Friday, July 31, 2009

Round 3: Delay of game

I was REALLY looking forward to having all the evaluation testing done by the end of July, for tons of reasons. Our metabolic stress test was scheduled for yesterday.... BUT paul got a head cold that settled into a cough last weekend, I aquired it by Monday and Gabriella was lucky enough to get it from us by Tuesday/Wednesday. Due to her fever and cough, I had to reschedule it. Due to our narrow timeframe for needing to get things done, I had very few options for appointments! One was for today, which I declined due to prior plans we had, and one was for next Wednesday at 730am! I took the Wednesday appointment and then called Sharon, the transplant coordinator here, and she squeezed me into 1230p for the appointment. SO Gabriella's stress test is now scheduled for next Wednesday at 1230p!

Sharon was also going to follow up with a few calls to Loma Linda to get this appointment scheduled, now that most of the testing is in. I will post as soon as we have that appointment!!!

I also got a call and email from Chris, the head of Gabriella's wish team!!!!! She sent me over an informative email with some questions and we are planning a night to meet up. It's looking like Monday night might be the night we meet up, and they bring her favorite meal and drink and some little gifts! How AMAZING have they been already?!? Everyone is so loving and kind in this organization! We have to gather some information for her and make copies of some things to get the process rolling quicker. I so desperately want Gabriella to have a wish granted before this transplant, for so many reasons. Besides the negatives I won't even go into thinking about, after the transplant she won't be able to go to large public settings or travel far distances. And goodness knows if we could EVER manage to take her someone as wonderful as Make a Wish can grant for her!!! Can't wait to see what she wishes! We have been very cautious to not say too much to her, and we plan on using the color book MAW sent us as a discussion piece this weekend to give her some ideas.

Tuesday, July 28, 2009

Today's Echo

This is my first blog through email on my phone. Let's see how it goes!

We went today for our monthly echo to check out the status of Gabriellas condition. Doctor said she is stable, but progressing. Her left atrium is even larger than last month and the pressures are a bit worse. I asked him how big it could get before it became critial and he said there is no saying. He said there was no reason to delay things with the transplant and he was going to make some phone calls to get things rolling. Obviously we can't let it get to the point where we find out how big is too big. I couldn't imagine how much worse things could be if we hadn't caught it as early as we did, because the Atenelol is helping her believe it or not. Without the Atenelol, it would be even bigger than it is. We talked a bit about this heart defect verses other more typical defects. He has never seen exactly what Gabriella has. He has seen either the myocardial bridging OR the RCM but never both. And he explained how her condition has no treatments or medications, unlike other conditions that have a whole array of medications to relieve issues. Lovely, right?

We asked about travelling, also. A change in elevations could put too much strain on her heart but we are cleared to go to stay with friends in Sacramento in August and also for a Make a Wish trip once we get that going. I hadn't thought about how stressful a change in elevation could be until her recovery nurse mentioned it last Tuesday. He did warn me that while flying if she gets short breathed or shows some symptoms, she may need a few puffs of oxygen. Stuff I hate having to know but glad I do.

The blood work from last week came back "crystal clear" which is fantastic! Makes it so much easier to find a good donor match when there are no other complications! We are waiting on results from all the other tests still.

So we wait, again. We are getting good at waiting! This time waiting for Loma Linda to schedule our visit and get her on the list. This Thursday is the stress test which is out last bit of pre-listing tests to be done in Arizona.

Thanks to everyone for continued prayers. We survive through the strength your prayers have given us!

Monday, July 27, 2009

In the media.....

News article on the golf tourney!

http://www.eastvalleytribune.com/story/141745

Golf Tournament news article

News article on the golf tourney!

http://www.eastvalleytribune.com/story/141745

Thursday, July 23, 2009

Round 2: Winner- Gabriella!

We went today for more testing..... much easier testing at that.

Only a minor snafu threw me off track today but we quickly bounced back. I had not heard back from our nurse to find out what information I needed to retain for myself from this appointment, and was 10 minutes from checking in at the clinic when I called. Our nurse is on vacation, 2 of her assistants were out of the office and another busy. I felt bad, but kinda threw it all onto the receptionist as she was my 5th phone call to talk to someone. I told her I needed to make sure the blood got sent out from Tuesday and find out what I needed from today's appointment. I got so aggravated at the lack of communication I told her something I feel bad about now. I said "You guys do this more frequently that not, and I've never done this before. I need some guidance". It was then she gathered all my information and testing schedule and told me she'd call me right back. And that she did. She called back to verify the blood was sent to Loma Linda (now I just need to call them and make sure they got it) and told me what information to grab from today. She was sweet, and thorough, which put my mind at ease.

2 simple tests today. We had a renal ultrasound, checking kidneys, liver and bladder. We headed over for a chest and tummy X-ray. I got all the results, as well as the MRI results, on a disc and we walked out an hour later, and pain free. I was grateful for today, and feel we accomplished so much. Only an echo and stress test next week and we should be going to SoCal for our intake interview next!!!!!!

I have so much on my plate this week and will be cramming it all into tomorrow, so this will probably be my last blog of this working week. 3 tutus to make, 6 dining room chairs to reupholster for my sister in law, a glider to reupholster for my niece, and some bermuda shorts to make from pants for my mom. That's the kind of busy work I like!

I have one major prayer request for the weekend. My Gabriella is getting so thin. She's lost a pound and a half since June 26, and when you only weighed 38 and a half pounds to start, that's big. Even our old babysitter we went to see today said she looked so skinny, and she does. She's always been such a fantastic eater and now I am short of paying her to eat one meal a day. I have considered Pediasure and other supplement types of drinks, but I can't even get her to drink stuff she LIKES. Even her mood is changing, which I am sure is due to lack of nutrition and energy. Her eyes look a bit sunken and her overall morale is just not of her normal self. She finally ate some dinner last night which was the first good meal she ate since Saturday. And today she ate a decent lunch. Please pray her eating gets better and she gains her normal self back. She knows she needs food to keep her healthy and strong, and that's exactly what we want for her!

Tuesday, July 21, 2009

Round 1: Winner- Gabriella!

We are home and I am writing from the quiet of a dark room with Disney Channel playing and a smiley girl laying next to me.

We went to the doctors office on campus of the hospital today at 1130 to see if Gabriella was tall enough to work the treadmill for a stress EKG test. Good news was she was tall enough! That made for one less test to complete while under anesthesia today! We headed over to Phoenix Children's and got all checked in for MRI. Transition from the waiting room to the MRI prep room was quick and timely. The Child life specialist came in and showed Gabriella a Barbie sized MRI machine made of wood and Barbie laying on the table of it. (I thought of my brother-in-law Abel. He so would have made that) Gabriella transitioned into her nervous mood, where she got quiet and blocked out things. She completely ignored the mask the CLS was trying to show her, but colored the most adorable baby doll with their markers. The anesthesiologist came in to talk to me and get Gabriella going and she started to panic a little. She didn't want to do the 'breathe thing' and was firm about it. Again, like I did on April 24, I had to go with her and hold her while she was put under with the mask. Screaming, crying and looking at me desperately. Not any easier this time than last. Still the same fears, the same image in my head of her looking at me with a plea to help her.

My sister in law, and Gabriella's godmother, stopped at the hospital to hang with me since she works close to there. We grabbed some lunch at the cafeteria and I ran into someone that put a huge smile on my face. We saw Sheila, the amazing recovery nurse who cared for Gabriella in April. I was able to tell her the final results from April's testing and give her a Gabriella Band and a card I made with my contact info and a link to this website. (Hi Sheila, and thank you for leaving your footprint on my heart!)

We sat in the waiting area and ate our lunch (more like I inhaled it. I was starved, and my poor Gabriella was too). It is a busy hospital and I wasn't minding much to the people walking around. But as I was talking to my SIL, I looked over and saw an angelic face sitting in a wheelchair being pushed by her mom. It was Kate. I looked at her mom and said "This is Kate" and she said "yes". I spoke to her for a short moment, but a short moment that felt like the deepest of connections. Not that we have similar ailments to compare, but that she was going through such a deep and profound struggle with her babygirl. I know that feeling. They are 3 weeks post-news and when she said the tears just come, I understood. I understand the struggled words she writes in their journal. I understand the helplessness she feels as a mother. I told her about Gabriella (because she asked what was wrong) and told her how many people in my family were praying for them and Kate. Told her about Gabriella's prayers for Kate and how Gabriella always says she wants to meet Kate. She told me to come and see Kate with Gabriella, which I want to do before we board our seats on the roller coaster waiting for us. I had to hug her, and assured her I wanted to reach out to her as things calmed for them. Of all the worries and stress I had today with Gabriella's testing, there was so much happiness in my heart to be able to tell Kate to her sweet little face how beautiful I thought she was and that we were praying for her.

Gabriella was done in about 50 minutes and was sitting up when I got to her room! She had a hard time coming out of things because she said she felt yucky, but was 100x's better than she was in April. The nurse said they got all her blood work done and got all the images they needed for the MRI, Praise God. I stayed by her side and the nurse took out her IV (after I subtly asked for a dose of Zofran via IV to help her) because she wanted to 'be done'. We got out of there what seemed to be so quickly, but it was because we didn't have to make her lay flat for so long this time!

She is home now and like I said previously, doing well. She slept a solid 2.5 hours, barely waking for daddy's lunchtime visit from work and my friend Heather's visit with pizza. BUT she needed it and I enjoyed watching her sleep so peacefully. There's a reason Sleeping Beauty is her favorite princess!

So results should be in in about 2 days. Not that I expect any findings on a brain MRI, but then again I wasn't expecting any of this with her heart. Question I have been asked: Why do a neuro MRI/brain scan? Same reason we are doing a kidney ultrasound. To create a baseline. If 6months down the road, post-transplant, she has any issues, they have scans to compare them to in her more healthy state.

Schedule for the coming 2 weeks: This Thursday we will do a chest X-ray and renal Ultrasound. July 28 is her every-4-week maintenance Echo. July 30 is her in-office stress test. Then I THINK this is the end of testing HERE before we head over to do the intake appointment with Loma Linda. I am still trying to figure out when she gets on the list, but I'm guessing it'll be a few weeks before she's in line for a new heart. Just saying that makes a ball magically appear in my throat.

Thank you for all the prayers! I owe every step I am able to take even when I feel too emotionally weak to walk and every bit of this process Gabriella is able to endure with grace to those prayers and God's protection over our family.

6 years

It is easiest for me to just link you to last years post from this date. Only change is it has been 6 years now.....

FOREVER

Monday, July 20, 2009

Learning how to git 'r' done

We got the MRI scheduled! I got a call from Phoenix Children's today saying they had a cancellation and could fit Gabriella in tomorrow at 1pm, so I took it.

I immediately got on the phone to make calls and ensure orders were where they needed to be and the right things were being done. As advised by another heart momma- and by my own findings- I can only fully rely on my own efforts, I wanted to know it was all done. I had to make quite a few calls to get lab orders sent to the hospital, and get things in line for her stress test. Everyone knows what they are supposed to do, but the real test is tomorrow morning if everyone has things in their hands.

We are going to go to the office first and see if Gabriella can do the treadmill stress test. There are concerns about her height and getting it done, and if she cannot we will do the medicine induced one while she is under anesthesia. After seeing if the stress test works, we will head over and have the tests done. So please be in prayer for the anesthesia, blood draw, and accuracy of the tests. I hate having to put her through that.

And please be in prayer for her eating. Gabriella has really put the brakes on her appetite. Sure, its 'normal' for kids her age to have eating stages like this, but this isn't 'normal' for her. She has always been a fantastic eater, and when she would go through spurts of not eating, they were short lived. This is something that's been over a week at least, and she's lost a pound since our last echo. And she's on her second day of complaining and saying "I can't breathe" after walking a distance or climbing the stairs. I try to not think about those being signs of heart failure, but it's the truth.

* * * * * * * * * * * * * *

Other news for the day/weekend!

My nieces baby shower was a hit! They got so much stuff and look just about set for little Nick Jr! I am SOOOOOOOOOOO excited! September 3! I'm going to book my official guess at September 5, 2009!

Here is my neice and her pretty cool boyrfriend ;):
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And one of my favorite pictures of her openning gifts because shes holding it to her belly:
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Last night we had a rockin monsoon! Tons of thunder, lightning, and rain! It was fun to watch, but not fun to deal with PJ's fears afterwards!

We had lunch today with my mom, sister and brother in law. It was nice! And we walked around the outdoor mall like we had NO sense. (It was 110) I resisted the urge to buy a purse I wanted, got Gabriella a pair of $2.70 earrings since the poor girl only has 1 pair, and got PJ a clearance pair of shorts!! I always feel good when I get things we need for so cheap! LOL

And some bonus shots from Saturday of Gabriella, my Godson Marko and their cousin Anthony Jr:
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Saturday, July 18, 2009

Not so suprised

Yeah, they cancelled Monday. The good thing is insurance is covering the MRI and Xray, and the renal ultrasound is the only test we are working on getting approved. BUT they decided doing the anesthesia at their east valley location was not good for her condition, and we have to reschedule for the Phoenix hospital. And now they have to do a stress test also while she is under anesthesia to see how her heart handles an increase in activity. SO I am just waiting for them to call me back with a date and time!

Our transplant nurse asked me while lab I went to and I told her. She said she had some harsh words for them.... hahahaha. Unfortunately, they deserve it.

Short blog today! Off to enjoy the weekend with my family!!!

Friday, July 17, 2009

Bloodwork? Yet?

I hate even posting this now, because I know it will all change by the day's end. But I'll just post again! LOL

I got a call back from our transplant nurse here about the bloodwork. She was shocked that happened to us, and suggested we grab the blood viles and bring them into the office. I suggested them possible getting as much of the bloodwork drawn as possible while she is under anesthesia on Monday. She thought that sounded good so was going to work on getting them the orders.

The crappy thing from yesterday, our insurance is starting to do what insurance companies do best. They are questioning the need for the testing she's having done this coming week. Granted, this is all standard for pre-transplant evaluation. BUT we all know a bunch of office admins and their black and white guidebooks of acceptable testing for specific diagnoses know better and a kidney ultrasound, chest X-ray and MRI are not necessary for receiving something as minor as a heart transplant. (read in- sarcasm). Their problem right now is that her diagnosis does not qualify these tests, and because she is not already on the transplant list they cannot consider this transplant testing. But, um, DUH. She cannot get on the list WITHOUT the testing. I think they just feel they need to TRY denying tests just to say they tried.

So I spoke with the nurse for a while regarding it all. We decided to work on it immediately, calling the insurance company, the transplant case manager we have with the insurance company, and even HER supervisor. Time consuming, but necessary. Hopefully I know before we walk into the building Monday if the MRI will be performed Monday or not now.

* * * * * * * * * * * * * * * * * * * *

We are bracing for another ridiculous weekend. 116 or something, I don't remember. Over 110 it looses importance of the number. A small part of me truly wishes we 'had' to be closer to Loma Linda right now for the sheer fact that we could enjoy doing things instead of hiding out in our house and air conditioning! Hahahaha

PJ is giving me a run for my money. My insomnia is terrible, which is leading to my extreme lack of energy during the day. I was up until 130a last night and still not tired but forced myself to lay down. I probably fell asleep around 2a, and sure enough PJ starts screaming at 230a. I have no clue what his sudden hatred is for his bed. He hates going down to bed, and wakes multiple times crying. And I did the WRONG thing last night, again, and brought him to my bed. I am wondering if some of it has to do with the fact that he sleeps in so late, so today I got him up at 9a. Maybe that'll help? I really don't think he is ready for a big boy bed, but it might be worth a try. Maybe?

We have my neices baby shower tomorrow, which I am super excited about. Considering we might be gone right about the time the baby is born, or soon after, I am excited to be here for as much as possible. I didn't really prove that last night though, as I missed my Godsons graduation from 'summer camp pee wee'. With the events of the past 2 days and dealing with this ridiculous bloodwork and insurance issue, I let myself forget about it. And someone, please scold me for not utilizing the calendar on my BlackBerry. I need to be better about that. So, add me to the list for the worst aunt/godmother/sister-in-law in history.

That's us in a nutshell this morning. I have a TON more things to catch up on today. Not having my car Tuesday really threw my week off!

Thursday, July 16, 2009

For nostalgia purposes....

I wanted to post some 'old school' pictures of my Gabriella thru her 2nd birthday! Beware. There's a lot. I'm feeling extremely sentimental tonight.

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Princess GabriellaPhotobucketPhotobucketBath GirlGo Angels!!!Swim TimePhotobucketDivaAngel BabyLittle LadyPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucket1 YearPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketEaster2007smPhotobucketPhotobucketPhotobucket

**Sob**

My MaggieMooTutu Model

I picked up a new 'product' for my online shop. I was looking for something that won't have me cooped up in my sewing room alone and away from my babies all the time, but still needed to releive stress through creativity. SO I finally got on a project I wanted to start years ago! Tutu's!
Gabriella modeled one for me, and it sold super quick! HAD to have been the precious girl modelling it. Hmmm, maybe she needs to model them ALL for me?!?!

Anyways, these pictures have made their way onto my Facebook, but I wanted to post them here too!

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Tell me shes not the most beautiful thing ever..... I dare you.
Well, yesterday was a hefty day.

We were without a car all day Tuesday because my mommy brain left the interior lights on the night before after my grocery run. Wednesday morning, it was either wait for a 230p appointment to replace the battery at the dealership, or bring it in at 730a and hope to be squeezed in before the mornings appointments. I chose to get there early. Paul jumped it for me and I got there at 715a. Got home by 9a.... that was the end of my calm day.

When I got home, I got a call from Phoenix Children's Hospital. We scheduled Gabriella's testing procedures for next week. She will go under general anesthesia on Monday for an hour long MRI. Then Thursday, we will go back for a X-ray of her chest and Ultrasound of her kidneys. Luckily, they have a smaller location in Mesa they can do all of this at, so it prevents us from having to drive into Phoenix. It was relieving to finally get the appointments scheduled, but every call or appointment is just another dose of reality that I have a 'sick child'.

I got ready for the day and we were preparing to leave to run a few errands and get Gabriella's first set of bloodwork done when I got another phone call. This time, it was the Make a Wish Foundation. She called me at the end of last week asking for Gabriella's information, and called yesterday to let me know they spoke to her doctor and she was all set to go with their organization. What a precious lady. I started crying (seems to happen so easily these days. VERY much not like the old me) and she was so sweet to be patient until I could get my act together. I told her I knew Gabriella's situation was qualifying for Make a Wish, but being 'accepted' by them was just another reminder. So we talked a bit about Gabriella, which quickly made me smile again. Her personality? Sassy, smarter than the average bear, girly, prissy. She asked what her interest were. Easy, anything owned by Disney. Hahahaha..... I told her how we go often to DL, and how much Gabriella loves princesses and Mickey Mouse. How she loves dressing up and dancing. I even gave her this blog address to pass on to the volunteers so they can look here and get to know Gabriella better! She looked at the blog while we were on the phone and commented on how beautiful Gabriella is! (of course I agree, I'm biased ♥) So a volunteer through Make a Wish should be contacting me in 6-8 weeks and it looks like Gabriella will have a wish granted! It was a fantastic conversation and I felt so good after!

We ran some errands (the type that used to seem so time consuming before and now are no big deal at all) and took PJ to my mother-in-laws house so we could get the blood draw over with. The doctor ordered some lidocain cream for her arms to use before blood draws. We got the cream on, wrapped her arms up in plastic wrap and headed out to the lab. We showed up at Sonora Quest lab at 220p and I gave them all the paperwork from the doctors with all the tests (clearly) listed on there. A little after 3p, we walked out of the lab, no blood drawn, paperwork back in hand, and me at my emotions end. They spent 45minutes trying to figure out the blood work, making phone calls to ask what tests were to other labs but never once the doctor, and he even made the comment on the phone to someone that "it's not happening. What are they thinking?". And when he called me up to tell me he couldn't run all the tests, I told him to give me the paperwork back and I would go somewhere that knew what they were working with. He commented to me that 'this is DNA testing'. Um, ya think? See that right there, where it says Heart Transplant? Yeah. I was so upset and aggravated. So I got in the car and called our transplant coordinator here. I haven't heard back from her yet, but am looking for some sort of direction as to where to go!

The day ended with a postal worked treating me so terribly that I had to sit in my car for a moment to gather my head. But that's another story, and I'm past it now, so I don't want to rehash it.

So that was yesterday, in a much condensed and watered down version. Had I written it last night, a whole different dimension would have been exposed. I try to tame my jealousy while some moms are busy with swimming and dance classes, music lessons, preparation for the new school year, various summer camps, normal doctor checkups, etc- while I am dealing with charity organizations, invasive medical testing, transplant doctors and uncertainty about what the next week holds.

But, this is my life now. Suck it up and get used to it, Kristi.

Tuesday, July 14, 2009

Girl's heart heals itself?!?!?!

Absolutely AMAZING. How could one NOT believe in God's healing powers when you hear about this story? This wasn't just medical experimentation. It was not expected by doctors and still 'unexplained' as to how it happened.

Could this be God communicating a new treatment for heart failure???? Possible stem cells in the heart???

Listen, Doctors. HE is talking to you.

STORY LINK HERE
LONDON – British doctors designed a radical solution to save a girl with
major heart problems in 1995: they implanted a donor heart directly onto her own
failing heart.
After 10 years with two blood pumping organs, Hannah Clark's
faulty one did what many experts had thought impossible: it healed itself enough
so that doctors could remove the donated heart.
But she also had a price to
pay: the drugs Clark took to prevent her body from rejecting the donated heart
led to malignant cancer that required chemotherapy.
Details of Clark's
revolutionary transplant and follow-up care were published online Tuesday in the
medical journal Lancet.
"This shows that the heart can indeed repair itself
if given the opportunity," said Dr. Douglas Zipes, a past president of the
American College of Cardiology. Zipes was not linked to Clark's treatment or to
the Lancet paper. "The heart apparently has major regenerative powers, and it is
now key to find out how they work."
In 1994, when Clark was eight months old,
she developed severe heart failure and doctors put her on a waiting list to get
a new heart. But Clark's heart difficulties caused problems with her lungs,
meaning she also needed a lung transplant.
To avoid doing a risky heart and
lung transplant, doctors decided to try something completely different.
Sir
Magdi Yacoub of Imperial College London, one of the world's top heart surgeons,
said that if Clark's heart was given a time-out, it might be able to recover on
its own. So in 1995 Yacoub and others grafted a donor heart from a 5-month-old
directly onto Clark's own heart.
After four and a half years, both hearts
were working fine, so Yacoub and colleagues decided not to take out the extra
heart.
The powerful drugs Clark was taking to prevent her from rejecting the
donor heart then caused cancer, which led to chemotherapy. Even when doctors
lowered the doses of drugs to suppress Clark's immune system, the cancer spread,
and Clark's body eventually rejected the donor heart.
Luckily, by that time,
Clark's own heart seemed to have fully recovered. In February 2006, Dr. Victor
Tsang of Great Ormond Street Hospital in London, Yacoub and other doctors
removed Clark's donor heart.
Since then, Clark — now 16 years old — has
started playing sports, gotten a part-time job, and plans to go back to school
in September.
"Thanks to this operation, I've now got a normal life just like
all of my friends," said Clark, who lives near Cardiff.
Her parents marveled
at her recovery, and said that at one point during Clark's illness, they were
told she would be dead within 12 hours.
Miguel Uva, chairman of the European
Society of Cardiology's group on cardiovascular surgery, called Clark's case "a
miracle," adding that it was rare for patients' hearts to simply get better on
their own.
"We have no way of knowing which patients will recover and which
ones won't," Uva said.
Still, transplants like Clark's won't be widely
available to others due to a shortage of donor hearts and because the necessary
surgeries are very complicated. In the last few years, artificial hearts also
have been developed that can buy patients the time needed to get a transplant or
even for their own heart to recover.
Zipes said if doctors can figure out how
Clark's heart healed itself and develop a treatment from that mechanism, many
other cardiac patients could benefit.
At the moment, doctors aren't sure how
that regeneration happens. Some think there are a small number of stem cells in
the heart, which may somehow be triggered in crisis situations to heal damaged
tissue.
Experts said Clark's example is encouraging both to doctors and
patients.
"It reminds us that not all heart failure is lethal," said Dr.
Ileana Pina, a heart failure expert at Case Western Reserve University and
spokeswoman for the American Heart Association. "Some heart failure patients
have a greater chance of recovery than we thought."

Monday, July 13, 2009

Testing

I just got the call with all Gabriella's initial testing orders. We need to go this week for one of 2 large blood draws. Since she is so little, it needs to be spread out, due to the amount they need to take. I am supposed to hydrate her heavily for a few days (won't be hard) prior to the draw, and they even called in a numbing cream for her arm so it won't be painful. Hopefully a few blood draws using the numbing cream and she will overcome the mental fear of it, too! One of the blood draws goes directly to Loma Linda and takes weeks to get back, so that will be the first one.

We are waiting on the scheduling nurse to call back with a day to have a Kidney Ultrasound, MRI and Chest X-ray. We are going to do them all in one day at Phoenix Childrens, so it will be a long day, but I am grateful to cram it all in at once. She said we'd have it done within a couple weeks.

After all this testing, we will head to Loma Linda for a week long trip. Meeting docs, tours, information, etc. I am sure they will do their own echo and EKG, also.

SO thats it, in a nutshell!! Thanks for the continued prayers!!!!!!!!!!!

Thursday, July 9, 2009

Reality

I was talking tonight with an amazing, loving and faithful friend. It is always so easy to sit with her and talk about things, no matter what they be. And the spiritual energy boost she gives me is something I don't think she realizes she provides. And we think in such parallel thoughts, it's like we have scripted what we are thinking.

I told her tonight one thing I haven't verbalized to anyone yet. It is a feeling I have, or one that I lack, depending on how you look at it. I don't want it to sound over confident, naive or over spiritual. I don't want people to think I am not looking into the 'reality' of things. But I am going to share it, because I want people to know that I am more than just a train wreck. More than an emotional mess of a mother and spiritually clinging to God's coattails. But here goes.....

For some time now, I haven't have a single cell in my body that feels I am going to loose my Gabriella during the transplant.

There, I said it.

'Reality' tells me that the statistics for 1 year post transplant survival lay around 80% and 5 years post transplant lay around 80% of that original 80%. But my pediatrician (who is also a spiritual man and friend) reminded me God has no statistics.

'Reality' tells me her heart will stop and she will be transplanted with a foreign life source which is going to be a critical moment in time. But my faith tells me God will provide my daughter with the utmost perfect match and those doctors with the sharpest of minds and expertise.

'Reality' tells me that this is going to be a lifetime of struggle. Medications, set backs, close calls, restrictions, etc. But my heart tells me there will be an even bigger 'thing' (for lack of a better word) that will come of this. Whether it be to bring people together, guide people to God, advance in medical research.... whatever it is. My shining little star, my tiny dancer, has been chosen to do something bigger than most people do in their lifetime. She will make an impact, and I cannot wait to see how.

The 'reality' of a situation is always good to understand so you are fully equipped with the facts and data, but it is not always necessary to hang your hat on. The 'reality' of something is not a end all- be all. in my opinion, it is a boiler plate for how you let something affect your faith and emotions. Obsessing on the 'reality' of Gabriella's situation could really break me down to nothing. But the direction I choose to take that reality, the way I let it affect me and my faith and desires for the outcome, THAT'S in my control.

Step 2.

I sit here with such a combination of emotions, all passing by me at extraordinary speeds.

I just got the call from Stanford that they reviewed Gabriella's file and do not reccommend any kind of surgical repair. The risks associated with attempting to repair the Myocardial Bridge are far greater than leaving her condition alone to worsen. (In fancy terms, I feel that means it would kill her now rather than later) And that even if they felt they could repair the bridging, the Restrictive Cardiomyopathy would still result in transplantion, as that doesn't improve.

So transplant it is.

I feel so angry, because my daughter has lost an entire month waiting on lost discs, doctor's vacations and phone calls.

I am aggrivated because I knew this was going to be the outcome, but had to wait on 'the system' to works its course.

I feel grateful for having these past 5 weeks home with my babies with minimal talk of transplant and apointments.

I feel petrified as the process begins now. Neuro testing, blood draws, tissue tests, transplant consults, waiting lists.

I feel brokenhearted and helpless because of what I know Gabriella is about to start going through- yet she has no idea.

I feel blessed for her being (for the most part) so healthy still and having such amazing people in our life to walk this journey with us.


I have already called Loma Linda and spoke to Armando (parents out there who have dealt with transplants at LL alllll know who Armando is. He is such a sweet man.) And he is going to go over with Sharon (our nurse/liason here) all the testing that can begin here in Phoenix. He is going to call me back with a good time to go to Loma Linda and visit with the doctors and have a transplant interview/consult... whatever it is.

I am kinda raw, and after typing this short entry to let you all know, the sadness and emotion has settled in hard. Please be in prayer for strength through this process, as these steps that seem so difficult are only the beginning.

Wednesday, July 8, 2009

Order your Gabriella Band :)

I finally got everything all set up on here to order Gabriella Bands, and the link is in the right sidebar of my blog. As seen previously on my blog, they have been worn by friends, family and even sports figures! It is my goal for everyone who has come into contact with Gabriella either in person or through prayer, to have one of these bands.

The red and blue colors of the band symbolize Congenital Heart Defects. The wording on the bands is a simple statement, but we feel it is more of a reminder: PRAY FOR GABRIELLA.

Each band is $2, and that includes shipping. All the payments for the bands are being depositied directly into our PayPal account and used for all the same transplant related expenses as any past donations.

**If you have previously donated time, money or items to be auctioned and did not get a band at that time, please send me an email and let me know your address and how many you need! It is important to me that you have them!!**







Carwash and Booze Clooze

Both being held July 11, this Saturday!!! Thank you to the people arranging, participating and praying.....

This is being held by a sweet soul I have never even met! I am going to change that soon, though!
BOOZE CLOOZE


And this is being held by long time friends!
GOLF TOURNAMENT

Monday, July 6, 2009

Nothing.

Wanted to take my frustration out on my blog.

The doctor at Stanford, the one who has the next step of our delayed journey in his hands, came back to the office last week.

It is 525p on Monday. Still no word.

I can hardly bear to wait much longer.

Friday, July 3, 2009

Pray for Kate McRae

I try to not sit here and ask why. It's getting exceedingly difficult.

Wednesday night, my friend Rachael brought to my attention a little girl from here in our area. Her name is Kate McRae. She was taken to her pediatrician on Monday for tremors in her hand, and sent that evening for a CT scan. In no time flat, they took the mom into a room and told her Kate has a 6cm tumor on the basil ganglia of her brain and she immediately needed brain surgery.

Why?

To say I can associate with this mothers feelings is an understatement. From the day we find out we are pregnant with our babies, we as mothers protect. We spend all of our energy ensuring our babies are taken care of, needs met, and they are safe and healthy. There is absolutely no feeling like the one of having your position as protector and provider being ripped away from you.

Kate is in surgery at Phoenix Children's Hospital this very moment. She will be in there for 3 to 8 hours, depending on the severity.

Pray. Please, I'm begging you. Pray God spare this little precious girl, and protect her and her family. Pray He guide the doctors and nurses.

Leave loving comments on her Caring Bridge site and follow her story: http://www.caringbridge.org/visit/mcraekate

Join their Facebook group: http://www.facebook.com/home.php?#/group.php?gid=119333325090

Follow her dad on Twitter: www.Twitter.com/aaronmcrae

And watch this video of two immensly strong and faithful parents and their request for prayer:
http://www.youtube.com/watch?v=ese3zYZ-NA4

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