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Monthly Archives: July 2015
Day +4: Today was a sleepy day for Kiira. She would play briefly, but preferred to lay down with her pacifier and snooze on and off. We’re still increasing her feeds through her tube, but she seemed hungry today, so they’re increasing them again tonight. We thought she would enjoy a bath, but instead Kiira screamed through it, probably from being cold. She was very calm for bandages though.
The doctors told us they’re finding traces of CMV in Kiira’s blood, the common virus that’s dangerous to those with low immunity, so they need to test my milk and see if I’m giving it to her. She was positive for it pre-transplant, so I thought this issue was laid to rest, but apparently I could still pass it to her, counteracting the anti-viral meds she takes to keep it away. It will require insurance approval, but in the meantime we are still using my milk.
Overall things are going well and our Aunt Kiki arrived today! The girls are thrilled to see a familiar face and she will be a welcome distraction for all of us.
Day +3: Happy 4th of July! While I would rather be sitting by the pool barbecuing, Kiira was awake a lot today, which meant she was actually playing, has energy for PT, and threw us some smiles, and that made for a wonderful day.
She is now a paci-addict, which she only gets in the hospital, so we’ll see if we can break her from it at home this time. For a healthy child I wouldn’t care, but since it tears up her mouth, I’m torn between comforting her temporarily for the exchange of injury. She is still on TPN and continuous feed through her gtube though, so her mouth condition is not as big of a deal for now.
I hope you all had a fun-filled celebration!
Day +2: Kiira was still sleepy today but she didn’t get quite as much sleep with constant interruptions and bandage changes. She cracked a few smiles, and spent a little time playing and sitting on my lap. Kiira’s sisters visited today and they spent time with a Child-family Life rep, who taught them about Kiira’s central line and they made “blood soup” to show the difference between healthy blood and Kiira’s. It was really good for them to experience that. We also attempted a slow drip feed with milk into her gtube tonight and she is tolerating it so far, so that’s an added improvement from the last 36 hours. We know Kiira will have ups and downs, especially over the next 2 weeks.
We learned that Kiira’s skin might see dramatic improvement over the next 2 weeks due to the immunosuppressant drugs she is taking, which is odd, but is because they reduce inflammation in her skin. However, once we back off those medications, her skin will likely go through a blistering phase and it will take 6-12 months to know how well this BMT will work for Kiira. I wish for a quick cure and healing, but I have to keep reminding myself that this is a long process, a true test of my patience and emotional stability.
So far Kiira’s response to the BMT is normal and there’s no cause for concern, and with the amazing nurses and doctors, I feel at ease. Even though I see tears roll down Kiira’s sweet face, I know a day is coming where she will smile again.
Day +1: Kiira had a very rough night (and so did daddy since he stayed with her), with getting sick and even vomiting blood. So today Kiira slept all day. She received her Mesenchymal Stem Cells (MSC), which are adult stem cells that came from a different donor that doesn’t require a match. They can become any cells so the hope is they would become skin cells with the correct DNA. It’s an experimental thing, and since they might drop it from the next protocol, I’m guessing it doesn’t do much, but it can’t hurt. It was a much smaller dose, so Kiira tolerated it more. Since her hemoglobin was so high, they removed 75mL of blood from her. Instantly her skin got less red. We hope it will help her nausea and make her more alert too. My fear was that they were removing the good cells, but apparently those cells make it to the bone marrow within 12 hours. I’m quite impressed with how God designed our bodies to work so perfectly!
They started her on TPN (IV nutrition) and her medicine that helps stimulate the white blood cells. I’m definitely learning a lot! Other than doing her central line bandage change, it’s been a quiet day here.
Oh and she smells like cooked broccoli and I learned that’s from the preservatives in all the medicine she has in her. It’s quite appalling.
Pray that tomorrow Kiira can rouse enough to flash a big smile and that her new cells are growing and healing!
I can’t believe the big day is here! They call Transplant Day, Day 0, so from here on out, we start counting up. I almost feel like this is Kiira’s 2nd birth. It’s a new immune system, a new opportunity for her. She has been through so much the past 8-1/2 months and I want this to heal her more than I want anything.
Kiira started off the day happy and playful, but it was short-lived. She started getting naseous and ended up throwing up here entire meal shortly before transplant. We gave her a bath and did her bandages and then around noon, Kiira received her first portion of blood cells. The team came in with a balloon, present, and a sign for Kiira’s door signed by all of them. It really felt like a birthday party then! Since there are so many cells, they decided to split it and she received the blood in 2 doses rather than 1 and then she will get her MSC cells tomorrow instead of today. It’s much like a blood transfusion so she fell asleep as the new blood makes its way to her bone marrow, which takes 10-12 hours. How those cells find their home so quickly is beyond me, but thank God He made these things so amazingly perfect.
After the first transfusion, Kiira got more sick and lethargic. She started vomiting blood. We don’t know if it’s from a mouth sore or lower down in her GI tract, and unfortunately it’s common in EB, but still not something you want to see your child do. Since her little body received such a large portion of blood, her blood pressure went through the roof and her skin was very rosy. They gave her blood pressure medicine and another round of Tylenol and benadyrl before beginning round 2.
The 2nd round was supposed to happen at 6:45pm, but we didn’t start until about 9:30pm. She continued to get sick and just wanted to sleep through it all. Unfortunately, they also had to give her Lasix, a drug to help increase her urine output. It means constant diaper changes, so every time her diaper is changed, she would wake up and gag. It was a horrible night of sleep for Kiira (and her dad who stayed the night with her).
All of this is very common with everything Kiira has been through the last week, but I sure miss those smiles she always has for us. Again, I know it’s a phase, a normal response, but pray for her body to recover quickly and get those new cells to grow, grow, grow! She obviously isn’t able to eat anything so most likely they’ll move to TPN (IV nutrition). Again, this is very common and used just until they can start eating on their own again. I just want what is best for Kiira, so whatever they need to do, I am happy to have them do it.
Child and Family Services came by with gifts for Kiiira, most notably her Beads of Courage. Each bead signifies something she has gone through such as hospital stays, gtube placement, and her BMT. It’s already quite lengthy! They will also role play with her sisters to show why Kiira has all these lines and explain what a BMT is in a way they can understand. I’m excited to bring the girls in for that.
December 30th we decided to pursue this route and 6 months later, we are here. We are so happy Kiira has this opportunity. Praise God! While, I feel fortunate that we are here, but the road ahead will still be difficult. Please continue to pray for us.