Friday, March 4, 2011

Day 21: This and That

Giovanni's White Blood Cell count yesterday morning was zero. I have not heard the counts yet for today but it is expected that he will sit at zero for a few days before going back up. We are in the danger stage where infection risk is great. If he can stay infection free he will be released in about 18 days (She told me 20 days 2 days ago and you better believe I am counting down). I am hoping and praying we can keep him healthy and free of any bacteria, viruses or fungus in this fragile time. His other counts are acceptable. He has had both Red Blood Cell transfusions and platelet transfusions this week so other counts remain stable. **Update**After I typed this early in the day they are now telling me he came back with an odd result on his CMV test. That is the main infection he is at risk for and their biggest concern. They said it is a very slight result which is puzzling so the test was repeated. He has no fever and no signs of infection. I am guessing it is an error. Let's hope it is an error.

Despite having a depleted little body he is staying strong and happy. He is truly the one handling all of this with grace. His timing is not he best but he also is teething again. The poor thing is a drool machine 24/7. His face is covered in a red rash, typical of him when he is teething. The doctors have a hard time seeing "normal" and spend way too much time obsessing over his drooling and facial rash. I get asked the same questions every single morning about his teething, his drooling, etc. These are the younger doctors who make the rounds during the day and I have been so close to saying, "None of you have children, do you". I realize it is hard for them to view things as "normal" when they are in a care position as they are but a 13 month old who is drooling, has a tooth you can feel below the surface on his gums and has a facial rash as a result is indeed normal. Bless his heart!

He has decided he is on an eating strike. He refuses the hospital food and I must say...I don't blame him. I can barely stomach seeing the same thing every day. This too has caused them to worry even though I have told them that it is obvious to me that he simply is tired of the hospital food. He will eat other things, just not the food they bring. Again, I don't blame him. He has taken up nursing way more to make up for the lack of eating and is maintaining his weight from the nursing alone since he actual food intake is probably 5% of normal. Brad brought me some pizza one night and I gave him a piece (I found out that was a no-no since they could not control how it was made) and he was thrilled! So, every morning when they come in they ask if he is eating. I say the same thing I do every time and they ask the same questions about why I think he is not eating, is he in pain, etc. I really say the same thing every single day. I think I will record it tomorrow and just push play when they come around the next day. *Sigh*...my patience is growing shorter with each day that goes by in the box. I feel bad about that too and I try to take deep breaths, I really do.

I can't tell anymore if the days seem longer or shorter. I try to stay on such a schedule with him. It is the only way to stay sane. I feel like the bedtime nazi because I am always calling the nurses in to give him his nighttime meds at 7:30 instead of their usual almost 10pm. I run a tight ship around here and I think I have seen some eye rolls when I tell them it is his bedtime and I don't want him interrupted. If you remember from my posts from his first hospitalization, they don't go to bed as early around here so 7:30 is probably like 5:30 at home.

I wanted to thank each and every one of you who sent me a message offering help with our babysitter situation. It was a rough week or so but after a ton of talking and thinking Tarah has decided she wants to stay with us. We are very happy that she realized that is what she wanted and we plan on not having anymore stressful shake-ups like that again. I know it is hard to be here. I think of home all the time. I miss the ease and convenience of it all. We tell her to get out on her own and I am going to force her out on her own when Giovanni and I are out of the hospital. Do you hear that Tarah!

There are so many amazing people planning and organizing fundraisers for our family. Any family in this situation would be so blessed to have friend like all of you...even my clients are getting involved in helping. I truly appreciate you all so much. Here are a few things that are currently being planned or currently on-going.

MadiLu Designs currently has a set of 5 card templates for photographers with 100% of the proceeds going to Livi and Giovanni's fund. I have never met Kim of MadiLu Designs but she ahe has been touched by MLD in her family and she has worked with another special MLD family as well. I can't thank her enough and seriously...the templates ROCK! Go check them out.

March 15th Fundraiser at the Prestige Lounge at 810 S. 169th Street in Omaha. 5
;00-9:00pm. The Prestige is donating 10% of the nights proceeds to our fund. You can join the event page on Facebook HERE

Liviana and Giovanni's Journey Auction. This is being organized by a photography friend, Jen Morais in New York. The auction will be held online on March 21st. You can get more information on the auction and how to submit your own items HERE

I know there are other fundraisers and I will get them listed this weekend. I need more details on them so send me your information and I will post it for you.

What would we do without all of you. I cannot describe the difficulty of this situation. The unknown, the fear, the stress of it all. Not for a second, when you find out your two kids will be lost to you would you stop and think about bills and money. All you think about is doing anything and everything you can to save their lives. After the adrenaline settles...that is when you start the worrying over the bills and money and that is when all of our wonderful friends and people we have not even met step in and help put our minds back where they belong. On our children. Bless you all! A HUGE thank you to the Ludackas for their assistance and support with our financial needs at home. I can't tell you how much easier I am breathing with your help.

I was very happy to get out tonight for a couple of hours with Brad, Aria, Miles and Liviana to attend a birthday party for our new friends, Lisa and Marcus's daughter Emma. She was turning the big FIVE and a party was in order. The kids played so hard and I saw smiles and joy that has been absent for a while. They are happy here but that carefree nature was not in them until tonight. They didn't even speak the same language as the other kids but they had so much fun. Aria and Miles are SO close. They were holding hands, watching out for each other, helping each other in the games. It was so, so cute to watch. Liviana sat with Brad and I and laughed and cheered them on. She kept saying, "Miiiiilllles" as he jumped around unsure what he was supposed to be doing in the game. He really was like watching a cartoon character at play. I was almost in tears. It was hard sitting there holding Liviana. She should be out there running, laughing and playing. Just last year she would have been.....just 6 months ago she would have been. In such a short time MLD ravaged her body and is slowly taking her from us.

She is starting up her appointments again and I am afraid I will be, yet again, the difficult mother next week. They want to repeat her MRI from the one she had in November (which I am fine with) and do a series of other tests including a EEG and a nerve conduction test. The nerve conduction test is a no-go for me unless they can give her something to calm her. It was HORRIBLE watching Giovanni go through that test and Liviana's medical information needs are different than his and her life is too short to put her through that type of experience. The EEG they will require her to be asleep for part of and I am not sure how that is going to happen. She doesn't get to sleep easily and she certainly won't get to sleep easily on the hard surface they will make her lay on. It is too hard on her body and no matter how useful the information is, I cannot put her through it. I will have talks with the doctors on Monday about the tests and we will go from there. The hearing and vision tests are important and likely won't bother her much. I worry about her vision so I am anxious for those results.

We FINALLY received our package from my friend, Kelly Langfeldt that was mailed on January 25th. It came yesterday with $20 due. Gotta love the Italian Postal Service. I was in heaven with some shampoo and conditioner she sent me from Whole Foods. I felt like I was back in Omaha wandering the aisles sniffing everything. Another package arrived from a fellow CDH mom, Rachel McCabe. It has toys and things for the kids. It was like Christmas to them. They were so excited and Livi and I sat and played with her sticker book right away. Rachel's package was sent FedEx, arrived in a week and did not require us to pay anything. It seems like FedEx is cheaper, faster and as long as you do not declare a large amount we don't have to pay to get our package. Thank you so much to everyone who thinks of us and sends things for the kids. It really means so much to them and us.

My back is aching, I am tired and I have a crib sized bed calling my name. More updates this weekend. Thank you all for continuing to follow our journey. The support is priceless to us.

Hug Your Babies!

Amy

2 comments:

satodd said...

Hi, I've been reading your story after being introduced to it by your friend Jen, via Momaha.com, I would love to help out if I can. My email is totspotemail@cox.net, if you can email me we can get together about anything you might need. Reading about your journey has made me stop and really truly appreciate every moment I have with my children. Thanks for being brave enough to share it with us.

Jenna said...

Hi
My name is Jenna and I came across your site. Your kids are amazing brave,courageous fighters, and hero's. They are full of life, smiles, joy and love, even though they have been through so much.
I was born with a rare life threatening disease. My site: http://www.miraclechamp.webs.com I love it when others sign my guestbook or email me.
http://www.miraclechamp.webs.com