November was a month of healing and improved cardiovascular health for Tyler since his Glenn surgery was performed on October 31st. Tyler was taken to the ICU immediately after surgery but was sent back to the cath lab the morning of November 1st for placement of a stent in his left pulmonary artery. While this was very anxiety-producing for our family, Tyler did very well and the procedure was done without complication. They also re-opened his chest to clean out the chest wall since his right lung was slightly collapsed and there was blood pooling in the chest wall in places that his chest tubes could not adequately drain. On November 2nd Tyler had his chest tubes removed and on November 3rd Tyler was taken off of the ventilator. We were excited to graduate from the ICU and move to the step down unit on November 5th. Tyler had several of his IV's removed and was taken off most of the heavy pain meds prior to our transition to the step-down unit However, he was still in a considerable amount of pain so he continued to get morphine and other medications on a regular basis for several days.
Children tend to have severe headaches for approximately 2 weeks post-Glenn since the main focus of the surgery is to re-route the de-oxygenated blood from his head and upper body. In a typical heart the deoxygenated blood gets pumped into the right ventricle prior to getting sent to the lungs to be oxygenated. Since Tyler's right ventricle is busy playing the part of both the right and left ventricles, it is imperative to reduce the stress on his right ventricle so it can last longer. In order to reduce the load on his right ventricle, the surgeon surgically sutures the blood vessels bringing the deoxygenated blood from his head and upper body to vessels that dump the blood straight into his lungs by which it bypasses the heart completely. As you may imagine, the vessels go through a lot of change during the surgery and the body takes approximately two weeks to flow smoothly from the upper body into the lungs. While the transition takes place, it is assumed that blood from the head is backed up while waiting to be dumped into the lung thus creating a pressure headache. The third and final surgery will focus on rerouting the deoxygenated blood from the trunk and lower body directly into the lungs which will further reduce the load on Tyler's heart. Thankfully, we will not be preparing for that surgery for another year or two. Anyway, the nurses and doctors did a fabulous job of adequately medicating Tyler so that he stayed comfortable. They also promptly diagnosed him when he began having withdrawals from his heavy pain medications (low grade fever, constant moving of arms and legs, and constant gagging/retching) and gave him the proper medication to help his body detox more easily.
On November 9th Tyler had a sedated echo which showed that his heart was functioning very well with the surgical changes that were made. That afternoon Tyler was able to meet his Great Grandma Rose and Great Aunt Carlena! They drove up to Boston from Connecticut to spend the day with us. It was so much fun getting to catch up with them and introduce them to Tyler! On November 12th Tyler had several tests done to include a chest x-ray, lab work, and lung scan which all came back great! We were very relieved to have such good results and were cleared to discharge on November 14th. We were so happy to have such a brief stay at the hospital when compared to the 5 1/2 weeks we spent after his Norwood. On November 16th Tyler began his in-home physical therapy to address his gross motor delays and difficulty with oral motor skills such as sucking a bottle. I am constantly reminded that teaching Tyler to drink from a bottle will be a marathon, not a sprint.
On November 19th Joe and I took Sophia and Tyler into Waltham for Tyler's first post-op appointment with the cardiologist. The appointment went well and Tyler was taken off of some of his medications. Afterwards, the four of us went to one of my favorite restaurants, Cafe Luigi, in Bedford. The food was delicious as usual but the dining experience was rushed since we were eating with two small children....if you have kids you know what I'm talking about! There is nothing like asking for your check right after you place your order....
Tyler was baptized on November 24th which was a very special day for all of us. My Uncle Scott is Tyler's Godfather and Melissa is Tyler's Godmother. Unfortunately, Melissa was unable to attend the ceremony so my Aunt Monique stepped in as her proxy. We were so honored that so many of our family members came to celebrate such a special occasion with us! Later that evening we celebrated Benjamin's 21st birthday. It's hard to believe my little brother is getting so old!! ;) On November 26th we took Tyler to see his pediatrician for his post-op and 4 month old check-up. Later we went to the Cape Cod mall where Sophia had her first haircut! She did so well and really enjoyed the results! Afterwards, Joe took Sophia on a carousel ride and she had such a blast riding her horse and waving to all the mall goers eating in the food court! On November 29th we made another trip to the mall to do some Christmas shopping and we ran into Santa! Sophia took some time to warm up to Jolly ol' St. Nick but Tyler was a natural! Santa told us that he could tell that both of our children have been good this year and we tend to agree. Please enjoy the pictures and photos of our family from November!
Tyler in the ICU immediately following his Glenn
Poor, sweet boy.
Starting to wake up but still heavily medicated to keep him comfortable
Sophia found lots of fun toys in the play room!
Tyler after he came off of the ventilator
Getting ready to leave the ICU and move to the step-down unit
Walking from the Devon Nicole House (where we stayed) to see Tyler
So happy to be out of the ICU!
Part of Tyler's right lung was collapsed so he was getting nebulizer treatments to help re-inflate it
Poop explosion!
Sophia was ready to make another trip to Boston Children's Hospital
Tyler starting to learn how to sit up!
He's not so sure about it....
....and getting a little tired.
Tyler enjoying the balloon he got for his 4 month 'birthday'
The sweet sign the child life specialist made for Tyler
Tyler meeting Grandma Rose!
Tyler spending time with Grandma Rose and Aunt Carlena.
Sophia having fun at the park with Grandma
We checked out a model train exhibit they set up at the Children's Hospital
Discharged!!!
Little Miss Hollywood
Ava worn out after a fun day at gymnastics
Ava being silly while eating her lunch and at this age it's Monkey see...
...Monkey do!
Joe and his kiddos!
Sophia loves her new tu tu from Nana.
Christening day for our little man!
Benjamin helping get Tyler dressed for the baptism
Us girls
Tyler is not too thrilled about being in his tux.
Neither kid was interested in this photo shoot
The men ;)
Tyler with his Godfather, Uncle Scott
Tyler with the lovely Norrie family
Uncle Scott with his two Godsons
Aunt Carol came to share Tyler's special day
Aunt Gail came all the way from Florida to be with us!
Watching Grandpa do yard work.
Multi-tasking Daddy...eating pie while "feeding" Tyler via G-tube.
Tyler's not so sure how he feels about this situation.
Sophia's first hair cut!
Playing with all of her bows!
Grandpa playing along with Sophia. What a good sport!
Sophia seeing Joe for the first time in two months
Bedford?! You were right outside our gate!! We haven't tried Cafe Luigi yet, I guess we will now. Sam had surgery at Children's in Waltham, so we are familiar with the area. If you guys ever have "free time " when you are in the area, or even just need a pace to rest, please let us know! My email is my first and last name at gmail dot com. Glad to see your sweet family doing well.
Bedford?! You were right outside our gate!! We haven't tried Cafe Luigi yet, I guess we will now. Sam had surgery at Children's in Waltham, so we are familiar with the area. If you guys ever have "free time " when you are in the area, or even just need a pace to rest, please let us know! My email is my first and last name at gmail dot com. Glad to see your sweet family doing well.
ReplyDelete