Tuesday, August 25, 2009

Intake visit

Here we are, pushing thru our initial Loma Linda visit. We met for our intake appointment early this morning with a truly fantastic pediatric doctor, Dr. Chinoock, one of our amazing transplant coordinators and our social worker.

When we got to Loma Linda University, we were immediately impressed with the area. The campus is pretty large, since it is also a school. We made our way to the hospital, which is split into 2 halves. The right half is the main adult hospital and the left is the children’s hospital. We got up to ‘5800’, the floor that will soon enough be the location I spend sleepless nights and stressful days alongside my healing princess. When we made it to the floor, one of the coordinators I have been working with met us. On the way to the conference room, we saw the transplant recovery wing and met Gabriella’s future ‘drug dealer’, the insanely intelligent transplant pharmacist.

We sat and listened to Dr Chinoock talk all about the wait and process to obtain a heart, the transplant itself, and the recovery process. He went into great detail about the medications, how they are balanced, how they are weaned, and how we tackle the inevitable problems we will face as a result of being immunosuppressed. We talked in tangents about faith, medical advancement, and his constant search for new information in regards to post-transplant care. TONS of information. The best part of it all was how he spoke to us, in such a way we knew exactly what he was saying. Cautious of what words he used around '”little ears”. As hard as it all was to hear again, and some of it to hear for the first time, it was helpful. The little things are what get me. Like when he talks about her “dying heart muscles” or “critical problems”. I did ask my famous question to him though. “Doctor, have you ever seen anyone have exactly what Gabriella has?” This is a man who has been doing this at an extremely well respected teaching hospital for 20 years….. and his answer was “No, what she has is highly rare and unique”.

Things we talked about that are key points for my family and friends:

  • An actual doctor and  a transplant coordinator go to pick up the donor heart to ensure the heart is in top condition. Gabriella will be in and prepped, surgery started, before the new heart comes.
  • The surgery for someone of her overall good health is 4-6 hours.
  • She could be in the hospital as little as 1 week, up to months, post transplant. Again, her good overall health is on her side.
  • We will need to live close to the hospital for 3-4 months after the transplant. I will be taking her to clinic twice a week, blood draws weekly, if not more. Biopsies monthly to test for rejection. Living close is going to be crucial.
  • She will be constantly evaluated for med levels, so get her on the right system for her.

The coordinator went over some paperwork with us, also. One paper she put in front of me finally broke me. It was a ‘Consent to autopsy post mortem’. I had to decide and sign a paper saying that in the event God takes my baby from me, they can run tests on her body. No matter how many times I tell myself  she is going to  make it through this and be okay, I was forced to put myself on the other path for that decision. I had a small glimpse of the side of the table I never want to see. The one I had to sign off on or decide something in the event of her death. I surely pray there’s no more paperwork or decisions about that ever again.

We met with the social worker too for a bit. She gave us a tour of some areas of the hospital. She analyzed us and our ability to care for Gabriella. Gave us some resources and information. She gave us some advice we need to pray about, as it is more general advice than anything. It was more cookie cutter information, so we will pray and meditate on all of that from today.

So they are listing Gabriella soon. Most likely in the next couple weeks. I need to get them her dental records and a copy of her social security card…. the 2 missing pieces. She will be listed as a level 2, which is the best case scenario for her. Level 1A kids are the ones in the hospital, struggling and on some form of support, i.e. IV medicines or heart pump. Level 1B are kids who are more critical, but not admitted in the hospital. Level 2 are kids like Gabriella, able to maintain at home and through frequent doctor’s visits, until the donor becomes available. The wait is a bit longer, but necessarily so. They feel she is a good candidate for Level 2 because she is still thriving and growing.

We are not 100% positive when we will be coming here more permanently. There are so many things to consider and avenues we can go. Hopefully that path will become clear through prayer and opportunities. Please pray for guidance to help us know when and what is the right way to go about this!!!

Amidst all of this, Gabriella has had a terribly rough week, so I ask for your strong prayers of comfort. I just recently posted how good she has been, not having many symptoms or problems. But this week has been another story. She is really struggling. Her ‘cardiac asthma’ (inability to breathe well due to the heart-lung connection) is so terrible, she is coughing often. She only has a couple minute breaks between coughing fits, and it was so bad today at lunch she threw up from the force. She has been very tired and weak, also. We are working on fitting in a chest X-ray before tomorrow’s cardiology appointment. The good thing is we are here for the rest of the week seeing the transplant surgeon and more of the facility and participating in a clinic with other post-transplant kiddos. No better place to be if something goes wrong, right?

Thank you everyone for your prayers. It has already been a trivial week for us, but we are prepared to go into the other appointments just as strong.

Friday, August 21, 2009

Last day to sign up to golf

Last day to sign up for the golf tournament.... Play a round or sponsor a hole! They are giving away a free car for a hole in one, tons of raffle prizes and other little goodies!

It's been a busy few days around our house!! PJ got a case of the cooties and is on antibiotics and eye drops now to help that out. That little trooper wasn't even complaining, yet still had an ear infection. I wonder if anything could hurt that little invincible boy!

Gabriella has been testing out her limits this past week. She's really practicing how to be a pre-teen early, pushing me to the very edge of whats acceptable! With that is her being WAY too active, and I can see her getting super tired and breathless due to it. I think she is finally coming back down to my level now, as today she has been much better.

Today my Godson is hanging out and playing with the kids. Amazingly enough, having 3 kids in the house is easier than 2. PJ and Gabriella pick fights constantly, but with Marko here it has been minimal! I have actually accomplished a lot!

Sorry for the quick post! Off to get more done while I have the chance. Dishes don't do themselves!

Monday, August 17, 2009

Wish Approved!

Gabriellas wish was approved to go to Disney World! My heart is beyond filled with joy!!! And the timing will be perfect because it will be not too long after she's listed for her heart, so we should be good to go!!!

Loma Linda next week

Everything is taking form finally. We have our first appointment with Loma Linda on Tuesday the 25th at 9am. We will meet that day for the intake interview and with the social worker. We will also meet cardiologists on wednesday and go to Clinic on Thursday. Right now they are working on getting us set up with somewhere to stay those days, and getting it all scheduled!

I had a long conversation with the social worker last week, and she seems to have tons of resources and information for us! She told me some things I wasn't expecting, and others I was already ahead on. I won't get into the details we talked about, because it will all go into detail when we meet face to face. But I will share it all post-meeting!

Gabriella has been doing really well the past week or so. I am so grateful! She worked so hard through testing, I am glad her body isn't being too hard on her right now!

Please just pray for health, peace and mercy on our family. We could really use it.

Before and After

I had to post this comparison picture of me and my princess, intentionally taken.

January 2006
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August 2009
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Why we haven't been posting!

We spent the last week out of the heat and in a cooler climate! We have some great friends up in Sacramento that we stay with occasionally. We used DING through Southwest.com and scored some insanely cheap flights up to NorCal, and who can beat a free place to stay! It gave us a chance to get away and see our friends, and just hang out for a bit!

We were able to see so much of San Francisco, also! We spent some time just walking around the city and taking in the sights!

Here are some pictures!!!



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Golfing for Gabriella, August 29

golftourney

http://farm4.static.flickr.com/3439/3832179681_fe7c839de0_b.jpg

Scentsy extended to Wednesday

Get your order in! EVERYTHING is 10% off right now!!!!! Make me Heathers best hostess ever! LOL

Details: http://listeningthruthenoise.blogspot.com/2009/08/im-hosting-scentsy-party.html

Wednesday, August 12, 2009

Scentsy Party closing soon

Just a reminder, my Scentsy party closes this weekend!!! See my previous post for details!

Wednesday, August 5, 2009

Round 3: She took a beating

We went today for our stress test. It was way more difficult than I was prepared for.

We got there and went into the testing room to get all set up. A super nice guy named Gabriel got Gabriella all set up with her 'stickers' and holster. He has a 6 year old daughter named Gabriella, so knew all the right things to say to make my Gabriella comfortable! The doctor came into the room to administer the test. He wasn't very pleased that I didn't have tennis shoes on Gabriella, but we discovered this last weekend she had outgrown her only pair of tennies. Bad timing, I guess. They did some monitoring at a resting state. Gabriella was all pumped up to walk the treadmill, until she found out she had to wear a mask while doing it. We EVENTUALLY convinced her to wear it, and I tell you, it was the saddest sight. I discovered later, she is the youngest child they have done an exercise stress test on, so seeing all this equipment intended for older kids on my little small framed baby girl was hard. The mask covered from under her chin to over her nose, and the tube connected to it reached all the way to the machinery. It strapped to the top of her head, and down her back. That along with all of her 'stickers' was so much.

They got her started on the treadmill, walking a brisk walk. The overall test made it to 7 levels of incline and increased speed. She was doing so good, and I was standing by her like a nervous wreck. I was SO afraid she would fall head first. Gabriel noticed how paranoid I was so he stood right behind her, which made me feel better. You could see her getting tired. We haven't let her push herself since March, and especially since April/May when we found out her diagnosis in detail. She got to a point about 7-8 minutes in where she said "I feel like I want to be done". We encouraged her, and told her how great she was doing! Well, it got worse. She started looking up to me, and started this deep, gasping, barking for air. Her eyes started rolling back, and I started to panic a bit told the doctor "shes gasping for air! she can't do anymore." He slowed the speed down and lowered the decline. It took her about a minute but she started breathing normal again. They let her sit back down and monitored a bit more. I had to ask the doctor if he got all he needed, since I pulled the plug sooner than he intended, but he assured me he did. She bounced back pretty quickly, with only that nasty cardiac asthma cough lingering.

He gave me a few immediate results. The EKG showed what we knew for the most part. It showed where her heart is rigid and not filling with blood fully. And it showed where she was loosing flow. Her oxygen bottomed out at 25% with an intake (VO2) at about 22, which is pretty decent. Some odd things is her blood pressure didn't increase with her pulse until AFTER she started the cool down. And also, her heart function rose while her hearts response to the activity remained level, while they should increase in parallel. The bottom line of it all is her heart is working and doing what it needs to, but it is working a TON harder than it has to in order to get the job done. A more intensive study will be done by 2 doctors at the office, then sent on to Loma Linda for additional review. I'll be interested to see how she compares to the normal. The hard part of today is they have no data to compare anything to for someone of her age and size, because they just don't do this type of stress test for little ones. Hopefully Loma Linda will.

So the test beat her up good. As overall healthy as she seems to be, I haven't seen her as sick and vulnerable as today. They pushed her to her limit, which was not nearly as far as she could have gone given she had a healthy ticker. I feared she was going to pass out of cause damage to herself... or use up some of the time left in her heart.... with how hard she worked today.

Gabriella is my hero. Watching her go through this has been the hardest thing, but she makes me so proud. She is becoming a little adult all too early, but doing it so naturally. I pray God preserve as much innocence as possible. And I am thankful all this is behind us and we have 3 weeks before our next step.

Before the mask....
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Tuesday, August 4, 2009

How well can you spend 37 seconds?

There's a scene in one of my FAVORITE movies ever, and I adore it everytime I hear it. Mr Magoriums Wonder Emporium..... if you haven't seen it, rent it. It's fantastic.

They just set all the clocks to the same time in a clock shop, waiting for them to all chime at ones......

Mr Magorium: 37 seconds.

Molly: Great. Now we wait.

Mr Magorium: No. We breathe. We pulse. We regenerate. Our hearts beat. Our minds create. Our souls ingest. 37 seconds, well used, is a lifetime.

Have a beautiful day everyone!

Monday, August 3, 2009

Make A Wish

what is a wish?

A “wish” is a critically ill child’s answer to the question, “If you could be anything…meet any body…have anything or go anywhere…what would it be?” The Make-A-Wish Foundation® of Arizona grants the wishes of children ages 2 1/2 - 18 whose physicians affirm that they have life-threatening medical condition.


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Make a Wish..... wow.

I mentioned previously, Gabriella has been approved by the Make a Wish Foundation to be granted a wish. As you can see above, the criteria for wish granting is not exactly something any parent wants their child to qualify for. 'Life-threatening'... *sigh*. But given the fact that we have no say over where life has already taken Gabriella and us, we are embracing the generosity of this organization with gracious and thankful arms.

Tonight, Gabriella's own special Wish Team came out to our house. Ama and Brian came first, with an arm-full of loving gifts. I understand now why they bring them out. Not to spoil the child, but to break the ice. Balloons, gift bags, t-shirts, pins.... it was crazy. For a split second, I felt I was sitting in my living room watching some unfortunate family on television on the receiving end of a charity organizations efforts to make a sickly child happy. Then I had to remind myself all that was true, minus the fact it was some other family. Gabriella opened her gifts and excitedly showed us.... they brought her a ballerina Barbie, a birthday party Barbie set and a crown and jewels. They must have gotten word she was a princess. ;) They even brought PJ a See 'n Say, which made me excited because my kids have never had one!!! Gabriella was so excited to show someone her wish book she had been working so hard on this past week, so she sat and showed Brian and Ama.
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Christy, a co-worker of my niece and brother in law who heard of Gabriella and requested to be on her wish team, came later. She has been working for MAW for some time and you can tell how much she loves it! She brought pizza and Sprite, some of Gabriella's favorite eats. We sat at the table and did some paperwork while everyone ate. Christy asked Gabriella a TON of questions from her favorite color and candy to her favorite places, and interacted with her to get to know her better. Gabriella's answers were hilarious, as she has such a vibrant personality! She had everyone laughing multiple times!
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After all of her questions, and concluding what Gabriella's wish would be, I talked a bit with Christy about the process. It seriously is amazing what they do. They pick you up in a limo, take you to the airport, cover your transportation, rental car, lodging, tickets, food, souvenirs..... everything you need. It is the most pure and genuine organization I have ever seen. We went upstairs to her room for a while so she could show off her naked Barbie collection and massive amounts of Princess paraphernalia.

They were here for 2 hours and it was just wonderful. Though in the past we have taken our kids to Disneyland multiple times due to it being easy for us with location and having 2 incomes before, we have done fun things in our own town, and never deprived our kids of fun.... we could never grant an 'extravagant' wish for our daughter with this new journey in life. Since Gabriella was diagnosed, our financial situation has dramatically changed, yet we still try as hard as possible to seize every opportunity in our power so we never regret missing out on something. I cannot even begin to express my gratitude to what this organization does... it makes us feel like a better parent in spite of the struggles we have and will face. Like we are giving our child a chance to experience something amazing at risk they might not ever get the chance again.

So from here, the paperwork we did goes to the wish board for approval and will then go to a coordinator. That coordinator will get back to Christy with some possible dates- which it looks like September or October is our time frame due to being put on the transplant list soon. Once everything is approved, I will know the details. A week before the wish trip, our lovely wish team will have a send-off party for Gabriella and set us up with everything we need. I am jumping out of my skin excited to see Gabriella have her wish granted!
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OOOHHH, and I suppose you want to know what she wished?

Gabriella wants to show ALL those "princesses" who the head Princess really is at Disney World!!! :)

Intake appointment scheduled!

FINALLY!

I called this morning to push a few buttons and get this visit to Loma Linda scheduled, now that our testing is nearly complete. By 5pm tonight, I had a call back from one of the transplant coordinators at LL and we scheduled our intake appointment. We will be seeing doctors, the social worker and everything else we need to do on the 24-25-26 of August. PERFECT timing for us, because we will be home in time for the Golf Tourney and my neices baby!!!

Things are really coming together, which will help us to better plan where our life will be taking us and when. It is scary to see things happening and knowing whats to come, but a relief at the same time.

Sunday, August 2, 2009

Groups and Causes and such

Did you know there was a Facebook GROUP and CAUSE set up for Gabriella??? Thanks to the lovely friends who have put these together! Please join!!

Saturday, August 1, 2009

Scentsy Party fundraiser

Hi everyone!!! I wanted to post and let you know I am hostessing a Scentsy party for my friend Heather who sells Scentsy candles. I seriously LOVE this super low maintenance and adorable wick-less candle system, especially having my kiddos keeping me busy! I used to burn candles, and was finding it increasingly difficult to remember to light them or blow them out, seeing as how I am chasing my 4 and 2 year old all day!

Their process is simple. You choose one of many decorative burners, and you are SET forever, only needing to buy wax cubes! They are little ceramic 'jars' that have a 25watt light bulb inside. They have a matching ceramic tray that rests on the top of the jar which is where you put the special Scentsy wax cubes. They melt the wax at a temperature that won't burn you (or your kids)! They burn time for the wax is approx 80hours. With mine, I leave it on 24/7 and I dump out the melted wax and replace it with 2 wax cubes every weekend, adding one extra cube mid-week to refresh the smell! I love Scentsy because it allows me to change my mind weekly about what scent I want to burn without having to spend a fortune on new candles! I have burners that match my living room, bedroom and upstairs bathroom! They even have adorable little plug in burners for those high bathroom outlets!

I am so glad I am doing it this week! EVERYTHING in the shop is 10% off for a limited time only, so go into the site, click on 'Place an Order' and choose my name as your lovely hostess! You can have it shipped directly to you (or choose for it to ship to me if you don't want it to sit on your porch and I'll bring it to you) and can pay right on the site! I suggest buying BARS (6 cubes) for scents, that way you can get more scents and find out which ones are your favorite! The BRICKS are equivalent to 6 BARS. Some of my favorite scents are Lemon Lavender, Camu Camu, Cashmere, Irresistible, French Kiss and Mediterranean Spa!

Here is the link! http://www.scentsy.com/peterson3907 ......Party closes August 15 and orders will ship soon after!

Thanks a ton!!!!!

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