* This post is copied from Emily Daniel’s social media “diary” as she kept thousands of people informed of Baby Rose’s health updates.
February 5: We’ve been in the hospital since December and it’s only been in the last week that things have started to take a turn for the better. There were times when Michael and I truly did not know if she was going to be able to make it. It felt to me worse in some ways than before her transplant. We never lost hope but for many weeks it was bad… really bad. We also know that NOTHING is guaranteed and just because we want things to turn out well does not mean that they will.
This last week has been a NIGHT and DAY difference in her improvement and we are all kind of in awe of the dramatic positive changes (including her doctors and nurses). We were all very worried and scared and still don’t REALLY know what was going on with her or have all of the answers.
We know that she had EBV and that caused multiple very large and painful ulcers in her esophagus, stomach and intestines. They took a lot of pictures because they said that “nobody would believe it” and also that they can’t imagine how painful it must be for her.The doctors were pretty much all in agreement that this was probably PTLD (the cancer we dread it being) and that would be the cause of the 2-3x a day high fevers and other symptoms. The bone marrow biopsies and multiple ulcer biopsies they took did not technically show PTLD cells, so they were not cleared to treat her with chemo. Her EBV test came back negative after the 2nd rituximab treatment and they went ahead and gave her a 3rd dose of rituximab for good measure. She’s been on really strong and multiple IV antibiotics for weeks because of the fevers but all blood cultures they grow to check for infection are negative. Her transplant infectious disease doctor told me the other day (now that she is doing better) that she is “intellectually very interesting” and another doctor said when she was not doing well that we were in “unchartered territory”.
Despite a feeding tube, she could not keep any formula down, was vomiting everything up and losing a lot of weight to where you could see her spine and ribs. We don’t know if this was from the ulcers or the blockage in her intestines from a bad ulcer or the fevers or what. Once Baby Rose got her PICC line she could start TPN (a form of nutrition that goes in her vein in order to give her gut a rest). This was something she had to be on pre-transplant.
Everyday that PICC line is in I worry that she will get sepsis. She fought the blood infection off once before she had her transplant and she got it from being in the hospital. Not everyone survives from that and it’s really serious. I don’t know given her immunocompromised and neutropenic state now that she could survive it again.
It’s been about 9 days that she has been fever free and I think we are out of the woods. Everyday she is getting better and better and last Saturday on 1/28 was when we started to notice a turnaround. She took her first bottle and drank a couple ounces and seemed hungry which was a really good sign we had to cut her off because we wanted to take it slow so that she wouldn’t throw it up. She has ot thrown up at all since she started eating again which is sooooo wonderful.
She even started to take and show interest in some solid foods which is pretty new for her. Before this hospital stay we were working with a feeding specialist because she was showing aversion to trying baby foods. So far she’s tried strawberries, crackers, hash browns, cream of wheat, cheerios, string cheese, a baby carrot and every time she puts food in her mouth to try it, it makes me SO HAPPY and it’s SO ADORABLE!! They have put her on a weight gaining drink (like Ensure for babies) and she is drinking some of that and also continues to be on IV nutrition through her PICC line until she can take all calories that she needs by mouth. She’s been gaining weight and really starting to thrive.
We heard her giggle for the first time and she’s been “talking” and trying out her voice. For the past couple of months she has been too weak and sick and in pain to make any sounds and was sleeping for the majority of the day and when she was awake she was in a lot of discomfort.
Our best friends Matt and Amber came in last weekend all the way from Arkansas and because Vanderbilt just changed their visitor policy, they were able to come up and spend a little time with us in the room which was a HUGE morale booster.
Her personality, energy and spirit is really coming back and every day she gets better and better and we are all thrilled and amazed. She has been nominated by the childlife specialist at the hospital to be the CHAMP OF THE GAME for the Nashville Predators home game this Tuesday night in Nashville. If you are going to be there, she’ll be up on the jumbotron! They are filming for that tomorrow and especially because she is doing so well, that is a huge bright spot for all of us. I’ll be sure to get photos to share!
Let’s hope all future updates continue to be a glowing report of her extraordinary recovery and of us getting to go home soon. I really can’t get over how much of a drastic and dramatic improvement she has made in 1 week. Thank you everyone for your continued prayers, gift cards, presents, cards of encouragement! WE LOVE YOU AND ARE SO TOUCHED HOW DEEPLY YOU CARE ABOUT US, OUR FAMILY AND OUR BABY ROSE!
February 10: The past couple have days have been really hard and thrown us all quite the curveball. Baby Rose is not doing well and once again, we don’t really know why. We do know after a CT scan today that there is a blockage in her intestines and that is causing her to not be able to keep things down and also her stomach to be distended and backed up. Tonight they put in a tube to suction out all that is in her stomach which will help her be more comfortable. Shes been having relentless high fevers and a bad rash all over her body and is just feeling so miserable on top of being poked and prodded and having multiple tests done. Because they took the PICC line out on Wednesday she had to get an IV today which has already failed. The OR is closed this weekend except for emergency surgeries (they are doing electrical maintenance) and I am already dreading how many times she’s going to be poked and have IVs fail while we hobble through the weekend til Monday. She can’t drink or eat and is already so hungry. The plan is for Monday for her to go under anesthesia again and get another PICC line. She will need to be on the IV nutrition for a longer period of time. We just found out that a blood culture they took this morning at 3am has come back positive for a blood infection and they are going to start her on an IV antibiotic immediately. This is what I have been fearing. The culture needs more time to grow to determine what bacteria it is or how serious it is. All of this could be worse …. but I wish it were better.
February 20: Baby Rose is heading in a positive direction and we are overjoyed seeing her come back to life, have more energy and feel better! After she finishes the course of IV antibiotics for that blood infection, they get her TPN (IV nutrition) balanced and if she stays fever free, AFTER TWO LONG MONTHS we are slated to go home at the end of this week! She’ll be hooked up 18 hours a day to the IV nutrition and can’t eat or drink anything til the end of March in order to get her gut healed. She’ll likely have an endoscopy and CT scan to see how those ulcers are doing and healing. We’d love to try to plan ahead to work with someone to help us get her on an organic, nutritious and anti inflammatory diet. We will work with her transplant team and nutritionist here at the hospital but we really would like to round out her care team with a more natural approach and work with another expert for her diet. We would appreciate any referrals or recommendations for a professional pediatric nutritionist. ???? Thank you for all your messages, supportive comments & likes, cards, care packages and prayers! Michael and I do not feel so alone because of you and your love that you demonstrate to us. ????
February 23: WE’RE HOME!!! We got out yesterday at 2pm, drove home and dropped off her medicines and IV nutrition to be refrigerated and then booked it over to the zoo to enjoy 45 minutes before it closed of fresh, glorious air and absolutely gorgeous weather! She had her first carousel ride and liked watched the monkeys swing from the trees. But her favorite thing to watch are the people! Baby Rose’s face when she came outside of the hospital and looked around for the first time in two months was priceless. Her nurses, doctors, residents, fellows, support staff and other hospital staff gave us a fun parade sendoff and although we are all fond of each other and sad in some ways to say goodbye, everyone is overjoyed for us to take Baby Rose home where she belongs! Although there are still a lot of challenges and hospital and unpleasant medical days ahead, we are determined to make the most of every day, no matter what. And, to enjoy these last 3 months as a family of 3 before we welcome the next littlest member! ????????