Hospital Stay Part 1 December 25, 2022-January, 2023

* This post is copied from Emily Daniel’s social media “diary” as she kept thousands of people informed of Baby Rose’s health updates.

December 28: We got a couple of priceless days with family and had a very good Christmas Eve. Unfortunately, on Christmas morning Baby Rose was not able to open her presents and we had to rush home to be near Vanderbilt in case they decided to admit her. Something has just not been right the last few weeks, she’s losing weight and feeding poorly, had the 2 hospitalizations since Thanksgiving Day. She’s been anemic for a while and the cause is unknown. There’s so many other things that have happened and disturbing symptoms I won’t go into right now, but the concern again is now PTLD (which is a cancer that can happen after a transplant). We came back to Vanderbilt and she got a blood transfusion yesterday. That seemed to help but overnight she developed a 103 fever and the cause is unknown. She is very uncomfortable and it’s obvious that something is seriously wrong. We are down right now in the PACU as she is about to go into a couple of procedures so the hematology and liver teams can get more information. She will be having an upper and lower endoscopy and a bone marrow biopsy. Michael and I both are worried and scared and this is all bringing flashbacks to her fragility pre-transplant. Please pray for us and Baby Rose and for positive results of the scope and bone marrow biopsy which will happen around 1:30pm. With her poor state and low blood counts she is at risk for internal bleeding. They told us that this would not be an easy road post transplant but of course we hoped that we’d be the lucky ones to have smooth sailing. Life is fragile and nothing is promised. We refuse to lose hope. ????

January 14: We’ve been at the hospital for weeks now and so far there is no end in sight. The large ulcers in Baby Rose’s stomach and intestines caused by the EBV virus is really causing her to struggle to eat and keep anything down even with the feeding tube. She’s lost 2 pounds and now weighs even less than her pre transplant weight. We are just about at the point where a more serious intervention is needed to help her gain weight and get nutrients. The suspicion for her fevers is that it can happen from being very immunosuppressed. They’ve tested her for essentially every viral and bacterial infection SO MANY TIMES and nothing is showing up. She had her 2nd rituximab infusion yesterday with no bad reaction this time. She’s also been getting other infusions to help her white blood cell count and to get antibodies and pumped with IV antibiotics in case of infection. Donating blood and plasma I’m realizing is so vital to give to people like her that really need it!

We had a great COTA volunteer appreciation pizza party at Blaze pizza in Brentwood last Monday and raised a little more money for ! Michael and I appreciate the care and concern and offers for help while we have been in the hospital since Christmas. Also a big shout out to Liz, Michael’s mom, who has been allowed the exception of being added as a 3rd visitor. With Michael returning back to work full-time and me being 4 months pregnant, she has been a total lifesaver in coming up to rotate out with us and stay with Baby Rose during some days and some nights. Living and sleeping in the hospital SUCKS and there is no other way to put it. It’s miserable. You get very little sleep, it’s extremely uncomfortable, stressful, isolating and you spend the day (and sometimes nights) watching and experiencing your sweet tiny loved one suffering and struggling and being tortured. We are so ready to come home and never go back again, but we know that is not the life we have ahead of us nor is it our current circumstance. ????

January 17:  Baby Rose is about to go under a procedure to get a PICC line. This is a last resort and something we all wanted to avoid because there is a risk of clot and infection (which she’s already survived both – a blood clot from her last PICC line and the sepsis blood infection). She has been poked SO SO SO many times over the last year but this hospital stay in particular has been brutal. She’s had several IVs which have failed and she has no good veins left at all – several of the best IV therapists have looked and tried and they use ultrasound. Every time she spikes a fever (which we don’t know what is causing it) and it happens daily, it’s protocol to poke her to get a blood culture to look for an infection. It’s all just too much and now she needs a piece of hardware in order to have more semi permanent access to give her IV antibiotics, medicines, transfusions, infusions, daily lab draws, etc. etc. for this multiple week hospital stay (and there is no real end in sight). Because of the ulcers in her stomach and intestines caused by the EBV she just is in too much pain to tolerate all her feeds, throwing up frequently and is losing weight daily. We did all we could to avoid this, but she’s going to have to have the PICC line also to run TPN (a clear synthetic form of nutrition that goes into her veins, not stomach). She is still extremely sick, very fussy and we are starting to forget what it’s like to have our vibrant and happy Baby Rose with us. We are so sad and disappointed about EVERYTHING, but this course is our only option in order to keep her alive, quite literally. I’ll post an update post surgery later this afternoon **on my story** to let everyone know how she is doing post op. ????Pictures with Squid was from yesterday as she got a blood transfusion.

January 19: HAPPY 1st BIRTHDAY TO BABY ROSE! It is a bittersweet day but we are grateful to celebrate her life and birthday with the wonderful and caring staff at @vumcchildren and thankful to those that made it a special occasion and showed love to us in less than ideal circumstances. Baby Rose perked up a little bit seeing all her visitors and gave all her fans a little wave and small smile which i haven’t seen in a very long time. She is on contact precautions because somehow she has caught a stomach bug being in the hospital (ugh), so I got to give all the hugs for her to Squid who joined us to celebrate. ????


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