Many months ago, Vi was seen in the CP clinic at the Children’s Hospital of Philadelphia.
They get a whole team of specialists to see your child, all in one day! So it was like a 6 hour long appointment, but well worth it to see everyone who needed to be involved in her care in one go instead of trying to piece together specialists all over the place.
They gave us a prescription for her braces back then and also recommended that she have botox injections. This is pretty standard practice for a lot of CP kids, but it especially makes sense for Vi because so few of her muscle groups are really affected by her CP. Some kids with CP have more total body involvement, and benefit greatly from oral medications that help relax all their muscles. For Vi, this would have created a lot of side effects without the targeted benefit that the shots could provide.
We scheduled an appointment for botox and were told it would b 6-8 months out. Well, then when they called with a cancellation I mentioned to the nurse that By the way, Vi snores when she sleeps. Since they would be sedating her for the procedure it was essential to make sure she would, you know, keep breathing! That meant we had to schedule a sleep study, which took a couple months to get in for, then get the results, and then reschedule the botox for almost 6 months later again. So, the appointment finally arrived.
(I won’t get in to the drama of how the hospital called me three days ago and said we didn’t have the proper referral and how I had to get my pediatricians office to fax an URGENT request to Tricare and how I spent hours on the phone the last three days trying to get the request pushed through so we wouldn’t have to wait another 6 months and didn’t get a final answer until 7 am this morning when we were already on our way to Philly that Yes, in fact, the referral was finally approved. And then Tricare told me actually she never really needed it at all. Cause that whole story pretty much makes me want to kick people in the shins.)
So, this morning I left the house with Vi around 630. I thought she would be upset about not being allowed to eat or drink anything after dinner last night, but she did great. She didn’t complain at all. She was very chatty the whole ride down to the hospital, and she talked a LOT about Ukraine, and the Nannies, and her friends, and me coming to get her etc. This, I have noticed, is very typical behavior when she is stressed out or worried about something. Clearly, knowing she was going for “shots to help her legs” was worrisome, even though I had explained to her that she would be asleep and not remember any of it.
I wasn’t sure how it was going to work, but it turned out that on the sedation unit there at CHOP I was able to stay with Vi the WHOLE TIME! This was wonderful and once she heard I would be staying with her she was much more relaxed.
We saw was a Nurse Practitioner named Margaret, who was going to be in charge of the sedation portion and wanted to chat some about Vi and her medical history and how they would be managing her airway since it seems that while she passed the sleep study, she does have very large adenoids that could pose a problem.
Vi really, really liked Margaret. Like Immediately.
There were lots of nurses in and out of the room too. Winnie was the nurse who gave Vi her medication to start relaxing her. They gave her some Versed before even starting her IV or anything. She got very relaxed, very quickly. And maybe just a tad bit silly!
Vi said I needed to take a picture of “her arm thing” to show everyone what a big brave girl she was as well.
They gave her some zofran so she wouldn’t puke, and put numbing cream on all the sites on her legs they would be injecting. They also gave her some IV Fentanyl for pain control.
At this point, she took the oxygen mask from the other NP who was in the room, and said she was going to hold it over her own mouth. She said “Here, I’ll put this on my mouth. Then I will stop being annoying.”
Even heavily medicated, this girl is a Take-Charge kind of kid!
She never fell asleep completely. Just before they started the procedure she pretty much demanded to speak with Margaret again, so she came in and I think we ended up with 3 NP’s in the room, 3 nurses, and the doctor. She was telling Margaret how much she liked her face and her brown hair, and about Disney and how she went to Belle’s house. She kind of checked out for a little bit, they had given her more versed and fentanyl since she was still very awake and that seemed to at least help her relax enough to stop talking.
But then instead of talking, she started crying.
And she cried, and cried.
I was right there, literally cheek to cheek with her, kissing her forehead and telling her Mama was there and it was ok. The NP’s both at the head of the bed managing her oxygen were talking about us adopting Vi and asked if we had other kids. I said yes, she has 4 siblings at home. They gasped, and Margaret said “There’s a special place in heaven for people like you.”
I hate to admit it, but I started to cry. Vi was still crying and I had promised her this wouldn’t hurt and she would be sleeping. I felt really powerless, and at the moment I didn’t feel like a very good Mom. My emotional brain felt like a Mom who was letting strangers hurt her baby, and I just wanted to tell them to stop. My Nurse Brain knew it was for the best, but my heart just wanted to scoop her up and rock her until she stopped crying.
Margaret reassured me this was “the Versed cry”. She said not to worry, that kids either laugh hysterically or cry uncontrollably. It was just the medicine, she wasn’t in pain. I wasn’t so sure. She said once the procedure was over most kids fall right to sleep for about 45 minutes.
Finally, after what seemed like forever but was probably about 40 minutes, they were all done. Everyone cleared out except for Winnie. Vi was still crying. I asked if I could hold her but Winnie said no. She did say I could get in to the bed with her, so I did. She curled up against my chest and started calling out “Mama! Mama!!” She would look at me, but it was like she couldn’t see me or hear me.
She cried, and tried to form words, for those 45 minutes instead. Margaret came in to check on her, and brought her a little blue bear. She kept crying. I showed her the new bear, and tried to distract her with giving it a name. She wanted to name it “Margaret”. Then she cried some more. Eventually, the medicine seemed like it was wearing off and she suddenly looked and me and asked “Mama, when are my shots?” I told her they were all done. She started WAILING.
“They are NOT ALL DONE! My legs DON’T HURT! It won’t make me better!!!”
I tried to reassure her that they were, in fact, all done, but she wouldn’t have it. She demanded, Again, to see Margaret. God love those nurses, they went and found her and let her know Vi really had to speak with her. Like, NOW. Once she came in and explained to Vi that she had been sleeping and she had all her shots all done, Vi finally calmed down. Margaret also brought her a snack. We talked about how Margaret gave her the bear, and that Vi was going to name the bear after her. Then Vi said she wanted her picture taken, even though she still couldn’t really fully open her eyes.
Then she said “Mama, I did such a good job. I didn’t cry AT ALL!”
So, there you have it. It really was “the Versed cry.”
She has NO recollection of the actual procedure, of crying for over hour, of any discomfort at all. I was SO relieved! The whole staff was so wonderfully sweet and kind to her. She did tell me right before we left that she thought she did cry a little bit. I asked her why she was crying because I wanted to make sure it wasn’t that she was remembering being in pain. She said “Mama, I had a bad dream while I was sleeping during my shots.” I said Oh, what was it about? And she said “I dream you take me back to Ukraine and leave me, and the Nannies taked my Mama.” with big tears starting to well up in her eyes again. I told her not to worry, that even though she doesn’t remember Mama was RIGHT THERE with her the WHOLE time, holding her hand and giving her kisses and that I would never, EVER take her back to Ukraine. Break. My. Heart.
When it was time to go Vi said she needed a hug from her new best friend Margaret. She told Vi she was so proud of her and what a big strong girl she was, and how all the nurses who met her today just thought she was the coolest kid EVER. Another nurse took us out to the car with Vi in a wheelchair, which Vi kept calling “A high-chair, Mama. A high chair with WHEELS!” In case I didn’t know what it was.
We went to Moe’s for lunch, it’s one of her favorites. In the car she had started complaining of not feeling well, and when we tried to walk in to Moe’s (after we had been driving about an hour) she nearly fell over. She said she was going to be sick, so I ran her to the bathroom, only to find out that what was really wrong was all those IV fluids made her super have to pee!! The pain medicine must have been making it difficult for her to tell exactly what was wrong. She used the bathroom and immediately brightened back up, smiled at me and said “Mama, I’m all better! Let’s eat quesadillas!” And a cookie too, of course.
We are excited to see how much these treatments will help her in the coming weeks. The nurse said to expect it to take about a week before we saw any changes and certainly not to expect anything huge or sudden over the weekend or to be disappointed if we didn’t see much change right away.
I hope it helps her. I hope it makes her legs feel better. I hope she knows how proud I am of her and how strong she really is! She stole my heart all over again today in that room, crying for me, Her Mama. Now and forever, sweet girl
I think she stole quite a few other hearts today as well. I’m so proud of my sweet, smart, silly, tough, strong, beautiful girl!