has such a love for his plane.
18 months old after double LTR last summer  with is plane :)

We are at the RMH till Sunday morning and then we check out of our 'short stay' room (waiting list to be here indefinitely is over 2 1/2 weeks- yikes!) and we head to our hotel till end of next week. Kinda stinks but glad we are here for a few days at least. Preston goes right to his favorite play room and we are thankful for friends who we spent last summer with who are also here for another procedure or follow up. We scored tickets to the Cincy zoo and aquarium so can't wait to do that next week. Being back here is a HUGE reminder that Preston's issues are minimal compared to what we have already seen today. Breaks my heart into 6 thousand pieces when I see some of these kiddos who never leave here. :( 

Tomorrow is the big day! Not big in the way of surgery but big in the way of ANSWERS! Not sure which is more nerve wracking. Preston gets his tonsils and adenoids removed tomorrow and his arritnoid trimmed back. They will scope his airway and then we consult with Dr R about P's future decannulation (trache removal). We know we have to come back August 5th for a follow up scope no matter what they see tomorrow in the O.R. Between tomorrow and August 5th's scope, it will then be determined if he can have the single stage LTR surgery and trache moved at the same time. That will be a 6-8 week stay in Cincy while Tim starts the school year. We actually have that BIG MONUMENTAL single stage LTR surgery booked for August 11th but we are waiting till tomorrow to see how firm that date stands. I am very optimistic and cautious. We came here last summer thinking it was the end of the journey for Preston and having his trache and God had other plans. This past year has been GREAT! I can't imagine it any other way. I know this summer will pan out that same way! I just want to hear my son's voice desperately. There is too much scar tissue to allow air to move around the trache for him to tolerate the speaking valve. I know this sounds cheesy but i dream of the day he says Momma! He signs it all the time but I want him to have the ability to speak it. I know all parents want that for their children. 

PLEASE PRAY FOR US! Not sure what specifically to pray for- just that whatever is meant to be for P will happen and we will have peace after the consultation. Your support is what keeps our heads up and gives us encouragement! I always fear of our friends and family growing tired of hearing about this journey. We are sick of it so surely everyone else is too, right? And then I get flooded with texts and emails and fb messages today with words of encouragement and I had tears of thanks. Thankful for our dearest friends and family (YOU!!) who have not given up on us. We love you!