Sunday, December 18, 2016

We have a surgery date and plans are in place!

We found out at the end of October that Preston was needing his 2nd airway reconstruction surgery sooner than later due to his current struggles. Not the news we anticipated. In fact we were shocked and completely crushed. We pray this is the last one he will ever need. We have waited a while for a surgery date. We have one! Its Feb 13th. I tad sooner than we hoped but now that we have one, i have been in full planning mode. I will be driving to Cincy with P the weekend before surgery to get checked into our hotel and settled. The best sweet dad is joining me on this journey. Boy am I GRATEFUL for this gift. I imagine his support will be needed more than i know! Preston will be inpatient for 2 weeks post surgery and a follow up scope will be done each week after that until we are cleared to come home. I am packing for 12 weeks like the nurses suggested (with hopes to come home around 5-6 weeks- all will depend on Preston's recovery, healing, health etc). The good news is I have been down this road before so I know the city, what we can do to stay occupied, and I trust the doctors more than ever before. I know what to pack and thankful for laundry services at the hospital. I will stay as long as needed to get Preston to 100% health! We will be placed on a wait list for a room at the Ronald McDonald House 24 hrs prior to surgery. Last time it took 11 days to get in and that was their peak season so i am hoping with us coming in the winter time, we will get in sooner. Staying at a hotel is not ideal when the RMH is literally a few steps from the front doors to the hospital. Plus the cost adds up quickly. This is not in my control so i am trusting we will get in when we need it. 

So many people have asked me all about the details of this adventure so i thought I would lay it all out there and share. Plus, I plan to print my whole blog for the boys to read when they are older for memories! Funny how i almost printed it this summer and just didn't feel right about it. 

My first priority has been to plan for Reid's care and lighten Tim's load as best I can. I can't even describe the feelings I have with leaving both of them for an unknown amount of time. Its killing Tim to miss being in Cincy for this. We both feel Reid needs at least one of us with him this time around. I keep reminding myself that I did this when the boys were 18 months old for P's first surgery but something about them being 5 years old is making this so much harder. They had no clue what was happening before and now they are aware of everything. After being told last week to isolate the boys 6-7 weeks prior to surgery and remain home 100% for sake of germs, I made the decision to pull Reid and Preston from their morning church preschool for the rest of the year for several other reasons too. It has been a great decision already as hard as it was to do. The boys will be doing school at home with me till we leave and once we are gone, Reid gets to resume afternoon school at Oak Hill Elementary where he is a peer model. He has made a few very close friendships that he really loves and I want him to continue having that each day. I also know a few of my dear momma friends at that school will love on Reid and be able to text me and let me now how he is doing etc. Preston will most likely be done for the remainder of the year with school but we will see. We received WONDERFUL news from his teacher last week that he was approved for homebound speech services till he leaves for Cincy. His A.M.A.Z.I.N.G. teacher and speech path were able to get him services for them to come into our home and do speech with P a few times a week in the evening! How awesome is that? They are doing this outside of school hours. I am so blown away! He needs to keep up with speech more than anything so this is awesome. I am making a whole corner in our living room as a set up for school and we will have a daily routine and I know this will help the time fly by and I won't lose my marbles a few days into them being home FULL TIME. Pray for me people! ;) Good thing I put wine on my xmas list! :) I could not do this without the huge help from Preston's teacher and all of her guidance and work for them to do! They need the structure so badly as do I! I know the boys will miss each other terribly when we are gone so this will be lots of quality time together.

I am so fortunate to have so many loving friends and family jump in to offer help in SO many ways. Tim will be a single dad for this duration (on top of Grad school- he is a rock star!). Reid will get his 1st parent teacher conference experience with Tim at his school one evening. The memories will be great for both of them and the list will grow as things pop up I am sure! My mom will be with Reid each day in the mornings and take him to school and Tim will pick him up. Thank goodness for Tim's folks and our sisters who are just a call away when we need them! Our church life group (which we didn't have the 1st time around) is solid as a rock for us. That has been the biggest difference we have noticed this time around......we have more grounding in our faith and support from our church. We didn't even realize what a tremendous difference that makes.  I have a few wonderful friends having Reid over for play dates to give my mom some relief too. And a very generous friend taking Reid on Fridays! This mama's heart is feeling more calm as plans are becoming more concrete! We have been offered a meal train set up for Tim and Reid and invitations to have Tim over for dinner. The list goes on and on and we are so fortunate! The enormous generosity just keeps us humble and makes us realize why we have fallen in LOVE with giving back. I personally never 'got it' till we were put on the receiving end time and time again and the past few years I have done my best to give. Not enough! But now that we are on the receiving end yet again, it makes me more eager to get all of this over with so i can be on the giving end again. Its so much more FUN! 

I will keep the blog updated as we near the departure to Cincy and surgery for P. Tim will hop on and update too. We covet any prayers being said and couldn't do this journey without them! 

Thursday, October 27, 2016

Home sweet home

P and I are home from cincy and life is beginning to resume.

The findings from the scopes yesterday were not as awesome as what we wanted. They fall into three categories: the good, the bad, and the ugly.

The Good
From the GI standpoint there is nothing to worry about and everything looks great. His diet of carbohydrates and dairy can continue as normal, which it did right as we got in the car to leave.

The Bad
His airway is not awesome it is not functioning at 100% and this problematic, at least it is not life-threatening or handicapping; if it were we would not have been allowed to come home. His trachea is collapsing more than usual when he breathes as well as the the portion just below the the trachea when it first enters the lungs.

The Ugly
His old trache site is the main cause of the problems. It is "s shaped" and not super strong and there is really only one way to remedy this. He gets the opportunity to have another reconstruction of his airway, where they graft more cartilage from the ribs into the airway. This time it will only be one graft on the front of the airways but it is still major surgery.

We will be in cincy for 4 weeks and in patient for 5 - 10 days. He will intubated for a time and we pray that they won't have to do a trache again, but it can happen. He will have an feeding tube in the other nostril. I think we may try to have this happen soon more so than later. thoughts when the doctors said this to me were all over, it felt like taking a step backwards. Like they said though, if it was life-threatening we would not be back here. We are praying that God reveals the plan to us so that we can have peace with our decision on when to get the surgery done and P stays healthy so that we can get it done when scheduled.

So i suppose this is a good bye for now..... 

Tuesday, October 25, 2016

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

Monday, October 24, 2016

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.

Sunday, October 23, 2016

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.

Friday, June 17, 2016

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.