Iowa City, IA- 2nd opinion

I am finally getting around to downloading pics from the camera (I take too many with my phone and need to get better about taking more with my camera). I came across pics from our road trip to IA to get P's 2nd opinion of his airway. This is where we met Dr Smith who agreed that traveling to Cincinnati is a GREAT idea. Preston is a fantastic traveler so it made the trip very easy! Let's hope he is just as great with flying come May!

Crashed out on the way there!

This was such a special moment for me to bring Preston to the Little Amana General Store in the Amana Colonies. We grew up stopping here every single Christmas trip on our way to visit family in Illinois. We stayed the night at the hotel, swam in the pool, and my sister and I always have fun 'shopping' at the general store and buying their candy and seeing the toys. We HAD to stop on our way to see Dr Smith.

We have arrived! Off to the Ronald McDonald house to get settled.

Waiting to see Dr Smith! I was a nervous wreck.......just wanted good news and we got it!

Someone had fun in the waiting area.

Tim and his mini-me

Crashed out on the way home! 

 

 

 

Adventures of our stay on the PICU/Peds floor

Well folks, it seems that our little trooper LOVES to be here. So much that he is not wanting to stop weezing and be weened down to treatments every 6 hours. This mama is tired and ready to be HOME. I miss Reid and I want Preston to be able to sleep SOUNDLY instead of being woken up every 4 hours with RT coming in for treatments during the night (and during naps). Looks like we are here for at least another day and 1/2. That will mark a week that we have been here. Could be much worse! Things will start to get tricky since Tim's spring break is coming to an end and he goes back to work tomorrow. My parents will watch Reid till we get home. Prayers for a smooth transition would be great! The weather is not making it easy to come and go either. I stayed with P last night so Tim could finally go home and get a great night sleep and I will be here till discharge. Tim was able to clear the driveway and brave the roads today. My bronchitis is virtually gone and I feel great. Grateful for meds! I was able to take an awesome shower here today once Tim arrived and Preston is now napping. We have a good routine here so that makes the day go quickly and our nurses have been awesome. We have been couped up so we asked if we could take a little adventure to the cafeteria for lunch and take Preston with us in his stroller. He is in isolation (which means he can't leave the room at all and everyone who comes in has to gown up first) so we were THRILLED when she said we could take him if he wore a mask. NO PROBLEM! And to our surprise, he kept it on and LOVED his field trip! Of course we got him french fries so he was a HAPPY CAMPER! We had several people see him in the cafeteria and then look at us with this smile that had pity written all over their face. I hate that. I have to admit, seeing him with a mask on was a little bit a reminder that we do have a sick kiddo who has a compromised airway and life is just not 'normal' and I am FINALLY at peace with all of this. I am so proud of how resilient Preston is and how well our families have accepted this 'temporary' lifestyle that we live. We are so paranoid about germs. I am being hard on myself because I just can't figure out how Preston got so sick when we literally have kept both boys home ALL winter. We have not had many visitors and hand sanitizer is in every corner of the house for all to use. We have barely gone ANYWHERE (I even go to MOPS without my kids LOL...I am sure I am the only mom who gets a babysitter for her kids so she can go to MOPS but I can't risk taking even Reid and exposing him to germs that he will bring home to Preston). Kind of a funny feeling walking in with all of the moms who are toting their little ones and I am empty handed. Oh well! I don't want to miss out on the times with my sister and dear friends who go to MOPS just because I can't take the boys! It has been hard keeping the boys home but it was to keep this type of illness from happening. Scary to think of what he could have caught if we hadn't kept him home bound. I keep telling myself that one day this trache will be out and we will be FREE from so much that goes along with it. Of course any kiddo can get pneumonia but preemies and trache babies are so much more susceptable.

I always try to find the positive in every situation (otherwise i can become pretty down) and I have certainly found it while being here this time. I learned that Preston's little neighbor was attacked by a dog and she is here recovering from her FIFTH facial reconstruction surgery. My heart just hurts for this sweet girl. She has kept her door open several times so I have seen her in passing and she looks terrible. :( Her lips were chewed off and she has HUGE scars all over her face. It just so happens that she is the patient of Preston's facial plastic surgeon Dr Andrews. I happen to run into Dr Andrews yesterday in the hall and he was surprised to see me and asked why P was admitted. In our discussion he told me about his patient (not many details due to HIPAA) and then the nurse filled in the rest of the story. She was attacked over a year ago and still has 3 more surgeries to go. The nurse said she looks 100% better than when she came in emergently from the attack. We are so fortunate to be here for an illness with medicine to clear it up and Preston will never know he was here where as this little girl has scars for life that will always serve as a constant reminder of her attack. This little girl can surely use extra prayers! Below are some pics of our adventure this past week! Can't wait to post a picture of our discharge! :) Stay warm and safe and thanks for keeping us in your thoughts and prayers! We feel lifted up for sure!!!! :)

Getting a chest x-ray as soon as we got to the ER.....dad suited up and held him down. :(

Not a happy camper......couldn't breathe well.

Getting an hours worth of breathing treatments when we found out it was viral pneumonia and he started to calm down.

We make a way, find a way to get a good ole bath in around here once feeling better and transfered to PEDS unit! He loved it and needed it badly!

Still in PICU and the sight of his first smile was great! Best buds for sure!

Thank goodness for highchairs in the hospital. Glad to see him start eating and drinking again!

One of his favorite toys! Finally looking like himself. No more gown......graduated to a real outfit once we got to the PEDS unit!

Off to the cafeteria! Hooray for leaving the room!

Is he not the cutest little thing or what? :)

Dada getting fries for Mr P.  

The magic ticket to my son's heart.....a french fry! Just glad he is doing MUCH better!

Playing it safe

We just found out we will be here at least till Monday. Preston is doing much better but he still can't seem to tolerate us spacing out his breathing treatments from every 4 hours. He is still weezing a ton :( As much as we would LOVE to bust out of here, we are glad the dr's are taking it SLOW with his recovery and playing it safe. We don't want to end up back here and would rather take things slow. He is eating like a horse. He may need some dieting retraining once we get home. French fries and buttery grilled cheese is not something I plan to serve him 3x a day everyday! LOL He does love his bananas and yogurt still. I am just glad he is eating so well. We are still g-tubing his milk but he is taking some by mouth too so that is a weaning process too! Thanks for the well wishes and prayers! Hopefully we will be home sooner than later! Hope everyone is having a great weekend and staying warm!!!!

Moving Day

From Tim
Today Mr. P is moving from the PICU to the General Peds Floor, which is the same floor and actually just on the other side of some doors. But he is moving none the less, which means closer to coming home. We thank everyone for your thoughts and prayers as he is on the mend. His breathing treatments need to be spaced to every six hours in order to be released. This can take as long as it needs, as we want to be sure he kicks this before he is paroled.


Meanwhile, back at the ranch, Reid is constantly looking for Preston and keeps going in his room and making noises for him. Lorna is doing a great job managing between the two locations. I feel for her. It has to be hard being torn between being home and being at the hospital. I know she is ready to have us all under 1 roof.

May 7th

Hi friends!
I am overwhelmed by the inquiries about Preston today! WOW we sure have amazing support. Everyone has been praying for him. THANK YOU! I will be updating more frequently thru this blog until Preston comes home. He is doing a little better. He is off oxygen and they are finally able to space out his breathing treatments from every 2 hours to every 3 and we will see how he responds to these. Oral steroids seem to be helping too! Still not wanting to eat or drink ANYTHING so once again, we are grateful we have his mickey button for feeds and fluids. G-tubing milk and pedialyte is not the direction i wanted to see him go but this is temporary and it helps him avoid an iv for fluids and ng tube for milk so that is GREAT! We started tylenol last night since we think his throat is raw and sore from the constant suctioning and caughing. Hoping this helps food and milk go down easier once he starts taking everything by mouth again. THANK YOU for your prayers and thoughts! We have been blessed by wonderful friends bringing meals to the house and offering to watch Reid. Our family has brought us Starbucks and Panera since we can't seem to step away to the cafeteria for food as Mr P is VERY VERY VERY clingy and hooked up to a million machines so we can't take him on a field trip to go with us! THANK YOU for the generosity! We are BEYOND appreciative! He is scared to death of anyone who comes in his room besides me or Tim. Poor guy! Looks like Preston will be staying in the PICU till his treatments go to every 4 hours and then talk of transferring to PEDS unit will take place. The nice thing about that is there is a shower for us in those rooms and more space. Right now we are playing tag to go home and shower and get clean clothes. A shout out to the MOST AMAZING FATHER AND HUSBAND on the planet! Tim has been with Preston overnight since admitted so i can go home and sleep in our bed and get GOOD rest to get rid of my bronchitis. He is so hands on with Preston and all of his needs (and has been since Day 1 when I was nursing Reid and taking care of him etc). Tim and Preston have quite the bond and it makes my heart so FULL to see them so close! Tim was born to be a father for sure and I don't find it to be a coincidence that he fathers a special needs son. Totally his calling! I love how God works in our lives so appropriately! One final note: Preston has mastered signing Mama and Dada while in the hospital and it has been so fun to see him sign for us! Yay P! :)

I am on my knees (literally) praying for May 7th to be our LUCKY date for Cincinnati since that is our new surgery date! They would not see Preston any sooner due to his current health status and I am glad they are taking all precautions even though I would LOVE to get there sooner. Flu season will be over and germs will be less risky and it will be a better time for Tim to be gone from school so I am feeling good about this. I am booking airline tickets today and from what I see, the flights aren't nearly as convenient as the past 2 times we have booked flights. Changing planes and long lay overs but I will take it. It will be an adventure for sure!
More updates later! 

Third time is a charm, right?

Well, I am sitting here in the PICU with Mr P. and Tim and I have a million thoughts going thru my mind. I hate seeing Preston so sick. He has viral pneumonia and is on a pantry full of meds and breathing treatments which seem to be helping. He will be here the rest of the week and possibly the weekend. Prayers for Preston's complete recovery would be wonderful. I don't want him discharged too soon and wind up back here. Really glad we followed our gut and took him into the E.R. last night when he took a turn for the worst. We are in the right place for sure!!!

I was scheduled to go to Omaha Friday and Saturday for an mk trip so I am staying put instead and can always go next year! I need to be here for ALL of my boys! :) Pretty bummed though...I was really looking forward to the girl time and break from everything! Reid still gets to have his fun weekend getaway at Grandma and Grandpa Walker's house. He loves running around at their house and playing on the floor with all of his toys! Thank goodness for our babysitter Katie who is the BEST nanny, lifesaver, etc (my friend Megan refers to her her babysitter the same way) and she is holding down the fort at home with Mr Reid. She is tackling 4 giant loads of laundry and washing/stuffing my cloth diapers as I am typing this. I seriously feel like God hand picked her for our family and aligned her schedule with ours just when we needed her! I am so grateful! My folks helped us with Reid last night and my in-laws are helping tonight and tomorrow and this weekend with him. Reid LOVES the attention! :) Thank God for family so close by! Makes this much more manageable.
 
As many of you know, we are re-scheduled to fly out on next Wed to Cincinnati for Preston's 3rd opinion of his airway and procedure (they will scope his airway in O.R. to determine a decannulation plan). We are having to cancel the trip again. 3rd time is a charm, right? At least that is what I am telling myself. We have been so fortunate to get thru one of the worst flu/sick season's with flying colors. Neither of the boys had even a runny nose......until right before our 1st trip was booked. Then Preston got sick days before we were supposed to leave. Re-booked it and now he is in the hospital. I am believing this is God's way of saying it is just not Preston's time right now. Very hard to swallow since Dr Smith in Iowa gave us so much encouragement about the near future and having Preston's surgery early this summer (which would result in his trache coming out). We just need Dr Rutter's eyes and expert opinion in order to move forward. I have always been a planner and type A personality so the unknown drives me crazy. I am learning to take each day as it comes and fully understand that this is not MY plan. It is His. Why is it so hard to do this? I will post our NEW date for Cincinnati once I hear back from scheduling and get it booked. I am thinking it will be the end of April but not sure.

I will NEVER be able to say enough how much YOUR prayers, support, and encouragement mean to our family! Tim and I feel lifted up constantly and sometimes we don't feel deserving of that. To say we have the BEST of the BEST family and friends is an understatement. Thank you for the calls, texts, and emails checking on us! It means the world!

A day I never thought would come!

There was a time when we thought Preston would never take his whole bottle. He was so eager for it (sometimes) but would tire out quickly and then we had to g-tube the remainder. It was frustrating but we finally got him to take the full amount. Then he started having a love affair with his bottles and you couldn't give it to him quickly enough and he wouldn't let it go. He LOVED his bottle! I knew once the boys turned a year old, i wanted to wean them to a sippy cup and Reid had no issues. Preston on the other hand wouldn't give it up. I tried EVERY kind you can imagine (or so i thought). So I decided not to fight it and we let him stay on it. He would play with Reid's sippy but it seemed as if he didn't know how to suck the sippy to get the milk out. He learned how to do a straw sippy cup but even that was tricky. We went to my in-laws recently for dinner and forgot their straw sippy cups for water at dinner time. So i decided to try the sippy cup they keep at their house for Reid and Preston took right to it. I was shocked. It is the ONE cup i never tried with him. The nipple on the lid is shaped differently just enough to where it worked for him to suck and he loved it. I thought it was a fluke. So we took it home and tried it with milk the next day and he did great. So, I packed up his bottles and we are DONE with them for good! A day I never thought would come! When I think back to all of his feeding issues and serious concern everyone placed on them, I just can't help but smile ear to ear in regards to ditching his bottles! He is such a little stud! :) This will also make traveling to Cincinnati in a few weeks much easier!!! 13 days till we leave.....I am not counting or anything!!!! :)

We are also celebrating another milestone for Mr P! Today, he graduated from OT and will only have speech from now on and will receive weekly services once his trache is out to help him talk and communicate at 100%. Hard to believe a year ago today we were having our Infant Toddler mtg to set up services for P and made his goals and weekly visits for OT services and speech. It seemed so overwhelming! Now we are moving right along with nothing abnormal about his development! He is such a little miracle. I'm a proud mama today! :) I also owe so much of his development to our amazing day nurse Jessica who works diligently with him everyday to reach these milestones! Thanks Jess!! What a great day! 

Re-booked and ready!!!

Already have a new surgery date and it's only 3 weeks away! March 27th can't get here soon enough! Next date wasn't till mid April. Flights already re-booked (not as great of a flight schedule as before and we have to change planes coming home but I will take it) and Preston is eating and drinking and playing for the 1st time in 3 days. We are on the MEND. Hooray! Also amazed at what a great night sleep can do for the mind and spirit! Here's to a GREAT week and thank you for the kind thoughts and messages friends! They mean so much!!! I should have taken a picture of my house after a morning with just me and the boys (no nurse or sitter) and I was on the phone rescheduling with the O.R., rebooking flights, rescheduling Ronald McDonald House, and calling Tim a million times at work to make sure I was picking the right dates with his work agenda. All while the boys were eating breakfast, Reid was hitting Preston with his sippy cup in the head over and over, and food was flying everywhere. LOL The boys were LOVING the freedom and thank goodness my house got cleaned today! :) Boys are napping and this mama is going to shower and do the happy dance that God truly has this trip in His hands and not mine! What a relief!

Why?

This is a question we have been asking all weekend and especially today as we had to unfortunately cancel Preston's trip to Cincinnati for his bronch (and 3rd final opinion of his airway). We were scheduled to fly out tomorrow at 7am. He has been super sick since late Friday, went to urgent care Saturday with a 102 fever, and due to his right closed ear issues, he really shouldn't fly with his ear infection. After discussing the options with his dr in Cincinnati on Sat and following his advice, we waited all day today to see if he was going to turn the corner in a major way in order to go. It just didn't happen. We felt like we were forcing it to happen and in our gut we knew we should cancel our flights and go when he is 110% healthy. I can't even begin to explain how disappointing this is on so many levels. :( As much as I would like to be really positive right now and say I feel like this is God's plan even though we may never know why (and I do believe this), I am having a minor pity party. Okay, major pity party. Buckets of tears were shed when I dug myself out of denial and we made the call to cancel his surgery and cancelled flights. I am not trying to be dramatic but I know this trip was going to give us LONG AWAITED answers and I would do just about ANYTHING to get them! We are longing for normalcy for Preston and our family in a MAJOR way and I know this trip will give us a timeline for that. I know it could be MUCH worse and I always try to look on the bright side with situations thrown our way but this time it's harder. We were all packed which took alot of strategy and time with all of P's equipment, had arrangements all set for Reid (which got rearranged twice due to my mom becoming really sick), had nursing for the next 2 1/2 days/nights CANCELLED and I had cleared my work schedule completely b/c we thought we were going to be gone. So, we are working on new arrangements for the week (I am determined to make this a GREAT week starting tomorrow :)) but I still just want to know WHY! I plan to call the hospital tomorrow and get Preston back on the operating schedule ASAP with Dr Rutter and rebook our trip and we will go from there. I can't THANK YOU all enough for the kind thoughts, prayers, and words of encouragement regarding this trip. I even received lots of wonderful cards from friends in the mail wishing us a great trip and keeping us in their prayers. WE SURE ARE BLESSED EVEN WHEN THINGS SEEM TO FALL DOWN AROUND US SOMETIMES!

On a very positive note.....despite the sickies we dealt with all weekend, our favorite night nurse and Reid's babysitter came over so Tim could take me out Saturday night for a wonderful Birthday dinner/coffee/dessert date to celebrate. It was an evening that reminded me how GRATEFUL I am to have Tim as my partner through this journey. It is stressful and could pull us apart in a split second if we let it. We REFUSE to let this circumstance do that to us! So Tim made sure our date night and my birthday celebration still happened (he insisted i get out of the house for a few hours since I wanted to stay home) and it was just what we BOTH needed! I will be posting the NEW travel date hopefully tomorrow!