Sunday, June 30, 2013

Post Surgery Day 4

After 3 days of IV issues on top of the other issues occurring, Preston got a picc line tonight. He did awesome.......just numbing cream on his arm and it went in perfectly! AMEN! I really feel like it was the start of great things to come from here on out. We were grateful the picc team was in house today since it is Sunday. We thought it wouldn't be possible to do a picc line. This will make for no more sticks and I am thrilled! He has been through enough. His coughing and weezing has gotten much better as the day continued. He has ZERO energy. Layed in bed almost all day and snoozed on and off.  Caught another nap with Dada in his crib again. :) I got a slight smile tonight but its a wimpy one! I know he is going to turn the corner once all of these antibiotics start to do the trick. He is just worn out from coughing. Tomorrow we will find out the results of his cultures and change antibiotics accordingly if need be. I am hopeful we are on the upswing with catching this sickness EARLY! He will also get new trach ties tomorrow and hopefully a new trach. Rounds tomorrow morning will be filled with A LOT of info and Tim and I have some pretty specific requests. I look back on the first time he was trached and how clueless we were. Sure feels good to know what our child needs, tolerates best and how he responds to certain meds etc. My folks arrive Tuesday evening and I can't wait to see them. It will be wonderful to have them here for us and for Preston. Still no room at RMH. They said to keep checking in daily because they anticipate more discharges in the coming days.

We are also enjoying the daily pictures we get of Reid and his adventures. He spent the day at my sister's playing with his cousins. My mom stayed and played with all 3 grandkids while my sister shopped for Will's 5th b-day supplies. He is in LOVE with dogs and their dog, Maggie, is 4x his size so he had so much fun signing doggie all day and watching her. He took a great 3 hour nap at her house (thanks Jamie for the awesome loan of your pack n play....its been a lifesaver). Everyone is loving on him and I know he is so happy! That doesn't make us miss him less, it just makes us feel better about being away from him for so long. My mother in law sent me a picture of him in the grocery cart tonight shopping with her. He had the list and pen in hand and he looked so focused. It was funny!

Anxious for a great week and discharge once he is 110% healthy!!!! I hope everyone has a wonderful week and I wish I could express how much it means to us having you check in on us and keep us in your thoughts and prayers. This has been tougher than we anticipated but I believe it can only get easier from here. :)

It wasn't the poop :(

I can't believe I am posting a new message and naming it 'it wasn't the poop' but that is better than 'Preston has pneumonia.' Yep, the reason for his constant fatigue, fever, incessant coughing/suctioning yesterday is because he has pneumonia. Right after I posted on our blog and laughing about the poop, he took a turn for the worst last night. They did a chest x-ray late last night and did a blood culture. After the Dr came to see him and saw how miserable he was, she also decided to add another antibiotic to his list of meds and cranked up the dosage to really knock this out if it isn't viral. We should find out today. We are doing Q4 breathing treatments and hoping we all can get some rest today. We were up all night and basically suctioned him several times every 30 minutes. :( He just is miserable and my heart aches for him. Thanks for keeping us in your prayers. I talked to another mom this morning in the coffee room and she said they had about a 10 day wait to get in to RMH. Today makes it day 8 for us so I remain hopeful that we will get in this week!

Saturday, June 29, 2013

Post Surgery Day 3 God is good, God is great, let us thank Him for Graeters!

Compared to yesterday, today has been great! I love the weekends at the hospital because it is quiet and alot of patients are getting discharged. There is not hustle and bustle like the weekdays bring. P is getting used to his new trach he received in his O.R. visit today although he has been super super juicy. His IV situation is better. He just seemed like he was in a fussy funk all day unless he was sleeping (which he did a lot of today). He wanted to be held a TON yesterday and all he wanted was to lay and snuggle in his crib today. I know he went back to the O.R. this morning and the anesthesia can cause him to feel cloudy but normally a few hours afterwards, he is usually more himself. I could tell it wasn't surgery pain because he wasn't fussy like he is when he is in pain. So we just enjoyed a day full of snuggles, naps, and a bazillion Thomas episodes. The big highlight of the day was ordering a pizza for dinner from a tasty place called LaRosa's. I am up to my eye balls with the cafeteria salad bar (which is great and has a lot of options and I am glad i can eat healthy every day but it's Saturday night and we thought it sounded great). Our day nurse who we have had several times and love kept telling us how delicious it is and she was certainly right! What is it about a good pizza? Just hit the spot tonight for sure! Then we thought Graeters Ice Cream sounded good! If we are going to splurge on pizza, a little ice cream can't do much more harm, right? :) So P was dozing off and our day nurse said,  "You two go grab some ice cream while he is sleeping before we do shift change." It hadn't even occurred to us to BOTH leave but we thought, SOUNDS GREAT!!! I was nervous leaving in hope's Preston wouldn't wake up and start crying like he has been today on and off but I also knew we needed some fresh air and 15 min away would do us some good. Well, we found out why he was just not himself today. We got back and walked in his room and it smelled SO BAD! He had a HUGE HUGE blow out while we were gone!! Our nurse was thrilled he finally pooped! LOL I felt awful we left and he decides to finally poop and they had to clean him up.....it was up his back, on his blankee and his sheets, and on his pulsox cord. Tim and I both looked at each other and started laughing because secretly, we were kinda glad we missed the mess! Is that bad to admit? Just this one time it was nice to not have to mess with the poop being everywhere. Plus, Preston loves our day nurse so i know he was just fine being awake even though we were gone. Glad we ended the night on a laughing note rather than an evening filled with tears like last night. Laughter is such good medicine in times like these! I am thankful Preston is now sleeping with a belly that no longer hurts him. Here's to night #2 of good sleep and praying tomorrow is uneventful. Hope everyone is having a great weekend! 

Better day for everyone!

Tim and I both got great sleep last night. Yay! I went back to the hotel room and Tim slept with Preston. I married a wonderful man who insists I get rest and drove me back to the hotel to sleep. The Tim only got up ONCE for P last night so EVERYONE slept great! I am happy to report P is out of the O.R. He has a new trach that is longer by 5 mm and this is going to make all the difference in the world for him. Hopefully this means he can come off his oxygen and will be able to cough up his secretions better too. His breathing treatments should be much more effective too! He did spike a fever and they cultured some cloudy secretions while he was under. Praying nothing is growing and he doesn't have any infections. He is already on an antibiotic but they want to be cautious! Dr didn't seemed concerned at all. I know today is going to be a GREAT day! Amazing how perspective changes with sleep! I am going to make sure Tim and i take a little bit of time today to step outside and just feel the sun. Still no room at RMH but I bet we will get in next week for sure! We also have exact dates for Preston's stint removal and follow up broch. July 23rd is stint removal and July 29th is bronch and then hopefully HOME. :) Wishing everyone a wonderful weekend!!

Friday, June 28, 2013

Post Surgery Day 2

Well, today started off on a sour note and is unfortunately ending on one too. Last night involved little to no sleep for everyone. Preston finally perked up around 11pm after sleeping ALL day and was confused, drugged, and wanted nothing but me. I was of course loving that but it required me crawling in his crib and snuggling till 2am with him. We actually both fell asleep and Tim woke me up to crawl into the sofa bed once Preston was passed out enough to not notice me leaving him. I'm pretty sure I need a neck replacement! LOL Those hospital cribs are clearly not meant for adults! What we do for our babes! We noticed yesterday that when we go to suction P, we have some resistance when we reach the 10 mark (thats how far down we go to suction). So they put a small camera down his trach first thing this morning and decided he needs to go to the O.R. for several reasons. I am too tired to explain it all but it looks like his his trach is touching the back of his trachea. It is occluding his airway somewhat and he needs a trach change with a longer trach. He needs to be scoped and they want to be super safe and do it in the O.R. After several ER patients got admitted today, Preston's time slot that was supposed to happen this afternoon is now bumped to first thing tomorrow morning at 7:30pm. This is very disappointing. The poor thing has not had any feeds since 10am. He keeps signing to eat and drink and doesn't understand. They want him to keep an empty belly to be on the SAFE side so he doesn't aspirate if anything were to happen emergently. The issues he is having all stem from his procedure not going the way most LTR's usually go. It has been such an emotional day. Tim and I just feel like nothing ever goes the way it is 'supposed to go' with Preston. I feel like my poor little guy can't catch a break! The reality of being here for 6 weeks has sunk in and if I am being honest, it stinks. I have cried a lot today and it feels good to just release it all. I have held in a lot of my emotions up until now. I called home to talk to my mom and when I heard Reid in the background talking, i just lost it. I miss home, our morning walks, trips to the park, the chaos of lunch time, the quiet afternoons during nap time, our evening wagon rides, the snuggles before bed when the boys get their milk and blankees. I miss watching them play together and get into trouble together and crack each other up! I miss my bed! I miss my sister and niece and nephew and the play dates we have so all the cousins can play together. I miss being busy with my business and talking/seeing my customers and consultants. I know this is temporary but it feels so good to just say it and be REAL! Yes, we are in a great place.......the ONLY airway floor in the country with world renowned doctors and amazing nurses who specialize in Preston's issues! But that doesn't allow us to be close to HOME and be with Reid and enjoy our summer the way we should be able to! By the time we get home, Tim will start back up at school. I am grateful we have the opportunity to get our son the BEST care and we know the end result will be worth all of this......it is just so raw right now in the moment. We feel helpless in a sense. It is a waiting game to see if the LTR surgery took and will be a complete success for him. This is weighing very heavily on my mind and I am BELIEVING with all of my might that his grafts will heal and everything will take the way its supposed to! Easier said than done! I am not trying to be negative, I am just being real tonight. Tim and I have stayed strong for so long and I knew this part of the journey would be tough. I just didn't realize how tough it would be at times. I knew there would be days like this. Just didn't anticipate it coming so soon. We are turning in early for the night to watch a movie and just get our minds off everything. Praying for a successful bronch tomorrow morning and hopeful a new day will be just what we all need. Thanks for letting me use our blog as my personal therapist tonight! I feel SO MUCH BETTER! LOL Maybe we all need a blog! J/K 
I will update tomorrow after his trip to the O.R. with results! :) One last thing.....RMH is still full with no rooms available. Will call tomorrow to see the current status! Hopefully we will get in soon!

Thursday, June 27, 2013

Post Surgery Day 1

Today has had its ups and downs. Mostly UPS so I will start with the GREAT news first! We are out of the ICU and now in the Complex Airway Unit which is A.M.A.Z.I.N.G. and solidified that we made the right decision coming to this hospital. Preston has 2 nurses all to himself and this wing specializes in nothing but airway issues! So its a specialty unit and they are giving him fantastic care. They have a double pull out couch so Tim and I can both stay here till he is released if we want to. They have a laundry room and provide soap/dryer sheets. There is a full shower/sink/toilet in his room for us to use. It isn't the Beverly Hills Hotel by any means but it is more than what we expected in this wing so it sure is nice! 

Preston was able to FINALLY fall asleep and stay asleep around 11am today. We thought it was due to pain from his surgery but in fact it was his poor bladder that needed to be emptied and his cath had a block in it. Once they took the cath out and did a quick in and out cath, he was no longer feeling so FULL. :( It was immediate relief and he has been asleep most of the day and evening since then. I was also able to get my first snuggle in tonight with him. I decided to take a necessary shower :) and when I got out, Tim and I saw he rolled over/sat up in a state of confusion and was crying so I scooped him up carefully (that right rib cage area is so tender and I don't want to cause him any pain). He snuggled right in and fell asleep on my lap. A moment I couldn't wait for! I just want to make him feel better in every way possible!!! 


Tonight will be a quieter one for my boys I hope. We are all bunking in P's room together. Wish us luck! We are certainly spending LOTS of time together and Tim and I are doing a good job of not killing each other! *wink wink* No, really we are glad to have each other and I can't imagine doing this without him. But I would be lying if i said that leaving the room to grab a drink etc wasn't a nice break during the day! :) I think its also safe to say that we have officially transitioned over to EST. Kinda weird but i guess we better get used to it. I also talked to the RMH and they said we are CLOSE to getting in! Hooray! :) Tomorrow we see the feeding team and speech for P and I am hopeful that will go well. They started continuous feeds thru his g-tube for nutrition today which is great. They will also remove the drain tube in his chest tomorrow too! I know he will be more awake tomorrow so I just pray he remains comfortable and can transition easily to the next step in recovery. 

I hope everyone is doing GREAT! Please enjoy the pool, outdoor activities and get some sun for me. :) I am looking quite tan thanks to a bottle rather than the pool. LOL If I am going to be stuck inside this long, I might as well feel good about having some color, right?? :) Lastly, A shout out to all of my mk peeps (consultants and Directors)....I am thinking of you constantly and praying for each of you as you wrap up your personal and unit goals. I sure miss each of you and can't wait to hear how everyone finishes!!!!  

More tomorrow! Thanks for checking in and sharing this journey with us! 

LTR is behind us!

WOW! What a day yesterday was for our little guy. He is one tough cookie! We were wiped by 10pm when we finally got settled in his room. Every nurse and RT that we have met and is caring for Preston has been wonderful. Very compassionate and helpful! Thankfully a 'parent room' was available (it has a twin bed to spend the night in since there is only a pull out chair in his room). It was nice that Tim and I could both stay at the hospital last night and hopefully tonight too! Tim insisted I stay in the parent room to get a good night sleep and unfortunately, Preston had a bit of a rough night so looks like Tim will be taking a nap or 2 today! We were grateful they provided us a private room yesterday in the waiting area to spend some quiet time watching movies, updating fb, and getting a nap in while we waited. Just glad yesterday's surgery is behind us and the healing begins!

Total surgery was 7 1/2 hours. Now what anyone anticipated but they ran across some unexpected hurdles that took some time to fix. It's all good in the end! Mr. Preston just can't seem to do anything easily :) :) Dr Rutter placed the stint in his airway and was able to do everything that he wanted to do. Due to Preston's trach being placed emergently, Dr Rutter had to basically retrach him above his current stoma sight. We will be inpatient at least 5 days total and then released. We won't be back for the stint removal till the end of July. Dr Rutter wants to keep the stint in longer for several reasons. So that means we will be hanging out in Cincinnati for 4 weeks and hopefully most of that time will be at the Ronald McDonald House instead of the Hampton Inn. I call today to see how far up we are on the waiting list. Once he goes in for the stint removal around the 25th of July, he will go back to the O.R. a week later for a bronch (scope of his airway) to see how well he is healing and hopefully get the green light to go home! Tim and I will drive back home with him the first weekend in August and Tim starts school the following week. This was not the news we were hoping for but we packed with a 4-6 week stay in mind. Being away from Reid this long will be rough. Glad he will be coming out with my in-laws in a few weeks. The expense of being away this long is overwhelming but we will make it work. We will return to Cincinnati a month later for a trach downsize, cap trial and 2 night stay. We will also work on using the speaking valve. Then we will go home and work on doing the cap day and night. Then we will return another month later for trach removal with a 2 night stay. So we are looking at him being trach free by October/November. Then we will return to Cincinnati for an exam to see how his stoma is looking and if it needs some help closing. Just a timeline for those of you wondering what our next steps will be. 

For now, he is in a lot of pain today and had a slight fever last night so we are keeping on top of the pain meds. He is really juicy....lots of secretions which is normal. Just plan on spending the day by his bed singing to him and rubbing his head. Tim is already taking a nap. I haven't held Preston yet. His rib cage is super sore. :( Prayers for no pain and lots of rest would be appreciated. My parents can't get here soon enough and knowing Reid is being SUPER spoiled is peace of mind we needed more than we realized. Every time I call and touch base I hear him giggling or talking in the background and that makes me feel GREAT! "Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid." John 14:27

Wednesday, June 26, 2013

Address

You know you have the WORLDS GREATEST SUPPORT SYSTEM when you receive so many inquiries via private messages on fb and emails asking for your temporary address, that its easier to post a blog with it. I apologize for the generic message. Today has been overwhelming. I just don't know how we have deserved such generosity and kindness but it will never be forgotten and we appreciate more than we will ever be able to express. Preston is still in surgery and he still has about 4 hours to go! Here is where we are temporarily staying for a few weeks. Should we get transferred to RMH, the hotel will call us and we can pick up any packages once we leave. We already got our first package today! Yippee!!!!
Hampton Inn 200 Crescent Ave Covington, KY 41011
Love and thanks! 
Tim and Lorna (and P)

Tuesday, June 25, 2013

Final Chapter

Well, someone needs to pinch me. I can't believe tonight is the last night Preston will have a damaged airway and tomorrow he will have the LTR surgery. We took lots of pics today and tonight. I want to never forget this day for so many reasons. It's been a long road but so worth it to be here tonight! We got up bright and early after a great night sleep for all of us. Didn't even have to suction P once throughout the night. That is always a nice treat when we wake up in the morning and realize he never coughed once and needed suctioning. The breakfast Hampton Inn serves is DELISH and once we got our bellies full, he headed to the Aquarium in KY which was great. Preston loved it and we didn't have much of a crowd (always thinking of germs) since we got there early. We took a nice walk along the river, had a light lunch, stopped by a candy shop to try the famous buckeye candy (its like a peanut butter cup but better). I had one bite and stopped myself b/c Graeters Ice Cream was on my to do list for a mid afternoon snack. SO WORTH THE CALORIES! I could write a whole paragraph on our ice cream experience there. LOL How sad is that? We headed back to the hotel room for Preston to get a nap and we laid down too. 3 hours later, we woke up and felt like a million bucks. Off to CCH for a tour of ICU and their new surgery waiting area. I am so glad Tim thought to book a hospital tour (even though we had been there before). We know exactly what to expect and what is available to us etc. The reality of his surgery being tomorrow FINALLY sunk in. We headed back to the hotel room to pack our bags for our hospital stay, give P a bath, and enjoy some down time reading books and watching a movie. If I could describe how wonderful and NORMAL today felt, I would. But I just can't. The amount of PEACE Tim and I both feel is surreal. We know God has Preston in the palm of his hand and tomorrow is going to go BETTER THAN EXPECTED! We just know it. We don't feel anxious or worried. This has been my prayer for so long because I didn't want Preston to sense any of our anxiety. I have repeated over and over "Do not be anxious about anything, but in everything prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and minds in Christ Jesus." 4:6  I had a few very emotional days prior to leaving because I knew we would miss Reid terribly. I have not shed one tear since we left about being away from him (not yet anyway :) and I think its because I know we HAVE TO DO THIS FOR HIS BROTHER! It feels so good to not be an emotional wreck like I was afraid I might be. Is not like we left Reid behind because we wanted a lighter load coming here. Sure, its easier with one kiddo (and also a bit boring if you want my honesty *wink*) but we have a great reason for all that we are doing. It also helps to get pictures of Reid having a blast! :)

As we turn in for the night, Tim and I just want to extend a HUGE HUGE HUGE thank you to all of our dear friends and family who have supported us 110% on this journey. Your prayers tomorrow (11am is surgery time) will be felt and we can't wait to post updates throughout the day to keep everyone informed. Pics will be posted once I have time to upload them from my camera!

Monday, June 24, 2013

Hello Cincinnati......Home away from Home!

We are HERE! I just love Cincinnati and the view of downtown. The city famous for Graeters Ice Cream and Gold Style Chili. I am down with trying some famous Ice Cream for sure! I can pass on the Chili till Fall! None the less, we are HERE and it feels GREAT! Flights were smooth and I was grateful our day nurse Jessica came with me for the day. What a tremendous amount of HELP! Plus, all we do is laugh. She is such a dear friend and we had fun with people watching and looking like a bunch of bag ladies with all of the stuff we hauled on the plane. She is headed back home as I type this. Tim's drive was great....he left at 4:45am and made great time! We are unpacked 1/2 way. Our 'home' for the next week or so is Hampton Inn in Covington KY (across the bridge) from the hospital. RMH is full :( Hopefully a room will open up soon and I will be glad we didn't 100% unpack b/c that will be a pain to repack up again. Tomorrow is a free day for us with nothing planned other than a hospital tour at 5pm. We plan to get out and do a few fun things just the three of us to see some of the city before we are held captive for 2 weeks at CCH! P's surgery is at 11am on Wed and we arrive at 9am to check in. My parents arrive next week and I can hardly wait. I forgot to mention that we took some time to see Churchill Downs today once Tim met me at the airport. It was very cool and fun to go and get pics and actually see where the Kentucky Derby takes place! 

On a closing note, we had the pleasure and joy of experiencing Preston pulling his trache out tonight while putting him to bed in his pack n play. Tim and I heard his gasping for air and sure enough, he was able to pull on his trach ties just enough to wiggle his trach out of his stoma and then couldn't breathe. WHAT A TURKEY!!!!!!!!! Not something I wanted to experience. The good news is he is now fast asleep and I am proofing their 18 month photo shoot pics to unwind that we had taken last week. I just can't believe how fast time is flying. When I see the pics of the boys our photographer took, I can't help but tear up at the thought of our next photo session being one that will capture Preston WITHOUT his trach. VERY exciting!! Certainly a thought I am glad to end my night with! 

Sunday, June 16, 2013

Happy Father's Day!

Happy Father's Day to Tim! We are sitting here on the couch relaxing after a busy day (the boys are in bed sleeping soundly from a busy day of celebrating) and the realization that we leave in 1 short week for Cincinnati has hit us. I still can't believe Preston is having his LTR surgery this soon. We can't wait for trials with his speaking valve after surgery and i can't help but dream of next year's Father's Day when Preston will be able to say Dada to Tim! 

I always knew Tim would be a great dad (he was ready to be a parent before me) but to see him in action is so fun! The boys LOVE him. They ask for him constantly (Preston has mastered signing Dada) and they wrestle with him every night. Tim's dedication to the boys and the time he spends with them is priceless to me. I always know when I am not home with them, that Tim is fully engaged and doing something fun with them. Makes my heart FULL! My mom always had a sign hanging up on the kitchen pantry door while I was growing up and it said, "To a child love is spelled T.I.M.E" I never really understood that until now. I totally get it. The boys always behave better, listen and obey much more when they have our TIME in every way. It's when we are preoccupied with distractions that they seem to have 'issues' LOL.

Ever since we knew we would have issues with Preston's health, Tim stepped right up to the plate and took charge with P's plan of care! I know he is going to do the same as we venture to Cincinnati for Preston' surgery. I can't imagine not having Tim as the father to our boys. He is the true example of integrity, success, confidence, man of Christ, and a true friend. Happy Father's Day Dada! We love you! 



I can't finish this post without a shout out to my own Dad! He is the reason why I am the person I am today. I am grateful I learned the true meaning of hard work and determination through him. I work my business the way I do because of him. The affection and praise he has given me my whole life has instilled security and confidence in me. I can't think of one school function my dad missed while growing up. He has been my biggest cheerleader. He was the dad always video taping EVERYTHING! It didn't mean much to me then but it means everything to me now. He participated in dance recitals doing the 'father/daughter' dance, took me to dance class and would always show up early to watch me practice before we got dismissed. He participated in Indian Princesses with me and always made sure I had what I needed. He is the main reason why my Mary Kay Business started and has grown with success. He encouraged me to start it at the ripe age of 18. He attended my first company function in Dallas to support me, and still asks me how things are going on a regular basis! We share the love of being in sales together and that will be our bond for life I believe. It means more to me than he will ever know. Happy Father's Day Dad! I love you so very much!