Three hours pre-op & all is well.
Just hanging out. Three hours pre-op and all is well.
When Mark and I decided to start a blog in honor of Getty, we knew that there were going to be times in which it was going to feel too difficult to write. We knew that we would probably do a terrible job of accurately explaining how we are feeling or thinking. But we knew that this blog was our way of keeping our family and friends updated on our journey. We have figured out pretty quickly that Team Getty has become not just a few individuals, but hundreds of people who are following our journey. This is one of those posts, so please bear with me if I do not gracefully articulate my thoughts.
Getty’s surgery is scheduled for 2:30pm tomorrow. We have spent the last three days prepping our beautiful girl for a really big surgery. And even prepping her and making sure she is acclimated, still doesn’t mean that everything will be fine. The disease just takes. This disease doesn’t care if you do cough assist, doesn’t care if you love your child and would do anything for them, doesn’t care if you have gone to great lengths to make sure she has the best doctors looking after her; this disease doesn’t care. I hate SMA.
Our little owl has been nothing but understanding throughout this entire process. She has been her smiley, spunky self without fail. She is a trooper and we are so incredibly proud of her. She looks at us with so much trust. Every new nurse or doctor that comes to meet her she welcomes them with a sweet smile.
Rightly so, we are nervous, at some point tomorrow we will have to let her go and allow others to take as good of care of her as we would. That is so very scary to me, but I am comforted that this surgery is for the best. This procedure will give Getty some safety from an unrelenting disease. Our prayer is that it will give her and us more wonderful time together.
I wish SMA was cured. No parent should ever have to go through this. No parent should have to make these kinds of decisions. No child should have to have their health compromised. It is just plain cruel. That is the only word I can think of to define it.
I look forward to being reunited with my little owl. I look forward to more snuggles and singing at night while we cuddle in bed together. I look forward to being home together, without any talk about procedures, statistics, or scenarios. I look forward to being a family underneath our own roof. Soon enough…………
Oy Vey Kaiser
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!
This morning has brought with it some uneasy feelings. Getty’s surgery is quickly approaching and I feel my heart pounding a bit faster. Making list after list to make sure I am not forgetting a single thing for our stay at the hospital brings its own anxiety. We were informed on Wednesday that Getty will be admitted on Saturday morning.
In my mind I was planning for Sunday and when we got the updated date, I felt uncomfortably jarred with the knowledge that we have lost one day of “regular” life.
Since SMA has come into our family, it has always felt like an unwanted guest. It has felt like a force that just kind of lingers in the house only to slowly rob our beautiful daughter of strength and that, frankly, is it. Getty smiles every day and giggles with delight in just about every environment and situation. Her mind is alert and so incredibly inquisitive. Every breathing exercise she embraces and she is such a trooper, unaffected by the noises from the big boxes that either blow air into her lungs or suck the secretions out of her little mouth. Her spirit and her soul are unaffected by this disease. She frankly couldn’t care less about who you (SMA) are, all she knows is that loved ones surround her with unconditional love and support and she is free to learn, to express, and thrive.
So I am making a list of things that need to get done before we leave, a list for things to take, a list for things we need to make sure we advocate for when Getty is admitted, a list of toys/blankets that Getty needs to feel comfortable, and one mass list that includes all of my lists. 🙂
So what can we except when we get there? Too be honest I haven’t thought about it. I am learning that the only control we have is that over our child. I am not going to consume myself with worry at this point, what would be the point? So I will say this, we will have our own room, every nurse will be sanitized and aware of her diagnosis and if we need to educate we will. We will make Getty’s environment as close to normal as possible, right down to our routine for bedtime.
Even though this is uncharted waters for our family, Mark and I are united in that this is what’s best for Getty. The g-tube and Nissen procedure will give her the ability to eat safely and that gives us peace of mind.
Since the surgery is quickly approaching, yes there is anxiety, uncertainty, and overall unrest, but we are doing this together and that in itself gives us peace. We will be in the hospital together and we will walk together.
We want to thank all of our family and friends that have offered their love and support. Thank you to the SMA community. It has been so valuable to lean on a lot of you for advice and resources. We want to thank Mom for her willingness to hold down the fort while we are gone and to take such great care of our older baby, Cooper.
So here we go, we will try our best to keep Getty’s blog updated in these next few days.
Fore for Miss Getty!
There are some really incredible people out there in the community. Some fellow Del Campo Alumni are putting this tournament on for our little Getty. Marcus Marquez, owner of the L Wine Lounge in Downtown Sacramento and Tony Glover, owner of Golf Lifestyle Magazine have been gracious enough to choose Getty for their annual charity event. Thank you so very much on behalf of our family. We hope everyone has a fabulous time.
Host:L Wine Lounge & Golf Lifestyle Magazine
Date: Monday, December 13th
Schedule of Events:
- 9:00am-10:00am: Check-in & Registration
- 10:00am: Putting contest begins
- 10:20am: Welcome & Tournament Instructions
- 10:30am: Tee Off
- 3:00pm: 19th Hole reception opens
- 3:45pm: Dinner served
- 4:30pm: Live auction begins
- 5:00pm: Award
Place: Granite Bay Country Club 9600 Golf Club Drive, Granite Bay, CA 95746
If you are interested in being a sponsor and/or player please email Chevas Rainer at firstname.lastname@example.org
Chevas, thank you for helping put this event together for Getty, we love you and we can’t wait for you to meet our little missy.