I’m not gonna sugar coat it, Day 29 was horrible. Haha. I can laugh about it now, but in the moment I was doing everything I could not to scream and cry and throw my own tantrum 😉
We knew it was going to be rough. She had been on steroids for 29 days. She was STARVING all the time, getting up multiple times a night to eat and therefore exhausted, very depressed during the day, and super short and impatient with everyone around her. On top of all of this, she had to fast from midnight until after her Lumbar Puncture, which wasn’t scheduled until 2:30pm the next day. AHHHH! I knew fasting that long for her was going to be nearly impossible. I mean the girl got up at least three times a night to eat, then had breakfast when we did, then two big snacks before lunch, then a huge lunch, and then at least one more snack, usually two, before 2:30pm even rolled around. How were we going to do this!?
I had been calling the clinic since Monday to see if there had been any cancellations in the CPU. We were just praying for an earlier time. They told me not to call back until Wed after 2pm, thats when they knew if there were cancellations for the next day. At 2pm on the dot, I said a prayer and dialed the clinic. I told them my daughter was scheduled for 2:30pm and that she was on steroids and fasting that long was nearly impossible and asked if there was any way they could move her earlier. They looked her up and said, “Oh, she has already been moved to 12pm”. HALLELUJAH! I hung up and cried tears of joy. It was only two hours earlier, but that was still a huge deal!
That night before bed I told Liv that she was going to have to go to sleep the next day at the hospital and that she won’t be able to eat anything after midnight tonight. I told her I was going to wake her up at 11:30pm to let her eat something, and then after that, if she woke up during the night, she would only be able to drink water, apple juice or sprite. She said she understood, but I was totally freaking out inside. I knew that if she woke up and I couldn’t give her food she was going to go into her scream crying fit and wake up everyone else in the house. I also knew that she would never give up, so we were going to be up all night with her. That would have made for an even harder day at the hospital if she was exhausted. I prayed extra hard that night that she would be able to sleep through the night and ignore the hunger pains. At 11:30pm, I woke her up, fed her a peanut butter and jelly sandwich and yogurt and she went right back to bed. The next thing I new, my alarm was going off at 6:30am. She didn’t wake up! It was a miracle! I know it sounds small, but I knew that was an answer to my prayers.
I kept expecting her to ask for breakfast but she never did! She wanted a drink of sprite and took her medicine (HER LAST DOSE OF STEROIDS!) with a bite of jello (the only thing she is allowed to swallow her pills with when she is fasting) and we loaded into the car. As soon as we got out in the car she started crying and saying “I don’t want to go to sleep, Mommy!” 😦 I tried to get her to drink in the car because she could drink until 9am and then after that she couldn’t have anything, but she refused. She was really upset and my heart just broke for her.
Half way up to the hospital Livvi said, “Mommy! You forgot my cream!” My heart sunk. Oh no! What have I done?! I wanted this day to go smoothly and now I’ve created a situation that was for sure going to rile her up.
She has a special numbing cream we put on her skin over her port before we leave for clinic. It takes about 45 minutes to completely numb the area so by the time we get there its numb for the nurses to access her port and draw her labs.
I felt so horrible! Luckily, we were going to be getting there 25 minutes early (I’m a freak about leaving early for things) so I thought that they would be able to put it on her then and it would all work out. We ran into clinic and I asked if they had cream they could put on her. They told us that they could, but unfortunately they would have to access her right at 9:30am, which was about 15 minutes before the cream would be fully working. When they have patients going down for sedation, it is very important that they stay right on schedule. They said we could either do the cream, and not have it fully numb, or we could try the freezy spray. I had no idea what freezy spray was so they said they would show us. She brought it out and told Liv that it was just really cold spray. She said she was just going to spray it on her finger and she could see what it felt like. Of course, Liv flipped, so the nurse said, “Do you want me to do it on your mom’s finger first?” She nodded “yes”, so I stuck my finger out and she sprayed it. Rick brilliantly said, “It’s Elsa spray, Liv!” I told her it was just cold and didn’t hurt at all. Then she wanted Rick to get sprayed and he said the same thing. That calmed her down enough that she was willing to feel it herself. She didn’t panic, so I thought that was a good sign and I told the nurses we would try that this time. They went to get it ready in her room while Liv got her vitals done.
Liv started wailing as soon as they brought her over for her weight, height and blood pressure. It was super loud, and everyone was looking at her. But, aside from the week before, this was kinda par for the course. Only this week was about ten decibels higher. They weighed her and she was up 14 lbs from when she started induction. They did her blood pressure and it was really high, they figure partly because she has been a little high with the added weight, but mostly because she was screaming 🙂
We did port access, she screamed the whole time, but didn’t seem to feel it go in so I think we may be doing freezy spray from now on 🙂 I’m going to ask her next week which she wants but I think she seemed to prefer the freezy spray. Once she was accessed and labs were drawn, the doctors started coming in. This made her wail even louder. The child life specialist tried EVERYTHING to try and calm her down, but nothing was working. So the full hour that we met with the nurse practitioner and the doctor, she was wailing at the top of her lungs, and they had to yell over her. It was awesome. I have a video, but figured I would spare you all 🙂 Once the doctors left, her wailing went down a few notches but I still couldn’t get her to stop. I kept asking her if she wanted to play Memory and she would just wail louder but not answer me. Finally, I decided to just set it up and see what happens. Once it was set up she started playing and her wailing went down to her usual moan that she has been doing all month. We played two games, she beat me of course, even with moaning the whole time. She’s extra talented 😉
After the appointment we headed down to the CPU, with Liv crying every step of the way. Once in the CPU, I got her a coloring page to work on. Rick colored with her and she did her moaning the whole time they colored. There was a lady sitting across from us that was staring at Liv with her sad bright red face, her moan, and her bald head and she just couldn’t hold back. She had tears streaming down her face. This of course made me start to cry. I thought back to when I had visited Primary Children’s with Liv the year before to have her legs looked at (a story for another time 😉 ) I remember seeing the little bald kids and crying on the spot. I couldn’t imagine how hard that must be on them, and their parents. And now here I am, living that exact thing, and its already become so normal for me. Crazy.
We got called back to the waiting room and the child life specialist asked over Liv’s crying if there was anything they could get for her to calm her down. She suggested coloring but I knew that wouldn’t help. Then she suggested play-doh and Liv’s wails stopped for a second. Haha. She loves playdoh. She and Rick started making things and it was the first time all day that we saw a smile on her face 🙂
Luckily her “back poke” wasn’t scheduled in the OR this time, so I got to go back with her while she was put under. Her anesthesiologist this time was so great. We have had her before. Its funny because we had her 3 weeks ago when she was put under, but when she saw us she said, “I know I’ve helped Livvi before, but it must have been a few months ago.” Clearly meaning that she has changed so much from the last time she saw her. I told her that it was just a few weeks ago but that the weight and the hair all happened very fast. She was so sweet and let me come back with Liv and hold her hand (they just opened a new procedure room, we no longer do it in the RTU which was guaranteed that the parents could go back with them. Now, in the CPU, its up to the doctor if they are ok with the parents going back). Liv was crying hard. The nurse practitioner was in there as well as another nurse and the doctor. They put the medicine in her port and one second later she was out. Each time I watch that it gets easier, which is kind of sad, but I’m also grateful.
Rick and I waited in the waiting room for her to be done. It was pretty quick this time, only about 20 minutes. When we got back to see her, she was already awake and had a scowl on her face. As soon as she saw me she said, “I’m hungry.” I told her I would ask the nurse if she could have something and that set her off. She wanted it NOW. She started crying. Luckily, the nurse walked by and I quickly asked her if she could have the snack I packed. The nurse said yes and I grabbed the cheese stick as fast as I could. She immediately started shoving it in her mouth. The poor thing was so hungry! After her cheese stick she was begging to go get lunch. We couldn’t get out of there fast enough. She wanted fries and a cheeseburger from the cafeteria so badly. Rick and I kinda hate the cafeteria so we took her there and then we wanted to get food somewhere else. Of course she wanted food where we went too so she had quite the lunch 🙂
Once we were finally home for the day she did pretty well. She still moaned and cried for some of the day but for the most part she was happy. I was relieved knowing that the steroids were done, and her day 29 procedure was behind us. Now all we had to do was wait for the results. Tuesday couldn’t come fast enough.