One Year...Many Miracles

Summer Shuntin'

At the end of summer we were able to finally correctly diagnose why Tommy's heart rate would keep jumping up even when he looked totally fine. Thanks to the OI Parents Group that I am a part of on Facebook, I was able to learn of the symptoms for Hydrocephalus. As I inquired further with one of the moms I had an "Aha!!!" moment. I prayed and thought about it overnight and by the next morning I KNEW that this is what he had and I contacted our pediatrician right away. She called me back quickly and trusted my reasoning for the diagnoses. She scheduled us a CT, MRI, and a consult with Neurosurgery at Primary Children's. Dr. Brockmeyer was able to come down and meet with us right after the MRI. Thomas did have hydrocephalus and would need surgery the following Monday. We were scared for another surgery, but were grateful that Thomas has a guaranteed airway because of his trach so there is no need for intubation. We knew that the shunt would likely be a lifetime commitment but that it was a needed surgery.

Thomas had so much fluid in his head that he had gained several pounds over the summer. Initially, our healthcare team had thought he was being overfed. Not only had his grown large, but his veins were protruding and his heart rate would sky rocket likely from headaches and the pressure in his brain.

Falling in Love- Our New Home

The surgery took place at the end of August. Tommy was only the hospital for a few days. The last day his arterial line came out while I was holding him and blood ran all down my clothes and had soaked through. They gave me scrub pants but had nothing to lend me for a top. Sadly, that night was the same night that I needed to go meet Taylor's new teachers for her preschool by our new house. Kids Academy is about halfway between Kent & Margaret's house and my house. So right after I left the hospital Taylor went with me to shop for an emergency outfit (while I was still blood stained) and then we back to my inlaw's to change. We were a little late to the preschool meeting but I made it. Taylor's teacher was very nice and quickly learned how unexpected things can be with our family.

Our new house is a spacious rambler with a master and Thomas room on the main, laundry room,  a large family room upstairs, and 3 bedrooms, another large family room, and storage in the basement. The home will work really well for Thomas when he starts using a wheelchair. For now, it's great because Thomas can finally be moved into his bedroom for nap time and bed time. We are able to wheel his machines around and still have a lot of room to play. I'm able to do laundry, give the kids baths, cook and get things done without leaving the main floor. We joke that we could retire here!

We were so blessed to have neighbors from our old ward help us move. If they had not come there is no way we would have been able to get out of the house on time. Moving into our new house we had family members, friends, and neighbors all come to help. It was wonderful.

The next day there was a terrible wind storm that knocked out our power. We had to go over and spend the night at my in laws since Tommy's machines can only go so long without power. The next morning we returned to the house to try and unpack using only natural light since the power was still out. Later that day I was brought to tears of gratitude for a neighbor across the street who came and shared an extension cord with us to his power generator. It was so touching the support that we already felt from our neighborhood.

Later that night, Shane went out to Costco who luckily still had power and was able to purchase one for us to have on hand for the next emergency. 

 

 

 

October

We started fall with some exciting events and the ball kept rolling into October. Tommy broke his leg from his pulse ox off accidentally getting pulled. We used ortho glass for the first time. We also had our annual Halloween Spooktacular with Shane's best friends from college and their families. 

 

We were able to get Tommy started with his helmet to reshape his head and it was a disaster. He received his helmet right before we went on our trip to Disneyland. We had been planning this trip since before Tommy was born. The trip included two of Shane's siblings and their families, Grandma & Grandpa Broadbent, and our family. We flew with Thomas while Taylor made the road trip with Grandpa and Grandma. Shane had us renting a beautiful house near the park that was perfect for a large group and swimming in a backyard lazy river. The trip was just what we needed. It was a milestone and celebration. It was our first time going to Disneyland together and we loved it.
 Tommy was only able to go on It's A Small World, Tikki Tikki Room, and the Jungle Cruise. It was really hard because of the machines and that Tommy needed to stay in his stroller. We promised ourselves we'd go again when he's graduated from the machines.

The night we flew home we took off Thomas's helmet that he had only had one week and his skin look really irritated. We thought "good thing we have our one week consultation on Monday", cleaned the inside of the helmet and put it back on for the night. Thomas was up screaming and crying all night. It wasn't until the next morning that we found out why. His helmet had rubbed against his skin so bad that it made an opened, infected wound right where his shunt line was.

Thomas ended up getting an emergency shunt externalization surgery and a month long admission with a PIC line of antibiotics. It was horrible. Thomas was healing from surgery and from the infection but he was in the hospital which we hate. We couldn't play with him or position him like we normally would because of the externalized shunt. Every day we would be up there to see him and to spend time with him. It was really hard on Taylor. We were grateful for the friends and family who stepped in to help with meals, visiting him, and to help with Taylor. Luckily, she was able to visit Thomas because it wasn't RSV season yet.

Finally, Thomas was able to get his new shunt on the other side and was able to come home. He handled the surgery like a champ except for the massive bruising across his chest.

Holidays

Thomas came home right before Thanksgiving! Hooray!!! We enjoyed doing all of the holiday things that we tried to do last year at the end of my pregnancy for our bucket list in case he didn't make it. It was a wonderful feeling to do this things with him here! Thomas was able to celebrate his birthday with so many friends and family members.... It was so special. Instead of gifts, we collected items for the NICU families of Primary Children's. Shane and I were so touched by all the baby toys, clothes, gift cards, money, hygiene items, and baby blankets that were donated. We took the kids with Grandma/Grandpa Broadbent to the hopsital to donate the items and it felt so good to help out those families that were going to celebrate Christmas with their babies in the NICU. We were so grateful that we have passed that stage of life but will never forget it.

We made it through the month with one broken arm. But it has taken longer to heal than in times past so we're still extra careful with it. We splinted him pretty good and that helped a lot. 

One of my favorite things was going to Taylor's Christmas dance recital! She's currently taking ballet and tumbling. Taylor celebrated her birthday at a nearby nail salon with two of her cousins Katie and Claire Bear then went to McDonald's for lunch and to play. We're classy like that. Taylor was in heaven! She's seemed like she was 4 for quite a while so her birthday was overdue.

Words cannot begin to describe how grateful I was to be able to celebrate Christmas as a family this year. No hospital. No worry of death. It was peaceful and uneventful. That's all we wanted. We look back on all the miracles that took place to help us reach the end of year together and I am amazed.... God knows me and knows my family. Prayers are answered. The Holy Ghost has guided us. Thomas is a strong boy with a special spirit and a mission to complete. At the beginning of this year, Shane and I assumed Thomas would not be with us for the end of it. Now, we feel that there are so many possibilities for our family. Our goals are big! But our favorite goal is to have a peaceful and uneventful 2017 with minimal breaks, no hospital admissions, and family getting to just enjoy being together. I hope Taylor will learn to read more this year. I hope Thomas will hold his head up on his own and roll to his side on his own. For Shane and I, I hope we can get in more date nights and finish our back yard. :)