Last Sunday, we headed up towards the San Bernardino Mountains into an area called Oak Glen. It isn't deep into the mountains, but is a super great, accessible day trip. This area is apply country, and has u-pick orchards and country shops that are so fun to go to! This was our second trip up there since being temporary-residents of the area, and we truly love it! I needed a day of mental purging after 8 full days of hospital, home health nurses, SSI interviews, financial stress and normal life... and Gabriella deserved a day to run wild in nature.








This is one place I'll definitely miss!
The beach.



My niece Jordan & I all ready for the beach

Gabriella with Paul's sister/ her Godmother, looking for shells

My great-nephew in the sand!

Gabriella & her cousin Marko (10 weeks apart)

Running from waves.... and not winning!

My niece & her baby boy

I really get angry at myself when I let more than a few days go between posts. I know thats like one of the top rules for mom-bloggers, and keeping a successful blog. You have to keep your content fresh and frequent. I really gotta get better about this.....
Last night we were discharged from the hospital!
Gabriella's 2 amazing post-transplant doctors worked Monday night on the best plan for Gabriella's treatment. Since it was a very new infection of CMV they found, and did not cause symptoms or distress to her heart, we were very fortunate to have a simple hospital stay. The biggest concern after doing her first few infusions of the medicine (Cytogam) she was given to stop the growth of the active CMV was how to keep the virus from reactivating. They decided the safest way was to send her home with an additional 10 days of IV infusion of the Ganciclovir, which prevents new CMV from growing. If they plan on doing the additional 3 infusions of Cytogam they will let me know tomorrow, but that depends on how much active CMV is still in her system.
The big decision was made yesterday about a PICC line. A PICC line is a deep vein IV which is more permanent than a peripheral IV which goes into a shallow vein in your hand or arm. I was completely against getting a PICC line when the original plan was to return for IV infusions on day 14 and 21.... because it seemed awfully excessive to place for 2 infusions a week apart given the risk for infection with it is high. But when it turned into the new plan of action, meaning 2 infusions a day, I didn't hesitate. The best news is they can draw blood from it as well! Gabriella was getting blood drawn 1-2 times a week and she can go a couple weeks now without being poked. She did well getting it placed. Of course, anytime she goes under sedation I am an emotional wreck, but I knew she was in good hands. I only cried halfway down the hallway.... not too bad. ;)
The home health nurse just left, giving me a 'tutorial' on the IV pump and meds. I do have to give myself credit and say that in spite of her not really giving me a hands on teaching AND not even listening to anything I said, I already knew what to do and merely went through the actions for the sake of the appointment. It is terribly difficult having someone talk to me like I have NO idea, when they themselves are completely unfamiliar with anything transplant related as they pretend to know. I'd much rather have someone ask me and truly listen to my answer to they themselves can educate themselves on things they might face again in the future. That is one thing I respect about our nurses and doctors at Loma Linda... they know I like to be informed and I know my stuff.
Gabriella is now high risk for CMV. When her 10 days of this Ganciclovir is completed, she will go back on Valcyte, which is the oral form of the IV med and that she was on for the first 3 months post-transplant. We will most likely do another 3 months of that and take her off again. After that? See what happens. It will be trial and error. The worst part if even if she does well when she goes off Valcyte in 3 more months and does not get CMV again, she could get it at any time. The doctors have seen patients have an activation of it years after transplant.

Gabriella was listed on February 11, 2010 for her new heart. On May 17, day 97, we got the call that they had a heart for her.
Today is day 97 WITH her new heart. Time has definitely gone a lot faster in the 97 days post transplant than they did in those unpredictable waiting days.
Ok, so we are back in the hospital, but big deal. We hit the critical 3 month mark without being admitted and I find victory in that. Gabriella is responding to IV treatment well. She received her second dose of Cytogam last night and is due for her third on the 27th. She is receiving Ganciclovir twice a day and the doc said if we can get her CMV levels under control she MAY let her go home on oral Ganciclovir and have us return for outpatient Cytogam infusion on the 27th, 3rd and 10th (approx). We won't know this until Monday or Tuesday though after her next set of labs are drawn.
We both slept hard last night. The first night in the hospital again was hard on both of us. The nurse even commented how we never moved when he came in... Lol.
We have had some friends step up and help hang out with PJ various days for this stay so Paul can come up and see Gabriella. Its been a blessing to see our lives be so blessed even when we are so far from home!
The doctor did tell us that if we control this now it will not affect our estimate of going home mid-September. Leaving will be so bittersweet!
So that's where she stands right now! We are meeting new friends on the floor and making the best of our stay. :)
Well, this is why we are still close to our beloved Loma Linda University.

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.
One day my world came crashing down, I'll never be the same. They told me that my child was sick. I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved her for so long. I will not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child thrive. I'll even use that feeding tube. My child must survive!
Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate.
When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold her life, and guide us through each day. My mind says savor each moment she's here, but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "will she be alright?", to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line. I look to them and smile. You see MY child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to her beautiful NEW heart). God must have known how much I'd love her (Just as He loved her from the start).
A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, our hearts share in all of your tears.
Every day I will try and remember, I was chosen for her (and no other). I will always embrace that beautiful day.......When I became a "Heart Mom".
- Stephanie Husted

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Abbie's mom will be writing a letter/blog for me to post on Gabriella's website one day, when she is ready. I couldn't be more honored to know this woman and feel so blessed to have formed the bond we have over such circumstances. She is family, her husband and daughter and extended family as well. We have been connected through Gods divine plan and will forever have a bond unlike any other. Abbie gave Gabriella life in a way no one else could.
No, I am NOT pregnant.



I promised back in February on this post: TEN that I'd post a follow up on Gabriella counting to 10 crystal clear and on her own..... please visit that last blog to see her before video!
We got the results from yesterday's 10 hour day at the hospital.....
0 rejection!!
We r gna start watching what else is causing the belly aches, weight loss & new heart sounds. But rejection is ruled out which was the worst case scenario!
Thank you for all your prayers! We are so lucky to have the support! And we are blessed with a team of doctors who are cautious & watch out for Gabriella with such love.
Acute rejection is when the immune system of the recipient attempts to attack the donor organ as a defense mechanism. It is the body's natural way to prevent a foreign object in the body, by building up an army of antibodies to attack the intruder. A transplant recipient is placed on immunosupressant medications to trick the immune system into not fighting off foreign objects. This is why transplanted patients avoid germs, because not only does the immune system not fight off the organ, it cannot fight off anything else including infection, viruses or bacteria. Rejection is in its highest risk in the first 1 to 3 months post transplant, continuing on thru the first year. But rejection can happen anytime in following years, and a patient is never in the clear for the risk of rejection. Rejection can be caused by not taking your medications properly, your medication levels being too low to adequately trick the immune system or by the body building a stronger army of antibodies or even a new cellular mediated immune system (CMI) to attack the organ. Rejection is found through a series of clinical symptoms, and confirmed by taking tissue samples of the organ and testing them. Rejection can be treated, and the sooner the better. In early stages, it can be treated by something as simple as a steroid. In slightly advanced cases, by short term IV therapy or even a 3 step IV treatment. The worse the rejection, the harder to treat. And every episode of rejection slightly contributes to stressing the heart out over long term.
I know every heart story has its uniqueness. I doubt we will ever find another child who was diagnosed with a CHD at 4, has a stroke at 4.5 and looses her speech, has to fight to get listed due to stroke damage and gets her heart in another state a year after finding out she needs a transplant. Just like I will never know the struggle with antibody issues or the 3 step repair for ToF or HLHS.
http://www.murphy216.blogspot.com


