Sorry I haven't kept you as updated as I have in the past but this trip has been pretty busy. Normally, Tillery naps throughout the day and goes to bed hours before I do and I have plenty of downtime to write my posts and play a lot of Candy Crush. (Guilty pleasure!)
This stay has been a whole new animal. Tillery talks non-stop and isn't content to just watch movies but needs your full attention to play or ask questions. She isn't much of a fan of naps so she only takes one short one daily, which barely allows time for a hike to the cafeteria or a shower. She has stayed up late every night and I've been ready to go to bed hours before her on this trip. And the biggest change is...she's mobile! After her first pass to go downstairs, it was near impossible to keep her in bed. She loved walking the halls and when she was in the room, she preferred sitting on the couch in the corner over laying in a boring hospital bed.
The first 24 hours after surgery were rough. Tillery was uncomfortable and was communicating that to us. There was a lot of crying and whining and she just wanted to be with her mommy. Within about 30 minutes of being in the PICU, the nurses had me up in the bed with Tillery laying on me. Even laying on me with my arms wrapped around her she still kept saying "I want my mommy" over and over. It was heartbreaking but I kept reminding myself that she was still pretty drugged and would not have memories of that time. Nana, Poppo, Joe, and I took turns rotating time with Luke at the Ronald McDonald House following surgery.
Finally, we were given permission to bring Luke over for a 15 minute visit. Luke has never been allowed to visit in the PICU and we weren't expecting that he would be able to, but with him being older and understanding things more and with them being so attached to each other, we were so thankful to be able to have him come up. He didn't bat an eye at the bandages or the drain coming from her head. He came in and climbed right in bed, just like he has so many times before, and immediately started playing their normal game of picnic. Even though she was tired and uncomfortable, having her goofy brother there with her, even for just a few minutes, was definitely the highlight of her day. It was good for all of us to see how adaptable they both are.
Saturday morning, Tillery was moved to the neurosurgery floor. A7 is where Tillery spent all of September and October and the nurses, PCAs, and support staff all know her there. It was like a big reunion as people kept dropping by when they heard she was there. Luke and Joe had to head home that afternoon but they got in some time together before leaving town. Nana and Poppo planned to stay through the weekend to help me out with big kid Tillery. She loves them so much and was thrilled to have extra time with them. Nana always fixes her hair and lets her play with her purse and Poppo is so crazy and keeps her laughing. Nana and Poppo are definitely good medicine!
The weekend in the hospital is really the pits. Timing of rounds varies so it's hard for parents to leave the room because you are always waiting for the doctors to come by, never knowing when that might be. The cafeteria has an abbreviated menu which makes for uninteresting salad bars and Cincinnati staples that are unappetizing to out-of-towners (I'm looking at you, Gold Star and LaRosa's). All fun activities at the hospital happen during the week so it's hard to find toys or entertainment on the weekend.
Saturday evening, we got a hall pass for Tillery. They brought us a wagon but she was too scared to get in it. I carried her until we got off the elevators on the main concourse and then forced her into the wagon. Once she was in, she had fun and started talking about everything we passed. We tried to get her out to walk but she didn't want to and got upset after just a few steps. We ended up in the cafeteria, eating a quick meal before heading back to bed. After we ate, Tillery decided she wanted to surprise Nana and Poppo by standing up, but then before they could see her standing, she changed her mind and decided she would rather run! Having her take off with her freshly constructed skull was a little terrifying for all of us but also a joy to see!
Sunday was just another day at the hospital. Tillery was doing so well, it seemed silly to still be there. The only things keeping us there were her drain output from her incision and the fact that she wasn't drinking. They had put her on IV fluids and said she couldn't leave until she started drinking on her own so I offered a compromise and we started giving her water boluses through her g tube. She has been eating and drinking well at home for months and never uses the tube and we had hoped to be rid of it. It seemed that if a little water consumption was gonna keep us in the hospital, we might as well unplug the tube and make use of it! The drain output was a different story. It was set up to work as a suction to draw blood/fluid off the surgical site so that pooling didn't happen in her head. The bleeding had stopped so they turned the suction off and decided to keep the drain in for a bit longer just to be sure that it was no longer needed.
Monday was the big day! We were told Monday morning that they would be removing the drain and we would see Dr. V that afternoon and possibly be discharged within the next 24 hours. A few hours later, they said Dr. V was fine for us to go ahead and be discharged and he would see us in two weeks at her follow up appointment. All that was left was to remove the drain and send us on our way.
Travel back with me to last Fall when Tillery had her shunt externalized. She was having painful dressing changes on her head multiple times a week and had bedside stitches at least 3 times. Once, the drain fell out and it became an emergency situation where all the staff from the floor flooded the room and craziness happened while we prepared for an emergency surgery. I remind you of that to say that pulling out a giant tube from her head and putting in a few stitches is not far from Tillery's wheelhouse. I'll also remind you of the time they gave her Ativan to calm her when they had to do bedside stitches and instead she became the Incredible Hulk. I'll remind you of Friday when we walked her to the operating room and they gave her Midazolam to calm her as we parted and instead she sobbed and cried for us. So I bring you to Monday, when they gave her Fentanyl to make her drowsy for the procedure. After a few minutes, the nurse practitioner said to the nurse "You can go ahead and give the Fentanyl." and the nurse replied "I already have." and then they both looked at me in shock as they asked, "Is she immune to Fentanyl?" Well, no more time or options, we laid her back and I crawled onto the bed and laid across her. The nurse held her head still while the NP quickly pulled the drain and put 3 stitches in Tillery's head. It was the third time I have seen a neurosurgery NP have tears in their eyes after having to cause Tillery pain. I can tell she is a special one for them and I appreciate their care for her.
After the drain was out, it was a quick dash to the finish line. We dressed her in real clothes, pulled the leads off her chest and the pulse ox off her toe, and de-accessed her port. We were in the car heading South by about 2:30 pm on Monday. The original estimate we were given was that she would be in the hospital for 7-10 days. She was in for 4. As always, she refuses to do what is expected.
Since we have been home, it's as though nothing has changed. This morning, Tillery and Luke has a contest to see who could spin around the most before they got dizzy, an excellent game when you just had your skull stitched together! She's been back to eating all her favorite snacks and has been drinking better. She hates having her incision care done but this isn't our first rodeo so I know we will be through this in the blink of an eye. We will travel back to Cincinnati to follow up with neurosurgery on August 1st and have her stitches removed at that time. On August 2nd, we will regroup with oncology to map out a plan for chemotherapy moving forward and determine the right time for her next major tumor debulking surgery. We haven't followed their roadmap very well so far so it almost seems silly to have them draw out new plans for us. Tillery always charts her own path!
As always, thanks for caring, sharing, and being a part of this journey with us! We feel the love and it makes the dark days a little brighter.
Here's some pictures from this trip:
In PICU following surgery
The whole family together for 15 minutes.
Our sweet friends, Sandy and Diana, sent Tillery a doll with matching hospital gowns for her and her doll.
Laughing with Nana on our first venture outside
For anyone who wanted to participate in our Stitch a Thon, Tillery had 45 stitches. We are asking for donations of $45 (or any amount) to The Cure Starts Now in her honor. $1 per stitch to give her scar a meaning. Here's the link to donate.
Also, for those who collect tabs for the Ronald McDonald House - Luke's project - we are excited to announce that we had 140 lbs of tabs this trip! Keep saving them for us and we will top that next time!