Oh man where do I begin. Let me start out by saying that our little Getty is such a trooper and she is doing fine considering all the nut cases that are taking care of her, no scratch that, Mark and I are taking care of her and they are advising and pontificating. Let me explain.
We arrived around 10am this morning, all packed ready to go. Admittance was simple enough, a bit of paperwork and few yes and no questions and then we were whisked off to our room in the PICU. Getty was really hungry, so we took care of that right away. We meet her first nurse, nice lady. She gave us a brief tour of our 12 by 12 room and then she was off to assist another patient. After Mark brought up the rest of the stuff, I found all the drawers I could to “get comfortable”.
I originally thought I would be freaking out at this point, but I was remarkably calm. Mark is truly Getty and I’s rock, so I knew that if he was fine, then things were going to be fine.
It wasn’t more than an hour when a few labs coats came in to let us know about the newest “update”. Let me back up a bit before I tell you this great joke. Getty was admitted this morning for the sole purpose to acclimate to the bi-pap machine. The idea is to make sure Getty is good and comfortable with the machine so when she needs to go on it post surgery, she won’t fight it, while at the same time healing from her surgery. Okay so here we are an hour in and the team tells us that they do not have an infant mask for her to use for the bi-pap and they won’t be getting it until the 17th, which is the day after the surgery. I am hoping that you see the joke somewhere in there.
So we considered our options for some time and we decided that Mark would drive to Davis, meet up with a fellow SMA dad, that graciously loaned one of their residual infant masks, and head back so we can get this acclimation process started.Robert and Meri we can’t thank you enough.
While Mark was out, Getty and I were able to get some good mommy and baby time. I turned on her fish light and she finally went down for a nap. Her and Snoopy slept for a good two hours. I enjoyed just watching her sleep so soundly.
Getty awoke and I took her out of her bed and we cuddled while we watched Harry Potter. It was so nice just to sit quietly with her. I couldn’t help but wonder what she may be thinking about all this fuss about her. She surely didn’t seem to be phased by all the conversations, all the probing, and the new environment.
Mark got back, mask in hand and a tired smile on his face. About an hour later the labs coats came back in to let us know that since the mask was not sterile, that they would need to basically boil it to be able to use it. The woman in charge basically told us that the option was that she would take it home and sterilize it, which would mean we would not be able to acclimate tonight. She would also be contacting the only DME place around that may have the mask. I couldn’t stop myself, I stopped her with as much tact as I could and asked her what went wrong, how on earth could this have gone so wrong? At one point I said, didn’t you know she was coming today? At that point I pretty much stopped talking because my next question was going to be pretty snarky, so I stopped.
Basically the right hand was not talking to the left hand. Oh Kaiser I was really giving you the benefit of the doubt, we brought our daughter here this morning with a clean slate of expectations, I brought no baggage of past history with me and you do this to us. You are making me grumpy!
So it is possible that the DME place could have the mask, it is possible that Getty gets the opportunity to start the acclimation process tonight. BUT, if that doesn’t happen tonight, then the sterilized mask will be here in the morning and we will start fresh tomorrow.
Getty is on her third feeding since we got here, she is in good spirits, my mom has joined us and it is so nice to have my mommy here to be near us.
Being in this 12 by 12 room doesn’t seem so bad so far, there is a cafeteria downstairs, there is cable in the room (Mark and I gave up cable about two years ago and I forgot that there were so many channels), and we are here as a family. I understand this is only day one, and I am aware that this is the easy part, the moment we have to let her go to surgery feels like a nightmare, but my hope is that by Tuesday I am more at peace with it.
Again we will try to keep posting as our journey continues. I wish Getty could post something because I think she would tell you that her bed is huge and fluffy and that she is so happy that Snoopy, mommy, daddy and grammy are here.
To summarize at the time I write this it has been a total waste of a day in the hospital. I have heard that hospital stays cost roughly $10,000 per day. Could you imagine what $10,00 could mean for SMA research? Oy Vey!