"Best Laid Plans"

I am back, Lorna promised me that some of you may be excited that I am writing the post tonight. I wish it was from the comfort of our own home. Unfortunately, that did not come to fruition. P went in for the scope and it took a little longer than usual. Lorna and I were sitting thinking, this is longer than usual. Come to find out, not so good news. P's airway is really pissed, as the doctor put it. The lower section looks great, which is where they did the anterior (front) graft. The upper airway is too swollen still to see it clearly. She believes the stint, abscess, and overall tenderness of the area are all factors. She said she could almost see it swelling as she probed. He goes back in next week for another scope  and probably the week after for another. They have to be able to see the posterior (back) grafts to see if the surgery was a success. 

What does this mean for us? Good question. I am staying here until Tuesday and then flying home. I have to get back because the summer party, and I use that loosely, must come to an end. School kicks back into full swing and I get to train 100 of BVN's finest to welcome our 9th graders. The next week I do the welcoming and then school. I hate to leave, but I have to. There is no way I can be away and get the school started off right. The other fact is that my students, who have emotional disabilities, do not cope with change well. So the less stress at the beginning of school for them the better. I can handle the stress, after all that is why God invented alcohol. :) It also means I finally get to see the Reidster! Super pumped about that part. Lorna will stay here with P, but her parents will be joining her for the duration to help out. It will be good for her to have them here. We are so fortunate to have their help and support since I have to leave. 

Reflection time: I am working in a new class this year, senior English. I thought I should maybe read some of the books that they are required to read so I can get ahead. Yes, I can read. I have read one of the two books, and find it most appropriate at this time. I read "Brave New World", which was really good overall and I have to say is hitting home. It takes in a future society where everything is made in assembly style, Ford style (who they consider God). There are no emotions other than happiness and they do not believe in a spiritual God. At the end there are lots of questions directed at a Native American, who is not part of the rest of this new society, about this God in whom he believes. I have to say that his conviction to adhere to his belief was truly amazing. I do not think that one can go through something like this and not question, any sort of spiritual presences. I read posts of others, for whom i have great admiration, who are struggling with life threatening illness and they are true and strong. 

Just to say it, today sucked. Nothing is more humbling than moving back into the room at RMH after already having the car packed. We are down but not out. We know that there is a light at the end of this tunnel. The surgeon who saved Preston's life said there was some altering guidance that day and I know there is something to be learned from this. If anything it is so that the world can see his smiling face, he smiles all the time. He is the happiest kid in the world and even says thank you and blows kisses while crying in the hospital. Even though he is nonverbal, he lights up a room with his personality. So it is that that keeps me believing, knowing he was placed here for everyone to enjoy that smile. His smile is unwavering and that is what we will be with our belief. I leave you with that tonight, a picture of the most perfect unwavering smile.

Blowing this pop stand.....our last night here!!

Well, today has been BUSY! I finally saw Lou Ferrigno's little brother after Tim telling me about him. Tim was right- total look alike! I got to say good-bye to a few of my favorite momma's and their kiddos. P sure knows how to make friends! I will miss their faces in the kitchen and hallway. Most of all, I will miss their unspoken understanding when its been a bad day. These mom's 'get it' more than anyone else I have met. We have the room totally packed up and we will clean the bathroom in the morning to complete our 'room check out list' that RMH gave us. Preston is scheduled to head into the O.R. at 1:06pm tomorrow. Tim and I are on our knees praying that BOTH grafts look fantastic and Dr. Rutter is pleased with how his airway looks. Preston has been through ALOT and we want 100% confirmation the surgery was a complete success! We are hoping he is now a candidate for the speaking valve and might even try it tomorrow. Not sure yet. I really hope Dr. Rutter says he doesn't want to see us for at least 6 weeks. The thought of coming back in 4 weeks is a bit much to handle after living away from home for this long. But whatever he thinks is best is what we will do of course. We had a follow up appt with speech today and his feeding is going good. Its a work in progress but he is eating regular food so that is great! Not much aspiration either so that is great! It wouldn't be a typical blog post without mentioning Graeters one last time. We made a final stop there tonight so P could get his very own scoop! He is hooked! The minute we walked in, he signed 'more'! LOL I am not sure if that is something I should be proud of or embarrassed by. No more ice cream for this family for the next 6 months. :) 

Tim and I can't believe we are on the road to being HOME. Most of all, we still can't believe P actually had the LTR surgery. I think we both have been in such a zone this whole time, we haven't taken a minute to realize he had THE surgery we talked about for sooo long. Now its over. Our son no longer has a damaged airway. Decannulation will confirm this but in our minds, we already know he is on the brink of that final step. NAKED NECK HERE WE COME!!!! 

Cincinnati will hold such a special place in our hearts and Preston will certainly grow up knowing all about this journey! He will also grow up knowing the amount of support and LOVE our circle of friends and family gave us (that would be YOU) to make this trip a total success for our whole family!!! Can't wait to update our BEST NEWS YET after Preston's bronch tomorrow! Stay tuned! 

P.S.- Tim is DYING to see Reid. I took video while I was home and it's going to be pretty fun for Tim to hear all of his new words in person once and for all. He will also fulfill Reid's request for 'Dada' that occurs more often than not. What a sweet reunion that will be next to the boys reuniting! :)

Dream Come True

I am happy to report Tim was able to experience Peanut Butter Brownie flavor of the month at Graeters tonight. They got it in early! Hooray! He has been dreaming of this day! Sadly, these are the highlights of our life here at the moment. And the best part.....it was compliments of the best Aunt and Uncle a girl could ask for! We received a Graeters gift card in the mail today just in time to go tonight! :) THANKS Aunt Katie and Uncle Paul! Preston loved it too! Next week's blog posts will be all about our weight loss plan! Lord knows we need it after all of this delicious ice cream! :)

The theme of today and tomorrow: PACKING! :) We got a TON done today and I can't believe his bronch is Wednesday and then we are heading home. We will also find out when we need to come back for another bronch and will book our next trip accordingly. I don't want to even think about coming back until we are home. We have a minor change in plans.....we will be hitting the road after his bronch and arrive late Wednesday night in KC. He will probably sleep most of the 2nd half of our drive as it will be dark and bedtime. I have tons of dvd's packed and he is an easy traveler thank goodness. As long as 'Linus' has his blankee, all is well in the car! LOL The boys will reunite on Thursday instead of Friday. Not sure when but it will be nice to have all of Thursday to unpack and have our family of four under ONE roof. Thank you God! :)

Refresher Course in Parenting

The classy welcome sign that greeted me as I went to baggage claim today in Indianapolis! LOL I needed the laugh after being down from already missing Reid and my folks. 

I am wondering how many of you are wishing Tim was updating the blog tonight. He is way more entertaining than me! I had no idea he would keep it going while I was gone. I bet Tim will jump on every now and then to say hello. Or maybe I should turn it over to him! :) Here is what I know after being gone a full week in Dallas and visiting my other lovie in KC. I need a refresher course in parenting for both my boys. Nothing is more strange that going back home to my house and getting my little man up from his nap and then turning around and asking about his routine. I totally forgot. In the course of a month, I have forgotten the routine. So I spent much time asking my parents about my own child and what he needed etc. Weird and lost feeling but it came back sooo fast and I forgot how in love I am with my Reid. He is such a BIG BOY these days! He repeats everything we say and his pronunciation of words is crystal clear. I can't believe it and he is on the verge of putting 2 words together. I have a feeling sentences will be here before I blink. I thought saying good-bye today (I left to go back to Cinci) would be hard but seeing him sitting in his crib on Thursday as I opened the door to his nursery, waking from his nap, was gut wrenching. At first he was confused and then when he realized it really WAS me, he wanted picked up and would not let go of me. A death grip is a good description. I realized in an instant all that I missed out on these past 31 days. I just cried. It felt so wonderful to hold him and know its only a matter of days before we pack up at RMH and head home for good. At least until we head back here again and that will be for a short visit each time we return. I enjoyed every second being home. It is so cliche but there truly is no place like home. My mom cooked and baked for me, my folks went on long walks to the pond each night after dinner with Reid and me, and my dad and I got up early and took Reid on tricycle rides thru the park just the 3 of us. I love time with just my dad and then time with just my mom. I cherish it after recently losing my Grandma. I realize time is precious. My mom spoiled me with Starbucks runs and she did all of my laundry.  My dad fixed the boys book shelf and Reid of course had to help him with his drill. My sister and I arranged a cousins play date and it was a blast. LOVED seeing her after a month apart and catching up was wonderful. Plus I got to try her new Dunkin Donuts coconut coffee! Its the little things, right? She had a little goodie bag for me to enjoy on my flight home to ease the pain. It was perfect....she knows me the best! :) Just a wonderful time filling up my cup with NORMAL day to day activities. 

I got back to Cinci tonight......well I actually flew into Indianapolis where Tim and P picked me up. We  grabbed a bite to eat and then headed back to RMH. Its about a 100 mile drive. Sure wish Southwest flew directly to Cinci. I feel like fish out of water with Preston and his new sounds and routine. I actually hear him breathing through his mouth.....taking big breaths in through his mouth. Its remarkable! He rarely needs suctioned.....he coughs everything up on his own just great. He is like a different person. And after being with Reid all weekend, I was reminded how different they are from each other. I forget b/c they have been apart for so long and they are twins so I just assume things are more similar than they really are. So, the refresher course in parenting started all over again. :/ I am so impressed with Mr. Mom and all that he juggled while I was gone. P's meds are lengthy and breathing treatments are a little long but nothing Tim can't handle. His feeding his the most tricky part of all. I have some learning to do! :-) And the gorgeous dozen red roses that were delivered to me on my awards night in Dallas was just a 'little' something Tim thought to do in the midst of discharging our son from the hospital and settling back in to RMH. I have been blessed with an incredible husband and father and I KNOW THIS! I think God for him! 

The thought of putting the boys back under one roof and intertwining their schedules seems daunting but it will be fine. Thank goodness we have some time before Tim goes back to work to get settled in to our routine at home. I plan to do lots of cleaning tomorrow and lots of packing. We want to enjoy our last full day on Tuesday with Preston doing something fun before he heads back to the O.R. on Wednesday. Then we hit the road to come H.O.M.E. We are undecided when we plan to hit the road but we will return by Thursday no matter what. My parents will have Reid Thursday night so we can get a good night sleep and unpack a little and get Preston settled. The boys will reunite Friday. I will have my video camera rolling! :)  

Someone was happy to have me back. Felt great! :)

Getting back in the saddle

Well, we are out of the hospital cell and into the compound. P had a great day and he is getting back to routine. We are currently working on eating. It is hard to believe we are back to this, but he has been choking on food since the surgery. He at some puréed pancake this morning before discharge. This afternoon he ate a whole jar of apples and blueberries. I had to thicken them with rice cereal in order for him not to aspirate. Hard to believe a kid who once ate everything we did is back to baby food, but he WILL get there. For dinner, he ate sweet potatoes mixed with ham and gravy, don't be jealous! He is back to playing and my goal is to wear him down! It was accomplished. 

In typical P fashion he made some fast friends with the people back at RMH. He was all smiles at dinner, entertaining a group young adults playing the piano. Tomorrow, I go get the momma at the airport in Indy. I am sure she will just as happy to see me and P as we are to see her. 

Fresh out, wanted to help pick up

Us in the play room.

The good, the bad, the ugly

Well first the ugly, there is a guy at RMH who could be Lou Ferrigno's little brother. 

Next the bad, Preston's bronch got moved to Wednesday. This means a delay in our arrival home.

Now the good stuff. The silver lining to being here the extra time is this. Graeter's flavor of the month for August is peanut butter brownie. Bet you weren't expecting that for the good part. Really, though, I am sure it will be worth it!

On other fronts, Preston is doing good. He free to roam his room, which he does. Still in isolation since his counts are not up to par yet. He is making some noises and coughing tons, but needing little suctioning. As of tomorrow, he will no longer be in the marching rubber band. He gets his rubber band drain out and picc line. Oh yeah we blow this pop stand tomorrow!

He ate some yogurt and puréed Mac n cheese. He also drank some thickened milk too. Applesauce a little thin still, but he will back to grilled cheese and fries in no time. He is really showing his colors now and the staff may adopt him.

Trying some milk

Under the sea or crib, exploring his room.

Is there something on my forehead?

Trying to bait people into playing with him through the window, no one resists those eyes or the annoying knocking he does :)

So much to say....

Post stint removal update

The stint is now out and P is recovering. Spoke to Dr. Rutter today and he said that Preston has really given them a run for their money with all is interesting quirks post LTR. One of the issues discovered was that the stitch holding the stint in place was infected, so he has a little absence there. Dr. Rutter placed a drain tube to be double sure that any nasty fluid left the body. The posterior graft looks good but too much swelling to see the anterior graft, he will be on steroids, antibiotics, and acid reflux meds to help the swelling go down. There is also some granulation tissue, fancy name for scarring, around the stint site just below the vocal cords. This is to be expected. 

I have to take a minute and explain Dr. Rutter a bit. He is Norwegian. Although, upon appearance he looks Asian, so I would guess he maybe more what we call Inuit. Upon first glance you see Asian though and expect that sort accent, to be blindsided with this very European English. Everything he says sounds different and much smarter due to it, even his jokes. He made one on the way out of the consult room. 

Anyways, the one antibiotic P was on can cause a drop in white blood cell count, which Dr. Rutter has not seen in 8 years. He had not experienced it with one of his patients, it was someone else's, but he had not forgotten it though. 

Overall, we are still on track for scope Monday and departure on Tuesday! Below are some pics from the day. The little white thing is the stint that was in Preston's airway. I am geeking that we got it. Dr. Rutter said, as he left holding up the specimen cup it was, "Of all the things I have designed, it is the most phallic looking thing." His nurse smacked him with her OR hat. He laughed. 

Good end to some stressful waiting.

  This is on the way down, no fun in a mask

 In the holding area

 The stint is in the middle the object on the right is a sunflower seed.

Now that that is over with, we move to the rest of the day. P ate about half a yogurt and took some sips on thickened milk. He slept, pooped, and overall was in a great mood. Later I found out that the drain in his neck is called a rubber band drain, and it is a rubber band. The sort of rubber band you may find at Tierney office products, KC's oldest independent office supplier. (FREE ADVERTISING) I found this amusing. 

On the other end of I-70, mommy and son were reunited. Reid and Lorna are back together and I am sure it was emotional. I have some pics too. His bed head still has not changed, good to know. He is upping his game as you see him in the car with the ladies. That pic was taken while we were both still in cincy. P will have some catching up to do, although he has the nursing staff here wrapped around his finger. He even gets ALL 9 people at rounds dancing or clapping. Lorna and Reid will play and go to the pool, pending the weather.

"So my parents are out of town...play date? 

Reunited and it feels so good

I don't think someone is letting go.

We're goning in!!!!

This means stint is coming out and still on schedule to come home on time! This is us in the holding area.

Moving on up....

Preston is flying standby for surgery tomorrow. His white count is better and the blood docs think it is just a compounding of lots of things that caused it to dip. He was ornery as ever toady and only took a short cat nap. Overall the single parent thing is pretty easy when he is in the hospital, but it makes for a long day. There is a little boy here at RMH who is bright-eyed and curly hair, he reminds me of Reid. He is fun to watch at dinner. Overall it is the hurry up and wait game tomorrow. I will post as soon as I know. 

I suppose other than that it is pretty quiet here. Lorna spoke tonight and I am sure she did awesome! 

The latest and greatest on the man

He is getting a virus scan as we speak to see if there is another virus that may be causing the low white count. His cold reduces the count and the stint does not help either. The Blood Docs are pro stint removal the ENT Docs are cautious, it is a damned if you do damned if you don't sort of thing. The foreign object distracts the white blood cells from fighting the infection but with a lower white count he may not heal as well from the removal. Every day waiting may be one more day delay in the follow up bronch, which in turns means one more day here at the compound and the hospital. On the good note all meds are stopped and he is getting small slow feeds.

On a side note to brag on the trophy wife, she is number one in her area for recruiting and best all around Director. Yeah, she is pretty awesome and a great partner for this little journey!

The Final Coutdown

Well, the latest is that P, Mr. Awesome, won't have the stint out until tomorrow at the earliest. Why the delay? Well with the cold and antibiotics, his white blood cell count is low. Instead of risking more infection,  they are going with caution. So we sit and watch Elmo, Thomas, and baby crack in the hospital. They have discontinued his antibiotics to help boost he count too. 

Lorna made it to Dallas just fine after a few snafus. She get lots of prizes today, so those of who know her know that she will be elated!

The Graeter's last night was good too!

Blog-jacked!!!

The blog has been highjacked by Mr. Mom, me, Tim. Anyways, Lorna I am sure will be posting too for your reading enjoyment, so I am not offended if you skip my entries and just read hers. Here I am eating some Graeter's, left by Lorna for me :), after leaving P at the hospital. He is doing good but has a cold, which under normal circumstances would not land you in the hospital. Due to his stint, he cannot not seem to help but gag himself while trying to accommodate the extra secretions of a different texture. This resulted in a lot of lost feeds, so we admitted him. He gets the stint out tomorrow morning and then all should be normal. 

You may be reading this and thinking, where Lorna ran off to? She is somewhere on her way to Dallas for some much needed Mary Kay R&R. She is going to be showered with prizes for working. She has not mentioned the fact that she is the keynote speaker on her area awards night. She deserves every bit of ego stroking. She has worked her tail off to be here with us, guilt free. The boys and I are very proud. 

She also has not given herself enough credit for keeping up the blog or keeping everyone back in KC on schedule for the Reid-miester. She follows up her Dallas trip to go home to see Reid, they will be heaven. 

My parents just left today and given all that went on with P, their timing was perfect. Lots of laundry to do and my dad made me a strata for the week for breakfast. YUMMY!

I have to do a big thank you to all who have sent cards, packages, etc.; they have been a great boost to us here and for the BVN folks, GO STANGS! Seem great support!

Tough choice....

He likes to wear my hat, who wouldn't?

Update on Preston

Greetings from Louisville airport. A quick update on Preston for those of you asking and praying! We are so glad we took Preston to the E.R. yesterday. After talking to ENT on the phone, they said to bring him in. Not sure what is going on but he is doing MUCH better. He is NPO (no feeds) till surgery tomorrow to get his stint removed. We want to be save and keep him from possible aspiration since he was gagging (from not being able to handle his secretions) and then throwing up his ENTIRE feed. And I mean ENTIRE feed. :( My mother in law was our designated laundry lady (thanks Grandma!!). He is getting fluids with sugar so he won't be as fussy with an empty belly. His fever leads us to believe he has a virus of some kind. His coughing was out of control and no sleep was had by any of us. He was so wiped last night after battling his coughing fits. The RT gave him more breathing treatments and he is better. Its all a guessing game but Dr Rutter believes he is more than ready to get the stint removed. His body clearly wants it OUT! And his stoma site is all healed. The previous stoma has closed up and the new one is healed. Great news for sure!!! Preston is not in the Complex Airway Unit......PICU it is and I am so happy he is there instead. With me leaving today, I know Tim and I both feel much better having him monitored inpatient with these symptoms. I almost didn't leave and Tim basically said that if i didnt go, he would drag me to the airport himself. I am thinking he is ready for a break from each other too??? LOL He knows this trip will be a recharge for me on many levels. It is a wonderful feeling having 200% confidence in the father of your child and knowing your baby is in the BEST arms possible. Tim was already talking about snuggling in P's crib today.......a good day to be inside as its raining all day in Cincinnati! So I am boarding my plane in 1 hour and I already got an update saying Preston took a great nap this morning. I am feeling good about everything and I know tomorrow will be the day we have been waiting for! Tim is going to take video's on his ipad post stint removal so i can see what new noises Preston can hopefully make. Tim will work on feeds orally and I think Preston will be so happy to finally be able to eat. No more pediasure feeds! Hooray! More updates to come as I get news from Mr. Mom! PS- If i could explain my level of excitement about seeing my Reidy on Thursday and being the one he wakes up to after his nap, I would tell you but I just  don't have words. A weekend of snuggling my lovie is what this mama needs! God is GOOD! :)

4 weeks and counting

If it weren't for how sweet Preston is, I would be pulling my hair out right about now. He is the ultimate snuggle bug as you can see and his smile lights up our days! HOPE HE STARTS TO FEEL BETTER SOON!!!!!!

We are 2 days shy of being here 4 weeks! Stint removal is in 4 days and PICC line will be removed at the same time. No more PICC meds will be wonderful! They rule our lives. Bad news is Preston has a fever :( I am a nervous wreck about him being healthy to get the stint removed. He slept 3 hours today for his nap and I knew something was up when we woke up. His nose is running and he is just not himself. He is already in bed out cold for the night. We are really hoping once the stint is removed, his secretions will become less but for now we are focused on getting him healthy. We had a rough night last night with lots of suctioning. Prayers for good sleep for all 3 of us would be appreciated and for FAST healing for P please! We are on the home stretch and would like for everything to go smoothly to get us home and get Preston where he needs to be! Once again, thank you for so much support and love! The mail is a flowing :) :) Aside from this minor hiccup in our plans, we are laying low and enjoying time with family! Here are pictures of what we have been up to! Having lots of fun with Grandma and Grandpa Walker!

This is at the entrance of our wing. This didn't ring true for us until this week. We have met some incredible people!

Just a lazy afternoon playing peek a boo with train tracks

I think we need to get a train track set as a birthday gift for someone

P found a friend! 

Family pic at the Cincinnati Zoo

I felt everyone needed to be aware of this. Apparently the Cincinnati Zoo thinks so  too as this is hanging on the wall in the restroom where you dry your hands. Great info to know! LOL

We saw this at Hallmark and it's the cutest thing ever! We could insert P's head on Linus's body. His blankee is now a necessity everywhere we go! We even now have to sneak in washing it. We call Preston 'Linus' and he just laughs! 

Someone things they are VERY funny! The zoo was a great time! 

Another random fact that everyone must know! With having 2 boys, we discuss poop 24/7  so it caught my attention when the first word was poop! 

Chillin at the farmers market with new chubby cheeks.......someone has really chunked out with these Pediasure feedings.  

MORE PICS TO COME SOON! :)

Homesick

Today has been a blah day if i am being honest. :/ We all woke up in a funk. Tim and I are homesick and a bit on the bored side. I went for a run with P today and it felt great but there is only so much walking/running you can do. We have exhausted the shopping centers and window shopping gets old. Tim and I miss the normal day to day activities. I just realized I haven't grocery shopped or cooked a meal in a month. I actually miss it....maybe not the grocery shopping part! :) We also realize we have spent A LOT of time together these past 6 weeks since school got out for summer. I think next week will be a nice change of pace for all of us. We need a break from the normal routine we have created here and from each other. Grandma and Grandpa Walker arrive tomorrow night which will be wonderful. We plan to go to the zoo and take them to Fenway Market. Preston has another nurse coming for a home visit Friday to check his levels again. They want to make sure the heavy antibiotics are not damaging his kidneys. He will also get his last PICC line dressing changed before it is pulled on Tuesday. His bottom is taking the brunt end of these antibiotics. I dont think teething at the same time is helping any. We go thru a new diaper every hour :( I even had him naked to air out his poor red tushie tonight in hopes to give it some air time to heal. We have a fantastic barrier cream and desitin and if it weren't for this duo, we would have a real mess on our hands. Poor thing! With all that he has gone through, he has become a HUGE snuggler. He was never my snuggler with me the way Reid was (for many reasons) so I am LOVING this. This precious time with him is making up for so much lost time in the early months of his life. We all took another nap today which was needed. I found myself up at 4am last night with a pounding headache and so much on my mind. Hoping for a good night sleep for all of us tonight and a speedy day tomorrow so we can see Grandma and Grandpa asap!

Latest adventures and mail deliveries :)

***More new pictures added below***


I have to start this post off with a THANK YOU! If i could share all the mail we have received, I would. The handmade cards from my cousins little girls, the pictures Reid has drawn that my mother in law sends us, cards from dear friends, gift cards from college friends, unit members, new friends and old friends, and old neighbors with notes that brought tears to my eyes (thank you Shirley), an amazing Edible Arrangement (thank you Becky!) and Preston's 1st Thomas t-shirt with matching socks!! My aunt sent an amazing care package. The list goes on and I don't want to forget everyone so I will stop there. I just have no words for any of this. The one thing we have to look forward to that is a bright spot in our day is the mail (so sad isn't it?). I am SO READY for it to be our turn to give back and package up goodie boxes and send cards to friends in need. Our night nurse, Amy, sent us here with a truck load of gift bags to open as days pass by. So fun!! And I want to do the same thing for someone else! Just know that Preston's collection box with cards and notes and a list of gifts is filling up and I can't wait to show him all the love and support he was shown during this time. And to us too of course! I would like to give a BIG SHOUT OUT to some very special friends......Brian and Mary Roscoe. Not only did they contribute a generous donation to our Preston Walker Team donation site which we are BEYOND grateful for, they had 2 HUGE boxes sent to us all the way from my very favorite pizza place in Chicago, Lou Malnatis, with 4 pizzas, cheesecake, and a Portillos Italian Beef Kit on dry ice. I almost fell over tonight when I saw the boxes at the front desk for us. Being from Chicago, this was the ultimate treat. And just in time for dinner tonight!!!! Everyone at the front desk was blown away by this and said nobody had ever been sent pizza from Chicago on dry ice! Brian and Mary- you will never know know what your thoughtfulness means to us. THANK YOU so much!!! We had the veggie pizza tonight and it was DELISH! A wonderful break from hot dogs, hamburgers, and chicken. We are saving the Italian Beef Kit for this weekend when my in-laws arrive. Tim and his dad are going to get their hands on it and cook it all up! So fun! My parents appreciate what you have done for us more than anything. You are a blessing to us and to my folks! :)

The last 2 days have been busy and filled with great things. We received a video today of Reid saying Squirrel and No. He looks like a giant :( I think about him 1,000x a day and can't wait to snuggle him and hear him talk! We found a great shopping center close by that reminds of us Town Center. We have walked the entire place twice now. Just feels good to get out even though we have nothing to shop for. Preston has been taking naps in his stroller which is totally not like us. Makes it easy to do a feed too while he sleeps! We just can't justify putting him down for a nap in our room when we are held captive there for an hour and 1/2 for picc meds every day and sometimes he is not asleep during it. We would be in our room all day. No fun! Today the hustle and bustle from the past 2 days caught up to all of us and we all took a 2 1/2 hour nap and woke up in time for dinner. It was much needed. We start our days off on a long walk or run depending on the weather. Tonight we ended it with an extra walk because we all slept so long today. We had a visit from the home health nurse today to draw blood to check his levels. Preston is too smart and realizes when anyone comes in to pay attention to him with a syringe, it for nothing fun. :( But he is patient and we distract him. Here are some pictures from our adventures lately. 

SUPER HAPPY to get out for the day! 

Sporting his new Thomas shirt while eating a piece to the train track.  Seems fitting!

I could write a whole post of this precious girl. She is forever engraved in my heart.  She is full of spunk and cracks me up and was great company while we waited for dinner the other night. We see her alot during meals and makes us appreciate Preston's minimal issues. 

Apparently standing on a sharps container is funny!

Having fun playing in a diff car than the one he has at home.

Mr. P at the front desk picking up his Lou's delivery! He thought he was pretty big stuff sitting on on the boxes and holding the pizza we ate for dinner. Thank you again Brian and Mary!

3 weeks and counting

We have been here exactly 3 weeks now.  Where has the time gone yet time seems to stand still. Its so weird! I have become a pro at doing laundry using the same dinosaur washer and dryers my sorority house had 10 years ago. Costs 50 cents to do a load. Brings back many memories. Sharing one room with Preston has been an experience.....I am sure he misses his own room and the peace and quiet it brings to him at night. But I doubt it. He thinks this is pretty fun jumping on our bed and thumbing through my underware drawer. LOL I am totally over g-tube feeds with Pediasure.....nothing says FUN like the tubing getting disconnected 1/2 way thru the feed and the smell of vanilla pediasure permeating our whole room. Or the smell of liquid poop all over our sheets from a diaper leaking. We can't find P's hearing aid batteries to save our life so the poor kid is head bandless. He is loving it! :) Its just been one adventure after another and Tim and I have never laughed so hard in our lives. You should see what we look like doing his antibiotics at 5:30am with one eye open. We could have our own reality show I am sure! We just roll with each punch and we are making the best of it. Preston had his follow up appt at the hospital this morning with Infectious Disease. Tim took him while I stayed here and did laundry to remove pediasure out of his sheets. His dr's decided to extend his PICC meds 2 more days so he will have them up until stint removal rather than going on a new antibiotic 2 days prior to stint removal. So we are 8 days away from PICC line meds and PICC line being removed and stint removed. YAY! I leave for Dallas in 7 days so Tim will hold down the fort and stay the night at CCH with Mr. P. 10 days till I get to see my Reid. I can't wait to spend the weekend at my parents house with him and just relax. Nothing is more comforting than being HOME with my folks and to have one on one time with my little lovie. Can't wait to hear him say all of the new words he has picked up according to our family. And 14 days till Preston's bronch to find out how his airway and grafts look after all this time has passed. We are on the home stretch!!!! His stoma sight looks INCREDIBLE! My in-laws arrive in 4 days and they can't get here fast enough. We miss them so much and Preston will be so excited to see Grandpa and Grandma arrive. Hope everyone is having a wonderful Monday!

New Normal

I put this new picture of our family up on the blog because it was the first summer outing we did (Deanna Rose) and I remember that day SO WELL for many reasons. I knew we would not have many chances to do things as a family of four all summer. I knew the boys would not be able to spend a lot of time together. I also knew how HOT it gets and spending a whole day outside would be few and far between. Luckily, Tim and I have had GORGEOUS weather and spend most days outside as much as possible in between nap time and picc antibiotic dosing mid day. I told Tim today that I am starting to forget what its like having 2 kids and that we might need a training course on parenting twins when we get home. Preston is SO easy going and aside from his medical issues, he is a breeze! We have been blessed with a kiddo who sits on the bed for a full hour and a 1/2 each afternoon to receive his picc meds and then a full feeding via g-tube. He plays with his toys and watches a few thomas episodes. He is a total snuggle bug and he loves goofing around with us while we sit with him. Then he naps in his crib. Once these picc meds are over (8 days to go- yay!) we are going to feel so free! Its a total pain to have to stop what we are doing mid day to come back to our room to do an hour worth of meds and food. We would do the meds 'on the go' but they have to be administered in a sterile manner so you can't just give them anywhere. :( It could be worse so we are not complaining! Tim will have Preston for a week on his own in a week and it just so happens that the picc meds end the day before I leave so Tim is going to have it much easier which makes me feel much better!!! :) I have been informed they are going on a local brew tour so thank goodness those meds won't get in the way of that important outing! LOL :) 

Today we got up and out the door early to stroll the local farmers market called Fenway Market. It was very cool. My aunt sent us a paper clipping of 5 free things to do in Cincinnati and Fenway Market was one of them. We want to go back next weekend when my in-laws are in town and have breakfast there!  We also went last night for a late evening site seeing walk to Mt. Adams. It was also one of the 5 free things to do. We need FREE right now in our life! :-) VERY peaceful, gorgeous view of the city, a great walking trail around a gorgeous fountain. Got home later than usual but it was worth it. If you haven't noticed, we now call this place 'home.' The new normal of living here has set in 100%. Tim and I were joking that we feel like we live in a compound. LOL The gates around the RMH and all the security and SAME families we see day in and day out makes it feel that way. Speaking of gates, I just hate that the surrounding neighborhood is such a poor community. :( It is not safe to leave alone. We have been told ALOT to only head towards the hospital and don't go any other direction. Another reason I am VERY grateful Tim is with me on this journey. Most of the mom's never leave RMH. I would go CRAZY!!!! Even the farmers market neighborhood was questionable once you drove out of the parking lot and down the street. I saw a homeless man sleeping on a slide in a government housing playground with a little 4 year old girl next to him on a swing. :( Just broke my heart.  

Let's talk about broken hearts. I have been REALLY affected by a few of the families we have met here and their situations. If I ever feel down, I let myself have a pity party for about 5 min. and then I am over it after reminding myself how fortunate we are with our situation. We met a nice couple with an 8 year old son a few nights ago. Tim talked to the dad while the boys played on the playground. Their son has autism and had a tracy (we noticed a scar on his neck and assumed it was due to a trach). He had the same LTR surgery as Preston 3 times and each surgery failed. :( They lost the skin grafts each time for a different reason. They had these surgeries done elsewhere and finally came to Cincinnati and his 4th surgery was a success. The dad told Tim that we certainly picked the right place to be for this surgery. First off, YAY for confirming we are in the BEST place but I was HORRIFIED and SICKENED this family has been through what we are going thru 4 times. Side note: I am believing with all my might that his bronch results we receive on the 29th will show the grafts took and everything looks amazing! I am trusting that we did pick the right place for this surgery! One mom I met this morning in the laundry room has been here for 16 MONTHS! Yes, you read that correctly......16 months! Her 2 1/2 year old daughter is waiting for a bowel and liver transplant and they have 5 and 9 year old sons who split their school year up last year to attend school in Ohio to stay with their mom and sister. They live in Oklahoma and made the decision to move here this summer permanently. So she was doing laundry to pack for their move. MY HEART SANK ON SO MANY LEVELS FOR THIS FAMILY! Lastly, Tim and I were eating dinner tonight in the cafeteria and a super friendly couple asked about Preston's trach and as we shared details with them and our eagerness for decannulation they told us their daughter is 18 years old and will NEVER get her trach out or speak (LOTS of reasons that will leave you in tears so I will spare you the sad details). What do you say to that? Lots of prayers for these 3 wonderful families can certainly be said if you want to add them to your prayer list! 

I didn't intend for my post to be this long. This journey is full of so much and I have found that writing before bed to capture our day really helps me sleep at night. I want the boys to read these details years from now with my memories being fresh in the moment. Speaking of sleep, Preston is having ALOT of secretions and is needing suctioned 4-5 times each night. I have the super early wake up call at 5:30am to administer the picc meds so Tim takes the middle of the night shifts to suction. We have never been more grateful for Amy. She is one hell of a night nurse and she is the reason why I don't have bags under my eyes the size of silver dollars.......the sleep we get at home is no longer taken for granted EVER!!!! We can't wait for this stint to come out and his secretions to lessen. I think he will sleep better too instead of coughing so much! We were having 0-1 suctions per night before surgery and going days without suctioning during the day. Only 10 more days till the stint is removed! YAY! 

In closing, I hear it is HOT in KC and lots of water activities are keeping everyone cool. Apparently, my little Reidy is a total fishy in the water! I can't wait to hop off the plane in a few weeks, get my swim suit on, scoop him up and take him to the pool for the first time (for me anyway). Until then, I will settle for my phone calls I have with him where he smiles at the phone when I talk, waves at the phone, and then tells me the sounds of all the animals I name. Just hearing his voice is confirmation that he is still with me even if its thru a cell phone connection rather than in person. 

Video of Preston saying THANK YOU!

Another great day and I was able to get the video uploaded. Preston's signing for Thank you and blowing kisses is very similar but the mere fact that we are able to have him do both just for YOU is what matters! He is also signing Reid a ton and we know he misses him a lot! Hope everyone has a wonderful weekend!

1st video of P- THANK YOU!!!!

I am happy to report the 1st unclotting meds worked last night in the E.R.! Yay! We have a handle on the PICC line by now! Due to the dosing times of P's antibiotics, our mornings are much earlier than usual and evenings are much later than usual. So we are a bit more tired and the days are going to be longer but we will manage. Only 10 more days of these meds and then they are DONE! :) Today has been awesome! The weather is gorgeous (cool in the late afternoon even) and we enjoyed our first full day of freedom with zero dr appt's or plans of any kind. We went for an hour and 1/2 walk, received heart felt mail from friends, administered meds with zero complications, went to the store for a few necessities and got a much needed Starbucks fix (thanks Kreinbrings). I also spend an hour tonight in the cafeteria after dinner visiting with 2 other mom's I have gotten to know. Really filled my cup up! This is truly a special place to be during a stressful time. Everyone 'gets it' and there is no need to explain anything. One thing I know for sure is my boys will grow up volunteering and knowing the Ronald McDonald House VERY well. It has been a true saving grace for our whole family during this time! Tomorrow we get spoiled by visit #2 from Jessica and her family. Preston is feeling 100x better than her last visit so it will be a lot of fun having her here! I wanted to end tonight with a video of P I took today. I know Tim and I can say THANK YOU a million times for all the amazing support from YOU but we wanted Mr. P himself to say THANK YOU! In the end, this is all for him anyway and I know he would want to be the one to say it if he was old enough to truly understand! :) Enjoy! 
**And of course the video won't download :( ** Stay tuned for the video asap!!! 

Roller Coaster

We are all sitting in the E.R. waiting for Preston's clotted PICC line to un clot. I wish I was joking! And we just found out that it is a 2 hour wait to see if the medicine they flushed his line with worked. If not, another dose is given and another 2 hour wait it is. We are telling ourselves that this first dose of meds WILL work! I wish I had taken a pic of Tim's face when she told us that. We are starving and need showers. Preston has had NO nap. Our room back at RMH is a total disaster. What a day this has been. And we are homesick. We miss our families and Reid terribly! No Zoo for us today :(.......we plan to go on Monday. Today was spent setting up our room with all his meds (the box that was delivered was HUGE) so we spent lunch time making up 35 packets in ziploc baggies for each of his 35 doses while we are here. The home health nurse came out to help us give his first dose of antibiotics (it is a process and my ADD does not make it easy) and in between meds (that run 30 min each) his PICC line clotted. She did every trick possible to un clot it and then broke us the news that we needed to head to the E.R. We came totally unprepared b/c we naively thought we would be in and out. WHO GETS IN AND OUT OF ANY ER???? I don't know what we were thinking. Needless to say, this journey is a roller coaster! Here's to a better day tomorrow and a SHORT ER visit tonight! Ending on a high note- my little lovie at home had a GREAT day with his Mama Tolle and we are so grateful for the love and support that surrounds him while we can't be there ourselves! Thank you Cindy for the peace of mind you gave us today while life here is a 3 ring circus! 

Terrific Tuesday

First off, we are getting discharged tomorrow! WHOOO HOOO! The only reason we are here still is because P is getting 2 antibiotics. He has a PICC line so we are able to administer these on our own with the help of a home health nurse coming out to RMH for the first dose to make sure we do it correctly. Tomorrow is discharge so Tim and I took a 1 1/2 hour PICC line/meds/sterile/ information course. That was FUN! :) Good thing I have a neck so my head didn't spin and pop off. LOL His meds will be given at 6am, 2pm, and 10pm in addition to his pediasure g-tube feeds and a probiotic. We plan to go on LOTS of walks in between needing to be in our room to  give him his antibiotics. Good thing Tim and I have each other for all of this. I am SO grateful to not be alone like I see MANY mom's I see at RMH. Thank you God for a teacher's schedule! 

I might as well make the announcement sooner rather than later........Tim has a girlfriend! Her name is Keira and she is an adorable blonde who is 3 years old and she currently resides at RMH with her mom Shannon. LMAO Tim ate dinner the other night with her and her mom since all of the tables were full at the dining room at RMH. Ever since that dinner, she is constantly trying to find him and asks me when she see's me "Where is your boy?" LOL So apparently is now 'my boy' and not my husband! :) She is in a wheel chair and has spina bifida and the most precocious 3 year old I have ever met. She does popping wheelies with her wheelchair. Pretty funny! She loves looking at pictures of Preston on my cell phone and saw his 'stash' pic and asked for one so we shared the wealth of stickers with her. She now has her own stash! LOL We are really enjoying being at RMH. I truly feel God has led us here for MANY life lessons that we needed to learn. I have to believe this or I will go crazy wondering WHY we were the ones dealt these cards. It gives me peace! Some of these kids are VERY VERY ill and makes us grateful for Preston's minimal issues (even though it feels like alot to us at times).

We are very anxious for my in-laws to come visit for several days next week! It will be great to have family here again and more help with Preston. I see more Graeter's ice cream stops in our future. :) Last night Tim and I were tempted to go for an ice cream stop after Preston fell asleep but instead we went back to RMH together and put on running clothes and went for a long walk. The food at RMH can cause a 10lb weight gain just looking at it. LOL So we are trying to walk and eat healthy and it just so happens that it was the best evening we have had together all summer. It felt like a typical summer night  we used to have before kids were in our life. We would walk around 8pm when the sun was down but it was still hot enough to get a good sweat going. A great chance to catch up and talk about all sorts of things. Except this time we were in a different city with twins and one baby boy at home and one in the hospital fast asleep. Crazy! Tim and I realize we have a different situation than most couples who have a child inpatient. Our son actually likes his nurses and feels VERY at home in his hospital crib. Maybe this is because it has been apart of his life since birth with multiple surgeries under his belt. None the less, it gives us a bit more freedom to get out of the hospital to get a breath of fresh air TOGETHER. So much so that Tim and I slept at RMH together last night and got an awesome night sleep. Preston did awesome and was still asleep when we got here at 8am this morning. What a GIFT!!!!!!! Seriously! 
It is going to be hectic tomorrow getting him out of here and arranging his meds/feeds/home health so we are grateful for the wonderful night we had together. 

This is what we found on our way back from PICC line training today. I think it's safe to say P is one spoiled and loved little guy on the Airway floor.  He loves his nurses and the LOVE him! We feel blessed to be in such a loving and special place!

I am leaving in 12 days for Dallas for my annual work seminar and it is going to feel more like a mini vacation than 'work'. I am counting down the days to see some of my closest girlfriends and celebrate the phenominal year my MK Unit had! I am one proud leader of my AMAZING consultants!!!! Its been a year of excitement and blessings! I am looking forward to lots of prizes, recognition, fun, and the chance to share Preston's story! I can't wait! I was scheduled to fly back from Dallas to Cincinnati (where Tim and P would pick me up) but after skyping with Reid and the heartache that caused, Tim said I need to fly to KC instead and be with him for a long weekend. Thanks to some VERY VERY special friends for helping arrange this change in schedule and book an extra one way ticket from KC to Cincinnati, I will get to be with my other lovie for 3 whole days after my trip to Dallas. Then I will go back to Cincinnati to be with Tim and P right before Preston has his bronch in the O.R. I am OVER THE MOON and have a new sense of energy now that my flights are changed and new one is booked.  I might just sleep in Reid's crib like I have done with Preston!! LOL LOL Just kidding!!! 

Tim and I want to give a HUGE shout out to many friends who have sent packages and cards. They keep coming and we are speechless. I have a collectors box for Preston with all the cards, notes, and gifts. He is one LOVED little boy! And we are so loved by YOU! The donation website has left us in tears (literally). THANK YOU from the bottom of our hearts. We don't feel deserving of this generosity and kindness and support. We are still getting mail and pkg's at the Hampton Inn and many of you have asked for the address to RMH so here it is: 350 Erkenbrecher Ave Room50 P.Walker Cincinnati OH 45229 

Preston has a new favorite puppy in his life.......Mr Puppy Pillow Pet thanks to the Hisles who are our dear friends! What a bright spot in our overwhelming day! The package of goodies were perfect!!! 

Lastly, after much thought and discussion, Tim is officially registered to go back to school in the Fall to receive his Education Specialist Degree to become a Principal. He will graduate from MU with this degree and here is an appropriate pic with this news. Preston thinks he is pretty cool with Tim's hat! It excites me knowing we will celebrate this future accomplishment of Tim's with Preston being trach free! Something to look forward to! :)

Love these 2 boys more than anything (and my other little MU fan back home of course too!)

Wish us luck as we discharge tomorrow with a GREAT rest of the week ahead of us! Hope you all do the same!!! 

Update: 2 weeks down and 4 to go!

Update 7-8-13 After the Dr rounded on P this morning, we found out we will be here all week and possibly next week too. They want the antibiotics to all run their course and make sure his neck his healing the way it should be. Back to hospital food :( Looks like the salad bar will be my bff again. We will be taking turns making a trip to RMH for dinners hopefully. As much as this stinks we are glad Preston is in the best place possible and we caught this super early!! We are settled in for the long haul watching an oldie but goodie right now......The Land Before Time (Thanks Sean for sending all the movies for P). Reid is at my sister's house playing trains with his cousins and I already got 2 pics on my cell of him with big smiles. Makes me so happy knowing he is having a fun day at Auntie and Uncle's house! :)

We have been here for 2 weeks now and it sure doesn't feel that long. We are 1/3 of the way to being HOME. Preston is doing MUCH better! His meds are working great and he is feeling so much better. He has decided he loves pillows so he now sleeps with a full size pillow and thinks he is a pretty big stud. He looks like he is 5 when he is laying on it watching a show! :/ Still has very little energy and walked a few steps today but that is about all. He is on 3 diff types of antibiotics due to his cultures showing bacteria growth. He has special dressing with silver in it for his stoma and his neck looks so much better already. I have no idea how long we will be inpatient but we are in no hurry for discharge to ensure P's neck heals 100% and his dr's feel his meds are working properly. We enjoyed a nice quiet weekend in the hospital. I dread Monday's because it is so noisy but we are eager to see P's dr and consult with him about everything.

We skyped for the first time today with my inlaws and Reid. We have been so busy and overwhelmed since we got here and today was the first 'down' day we have had just hanging in P's room so we decided to give it a try. Well, that was the hardest thing I have ever done in my life. Buckets of tears on our end. :( Reid was confused and then excited when he saw all 3 of us talking to him. He and Preston were reaching for each other and signing each others names. Reid blew kisses and I lost it. I just see how big he has gotten (full mouth of teeth and all) and he didn't understand when we said goodbye. He started to cry a little bit and I just couldn't help but sob. Poor Tim......he didn't know what to say but he has been so supportive. I know Reid will never remember any of this but it is still so very hard. Tim and I made the tough decision a few days ago to not have my in-laws bring Reid with them in 2 weeks when they come to visit. We have a list of reasons and they all make perfect sense in our head. Our hearts are aching to see him but the trip would be a mess if he came! So, we are forging ahead to a new week and trying to stay positive. We are looking forward to what this week holds for all of us. I would give anything to be home and celebrate my sweet nephews b-day with my family. I hate missing milestones like that while we are gone. It sure makes us appreciate the times we ARE there and all together! Wishing everyone a wonderful week!!!!

A taste of freedom

We were out of the hospital long enough to get a taste of freedom but unfortunately we are back in the hospital. P was readmitted to the Complex Airway floor yesterday afternoon. After the worst night we have ever had with Preston on the 4th of July, we woke up and noticed some blood staining on P's dressing under his trache so we decided to call ent and they asked us to come in to clinic so they could take a look at him. It was at that moment i was SO GLAD we decided to stay right here for the summer. There is no greater piece of mind than being a walk away (literally) from RMH to CCH. Plus we have appt's with nutrition to weigh him and evaluate his feeds. He has been super fussy and very lethargic. We knew something wasn't right. They decided to admit him right away. His stoma sight looks worse and is the size of a quarter and its pooling with secretions. They swabbed him for a culture due to possible infection. :( The wound team is now rounding on him as well and he has a new dressing which will kill bacteria and help his skin heal.  Our favorite fellow is overseeing him and glad he is back here. Jessica and her family were here for lunch yesterday and it was wonderful having pizza and catching up. They brought us some goodies and my favorite scented hand sanitizer from B&BWorks. Sad that I get SO EXCITED over hand sanitizer! LOL Then Jess actually headed to clinic with me so she could see his stoma and what we were dealing with. What perfect timing!!! As we were walking to CCH for the appt, it felt just like we were at home headed to the dr but just in a different city. I find so much comfort in her presence because she is apart of our day to day life and knows EVERYTHING about P. Tim had fun staying at RMH with her kids, mom, and my folks and playing in the HUGE game room! All the fun was over once we headed to admissions but I have learned to never take the fun times for granted. Especially now that I am sitting with my mom in a dark hospital room with my sleeping little man who just received PICC line #2 this morning. I can live the rest of my life never going thru that again with him but I am so glad he has it in and we don't have to mess with IV's. Laundry is going (fun fun) and my dad took Tim for a Starbucks run. Just another day in paradise! :) Reid is having a great weekend with Grandma and Grandpa Walker which makes me feel so good!  They go above and beyond to make sure his is happy, fed, loved, and burning off all his energy! I am so blessed to have them! Reid gets to spend Monday, Tuesday, and Thursday with my sister and his cousins and favorite doggie Maggie and then Wednesday will be spent with his Godmother, Mama Tolle, so he is in for a VERY FUN week! :) Sadly, my folks leave today and it will be hard to say good-bye. They have been here for the most hectic week and I just love their support, empathy, and positivity! We have also had some great laughs which we need! :) Here's to a successful weekend of recovery at CCH for P and a huge shout out to my FAVORITE NEPHEW Will! HAPPY 5th BIRTHDAY on Monday buddy! Aunt Lou Lou loves you SO MUCH and I would give anything to be there for your celebration and give you a big hug and kiss! I miss you!!!!