Now that we are home, we are finding out just how exhausting surgery actually was. We are completely wiped out.
Thankfully, Grammy Nola has come over to lend us a hand, and some dear friends have brought us wonderful meals. Grammy Evelyn is helping us get some Thanksgiving dinner going. Thank you all!
We are adjusting to some new routines with the G-Tube, making follow-up appointments with doctors, running a few errands, sleeping with Cooper, and doing a few chores here and there the best we can. The biggest part of all that is the sleep. Getty’s recovery has gone well, but we need some recovery ourselves.
We just received a loaner pulse oximeter from SMA parent, Debby St. Onge. Now, we need to figure out how to use it while we try to get a pulse ox of our own. You have no clue who we are, yet you trust us with a valuable piece of your medical equipment. Thank you, Debby! We hope to have our own pulse ox pretty soon.
Getty is going home today!
Her home bipap is on order and isn’t available yet. So, she is going home to get out of the hospital germ pool.
Getty is telling us she has had just about enough of the hospital experience. She wants to go home, get some rest in her own bed, snuggle with her family, and see her big brother, Cooper.
He misses his little sister.
It’s probably confusing, I know. Before surgery, we were fighting for bipap. Immediately after surgery, we were excited that Getty was going on bipap. Then, we were excited when she came off bipap a day later. Now, a couple of days after that, we are fighting to get her bipap. Are we schizophrenic or what? No.
You see, an SMA baby has limited muscle strength. One way to have a healthy and happy SMA baby is to help them use their limited energy in the most productive way. If a child can conserve some energy in one place, they will have more energy to use in another place.
SMA babies have underdeveloped muscles all over, including breathing muscles. As a result, they have underdeveloped lung capacity. The combination of low muscle tone and lung capacity means an SMA baby devotes more energy to breathing than other people would. This is known as the “work of breathing.” As a result of higher work of breathing, they have less energy to get through the day, to interact, to play, and to do anything else.
A bipap machine helps reduce the work of breathing via a nasal mask. When the child inhales, the machine blows air in. When the child exhales, the machine blows a bit less air in … just enough to keep the lungs inflated and clear, but not so much that the child can’t exhale upstream against the air pressure. In other words, the bipap machine does some of the breathing work for her, reducing the work of breathing and conserving her energy for other things.
For the past couple months, we were fighting to get Getty on bipap immediately after surgery to reduce her work of breathing post-op during her surgery recovery period. The doctor had not considered that idea before, but we convinced him to do it, with the help of other families and Dr. Schroth in Wisconsin.
Since we were going to use bipap for the first time post-op, we fought to get some hospital time pre-op to allow Getty to get used to the bipap machine before surgery. We were excited the doctor agreed to that.
So, we were excited to get pre-op and post-op bipap. We were also excited to see Getty come off bipap the day after surgery. This was exciting because it showed us Getty is still capable of breathing on her own … that she was not suddenly bipap dependent as a result of the surgery.
Now that we have established she is not bipap dependent, we have been fighting to get bipap for night use at home. The theory is that night bipap will reduce Getty’s work of breathing while she sleeps. This will conserve her energy, allowing her more energy and lung capacity during the day. This will make her a happier and healthier little owl.
Our doctor did not buy into that theory because Getty was strong enough not to need night bipap at home. He did not want to prescribe home bipap without a demonstration of need. We tried to convince him otherwise because Dr. Schroth prescribes and many other SMA families use night bipap at home, and they swear by it. I believe Dr. Schroth’s philosophy is that SMA1 babies inherently need bipap at night, so she gives it to them without a fuss.
As Getty was resting, post-op, she started sweating. There was no apparent reason for it. I argued to the doctor that the reason she may be sweating is because she is doing extra work of breathing to keep her oxygen levels up. The doctor agreed it was possible. Accordingly, he changed his mind and is now working on sending Getty home with her own bipap for night use.
We are happy that Getty will now have some breathing help while she sleeps. This will help keep her lungs clear and will give her more strength to devote to snuggling and playing with us during the day!
It stinks that we had to fight so hard to win the bipap battle, but it is won. We thank family, friends, the SMA community, and Dr. Schroth for helping us win that battle. We thank the Kaiser team for their willingness to listen, learn, and ultimately do the right thing. We also thank the Kaiser team, especially our surgeon and PICU, for all they do every day … especially the nurses who politely tolerated my barrage of questions and concerns.
Thanks to all of you, we now have a happy, thriving SMA baby with a G-Tube, Nissen, and soon-to-be home bipap.
PS: Discharge from the hospital may be delayed until Sunday to sort out the home bipap thing.
I have tried to write this post at least three times and I have had to put it down because recapping Tuesday seemed to be impossible. How on earth could I put all of this into words and have it actually coherent? But know as I write I have obtained more sleep then I ever have in the four days we have been here and I have finally sat down long enough to eat a meal, so here goes.
As Getty sleeps in absolute quiet and comfort, I am overcome with emotion while recapping Tuesday. Man, what a blur it was. Time seemed to move so slow until about an hour before surgery, then it uncomfortably sprinted forward.
Surgery was scheduled for 2:30pm or so. Getty’s last feed was 7am and from there on out, she would fast for surgery. She got an IV in her arm. One nurse tried twice to find a vein in Getty’s right hand but failed. The second nurse was successful in hitting the vein and the IV was placed. Can I just tell you about my daughter? She didn’t cry, she didn’t complain, she actually smiled while getting the IV put in her. She gazed lovingly at me and both of the nurses. Such a sweetheart.
My mom and I walked down to the cafeteria to get lunch for Mark, my Dad, and for us. That walk was nice, after being inside most of the time. Getting out in the sun and fresh air was very soothing. What is with this 80 degree weather in California, isn’t it late November?!
After getting the food, we arrived back at the doors of the hospital. There is a gift shop just to the left so we went in just to take a peek. There was an owl movie made a little while ago, called Legend of the Guardians, Mark and I went to see. It was our anniversary and we thought how appropriate it would be to be entertained by some owls. We thought it was a cute movie. There was a baby owl in the movie that we quickly identified as our little Getty. So anyway, while my Mom and I were in the gift shop we saw all of the characters sitting on one of the shelves. “Well, she needs all of them,” I said. I quickly grabbed all four of the them and walked to the register.
I showed Getty all of her little owls. Her eyes beamed with happiness. I think she was overwhelmed by how many I actually bought. Usually is it just one owl at a time — but four — her eyes kind of bugged out. I rested them at her side, and I left her to converse with them while we ate.
Lunch seemed uncomfortable, sitting around the pull-out tables. Anxiety and nerves were high. There was not much to say really. The anticipation of surgery weighed heavily on all four of us.
It was around 2:20pm when the Kaiser team came in to take Getty down to the OR. Despite months of preparation, I simply wasn’t ready. My heart starting beating so hard and, at that moment, I realized that this was really real. She is going to have surgery. Each of us had a moment to kiss her and to speak with her.
The walk to the OR was seriously the longest walk I have ever had. To me it felt like everyone we would walk past had a somber look on their face. I felt like saying, “Hey she is going to be okay; why do you need to look so sad?” I think that was more for me too be honest. I was really trying to convince myself that this was just routine and things were going to be fine.
We reached the OR and it looked chaotic. Beds were everywhere stocked full of people with aliments. The noise level was uncomfortable but we headed straight for an open room, separated by a curtain. The surgeon and anesthesiologist were waiting for us.
Each of us got a chance to kiss her and talk to her. She had such a calm demeanor. I was so proud of her. I wish I could as brave as she was. The look on her face said, “I’ll see you soon, don’t worry.” And at that moment the anesthesiologist cradled her in her arms and they walked away.
I had a fleeting thought racing through my head as she left, “What if she doesn’t come back? What have I done?” But as she walked away, Getty looked at us and I just knew she was in good hands. I knew everything was going to be okay. I knew Mark and I had made a good decision. I knew, even with all of the conflict with Kaiser, Getty was in capable hands that were going to do everything they could to make sure this surgery was a success.
The three hours of sitting and waiting during surgery was excruciating. However, I will say something my father is really good at, among other things, is comic relief. He tells very good stories with such detail he can have you in stitches in no time. The room we waited in was the meditation room, and I can only guess what a person would think as they walked by that room only to hear loud laughter exuding from a place of reflection and worship. Lightening the mood was important. If we had sat there in silence, we all would have went a bit crazy.
We got a phone call that Getty was back up in the PICU and that we could come to see her. I just assumed the surgeon would come in to talk to us, so when we got the call we hightailed it back up to her room. They had already extubated to bipap by the time we got there. Her body was covered in the yellow iodine, she was a little bloated, and she was absolutely beautiful. What an absolute champ.
She took to the bipap very quickly as we watched all of her vitals slowly come to normal. She was still under anesthesia but was starting to move her limbs. We had a chance to quickly talk to the doctors and they seemed to agree that the surgery was a success and that there were no complication.
Mark and I assessed her body as we walked forward to her. We kissed her forehead many times and whispered in her ear to tell her we were here. What an incredible feeling to know that Getty was back with us. We were reunited as a family once more. It was a very overwhelming feeling. The anxiety was no more and it was replaced with a warm feeling of comfort. Our baby was back, and now we can continue to love her and snuggle her and continue our lives together.
She slept very well while on bipap, so good in fact that the doctors were thinking of taking her off. We weren’t comfortable with that. We felt Getty should stay on it for the remainder of the night to see how she does after a good rest.
Around 8am, the RT came in. She took the bipap off and just assessed her. Getty fussed just a little bit at first and then seemed to be fine. We watched her vitals. They took a blood test to really see how were oxygen levels were, and everything came back good.
The moment she woke up this morning, she greeted everyone with a huge smile. I think she knew she had been gone for a bit and she missed out on some good mommy and daddy time. It was clear she missed her grammy. Boy did she need some of her lovin’.
Today was an incredible day. We literally just spent the day talking to her, kissing her, and really catching up. She was in good spirits all day except when she needed a nap and needed some pain medication.
Getty continues to teach Mark and I everyday. Had I been listening to her throughout these last few days, I would have known that things were going to be okay. She had been telling us that since we got here. Every smile, giggle, and her carefree disposition was her way of telling us that there was no reason to freak out. Did I listen? Um……no. But I have definitely learned that she will dictate how our journey will go. Our ears are open to our little owl.
Through this surgical procedure, Mark and I were granted the time we were hoping for… More time to create more incredible memories with the most incredible little girl you could every meet. We are so proud of her and she is so brave to have done this with so much grace and confidence. We are in awe.
If the plan remains the same, we will be going home on Friday. We are really looking forward to just being together and reconnecting under our own roof. We are looking forward to hugging her and cuddling with her.
While we were in the meditation room waiting, Mark and I were constantly reading everyone’s comments on Getty’s blog and on Facebook. I know I can speak for Mark and say that every comment literally kept us intact. As we would read one, another one would come up and we would be comforted in the notion that there were people thinking about our girl and hoping for the best.
We thank you all for taking a moment out of your day to extend a kind word and supportive hand.