Hopefully All Done...(Update on Zoe's Condition)







As many of you are aware, Zoe had surgery in November for a urinary condition called Vesicoureteral Reflux. If you have questions about what that is, you can look within my blog at these posts: Zoe: The Most Popular Baby in the Hospital or More Crazy Adventures for Zobug (Another Update). Since we had a follow up today, I thought I would share the story of her surgery.


The morning of Zoe's surgery, Nate, Zoe and I got up very early to drive to St. Louis Children's Hospital. Our check-in time was 6:00am, we live an hour from Children's, so it was a very early morning. Despite the fact that I am not at all a morning person, I was glad that Zoe had an early surgery time. She had to fast from midnight the night before until her surgery and if you know Zoe and I, you know that we aren't the most pleasant people without food. Her early surgery time meant that she didn't have to wait all day without eating. Anyway, we got there at 5:58! Woohooo! We were EARLY! We are never early anywhere now that we have two children. 

We got checked in and started pre-op. The very nice nurses took us back and we sat back there for quite a while. Eventually they had Zoe change and then they gave her some medicine to sedate her a bit to make it easier to separate from Mommy and Daddy. Zoe's sedated time with us was hilarious. She was acting pretty drunk which actually was great comic relief for worried Mommy and Daddy. A doctor came in and she introduced her stuffed Clifford as her brother Zach. She also was very confused about why a ball was in her hand that had been given to her about an hour before hand and why the TV was on. Not long after they gave her the sedation medicine they took her back. Mommy and Daddy handled it pretty well. They even let Clifford go back to surgery with her. He had an hospital bracelet too. St. Louis Children's really knows how to make kids feel as comfortable as possible in these scary situations.


Feeling a little nervous...


Doing a bit better


Getting some snuggle time in with Dad, Clifford, and her new unicorn, Jenny. She was given Jenny by the Child Life Specialists (they are around to make the kids feel comfortable). It was super exciting to get Jenny because she didn't have a unicorn.

Zoe's surgery was a little under three hours long by the time they got her to recovery and we got to go back to see her. During the waiting time, we had breakfast (the cafeteria has excellent biscuits and gravy), had some visitors, and tried to distract ourselves with reading or looking at our phones. Half way through the surgery Nate got a call on his cell phone that everything was going great. I was impressed that they just called him up on his cell phone to give us an update. In Texas, they called us on the waiting room phone. Finally, we saw on the board that she was out of surgery and eventually they called us back to see her. This was one of the tougher parts of our time for me. She was coming out of anesthesia. They had just replaced her IV because she pulled it out before we came back and she was not comfortable at all. She had a catheter in, which let's be real, no one likes a catheter, now imagine having one as a three year old. She had no idea how to handle it. Also, we were shown her incision. They had it stitched and it was covered with glue, no band-aid. I was a little scared of it. After a while, they moved us up to a room because she would have to stay at least one night since she had open surgery. Now as a parent, I'm like, only one night?!? You just cut her open. There are like 700 things that I am worried about when taking home a child that has just been cut open. We'll get to that more later.


Trying to stay awake.


Snuggled under the blanket Norma made for her. The fabric even has her name on it. 


We got upstairs and moved into a semi-private room. Now, I am a huge fan of St. Louis Children's Hospital and obviously trusted them with my child's life, but my one compliant is semi-private rooms. A sick kid having a roommate is like asking for a disaster. In the middle of the night, our first night there, Zoe's roommate started crying, "I want to go home", so naturally Zoe had to join her in her perilous cry and started crying to go home as well. Also, the rooms are not proportional at all so one side is huge and the other side is tiny. Thankfully, the second night we were there, we were able to move to the other side.  The one thing that is nice about your child having a roommate is that there is another parent that may be someone to talk to and show you the ropes. 

Not long after we were in the room, we were visited by our family friend Steve who always the best bearer of snacks. He also brought some goodies for Zoe and gave us a break to go walk around. We also were visited by every movie character/mascot/Santa/Ronald McDonald and various other fictional characters because there was a celebration in honor of turning on the hospital's lights for the Christmas season. These characters sang and brought so many gifts. Zoe might have gotten more gifts in the hospital than she did for Christmas. The back of our van was full when we left. Sadly, she was still pretty out of it when they came around. When Santa and Mrs. Claus walked in she was getting sick. She really wanted to be happy and enjoy them but she was just so worn out and not feeling well. I asked her about it later and she remembers them singing to her and visiting her so that's good. I also took some pictures to show her. 


Louie, the mascot of the St. Louis Blues, stopped by with a stuffed animal for Zoe.


A storm trooper and Jedi were making the rounds.


Princess time!


Had to get a picture with the princesses....and Spiderman.


Ronald McDonald...scary. He was in a group with the scary bear and terrifying snowman in the next picture. When they were down the hall from us they made one kid scream pretty loud. Let's just say they weren't the favoeite group.



Mickey and Minnie...They didn't really look authentic...


Marshall from Paw Patrol!

That first night was okay but a little rough. She hated having the catheter in and it was leaking so it left a big bloody spot on the sheets at one point and I may or may not have gotten a bit nervous and called the nurse. She said it was normal but if she would have seen that she would have gotten scared too. She also was glad I called so we could change the sheets for Zozo. The worst part of the first night was that Zoe kept throwing up every time she was given medicine. This means that she wasn't actually getting pain medication. That caught up to her in the middle of the night. Thankfully, the nurses were right there and put some morphine through her line right away. 

The next day was going pretty good until her blood pressure started spiking, she had a rash and she was really tired all of a sudden. The nurses got concerned because she was almost unresponsive at one point. They called her doctor, he came up and said "Hi, Zoe." and she popped up and told him hi like nothing ever happened. The nurse and I locked eyes, like WHAT. I just mouthed "I'm sorry" at her. I felt so bad that she called the doctor up and then when he got there Zoe was all like, "People, I'm cool." When the doctor left, I told the nurse I was sorry again and this was my life. She is always throwing me curve balls. Because of her not tolerating the medicine well and her strange little episodes the doctor decided to keep her one more night. I was totally on board with that because I was nervous about taking her home.

In order to keep her more alert and get her blood pumping a bit more, we had to play in the playroom on our floor and then once things settled down a bit, we went to the big playroom. It was awesome. She loved the playroom so much that she still talks about missing it and wanting to go back to play there. She also felt well enough that she got to go to a Christmas party downstairs that night. She played games, saw Santa again and got more goodies.




In the playroom, and as you can see, she had to have her IV follow her everywhere. She called it her tower which was pretty cute.




Playing St. Louis Bingo...Mama's kind of Bingo.

The second night wasn't as rough. Zoe slept most of the night, but she wanted me to sleep with her. Hospital beds aren't meant for two people. Also, her nights and days were kind of mixed up at this point so we watched Frozen on loop for half the night and Moana on loop half the night. When I would turn them off, she would wake up and want them back on. When you are in the hospital because they had to cut you open, you get to watch Frozen at 2am. 

The next day I finally got her to eat and drink a little bit. She didn't want much because they had her IV fluids turned way up to flush her kidneys and her bladder. She got to play more in the playroom. We were discharged later that day. 

I want to take a moment to talk about the staff at St. Louis Children's Hospital. Children's hospitals have employees that are exceptional at their jobs. They are not just taking care of their tiny human patients, they are caring for the parents too. They are dealing with heartbreakingly sick children and their terrified parents. And let me tell you, of the two times that Zoe has been admitted to the hospital, both times, I have had moments of insanity and thank goodness for patient medical professionals who put me at ease and didn't punch me in the face or tranquilize me. So to all of you out there who work at St. Louis Children's Hospital and other hospitals that threat the littles, keep up the good work, you are strong people.

Fast forward 3 about three months to last Friday; we got great news! From everything the doctor can see, Zoe is healing nicely and her surgery was a success. This means won't have to give her antibiotics every night anymore. She has been on prophylactic antibiotics since she was three months old. While this was necessary for the health of her kidneys to prevent infections and scarring, it isn't something you want to take every day forever. So we are all very happy to be ending her nightly medicine. 

Well, that was a super long post. God is certainly good. That's all for now.

2 comments

  1. Oh Katie. This is so heartbreaking. I am SO thankful that she seems to be moving to the "other side" of everything. Praying for continued good health and strength for all of you.

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  2. Thanks Amy! We are just happy she received such great care and is hopefully done.

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