Day 2 in the books

Day two went off with out a hitch. P did go to bed super late last night but did sleep until 9 today, so that made up for it. We were at the hospital by 10:15 to get set to go under for a CT Scan, although I was not convinced that he needed to be put under. Other than the fact it would eat up more time, I hate to put him under if it is not needed. After consulting with nurse and the child life specialist showed him what to expect, we went back for the CT without sedation. He did great and he held his breath and followed directions to make it a success. For the CT scan we needed two things examined, his lungs and temporal bone. We left there and went to eat finally.

The temporal bone scan is for the Docs in KC to see of the ear bone is thick enough to start to mount his hearing aid. 

After the CT scans and eating, we went to the Cincy fire museum. He loved it and it was cool to see the history. I know my grandfather, who was a volunteer fireman, was smiling down to see the fun P was having.  He was not able to climb on the trucks like we could when we were kids but he loved to see the tools. We were then going to go to the zoo, but I remembered we had another office appointment. On the way back to the hospital we made the pilgrimage to Graeters and P had chocolate choclate chip and I had salted caramel chip (new) and mocha chip.

We then saw the GI doc and the Pulmonologist. They will see him tomorrow. The GI will go an EGD and check acid reflux, take some biopsies, and wash a little out of the stomach and esophagus. The Pulm will look in the upper airway and down to the lowest depths of his lungs. He will do a lavage of his lungs and gather fluid to look for any anomalies and see why he can  have persistent coughs.

The day ended with us going to a park and then intending to go the river front areas to walk around, this was changed when he fell asleep on the way there. We came back to the hotel so he could drive his new RC car.

Tomorrow is the bronch with Rutter and company. We may need to do a clinic visit on Thursday or we get to come home. 

He thought it should have icing and sprinkles instead

First meal of the day chocolate muffin

Following directions

So brave!

Pumping Water

Like the cows in KC, cincy has a connections to pigs. I will have to find out why.

Hiding from the Docs

We needed more room, so we went to the patio.

Waiting to be seen

Best Ice Cream EVER, says P

No walking for me

'17 Ahrens

Another Ahrens

Day 1 under our belt

We got the first day of testing out of the way and P was a trooper. Since he was due for an esophagram at 9:30, we are in radiology by 9 and he could not eat until we got back in the room for the X-ray. He did great listening to the directions from the Doctors. P got a kick out of the Dr's because one had a Captain America patch on his lead suit and the other Dr's name was Preston. So P thought it was a game like "Simon Says", except it was "Big Preston Says".  He got the pleasure of drinking Barium, which is thick, white, milky, and tastes gross, and the Dr's got the pleasure of watching it travel down to his stomach and then watch it move into the small intestines. He rolled left, right, on his back, left again, right again and won the game of "Big Preston Says".

The best news of the day came in the form of being able to move his swallow study, the vertical portion of the party in the X-ray, up so that we did not have to return later in the same day. We got that out of the way and he rocked it too. There was one little glitch and he had to repeat some steps and still did well.

We spent most of the day at RMH playing, since we are only able to stay for the one day. He basically walks around like a mayor and thinks he knows and owns the whole place. "Hey dad, let's go to this play room, you remember this one it has Jake's ship."  I am not sure how he remembers it. We saw lizards out on the play ground too and he was sure to report it to the staff at the front desk.

We have checked into the hotel and are now in close quarter living for the remainder of the time here. I think it will be Thursday when we are able to head home after a clinic visit with the ENT Team. Tomorrow it will be operation "not get cooped up" after we head out for a CT scan, which I think he can sans anesthesia. We will have to see about that though.

No real results today but all the people looking at the scans said they looked good. 

Below are some pics from today and yesterday.

All my bags are packed and look who made the trip Leo and Bumble

Costumes to checkout for Halloween at RMH

New RC car from RMH, man this place is awesome, and P said Reid will FREAK OUT!

Who doesn't love your friendly neighborhood Spider-man?

One of three playrooms visited today

No scary clowns here just Ronnie

This is for Reid. He wanted to see the lizards; we saw about 7.

Ready for the close up with his toys to occupy him.

Waiting to be called back

His best Hulk face.

The long awaited/delayed return to the City of Queens

Today P and I, Tim, head off for the much delayed return trip to Cincy. The overall goal being to get to the bottom of some persistent coughing and gagging. Although, we think his love affair with chocolate milk plays a huge role in the gagging. We have a battery of assessments planned and hope they all go off with out a hitch, especially since he has not been 100% for the last few weeks. Monday kicks off with CT scans, Tuesday is video swallow studies, and Wednesday a scope of airway, upper GI, and lung washing. We get to add a GI doctor this time around to see if he has a tracheal esophageal fistula, which is a tiny opening between the tube that allows for air and liquid to pass below the epiglottis. Sorry for the anatomy lesson, but that is what we learn.

We will keep you all posted as to the goings on and the misadventures. P has movies to watch and I can still listen to the Chiefs game. I will let you be sure to offer full reviews of the Graeter's Ice Cream Flavor of the month as well.

Dusting off the keyboard for an unexpected update and request for prayers.

Well, life certainly has a way of twisting and turning just when we least expect it. I thought about wrapping up our blog a few months ago and brushed it off. I never thought in a million years I would be back on it with a medical update and asking for more prayers. I will cut to the chase. 

Since Preston's 1 year follow up scope last May (the last update I made to this blog) his health has been OUTSTANDING! He was cough free for almost 8 months! He had a hospital free winter which was our goal and Dr Lewis (his A.M.A.Z.I.N.G. pediatrician) did everything to see that happen! Kept Preston on his radar with any illness that seemed to creep up. Then February came and the cough returned.

Preston has been battling this cough/gagging/throat clearing issue since then and after many months of 'treating' it in every way imaginable while it got better and then worse again (swallow study, GI dr etc), Preston's pediatrician thought we should get aggressive to get to the bottom of it even more and we agreed! We lined up a scope with P's local ENT and checking in to KU the night prior for fluids and meet with GI again and feeding team. 

After the scope yesterday, we knew something was up once we saw the Dr for post op consult. He shared with us that P's airway is so much more complex than anticipated (it is malformed if you will) and he didn't have the ability to scope and suction given the complexity of P's airway. It would have caused more harm than good and swelling has always been P's issue and if his airways swells shut, there is no other option for safety to his airway other than a trach again. 

Then the CRAZIEST THING EVER happened. We met Dr Langner in post op (who is the attending PICU dr) and he started talking with us about the findings in the O.R. and shared with us that he remembers us from Cincy and took care of P on the PICU floor and even remembered his room # from 3 years ago when he was a Fellow. Say what? He knows EVERYTHING there is to know about what Preston has been thru and how complex his airway truly proves to be. He is the reason why transport to Cincy was going to happen. He spent 3 hours arranging everything and talking to P's Dr and the other ENT's to ensure someone could get him in the O.R. upon arrival. Talk about God SHOWING UP when Tim and I were not expecting all of this to happen. 

We have been in the PICU at KU and after an unsuccessful scope (that was planned a month ago) in the O.R. yesterday, we were preparing for Cincinnati Children's transport team to pick up P tomorrow morning via private jet so he can be seen and scoped by his ENT/surgeon who knows his airway best (after all, he rebuilt the darn thing himself) get to the root of the issue that caused us to plan the scope after all.  Only 1 parent could go so that was weighing on us heavily. Well, things went from good to puzzling to bad to disappointing real fast. Preston had a viral panel done yesterday and it tested positive. Cincy denied him due to the complications that could arise (and a possible wasted trip) from having a virus. His coughing is out of control. Transport was cancelled and P's ENT is requesting to see him in 4-6 weeks. Preston is on heavy steroids and meds to help him breath, control his coughing and make everything manageable from home. The roller coaster of emotions the past few days has been more than we anticipated to say the least. 

During the past 4 years of our family being divided at times and the boys being separated, I was rest assured by the ages of the boys. I knew they were young enough to not remember any of it and being apart didn't weigh heavily on either of them. Sadly, that is no longer the case. This has been a very different and difficult experience for all of us. Preston is SO brave but he was crying for Reid and asking a million ?'s b/c he was scared. My heart breaks for him. He didnt ask for any of this. He is so obliging for his nurses and he melts their heart. Saying please and thank you when they tend to him. It also helps that we literally know 1/2 of the nurses on Peds and PICU which is so great and a nice 'perk.' They are the BEST!!! I can handle the chaos, uncertainty and life in the hospital just fine. Its second nature to me. I struggle with knowing Preston may have memories of more hospital visits, being away from Reid and other random things that will be stored in his memory bank. I worry about his airway still. I want his cough fixed and I welcome a season of 'sounding perfect' like I heard from Dr Lewis last winter. Looks like trips to Cincinnati are in our future for awhile for scopes. I am holding on to God's promises and faithfulness through our continued journey of being TRACH FREE FOR P. 

Here are some pics from our stay. He was all about attention at first. As time marched on he was not too hip about being there. 

Ready for his grill cheese and chocolate milk to arrive! 

Movie time and settling in

Snuggles with Daddy- This man is the BEST father! 

Asked to go home and see his brother 

snuggling with Leo and Bear Blankie (from his Mama and Papa Tollie)

The evening after being in the O.R.- he was feeling like crud

Aunt Kim brought dinner and a puzzle Reid made for him that day at Kaleidascope

Smiles after a good night sleep

Finally got to get a bath, dressed, and go to play room and found a paw patrol game. 

8 month follow up in the books!

8 months later and trach free, we have great news! Preston's airway looks P.E.R.F.E.C.T- words I never thought we would hear. Seems surreal. Follow up with Dr Rutter for airway is in 1 year! He was very pleased with how P looks! Hip Hip Hooray! :) His stoma is completely closed and we got the green light to SWIM! Another celebration! 

Now for the 'questionable' news. We requested Pulmonology to be apart of this scope b/c Preston has a nagging cough he can't seem to kick. With a week long ICU stay this winter and another 1 night return inpatient stay for various reasons and a new cocktail of meds that seem to be helping, we just can't pin point what is going on and needed answers to our questions. SO GLAD we had Dr Benscoter do a flexed bronch and lavash (washing of the lungs) on Preston. He found a milky white substance in his lungs that is not normal or anything they have ever seen with P before. This could explain the cough and illness! Labs were sent off and we are very anxious to hear what comes back. The hope is an antibiotic will be the answer! Possibly another swallow study. Stinks that no matter what comes back, we have to go back to Cincy in a few months for a follow up scope with Dr. B :( SO bummed about that. Sure feels good though for ENT to now be at the mercy of what Pulmonology wants to do instead of the other way around. Pretty awesome! 

On our drive home, I contacted Dr Andrews (P's plastic surgeon) and he will be doing the scar revision surgery on Aug 6th and a few touch ups on P's ear. We will start a new school year with a new neck and 'perfect' ears for Preston and a whole new vocabulary (words are flying out by the minute and now sentences.....thank you God!!!). 

I have to say the road trip to Cincy and back in 2 short days was actually really fun. Tim and I didn't realize how much we needed the uninterrupted time to catch up and talk about everything under the sun and just enjoy each others company. We relish in the time we have with each of the boys one on one. Preston is SO DARN EASY and it was a dream come true for him to get to sit for 10 hrs and watch movies. LOL Lord knows this is not Reid's desire so we are thankful God gave Preston this personality for all of the travel we have needed to do with him. He tolerates all of it so well. Only asked to go home once and shed a few tears for Reid on the way home (must have forgotten the slight push Reid gave him on our stairs the day prior). It wouldn't have been a trip to Cincy without a stop to our fav ice cream shop, Graeters! We also bought 2 pieces of art in a local downtown shop (done by a local artist) to remember our time in a city that has so much meaning to our life. 

Its been a LOOONG 3 1/2 years and we finally see the VERY end of the road in sight. Now if we can just get to the bottom of this cough and find out what is in his lungs, we are all set! 

THANK YOU THANK YOU THANK YOU for everyone's prayers, well wishes, and unconditional love and support on this journey! It hasn't been easy but it sure has been worth it. Your loyalty to us is what sustained us all along! We appreciate you!!!!

8 months Trach Free

Still seems like yesterday we were pinching ourselves seeing Preston's naked neck. I can't believe its been 8 months. The boys 1st year of Preschool is coming to an end this week. Preston is TALKING like crazy! He is saying several new words DAILY! We head back to Cincy on Memorial Day for Preston's follow up scope to see how his airway looks. Unfortunately, this winter was not fun. P had a week long stay in the ICU and another night inpatient a month later for several reasons. He is now on a new med plan that seems to be doing wonders for him thanks to his NEW Dr at KU who who is now the boys pediatrician and specializes in asthma/cf/other breathing complications. He has been life changing for us and we believe he will help keep P out of the hospital to catch any sickies SUPER fast with meds asap and has really taught us specific signs/symptons to be on the lookout when Preston starts to get sick. We were so used to how P sounded WITH a trach and now we have learned how he sounds WITHOUT it and its been a learning curve we didn't anticipate. Things are looking up which is great! I am savoring every minute of this age yet its been the most challenging in some ways. It has also been the easiest in other ways. I imagine this will be the case with each age! Regardless, I am reminding myself this is going all too fast and we plan to have a fun summer with lots of activities before school starts back up.

Please pray for us if you don't mind. Safe travels, easy stay at RMH, and a successful O.R. visit for P would be appreciated. We plan to contact Dr Andrews (P's plastic surgeon) while traveling home to get him on the surgery schedule ASAP for his neck revision so he can swim safely this summer! Fingers crossed this can happen very soon! I am ready for every step of this 'trach journey' to get behind us and have 100% closure.

Here is picture of the boys before our fun date recently with our friends the McNeils at Cosmic Jump and Jason's Deli for dinner. They are growing so fast and are officially ready for summer with their shorter haircuts!

2015 is flying by!

I realized the other day I never did a Christmas/New Year post and now i can't believe March is around the corner. 2015 is flying by! I am thankful we didn't spend the day after Christmas this year in the hospital like we did the past 2 years with Preston. I have no regrets with doing his past plastic surgeries on his ear when we did them……he doesn't remember any of it and this year was a FUN and MAGICAL Christmas with Santa and gifts so I would have been crushed if we had decided to take him in for another surgery. Instead, we have elected to have Preston's final ear surgery at the same time he will have his neck revision. Kinda stinks it will be right before the weekend Spring Break starts but Tim will be home and he will have plenty of time to heal. Words cannot express how Tim and I feel about this surgery. We are BEYOND excited for his stoma (hole in his neck) to be officially closed! In 17 days to be exact. This means he can swim this summer for the first time (going under water will be HUGE for him) and bath time can be 100% FUN with splashing and washing/rinsing his hair like normal. The part I am most excited about is the cosmetic piece to this surgery. Dr Andrews is P's plastic surgeon and he is phenomenal at what he does. He is going to make Preston's neck look as if nothing ever happened. He deserves this SO MUCH!

We have seen some major break thru's with P's speech in the last 3 weeks! It has been really exciting! Preston's teacher even caught some of his first words on video at school for me. I was so grateful. He has started saying a few words that are crystal clear or pretty darn close. The best part of all is that he is trying to say everything even if it doesn't sound like it should. It will come! His speech therapy at school has made all of the difference and we are grateful he could be in the early education program in BV. We are still actively signing and it continues to prove to be a huge help in letting us know what Preston needs and wants and he is learning more signs each week. I have to brag on the boys preschool teacher because if it weren't for her, our experience with school would not be anywhere near what it is. She has taken it upon herself to teach the whole class sign so Preston could communicate with his peers. How do you thank someone for this incredible gift.

I am including this sweet story so I never forget it (feel free to skip or read and enjoy). Preston has a friend at school named Marianna. He REALLY REALLY likes her. We have a sign for each friends name at school so he can talk about all of his friends. Marianna is signed a lot in our house when we talk about school. Well I had no idea that Marianna's brother, Jacob, always walks her into school each morning and Preston really likes Jacob. I got a text in the morning a few weeks ago from Miss Abby (their teacher) with a video of Preston saying HI JACOB all on his own. Abby about fell over and had to share with me. Enjoy this video below.  I had tears rolling down my cheeks and appreciate her capturing this for me. Later that week, Marianna's mom approached me at pick up and wanted me to know that Preston knows Jacob's name (she didn't know I saw a video) and wanted me to know how much Jacob LOVES having Preston acknowledge him in the mornings and say hi to him and speak his name. Miss Abby said she truly believes this is a huge reason why Jacob comes in their classroom every morning. My heart just melts and I never thought our experiences at school would be like this one. Pretty special :)

Preston is also very much in love with 2 things. His teachers baby, Lyla, and her doggie, Gracie. They discuss them daily at school and have signs for them. This kid just cracks me up! Here is a video of Preston saying Baby Lyla (the first word that he said crystal clear!).  It doesn't get much better than this sweet voice!

I am always updating about Preston so I must mention Reid. He is my little leader and loves school so much. He is a huge help with signing and communicating with Preston. They are the best of friends and the worst of enemies. Tim and I have noticed how great they play together at this age 90% of the time. They do things at school together for certain things (like circle time) but then are completely independent from each other otherwise. They have very different interests but seem to find a way to incorporate those together. Very twinish at times. We have decided to keep them together next year because signing is still a huge piece of our life for Preston's communication and Reid is gaining so much from this. We know he would not get this in other classrooms. They will be in separate rooms the year before they enter Kindergarten. We feel great about this decision and we really can't imagine our boys having any other teacher than Miss Abby.

We have also enjoyed playing in the snow, church and lunch with GG, celebrating my Mom's 66th Birthday, Auntie Kim spoiling the boys on V-day with a trip to Build-A-Bear, and lots of time at the park with the unusually warm weather we've had. Here are pics to recap these past few months!

Loving the warmer weather for walks to the park!

A moment that I had to blink twice……the house was quiet and knew the boys were in Reid's room so i turned on the video monitor to spy on them and found Reid reading to Preston. Pretty sweet! 

Special visit from Mama Amy and Blake delivering V-day gifts!

Our 13th Valentines Day together! Fun night out to the Bristol and shopping - thanks Auntie Kim, Grandpa and Nana for spending the evening with the boys! 

Leo and Lorna Bear (still makes me crack up that he named his bear that)

Preston being goofy at lunch with GG

Happy Birthday to a woman who was made to be a Grandma

Thanksgiving 2014

Thanksgiving was great! Lots of down time to relax, hosted the 1st Thanksgiving in our new home, and we enjoyed doing more fun activities outside since the weather was gorgeous! A trip to the zoo was a blast seeing Santa dive with the penguins. We had friends over for play dates and introducd the boys to holiday movies. They are super excited for SANTA! Preston even learned the sign for Santa. Definitely a holiday break to remember! :) Need to add more pics from my camera instead of just my phone. Enjoy!