Thursday, March 17, 2011

Day 34: VERY cautiously optimistic

I cringed when I had to type Day 34. How did we get to day 34? The walls have started to close in on me a bit. I was here for 6 straight days so we could minimize the germs from home where Aria and Miles were sick, being brought here. On the 6th day I got to hang out with Liviana (which I LOVED) for her EKG and MRI so I was out of Giovanni's room but still in the hospital. Livi spent her hour in recovery, was eating, drinking and telling me she wanted to watch Calliou on my $19 Pre-pay cell phone and I was just trying to get anyone to release her at the time they told me we could leave. I actually ended up leaving after a nurse took our her IV but then disappeared. I was beyond frustrated and the walls....they were closing in. That night, as I was getting Giovanni to sleep I started to have a little mini-panic attack. I felt like I couldn't breath as I suddenly thought of how many doors were between me and fresh air. I had to take many deeeep breaths to keep myself from freaking out and looking like a crazed person. I have claustrophobia issues and even though I am not in a small space I started feeling very trapped. Not good.

I have the prize in focus though. Sweet freedom for Giovanni and myself. Two days ago we were told it would be around 10 more days...could be 7, could be 13. He has to get his Neutrophils up to 500 and he needs to maintain 40,000 Platelets on his own without transfusion. This is where the caution comes in....he is still sitting at 100 neutrophils that he hit last week "early". He also is not currently maintaining 40K platelets. We know that he engrafted and that his bone marrow is growing, the blood cells are growing...it is just a waiting game and it feels like torture to me. I truly cannot wait to see his face when we take him outside and when he sees his brother and sisters for the first time again and they see him. I am so beyond ready to get out of here that I have to force myself to not get too excited so I am not let down when it doesn't happen. I still think he is SuperGMan, he is still healthy and strong. We just need Neutrophils and Platelet prayers, pronto!

I know you are all happily celebrating St. Patrick's Day with your green beer and festivities. Drive safe and enjoy. Today is a National holiday in Italy. It is the 150th Anniversary of Italy's Unification. Everything was pretty much shut down from what Brad and Tarah experienced trying to go to the store and drop things off at the hospital for us today. It rains here all.the.time. It is like the Seattle of Italy. It certainly adds to the melancholy of being stuck in this room when it is rainy and gloomy outside all the time. I am craving spring, warm weather and well....Omaha! I miss home so much. I really can't wait to get home and live some appearance of "normal" until we have to pick up and come here all over again.

I am off to bed. Send all the good vibes our way to get his counts up. We MUST get out of here!

Thanks for the continued support. Thank you to everyone to organized and came to the fundraiser on Tuesday. I wish we could be there to thank each and every one of you. Don't forget the auction on the 21st. They have tons of awesome auction items waiting for you to bid. You can join the page HERE

Hug Your Babies!

Amy

3 comments:

Dotty said...

Prayers for his counts to come up and stay steady. Hopefully you will be able to be reunited as a whole family soon. Much love

Jennifer Stam said...

Prayers for his numbers to be where they need to be for you both to get out and be whole as a family again. I cannot even imagine how hard this must be for all of you. You are a brave, strong woman. That is where SuperGMan gets his strength and determination.

Sue mom to Emily LCDH 1-22-08 said...

I've been following your journey, but need to go back and read the posts I've missed. I have a little CDH Miracle born on Jan 22, 2010. My heart breaks for you. No one should EVER have to endure what she (and your entire family)is dealing with. I can't even begin to understand what your life is like. You are an amazing mother, doing EVERYTHING possible for these 2 beautiful babies. My prayers and support are with you!