Discharge and Picking Big Brother Up

Graysen had to have a few extra test before discharge then we headed back to Laramie to pick up Easton from Eric & Kylie's who were so great to watch him while we were gone. We had purchased a little outdoor play set from a garage sale a few weeks back and left it at Eric and Kylie's since they have a yard. The kids were so excited to play on it. Tony & Carilyn were there because tomorrow is moving day :(

Graysen {Dever Dr. Appointments @ Aero Digestive}

Day 1: One day down. Graysen had a chest X-ray an upper GI and we finished with the swallow study today. We will be in clinic with the doctors tomorrow to discuss all the findings from the tests today and talk about the OR procedures moving forward on Thursday Graysen is worn out and he enjoyed being able to eat FINALLY. Barium never tasted so good 😜 Doesn't have to starve again until Thursday 😉 He was really a trooper for the chest X-ray, upper GI , and swallow study but he's definitely had a long day! So grateful for everyone who made today easier for us from nurses to doctors and family and friends! We will keep the information coming as we get it. Ps: Graysen has never been a huge stuffed animal fan but this bear has been his little companion today as we moved along! Thank you welcome coordinator you really know how to win over our little dude!

Day 2: Such a busy day seeing ALL of Graysen's doctors from Pulmonary to GI we met with 8 different specialist today discussing the procedures for tomorrow and the results of the three tests that were already conducted. So the team decided we will go ahead and do the rigid bronchoscopy, flexible bronchoscopy, GI scope and PH probe in the morning and they added a full blood workup and two surgeries so far which will be a supraglottoplasty (this is the same surgery he had at one month old) to revise and take out more of the tissue on his aretenoids around his vocal cords in order to help him breathe more efficiently and quietly (hopefully he will have less scary breathing episodes) Also he will have a double frenulumectomy on his upper frenulum and lower one under his tounge- these are causing him to have ineffective oral mechanisms which is causing him to choke on foods. He has nearly no mobility in his tounge poor buddy! We will have a better picture tomorrow of every piece of his health issues but this is what we know so far. Please pray for him to do well in surgery tomorrow and that the Drs will be able to see what they need to with the scope procedures!

Day 3: AM- Graysen woke up very very hungry and very upset as he was NPO since 3 am but since he sleeps through the night he was NPO at 11 pm We checked into the hospital at 5:30 and waited on the surgical floor. Graysen went into the OR at 7:40 am we have talked with two of the three doctors performing the procedures. Will give a better update when we get back to the PACU. They just informed us that he just came out of the OR. (Such sad pre-op pictures it breaks my heart)

PM- Graysen got out of the OR around 9:10. Seeing him come off of anesthesia isn't easy for anyone. He screamed for a good hour and a half straight. They are giving him tylonal for pain. We are admitted to the hospital with Graysen coming out of procedure and surgery. Everything went great in the OR they were able to get he data and pictures they needed. We will be hearing more about these in a while and the plan moving forward. Dr. Prager conducted his scoping procedure and additionally said he didn't end up needing to remove any tissue from his aretenoids but did retract the bands on his epiglottis about 3mm on either side. This should help with his breathing difficulty, noisy-ness, and potentially his proneness to illness and respiratory infections - if not we can reassess. He also completed the double frenectomy on his upper lip and tounge. It is hard to tell the differences yet because he is still way sleepy eating but in the next few days his eating and choking should improve. Dr. Deterding completed her bronchoscopy and lavage in his lungs and said he has built up infection and swelling. She said she flushed the gunk out and we need to see these without infection to monitor if the swelling is infection related. For now she wants to see if the procedures Dr. Prager did improve illness factors and if not we can address those with an inhaled steroid in the future. Dr. Sodden conducted the GI scope and said structurally things look great meaning that it is not a birth defect or structural defect causing his reflux. This and he other areas of study we will know more after all the biopsies and results come back. He also placed a PH probe which Graysen will have in for the next 24 hours. This probe you can see in the pictures and it goes all the way through his nose down to his stomach. It is hooked to a compact computer that stores all he information about his day and his PH levels. We push buttons for eating, stop eating, laying down, sitting up, and one for whenever he vomits. This will give them a pretty good idea about when he is spitting up and how bad the acid actually is. We are so grateful for our amazing care team who took such good care of him in the OR and us in he waiting team. We are feeling extremely blessed to be in such good hands. We are also so grateful for continued prayers on his and our behalf. You all are amazing💕

Day 4: Discharge Day AM- His face says "mom get me out of here I'm so past over it" Graysen had a rough day yesterday he was so out of it and grumpy and the night wasn't any better :( but he woke up a little happier until the nurses and doctors did their morning rounds and vitals then he was MAD! He has an abdominal ultrasound scheduled at 10:30 and will get his PH probe removed before that hopefully. Then we have to wait for all the results to come in to the Aero team and they will meet and come up with a plan moving forward. We will be discharged today but probably will be back at some point.

PM- Feels good to be home-ish (as everything is packed in boxes) but Graysen was so happy to break free from the hospital. Now to pack up the U haul in the morning and drive to our new home in Baggs. We'll be back for Drs appointments soon I'm sure as the Aerodigestive team will be calling us next week with results and a plan for our little guy! Thank you for all the support and prayers the last few days we really appreciate the outpouring of love we have felt and kind acts of service we have recieved!

Fun Denver Pictures

Even though we are here for additional medical testing and procedures for Graysen we still found time to have a little fun with our little man!

Graysen {heading back to Denver Children's}

We're asking for prayers for baby Graysen as we take him to the Aerodogestive Breathing Institute at Children's Hospital Colorado tomorrow morning. As a lot of you already know Graysen's condition hasn't gotten any better (he still has noisy breathing, struggles breathing, passes out when crying due to not being able to get enough oxygen flow, has extremely bad acid reflux and pukes nearly everything he eats, chokes when eating solids, and hasn't grown since he was 6 months old) so our current ENT provider referred us to a group of specialists and we leave tomorrow morning for three days of testing and hopefully gain lots of answers and it is the plan to have some type of further procedure(s) to solve his health issues. He will have an Upper GI study at 9:30 tomorrow morning, followed by a chest x Ray and then at 2pm tomorrow he will have a Modified Barrium Swallow study. Wednesday we will be in the clinic with the providers for much of the day discussing what they see from theses tests and make a plan of attack moving forward to the next round of tests. On Thursday our baby boy will enter the OR at approximately 7:30 am under general anesthesia for a rigid bronchoscopy, flexible bronchoscopy, a GI scope, and a PH probe. And then a 23 hour observation period. We anticipate this will be a stressful week and hopefully while we are there they will just proceed to take care of any issues they discover as life is gonna get crazy moving from Laramie to Baggs on Saturday. I will try to keep everyone updated as we go along. Thank you for everyone who has been so supportive throughout our struggles with Graysen and for those of you who have made this process and trip to Denver less stressful (you know who you are) we could never tell you how thankful we are for amazing family and friends!

Heading Home- Saying Goodbye to New Found Friends

We are definitely going to miss our little buddy after our week of partying in Casper. These two boys have become the sweetest friends and we will be so sad to leave them. Chipper has been so lovey on Graysen all week too- he has a baby sister coming later in the year so he is just baby crazy!

On our last day in town we got to meet up with Brooke and her kids at the mall. Brooke is a girl that I met in high school who I ran track against. When we found out we were moving to Baggs I messaged her on Facebook and let her know. She was so excited to find out we would be moving in and that our kids would be able to become friends. Before we headed to the mall though Easton accidentally locked his baby brother in the hotel room! I was just across the hall way getting ice from the machine and I heard the door close. It was my plan to knock on the door and have Easton let me back in. However, as I am walking back to the room I see Easton open the door and before I could catch it the door slams hard! I panicked! I grabbed Easton by the arm screaming and ran to the front desk. I told them what happened and they got me a new card for our door. I ran back through the hallway (that no doubt was lined with all the tables for the coaches clinic so everyone was asking what was wrong with him) and got back to our room only to find out that the key had not been properly programmed. Bursting back through the hall and the people I finally was able to get a key and get into the room before Graysen no doubt had a freak out and passed out. Although it wouldn’t surprise me if he had already passed out he tends to do that at the drop of a hat. Well we finally made it to the mall and ate lunch with Brooke and her boys. We did a little shopping and let the kids play at the playground in the mall. After the boys were done at the clinic we met them back at the hotel and were able to head home to Laramie. Although we had so much fun with friends in Casper we were ready to get back home for a few days anyway because on the 25th we head back to Denver Children’s hospital for Graysen’s additional testing.

Water Park Hoopla!

Today we met up with Valerie & Chipper, and Brook and her boys at the new water park in Casper up by the college. The boys had so much fun going down the little slides and wading in the pool. Easton has become quite the little fish after swimming in the pool at the hotel all week. We basked in the sun- got a little red and enjoyed a little pic nic. The lazy river was everyone’s favorite. Graysen loved wading around with mom and Easton loved to get in the tube and pretend he was a car racing. This boy and his love of cars! I somehow didn’t manage to capture any pictures of my own of the Wheeldreyer kids so I snagged some of Brook’s. This water park was definitely a highlight of our trip to Casper.

More Casper Adventures

Today we took the kids to the cutest little park over by the baseballs fields in Casper. Chipper and Easton ran and ran all morning! They have become the best little buddies! The park was made our of all wood and it was a castle type construction with lots of little nooks and crannies for hide and crawl in. Graysen ate wood chips most of the morning and we had a little picnic with the kids. Later for dinner we all met at Texas Road House. We enjoyed a delicious dinner and delightful conversation with our friends. Following dinner we went back to our hotel and in the parking lot there is a miniature golf course- the hotel is shabby but the entertainment is fancy! Earlier in the week Dustin and Kinzie met us over for dinner and miniature golf but for some reason we never got a picture (kinda sad) but I didn’t do too well in that round so I’ll take the second round with the Lintz family! We ladies had a hard time adding up the scores at the end but I am blaming it on the calculator! We were about 20 points off every time we added them up and that was at least ten times. I can’t even remember who won but we had a good laugh! Easton was the real champ of the night- this kid just hauled off and wacked the golf ball every which direction but he somehow managed to get a hole in one on the hardest hole! Pretty amazing hope he makes me some good money someday as a pro golfer ;)

Mini Golfing

Living Large in Casper

There is a nice little path that runs from the hotel all the way clear across town past the river and sometimes past sketchy parts of town, but I have been loading of the boys and taking off running the whole loop which gives me about five miles. With the double jogger and two boys loaded up it can be quit a chore to push them up and down the hills! I think they enjoy the scenery and Easton likes to see the river. This morning Valerie and I took the boys to the library across town for story time and then they came to the hotel to go swimming with us. Easton and Chipper loved sinking his little sharks in the water and searching for them. Later we met up at the farmers market and taste tested some yummy salsas, jams, cupcakes, and cherries. (OOOOPS having way too much fun and forgot pictures!!!)

Adventures in Casper Wyoming

Mark started his classes yesterday so the boys and I have been hanging out at the hotel and in Casper. Luckily I have a friend who just moved from Laramie who has a boy about Easton’s age to get along with. Saturday we went to the park with them to an “event” it turned out to be a shambles so we snagged a free slice of pizza and we let the kids play on the playground for a few hours. Today we went to church with them. Unfortunately Mark had to go to his classes so it was only the boys and I but that’s ok. Easton fit nicely into a new nursery and we had a nice Sunday with the Lintz family. After church (because there is only so much space in a tiny hotel room) I took the boys down to the pool for an afternoon of swimming. Easton loves the pool and could swim all day!

Little Fish!