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Friday, August 20, 2010

Our unplanned vacation to the hospital

Well, this is why we are still close to our beloved Loma Linda University.

Tuesday of this past week, Gabriella started sniffling. This was her first 'sickness' since transplant, so it was like I was a first time mom with our first cootie ever. I called transplant team and asked what to do for her snotty nose. He sent me to grab a med from the pharmacy and I felt ok after getting their reassurance. Wednesday she was doing better. Thursday she woke with a gnarly cough, and before heading into what was supposed to be our ECHO only appointment. This was our FIRST time going 2 full weeks without seeing the doctors! Instead, they told me to come in and have them check her out.

We went in for our unplanned clinic day, which meant an unplanned co-pay (grrr). They went ahead and ordered her an antibiotic just to be safe. Given that she hadn't spiked a fever and her nasal issues went away pretty quick, my guess it was just allergies but she was treating it as a mild bronchitis. I pointed out to the doctor these odd spots on Gabriella. She has had these clusters of freckled looking spots come and go in little 3" clusters all over her torso and arms. At first I thought they were evidence of our excursions to the beach on the weekends, but when they would come and go during the week, I started doubting my theory. The doctor told me she wanted to draw some labs and see if we could find something in there that might be causing these travelling freckles.

Fast forward to tonight. We went to grab some dinner since our cubbards are empty and time has been sparse to stock up this week. We needed to go to Target for a few things, but wanted to walk around the outdoor mall for a bit while the sun was still shining. I got a call around 630pm from Loma Linda (their assigned ring tone on my phone is Gabriella singing Twinkle Twinkle just weeks before her stroke).
What is CMV? Cytomegalovirus. Most everyone (50-85%) carries a dormant form of CMV. Both Gabriella and her angel Abbie were positive for CMV prior to transplant, which should have worked in her favor. It is harmless... well, in all of us healthy, normal folk. For the few amazing transplant people who follow me, you might know about CMV prevention already. Gabriella was on Valcyte for the first 3 months, to which it's sole purpose was preventing the CMV virus from becoming active in a person who's immune system is suppressed. At 3 months, they discontinue this medication since the risk for CMV declines and their bodies are slowly rebuilding a small degree of immune system. Gabriella was actually off of it at 2½ months because a combination of this med and another was causing neutropenia, low white blood cell counts. Coincidentally, these spots started forming soon after we stopped the Valcyte, another possible contributing factor to this finding. The one symptom kids NORMALLY have that lead doctors to discover an emergence of CMV is super high fevers, but Gabriella never had this. It is possible that the dormant virus in the new sparkly heart became active when Gabriella's body had her immune system suppressed and was taken off the anti-CMV med. Not typical, not common in kiddos according to my coordinator.

What can CMV do to her? Well, I asked tonight what the worst case scenario was if treatment didn't work to tame the CMV. Rejection. Yeah, thats just about the worst case I could have dreamt of.... because rejection opens a whole new encyclopedia of outcomes. Ones I choose to ignore, because as I have previously stated.... rejection is our biggest enemy and we have this kryptonite called prayer we use to keep it out.

How are they treating her? They are doing an IV drip of Ganciclvir, which is an anti-viral to slow the growth of CMV. They are also using an IV medication called Cytogam. This is derived from human plasma and is an antibody to the cytomegalovirus. She will receive this infusion inpatient on days 1 2 and 7 and outpatient on days 14 and 21, which means we will be fighting this off until mid-September. Kinda wondering if this throws off our go-home estimate of mid-sept?? I'm guessing so.

So we are all settled into our room. Thankfully, transplant kids are near royalty around this place and we got a private room, even though she is not contagious nor is her white blood cells low enough to warrant isolation. Gabriella dealt with her nerves by being so chatty I could hardly fill the nurses in on her recent history.... but it was so great to hear her talking so much. She was comparing things to being in room 4 (where she recovered her transplant).... which has so many more owies than this room. She is fast asleep now on this unexpected evening. I surely thought we would have had a sweet treat at the mall, bought something the kids didn't need just because they are so cute when they ask, and snuggled into our beds tonight to wake and get use out of our family pass to the Aquarium of the Pacific. Even though that is not how it went, I couldn't feel better about sitting here, having my daughter infused with medication to save her from detrimental damage to her precious heart, all because our transplant team is just that amazing to find it this quick.


One thing Gabriella is taking like such a big girl is that I am no longer leaving Monday morning to go get our new little addition to the family, our new doggie. I was able to cancel or postpone most of my arrangements, but not purchasing the trip insurance on my killer deal through Priceline for my hotel turned extreme savings into a monetary loss. We talked all about how I will go when she gets out of the hospital and is done with her treatments to get her doggie so it gives her something to look forward to after all of these IV's and blood draws and boring days in the hospital.
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Also, we are up here with our precious friends, Nick and Lisa.... Mathilda's parents. Sweet Mathilda (just over 2 months old) is readmitted to the hospital and is having a very hard time, so I ask that you PLEASE direct your prayers her way. Her little body is in distress and they are searching for the root cause. As much as I love seeing them, the 5800 wing of Loma Linda Children's is not on my top 10 list of places to hang out with them.


Suzy said...

Many many prayers, Kristi. Please try to keep us posted when you can! Suzy xxxx

Unknown said...

Thinking of you so much. And, had to stop to leave a comment to tell you how amazing you were to tell us about another family in need of support in a time when you need support. That's awesome. You're awesome!

"Aunt Julie" said...

Sending lots of prayers for G and for your friends-- hugs to you all!!

Anonymous said...

I love you guys and I feel for you so much. This is all so scary. I am praying for you and your sweet daughter and will do anything I can to help you guys out.

Anonymous said...

I feel for you guys and have such an ache in my heart for where you are at. Your daughter is so sweet and brave and I am honored to know her and your family.
I am praying, but if I can do anything else just let me know.

Paula said...

We are praying for you all!

Anonymous said...

Sending Prayers, Love and Light to you all.

Amiee said...

Please know that we are praying for you all, as you face this new bump in the road.

I can't tell you what a huge sense of comfort you and your experience are to me! (and my husband) He asks about Gabriella, almost daily.

It seems we are following right in your foot steps.

Hugs and Prayers!

Much Love,
The Murphy Crew

The Thorne Family said...

Praying for Gabriella & little Mathilda. Sorry about the unexepected vacation in the hospital. :( I had one of those too about 3 months post transplant. But I was already released home, so I also got an unexpected helicopter ride :)

jojomama23 said...

I will be praying for you all.

Comfypjs said...

Praying, praying, praying that this will be behind you all soon and that God's grace will abound.

Unknown said...

Kristi & Paul,

We continue to pray for Princess Gabriella & her sparkly heart. You are all in our prayers. Gabriella is such a remarkable girl....she's so strong & by the sounds of it, so full of life & laughter.
Hope to see you all soon :-)

Summer said...

Praying for a quick recovery so you can return HOME on schedule :) ANd will pray for your sweet little friend too!

Loves from, Mason and Mommy

Danielle said...

Thanks for the update. I always love how positive you are. It definitely helps kick me out of the funk I think we all get into every now and then and reminds me to be grateful for each and every moment.

Praying for the princesses both.

Anonymous said...

I have no experience with heart transplants, but my husband received a liver transplant just over two years ago. He developed CMV about 2 1/2 months post-transplant. He was still on the anti-viral drugs at the time. They just put him on stronger oral anti-virals and it cleared right up. He did experience a mild rejection episode about 3 months after that, but they don't think the two were related. Spent 4 days in the hospital and has not had any more issues with either. I hope the same will be true in your case. Hang in there and may God bless you.

Anonymous said...

hi kristi my prayers are alway with ur family and all the children in need of medical help Adrian is doing ok had 2 go 2 Riverside Community Hospital wasnt holding anything down so was on IV for 24 hrs and is starting over with little amount of GI feeding 24 hrs a day haven't been on computer 4 over a month very busy with Adrian lov to u all lydia