This surgery has been looming on the horizon for several years. We are still getting through it, but I’m so thankful the hardest part is behind us.
We left at 4:30 am to get there in time for her 6:00 check in. But at least she had a sleep mask.
Waiting was easy- she was in good spirits and chatted away with all the nurses/anesthesiologists/surgeons/child life specialists that popped in and out of her room. She had the absolute best anesthesiology team we’ve ever had- they were wonderful. As soon as they learned she liked the new Paw Patrol movie, they put it on a huge screen in front of her to watch as she went to sleep.
The next 7 hours were hard as we anxiously waited for each text message to come through giving us updates on her progress. Her surgeons met with us to explain how everything went before we were finally able to see her.
Everything went very well, and they were able to remove about 75% of her malformations in that area. They did anticipate a lot of fluid to come out of her drains, and asked if we would be comfortable going home with them because they would need to be in for awhile. The fluid didn’t amount to much in the hospital, but really increased as soon as she started getting up and moving around.
She was still very sleepy from all the anesthesia and medicine she received during surgery. She woke up a little as we headed up to her room, looked at me and declared “I thought the doctors were going to take my mass off!” I told her they already did, to which she looked under the blanket to check for herself. Then went back to sleep. She really came out of it around 11:30 at night and realized she had IVs and tubes everywhere. She was not happy, and neither of us slept much that night. The following day wasn’t much better, and we both shed a lot of tears.
Ben got right to work on the dollhouse that she was promised following surgery. Even thought she couldn’t play with it right away, she was excited to actually see it. She was also very excited that the hospital had bomb pops, and told her she could eat as many as she wanted.
My mom brought the bigger kids up after school to stay in a hotel across the street and Ben switched places with her.
We had a better night, and then the following morning our funny, happy girl returned.
While she played with my mom, I ran across the street to say hi to the other kiddos.
They had such a fun time swimming in the pool with Ben. And being at the hotel- apparently it’s a favorite. 😂
Tess had a huge day and accomplished so many tasks off her “to do” list!
She was such a trooper- each day she had new things to do and her IVs were driving her crazy. But she blew us away with all that she could do considering the new, large incisions she had in her body. On Sunday she got out of bed and didn’t get back in it until that night when it was time to go to sleep.
We are so incredibly thankful for the many gifts she received before and during her hospital stay- they were (and still are) such a lifesaver! She received so many different things to keep her busy and distracted- it was perfect.
By Monday morning she was packed and ready to head home.
And it felt so good.
Since coming home (even with forced periods of rest) her fluid output has gone from about 50 ml a day to almost 200, with it increasing every day. This Thursday she will be having sclerotherapy to try to collapse and scar the leaking lymphatic channels. We’re so thankful for each prayer that has been sent up on her behalf, and would humbly ask for a few more that this procedure will work and that her fluid output would finally start to decrease.
This post makes my heart want to explode! I’m so proud of her and you and Ben, and the kids. Such a trying time, that you all leaned on each other, and God ,to get through. Continued prayers for the upcoming surgery!
My heart and prayers are with you❤️🙏🏼🙏🏼