Tuesday, August 13, 2013

HOME SWEET HOME

We are home! What a great renunion when we pulled into the driveway! I have not had a moment to write an update on the details Dr Rutter shared with us about Preston's airway and future with his trach. I was in a mad dash to get HOME once he gave us the GO! Now I am back to reality tomorrow with both boys to myself, Preston on g-tube feedings (that will be interesting as he watches Reid eat meals), and my house looks like a tornado struck. I am not going to lie, I am a bit overwhelmed with all that I need to do in order for our life to get back to 'normal' and for me to ease back into working my business. I am going to do nothing tomorrow but play and snuggle with the boys, go on our morning walk, and book our flights to head back to Cincy in 5 weeks. :/ Bittersweet on that last part. We will be there for 3 days (2 of which are pure travel) and then he will be inpatient the night of stint removal. We will fly back a week later for a bronch (just one day of travel) and then fly home that night after his bronch. Sept will be a BUSY travel month. That bronch a week following stint removal will be the most important bronch for him because it will tell us what the future holds for decannulation. We are trying to decide if my mom will travel with me so Tim doesn't have to take that much time off work in such a short amount of time. My dad would watch Reid for us. Everything is still up in the air! I have lots more to share but for now, I am itching to curl up in my own bed tonight. I am wiped! Grateful my family is under ONE roof tonight! We serve a mighty God! My heart is so full tonight it might burst! 

Sunday, August 11, 2013

THANK YOU!!!!

I appreciate knowing we have so many prayers being said for Preston's trip to the O.R. tomorrow. I realize everyone has so much going on in their own lives and many have prayer lists that are never ending. Life certainly doesn't stop just because we are here going thru this so I appreciate everyone's effort to let us know we are thought of! To take the time to pray for our family and Mr. P means so very much! My phone has been chirping with texts throughout the day....the messages are making me feel so loved. Each fb message and email mean so much! THANK YOU FRIENDS for loving us so much! I feel so lame just saying THANK YOU but I don't know what else to say. I am vowing to pay all of this support forward once this journey comes to an end. I just know that whatever happens tomorrow is out of my control so I am headed to bed worry free and I am trusting in God for His guidance. I am once again remaining hopeful for good news tomorrow. Dr Rutter is world renowned for this surgery and I feel so good to have his brilliant eyes on P's airway tomorrow for the bronch. I know he will do what is best for Preston and guide us in the right direction! After all, that is why we are here. And if anyone can kindly remind me why I decided to skype with Tim and Reid tonight, feel free! Once and for all, NEVER SKYPING AGAIN! Broke my heart even more. I miss my boys back home! I will update tomorrow once we get whatever news is meant to be for our little man!

Friday, August 9, 2013

Wonderful unexpected phone call

Well, my phone rang this afternoon and I saw it was the hospital. I assumed it was same day surgery confirming P's arrival time for his bronch on Monday. To my surprise it was Dr Hart (who bronched P yesterday). She was calling to follow up with me after further discussion with Dr Rutter today regarding the next best step for Preston. She was probably making sure I was still emotionally stable after my reaction to her news in our post surgery mtg yesterday. LOL J/K I was really thankful she tolk the time to call me. This Otolaryngology team here at CCH is amazing. They always go one step above to ensure we are knowledgable about the 'next step.' Boy am I glad she called. She wanted me to know Dr Rutter would want to leave the stint in for 4-6 weeks if he decides to put it back in (thankful it's not longer than that since up to 3 months was a possibility). She knew I was devastated at the thought of being here for maybe 2-3 months at most. She has little one's and said she wants to ease my mind as much as possible. She did say the chance of it going back in are VERY high and even if the graft is lost and not salvageable, the stint will serve the same purpose as the graft in hopes to keep Preston from having the LTR surgery again. I didn't realize this....the thought of the graft being lost was an indicator to me that he would need the LTR surgery again and that would be devastating. Once I heard this, I was not so upset about the possibility of the stint being put back in. 

So here comes the good news. I asked her what the possibility of us going home with the stint in would be. I explained that we have a PHENOMENAL day and night nurse to help care for him and we would fly back for the stint removal. She said she understood my initial reservations about leaving here with the stint in due to all of the complications Preston has had but she said it is very reasonable to go home. Many patients are sent home with stints and many live just as far away from Cincinnati as we do. She is confident that Tim and I would come back asap if Preston had any major problems but we know what to look for and we are much more knowledgeable this time around. We need to talk to Dr Rutter about all of this and nothing is final of course. Just trying to think of a way to make life a little easier while Preston's airway continues to heal. We don't even know if the stint is being placed back in his airway on Monday. I am just mentally preparing myself for that so I am not disappointed. She recommended to have my bags packed for an overnight stay inpatient incase Dr Rutter decides to move forward with the stint placement. It will just be for one night which is good. I forgot to ask when we would be able to head home if we are able to so I will find out more on Monday. I have a list of questions. P and I had a great day today with my folks. We went to our favorite shopping center today and will hit the zoo tomorrow instead. It was really humid and P doesn't tolerate humidity well so we skipped the zoo for today! Preston took his best nap here yet. 3 1/2 hours and he was really rested. Yesterday took it out of him big time. My parents took me to my favorite restaurant tonight that happens to be in Cincinnati too....J. Alexanders. It was so nice to go out to eat and Preston loved the change of scenery. My mom capped off the day by giving me a pedicure. I am feeling encouraged and I would like to think I am prepared for ANYTHING that comes our way on Monday! I feel that I am starting to always be the bearer of bad news so I am glad to share some encouraging news with all of you. Best phone call I have received in awhile! :)

Tim dropped Reid off at my sister's today on his way to work. He spent the day with my sister and his cousins. Auntie took the kids to the mall to play b/c the weather stinks and he slept for 3 1/2 hours at her house today too! She said he was an angel and I am so happy he naps so great for her. Really makes this mama happy to hear of great days like this for my little man! I know my sister loves Reid more than she can say. He is a lucky little boy to have her! :) Tim is having a fraternity brother over tonight for dinner and cold beers and I am sure Reid will love having a new person to show off for. Tim plans to hit the zoo with Reid tomorrow and then go to his folks for the evening. I am so glad everything at home is going so well. What a blessing! Puts my mind at ease for sure! I hope this update finds everyone having a fantastic start to this weekend. :)

Thursday, August 8, 2013

2nd bronch results

I am starting to question if I will ever hear the phrase 'you can go home!' I am sorry for the delay in news from this morning's bronch. It has been an emotionally draining day. The news we got was a punch to the gut. :( Preston's airway is STILL swollen (not as bad as last week) so they dilated it again. There is concern that part of his posterior graft was lost due to his infection around the stitch of his stint but can't see well enough to confirm. They think it is still salvagable from what they COULD see. Still not able to say if the surgery was a complete 100% success. The Dr who did Preston's bronch this morning is a partner of Dr. Rutter's. She is fantastic. She called Dr. Rutter to discuss what she saw and the next step for P. Dr Rutter wants to bronch Preston on Monday himself (is out of town or he would have done it today) and see what is going on. There is POSSIBILITY of having the stint put back in his airway for many reasons (i won't bore you with them). I about cringed when she told me this. The amount of secretions this creates is nuts and suctioning is constant. Sleep at night is a joke and he won't eat by mouth with the stint in. The thought of going back to g-tube feeds makes me ill. We have worked so hard to get him eating so well now. Then I asked how long they would want to keep the stint in (knowing we would not be going home with the stint in his airway) and she said 1-2 months. Worst case 3 months. I have always stayed strong while consulting with the dr's post O.R. visits and then when Tim and I leave the room, I am able to let out my emotions. I couldn't hold back today. The tears started flowing. I am really disappointed. I was SO hopeful we would get great news today. My dad was with me thank goodness and I just couldn't believe what I was hearing. Tim feels terrible he is not here. He is exhausted. Our hearts break to watch Preston have to endure so many set backs. I miss Reid so much I can't even stand it. I am so ready for all 4 of us to be under one roof. The financial part of this journey is depressing. I don't know how families afford to be here for 1 year+. I miss working.....my customers and consultants have been so caring and supportive. I miss my girlfriends and sister more than I ever imagined. It has been almost 50 days of our family being separated. I feel as if my faith is being tested. I can't even imagine my parents not be here with me.......they have been angels in my life during this time. So, until Monday gets here for Preston's next bronch, my parents are keeping my spirits up and we are going to head to the zoo tomorrow and make the most of our weekend together. We are claiming the stint will not need to be put back in! WHO IS WITH ME??? I am blessed beyond belief to have 2 healthy retired parents who are willing to stay an entire month with me (or as long as need be) if that is what ends up being the case. Until then, I am believing we are only here another week! ;)

So, this is where I am begging (yes begging LOL) for ALL OF YOU to please please please join us in a few specific prayers for Monday's bronch! 
 Please pray for:
- Preston's airway to reduce in swelling and open up more for them to see the grafts
- no need for the stint to be placed (I am literally on my knees praying for this to be the case.....i am remaining hopeful this is just a 'worse case' scenario and won't need to happen).
- the grafts to look GREAT and assurance that his LTR surgery was a success

THANK YOU SO MUCH FOR YOUR SUPPORT, LOVE, and PRAYERS! It is sustaining us more than you will ever know! 

Tuesday, August 6, 2013

Dada left, Grandma and Papa arrived, and we have 1 day left!

It was a sad morning saying goodbye to Tim. He is my rock in many ways (sounds corny but its true). Weird to think he isn't coming back until we come home to him. Went for an extra long walk which helped to break up the morning. Spent a long afternoon after P's nap with another mama and her kiddo blowing bubbles on the patio and talking. Its nice to have other mama's here for support and good laughs. Received some special mail with a few gifts that really brightened my day. THANK YOU Marcia and Ali! Your thoughtfulness means so much! Then my folks arrived tonight. HALLELUJAH!
What a wonderful feeling to have their help and support and company! Preston was in heaven showing off for them tonight and they arrived in time to join me for dinner which was really nice. We have 1 day to go until Preston's bronch. We will find out if his airway is less swollen, hopefully his Dr can see both grafts that will look GREAT, and he possibly could need another dilation. We MIGHT get the green light to head home but I am not counting on it but it is a possibility. I can still hope, right? Otherwise, we will be here another week for one last bronch and possible dilation. P is on the o.r. schedule for 8am and we arrive at 6:30am. I am thrilled he won't have to go 1/2 the day on an empty tummy. Can't wait to give you great news on Thursday after his bronch.

Monday, August 5, 2013

Adventures of Reid

Tonight's blog is all about our other little lovie. Reid is on my mind 24/7 and some of the pictures that I get sure make my day when I miss him more than words can say! For those of you wondering how he is doing, I think its safe to say he is having a GREAT summer! Thank you to our WHOLE family and dear friends for helping us with him. Your love for him means more to us than you will ever know!


Very first ice cream cone!

He asks to "brush brush" alot! 

Snacks and Bob the Builder

This child is fearless

Yep, I got ahold of something I wasn't supposed to touch! HA!

Reid can't get enough of his Papa......we need a pic of him with his other Grandpa. 

"Hi, I'm Reid. Want to go for a spin?"

My mom combed his hair to see how long it is.........hair cut soon? Nah! I think we will let the curls grow some more!

FUN day with Mama Tolle


Milk and flashlight......the 2 essentials every 20 month old boy needs, right?

Bath time at Grandma and Papa's



Christmas jammies and churning pretend butter......pretty exciting times LOL

The look after knowing he should not be playing with something under the table


Curls are full force along with his love for playing trains

Grilled cheese on the go

Someone wanted their own 'walking stick' like Papa

The bathroom is a popular play place at my folks house

We are going to have to lock him up when he turns 13

Sunday, August 4, 2013

Home Away From Home.....RMH of Cincinnati

Here is where we live! This place is pretty incredible....its the 3rd largest RMH in the country. After Tim and I stayed at the RMH in Iowa City, this place is very special since we have something to compare it to. The one in Iowa City was awesome but this is like nothing we knew existed. It certainly isn't home but we feel very fortunate to be able to stay here. We were told that this is the first year this RMH location had to turn away more families than they were able to help this year due to the high demand of 'long term' families staying here. The waiting list is based on how many check outs they have each day. This house is completely full 24/7 so as one family checks out, the next family gets a phone call to come and check in. If they have already had their hospital appt and left the area with no need to stay at RMH anymore, the next family on the waiting list gets a phone call. Once you check in and get your room, you are able to stay here up to 2 years. CCH is known for their transplants so there are many families here for Bone Marrow Transplants, Liver Transplants etc and will be here for 6 months to a year. You can check out at any time but there is no time limit to check out until you reach the 2 year mark. Current families in the house are here from local cities in Ohio, out of state (like us) and some are here from Kenya, Greece, Honduras, and Russia. There are 30 paid staff members along with dozens of volunteers. We were surprised to find out a complete background check was required to stay here. Now that we are here, we see why that is a stipulation.  There are 78 rooms here and 2 complete industrial kitchens, a workout room, game room, 2 living rooms, dvd rental room, library, and conference room. There is a play ground on the main level and 2 huge play rooms (one in the main house and one in the west wing). The main kitchen is like a hospital cafeteria and the west wing kitchen (where we live) is 1/2 the size. The main kitchen has 5 refrigerators for leftovers, dairy, and condiments and then 6 refrigerators for the families living in the main house. Each family has a bin in a frig that they are assigned to for keeping their own bought food in. Same in the west wing kitchen. Each family has a food cabinet (food is not allowed in your room) with a lock so that is essentially our 'cabinet.' Each person staying here is required to wear a lanyard with a key fab. That is how we have access to enter our room, main house, west wing, and it allows us access to the main gate to enter the RMH when we leave the property. Here are lots of pictures! Enjoy!










Main entry door


Play area

Play area cont

Our kitchen area

Play room from Marvin Lewis in west wing

Play room cont

More of our kitchen

The other side of the island in our kitchen

Main kitchen area

Main eating and kitchen



Bed room



Back side of main kitchen......8 Other frigs not shown

Saturday, August 3, 2013

P's new toy

While we are all getting ready for another round of changes, P is busy playing with his new toy. His airway is obviously healing because he is trying new tricks with it. Most are comical, some are gross, but all are good signs. He likes to put his hand or finger in his trache to make little breathing sounds. He will push air hard out so it comes out his mouth or nose. Today during lunch, he was trying to blow snot rockets from his nose. He will look up and you can hear him take a big breath in through his mouth. I am afraid one day he will cough and then say something and scare himself. I hope I am there to see it. - Tim

Tim and I tag teamed our update this weekend. Kinda fun to each give our own perspective. We spent the day at the zoo on Friday and here is a picture of P waiting for the Cheetah show to start. Side note: Poor Preston is cutting more teeth among everything else so we are back to bibs. Strange seeing one on him after not using them for almost a year. Cincinnati Zoo is the only zoo in the country that has a live Cheetah run within a few feet from your seat. You get to see how fast these amazing cats really are and Preston LOVED it.

 We have received many inquiries about the RMH that we are staying at in regards to its size, accommodations, etc. Our next post will be filled with pictures of our HOME AWAY HOME for all to see! This place is amazing! Certainly not home but if we are going to living here for almost 2 months, this is the place to be! Now if it just had a salon so i could get my hair done and fly my hair girl in, that would make it perfect :) One can only wish of such a thing! Hope everyone is having a great week!

Thursday, August 1, 2013

Settled back in!

Thank you so much for everyone's positivity and encouragement. We appreciate it!! A good night sleep always helps and we are back in our routine already. Everything is falling into place. Funny how that happens in such a short 24 hour period when life turns upside down unexpectedly. Tim's flight home is booked for Tuesday at 12noon. My parents are arriving that night. Tim has a few days off in between his training and the first day of school so he is really looking forward to having Reid all to himself those days. Preston is doing GREAT! He is feeling awesome, napping great and sleeping thru the night with 1 suction if that. HOORAY! The weather here has been GORGEOUS! We went for an hour long walk today and it was in the low 70's. We are spending the whole day at the zoo tomorrow. I know these next 2 weeks are going to fly! I am so fortunate my parents are retired and don't hesitate for a second to come out here and be with me and Preston till we come home. I am so blessed. And I have a sister who has gone ABOVE and BEYOND for us in many ways and the most meaningful is to make sure Reid is being loved like her own......he spent the morning at the pool with her and his cousins and my parents and had a wonderful time. My in-laws will have him all weekend and they just love their time with him. 

I talked to a mom tonight after dinner who's son is 4 but mentally is 2. He has tumors on his heart, kidneys, and on his brain. She is the NICEST woman and her son is ADORABLE! I had a lump in my throat after talking to her......God knew I needed perspective. I would be okay with another month here knowing my son is healthy and happy and is going to be just fine. And his brother is at home with everyone who couldn't love and spoil him enough. Wishing everyone a fantastic Friday and fun filled weekend!