Even though I am about a month behind on my blog, I know I needed to give an update on Ariana.
on Monday, June 3 at 7 AM, we said goodbye to Gabe and Bella, who were in good hands with both of the grandmas and took Ari in to Cardon’s Children’s Medical Center for her Selective Dorsal Rhizotomy. Her surgery was originally scheduled for 7:30 AM, but because Ari’s doctor had just found out about her clotting disorders, he decided to postpone the surgery till 10 AM, just to make sure that we had all the necessary blood work prior to starting.
Backstory: Two days before surgery, I had a chat with the doc about Ari’s horrendous veins just so he could be aware of it during surgery. He tried to reassure me by telling me that they’d put in a Picc line (central arterial line) that would last the entire hospital stay, so they wouldn’t have to mess with her scrawny veins. Knowing that Ari’s blood clotting disorders (Factor V Leiden and MTHFR) make her ineligible for a Picc line because of the increased risk of developing a clot, I realized at that time that this was the first he’d heard of Ari’s clotting disorders.
Surgery day rolled around and it turned out that he already had most of the correct blood tests already run off and her levels were all within normal ranges. This was a big relief, because her clotting disorders have the potential to complicate everything. After one failed attempt at drawing more labs, she was given a reprieve. Happy mommy. So, we just decorated her “sleepy mask” with stickers and scented it with candy flavoring brought in by Child Life and played on the iPad. Marci, Jake, Liam, and I all stayed with her until she left for the OR. Jake and I (and almost everyone we know) were very nervous. I’m not so sure what we were nervous about most – whether it was the idea of making permanent and maybe regressive changes, of the inevitable pain she’d experience, of the possibility of something more serious occurring, like a blood clot or a seizure, or if it was just the thought of our baby being injured and altered in that way. But as nervous as I felt, I also felt surprised at my relative calm compared to what I expected to be feeling. To be honest, I was expecting to be a wreck that morning, and I wasn’t. I really believe that I was calmed by the prayer and supportive thoughts and energy coming our way. It was overwhelming the love and support we felt that day, and I couldn’t have been more grateful. I did not feel alone.
At 10 AM, it was time for her to go in. She was so distracted by the iPad that she didn’t have even a moment’s hesitation. I knew that with Dr. Moss she was in the best hands. Dr. Moss also mentioned (twice) that her anesthesiologist was excellent. I felt a little relief at hearing this.
The OR nurse called me three times during surgery; each time to update me that things were going very well. I loved that they did this. I felt that they really did have a heart for the parents, and it was just a kind gesture. During the surgery, Marci, Liam and I waited in an empty room near the OR. We sat in the dark, tried to get Liam to take a nap on a play mat on the floor by pretending to sleep beside him, chatted nervously, ate in shifts, and texted updates… anything to pass the time.
At 2 PM, Dr. Moss came into the room and informed us that the surgery went very well and “couldn’t have gone better.” I don’t think he could have said anything nicer to hear at that time. He told us that Ari was in recovery and that she would be in the ICU in fifteen minutes. He told us that her pain level would be very severe, but that he would give her all he could to manage it. He said he wanted to keep her “snowed” for the first 48 hours, which sounded good to me. It’s like a breath of fresh air when I don’t have to advocate for my daughter to get what she needs. Dr. Moss was there for Ari, and I couldn’t have asked for a better player for Ari’s team than him.
At 2:15 PM, Ari was in a world of pain. She was hurting so badly that she decided to hold her breath for extended periods and her oxygenation levels would plummet. This gave her nurses just enough incentive to bump her paid meds from an “as needed” basis to a semi-scheduled basis. Let me just say that there is nothing harder in this world than witnessing your child suffering (the second worst being the anticipation of your child’s suffering). By the end of the day, however, Ari’s pain was under control with a strong cocktail of Morphine, Valium, Tramadol, and Tylenol. Her nausea and vomiting were out of control, however. She was throwing up about every 20 minutes. She was throwing up way beyond the point when there shouldn’t have been anything left to throw up. After all, she hadn’t been allowed to take anything by mouth since the night before. The constant vomiting only stressed her out more and added to her pain and discomfort. The Zofran they had been giving her for anti-nausea was obviously not working. I knew that this had to change by the next day in order to promote healing.
Tuesday, 6/4, Ari’s anti-nausea med was switched from Zofran to Phenegran. Finally, she was able to eat and drink and keep it down. I couldn’t believe how brave Ari was. Despite feeling pain, she even managed a small smile when I asked her if she wanted applesauce (her first food post-surgery). She was on the road to recovery. Ari basically played the iPad whenever she wasn’t asleep or eating. She was so excited about eating! She ate nearly a full adult entrée at every mealtime. I also did my best to entertain this girl, from singing Disney soundtrack songs, to being ridiculously silly. I did anything for even the slightest hint of a smile. While I spent my days with Ari, Jake came and stayed with her at night, so I could be home for Liam. It worked out for us, thanks to the great help of Grammy and Nana, who were there to help with Gabe and Bella while we were away.
By the end of the day on Tuesday (6/4), all of Ari’s IVs had infiltrated, or she had ripped them out on her own (all three!). That’s right, three beautiful IVs, placed while under anesthesia, went bad within 32 hours. Typical Ari. Fortunately for everyone, the PICU doc and Dr. Moss agreed that she didn’t need them anymore since she had been tolerating food, liquids, and meds all day long by mouth. Because the meds were no longer by IV, they switched her to Loritab (Hydrocodone and Tylenol) and Ibuprofen for pain and Valium for muscle spasms. This girl is so brave and so tough and just simply amazing. She musters up a smile when I’m sure most of us couldn’t manage it.
Ari began Physical Therapy while in the hospital. She wasn’t up for much, but she got started moving her new legs in different ways and practicing sitting all over again. We have papers with exercises to practice at home, and scheduled visits 3-5 days per week to downtown Phoenix for PT. Since being out of the hospital, we already have four PT sessions under our belt plus her hours with me. Ari’s lower limbs are completely different since the surgery – it’s like she’s a different kid in her lower body. I can really see the benefit of doing the surgery at a younger age as opposed to waiting until she was older. The effects are tremendous. She is so excited by her new flexibility and bendiness. The tone is reduced by about 2/3, which stands to reason because Dr. Moss said he cut approximately 2/3 of the sensory nerve fibers. While it is definitely an improvement, it came with a cost that we expecting to see. Ari can no longer bear weight on her legs to assist with transfers, dressing, or toileting. She has more difficulty sitting up unassisted, and she can no longer balance on the toilet without holding our hand. These abilities are something I know she will regain with time and rigorous rehab. She has to, and I don’t doubt that she will. It will be like training for a marathon, but we will get there.
6/6: We celebrated Liam’s 1st birthday in the hospital! I felt so guilty that it wasn’t a big themed party at the park with all the trimmings like the other parties my kids have enjoyed, but he didn’t seem to mind :). In fact, we had quite a good little turnout (totally by accident), and he seemed quite pleased with his store-bought cupcake and balloon. More photos on this to come in a later post.
While in the hospital, Ari was visited by many friends and family members. She was not her usual energetic, social self for most of the visits, due to the medicines she was on combined with the pain and exhaustion that goes along with such a major ordeal, but she still made it clear to us that she was happy to see some of her favorite familiar faces. She was showered with gifts and balloons and treats in the hospital; while at home, we were so blessed to be the grateful beneficiaries of delicious meals cooked by amazing friends. This would have been an entirely different kind of experience, were it not for the help and support of our friends and family. To this day, Ari continues to receive visitors to the house, bearing cut fruit (so I don’t need to cut it!) and candied apples and boxes of Play Dough, while my bestie swings by to drop off Gabe and Bella after a day of swimming and lunch. We are so blessed!
On the fifth day of our hospital stay, Ari was released to go home. This day also marked another huge milestone, which is the purchase of our new house (surprise! – Jake surprised me too, somewhat). We are staying local and staying at Carlson Elementary, but moving to a new one-story home in a few months. More on that later.
6/14: Right now, Ari is napping. She is all off schedule from the hospital (hospitals will do that to you), and she has trouble falling asleep at night but wants to take extra long naps during the day. She has not had any real pain medication (only Ibuprofen) in almost two days, and is doing well. She has started trying to get out of bed on her own and crawl all over the floor, just like she did before. Ari is back to using the toilet, and gratefully, it is safe to say that her bowel and bladder control have remained intact despite the surgery. She is once again eating in her regular chair at the table, instead of reclined on the couch. She still can’t get her incision wet, so baths and hair washing are tricky. We got her a bath chair to raise her over the water and we wash her hair in the kitchen sink while she lies on the granite countertop. I learned this valuable trick from my friend, Lori Lakes, who’s daughter has CP like Ari. We are feeling content right now… grateful and content. This is an upswing (relative upswing) from a more angst-filled winter and spring. The things that are new and improvements, we are feeling happy for. The things that are new but not so great, we are learning and growing accustomed to.
Here are Ari’s pre- and post-surgery car pics. I thought for sure that her post-surgery car pic would not be so smiley, but luckily, I was wrong! Notice her leg spacing in the before photo. She could crack nuts between her knees! Her leg are so much more relaxed in the after photo. What an immediate and definite difference!
Before: After:
6/17 UPDATE: Marci and I took Ari back to Cardon’s Children’s Hospital late last night after we noticed that the area around the incision on her back was getting reddish and very swollen. Obviously, our worst fear and the thing that immediately came to mind was infection. I am not an alarmist when it comes to Ari, because I’d be in the hospital all the time if I was, and I already feel like we’re there quite enough. I called Dr. Moss’s service before I was ready to commit to taking her, but I didn’t get to speak to anyone. Then I called her pediatrician, Dr. Matsumoto’s service, and spoke with the on-call nurse, who just happens to have a foster daughter with CP who had a spine infection after her surgery. Hearing that was enough to get me in the doors of the ED before another hour had gone by. Fortunately, the ED doctor along with Dr. Moss’s partner, Dr. Ruzicka, came to the eventual conclusion that Ari was having a localized reaction to the internal stitches in her back. They cleaned her incision and rebandaged it with a sterile dressing, gave her an antibiotic injection, and sent her home on oral antibiotics. She was back in her own bed by 3 AM today. Although I am beyond exhausted and really a hot mess… like REALLY, I am also so relieved and a little giddy that we seemed to have dodged a bullet and things are on the right track once again.
We ask for your continued prayers for our endurance in this long journey, for Ari to quickly gain strength and build muscles, and for her to make it to her full physical potential. In PT, Ari is already impressing her therapists. The therapists all say that she is simply “amazing.” Her pain tolerance, her unending happiness and smiles, and her ability to perform in PT are beyond what they or even I could have asked for. Ari began Conductive Education today, which is an approach to physical therapy that is premised upon repetition of muscle movements to promote learning and increased functionality. Ari has CE Monday-Friday for four weeks from 9 AM-12 PM. After her first session, she slept the entire way home from downtown Phoenix (45 minutes) in the car. I’m looking forward to seeing her make great gains!
