Since Getty’s diagnosis, she has slept by my side in our bed. I didn’t want her anywhere else. It gave me comfort and it also was the best decision to make at the time. Getty is hooked up to a pulse oximeter 24 hours a day, but that in itself is not enough security. Things can still happen even when the alarm has not sounded in certain circumstances. So having her right next to me, getting to snuggle her every night, and hearing her sleep was a huge comfort.
When I was pregnant with Getty, I spent a lot of time designing her nursery. Figuring out the perfect color, the perfect theme, the perfect everything. I think we put her whole room together while I was about 6 months pregnant. I just couldn’t wait to transform our spare bedroom into her new environment. After diagnosis, her room remained the same but now took on another function: supply closet. It housed all of her supplies, diapers, stroller, clothes, crib, changing table, etc. I think I would spend just enough time in it to get what I needed and then I would leave.
I grew to hate that room. I hated how cheery it was , I hated how much time I spent on making it just right, I hated how the crib sat empty only to now become a catch-all for stuff. But you would think that I would be motivated to then change it, but I was paralyzed to do anything to it. It was a double-edged sword. Part of me was still grieving that Getty was not healthy and part of me wanted to give her the room she deserved. Both were canceling themselves out and I did nothing. So many months went by. The sleeping arrangement in our queen bed, from left to right, was Mark, Cooper, me, and Getty, in that order. Cooper, our beloved whippet, had a way of stretching out his lanky limbs and dictating how much room everyone else got, to the point where Mark volunteered to sleep on the couch.
So every night for the past four months, Mark would sleep on the couch, Getty and I would sleep in the bed and then Cooper would split up his night between the two sleeping areas. I think he wanted to make sure each of us got enough time with him. 🙂 Very sweet.
It was not an ideal situation, but it worked. Everyone got the sleep they needed, some a little more bumpy than others. It never even occurred to me that we should maybe change things up. What was the alternative? I am not going in that room.
It is funny what a hospital stay will do to change your mind. Getty has been doing incredible since she has been home from the hospital. She is taking big 2 hour sprints off her bi-pap a few times a day. We are still doing 3 full acute care treatments a day, and it is doing the trick. The vibrating vest is amazing and we are so glad to have that now. It is definitely allowing the junk to get out of her lungs while also shaking her whole body to allow for other things to come out on their own, if you know what I am talking about. We no longer have to give her Miralax. 🙂
I also got the courage to change my attitude about Getty’s nursery. Instead of my own issues with that room, I needed to think what was best for Getty. Mark and I live by that motto with Getty’s care, so why couldn’t I do that about a silly room? Well I finally was able to “go there” and now I am so happy I did because Getty has a new rockin’ big girl room and she loves it.
We pretty much left the existing furniture and artwork, but added a few bookshelves and an awesome new twin bed! We have been saving up for a special kind of bed. Getty has not developed pressure sores, but we knew that they could come at anytime and we wanted to make sure we could combat them as best as possible. She tells me when we are sleeping when she needs to be repositioned. Usually it is in the sound of a slight whimper. That tells me that she needs to try something different. Maybe needs to be on her back or she wants to be on her other side. But she has always been good about telling me. Last night was the first night she slept in her new memory foam bed and she only asked to be repositioned once, instead of the usual 5 times. Now I do not know if it is because of the memory foam, but I can’t help but believe that makes for a much more comfortable slumber.
So I took some pictures of her new room. Now there is a place for her books, a wall for all of her clippies, a place for all of her stuffed animal friends, and a ceiling for her mobiles. Her new big girl room is inviting, it is a place where we all hang out and a place where Getty and mommy still sleep at night together, but now daddy can sleep in a real bed himself. 🙂 And last night Cooper still divided his time between both rooms, I think he likes the memory foam too, he spent a lot more time with the girls last night then with daddy.
I think this room is a good expression of who Getty is. It is cheerful, it is full of life, and it has just the right amount of sophistication that we have come to love about her. And this mom has definitely learned a good lesson about holding onto things. Nothing is more dear than your loved ones. I disassembled that crib in about ten minutes, and to know I allowed it to hold me captive for over 10 months simply was not right. Live and learn.
Getty got discharged yesterday afternoon. Before leaving the hospital we received training on her vest that will now be a part of her daily breathing routine. The training was quick, we thanked the PICU staff who was attending and we were out of there!
On the car ride home, Getty watched a few Dr. Seuss shows and Mark and I talked about how we literally have not been outside for the past two weeks. It was weird driving in a car, it was weird to see traffic, it was weird to be going home. Very excited and nervous at the same time.
Nervous because I think I got used to and started to depend on the fact that if Getty needed any kind of medical help, nurses or doctors were within an arms reach. Now we were bringing her home and we wouldn’t be able to get a daily x-ray, where her lungs going to remain clear? I started to freak out. What if she gets sick again? Will we be in the hospital again for that long or longer? Way too many things jumbling around in my head, my adrenaline was still pumping after spending almost two weeks on high alert. I took a deep breath and instead of continuing this madness, I talked to Getty on the way home. She had been so chatty all morning, we just knew she was ready to get home too. I focused on her the rest of the trip and that seemed to keep my emotions at bay.
Grammy was home waiting for us. The house smelled awesome. She makes the best spaghetti sauce and once we opened the door, I was immediately comforted. The house was clean and we just so happy to be home.
We brought Getty in and took her immediately to our room. We laid her sweet head on her side of the bed and she fell right to sleep. It was like the moment she knew she was back in the safety of our home she too felt that sense of comfort. As we unloaded the van, I could hear her little sounds of snoring coming form the room. It was such a sweet noise.
It has now been a full day since we have been home and Mark and I are feeling very similarly. We are down right pooped. We were just discussing how we think our bodies are just now starting to relax. Both have literally been on such high alert for the past 12 days that we think our organs have also taken a beating. So lots of sleep, water, and food for the next few days to get back our strength.
It was such a treat to sleep next to Getty last night. I have been waiting for what seemed like an eternity to snuggle her. It was nice to know that neither of us had forgotten how to do it, we instantly gave each other some squeezes as we laid next to each other.
Getty’s breathing exercises are down to Q6, every six hours. In the days to follow to we will figure out our new routine. Lots of mail to sort through. Lots of phone calls to return, and lots of thank you cards to send out. Busy week, but we will take this one slow and not rush into anything just quite yet.
Getty’s health is doing great. She didn’t sleep at all this morning. I think she is just so happy to be home. Yet this afternoon’s nap was absolutely taken advantage of. Now we are hanging out watching her beloved Mickey Mouse.
So happy to be home. So incredibly happy to be home. Thank you so much to the wonderful Kaiser doctors, nurses, and RTs who did a wonderful job helping Miss Getty, and thank you to the Kaiser managers and administrators who stood in our corner when we needed you.
Thank you to Grammy that came everyday. Thank you to Takoa, Mama Raney, Stacey, Morgan, Angie, Marlene, and Patti who brought us comfort and good food. 🙂 Thank you all for being so kind and looking out for us. Thank you Jill for fighting for Getty and giving us the ability to care for her again in the hospital. We literally had nothing left to fight with and you came and took care of business and we can’t thank you enough. And thank you to everyone who left such encouraging comments on the blog and fb. Daily comments were so comforting to read.
We are home, we are safe and we are together. Good night.
So here we are, it is Friday afternoon and we are now seeing the light at the end of the tunnel. Getty is doing fantastically. Yesterday she completed two successful attempts off bi-pap. For 45 minutes each, Getty was off bi-pap and holding strong. It was so wonderful to see her beautiful face free of a breathing apparatus. She smiled, cooed, and just kind of took everything in.
It was decided Wednesday that for Getty’s night treatment, she would go to Q6, or every 6 hours instead of every 4. That would be a good test to see what her lungs sounded like after the 6 hours. So this morning when the Intensivist listened to her breathing, he was very impressed. He was under the impression that she had already received her morning treatments, and when we told him that we were just about to get started he was even more excited. The nurse, RT, and I just smiled and celebrated. 6 hours without wheezing or crackling coming from her lungs is a huge step in the right direction. I know that giving Getty the full 6 hours in between to sleep has also made a difference as well. This girl sure loves her sleep.
Then the discussion went to “well then let’s get this little lady out of here.” I couldn’t agree more.
The plan is to continue to monitor Getty on her baseline bi-pap settings of 16/4. We will be doing another blood gas test today to see if she is at the right ventilation levels. Then next steps is to see if she is ready to be, dare I say it…….discharged. Oh that felt good to say. 🙂
So if all goes well we may be getting home this weekend. There is one technicality that might have us stay until Monday. Getty will be getting her own vest for her CPT treatments. She has been getting them with each treatment in the hospital and now we will be able to have the same system for home use. We are very excited to have this added element to Getty’s routine. The vest does an amazing job of knocking around all kinds of mucus that might ordinarily stick to her lungs. If we cannot get the needed training from the manufacturer tomorrow morning, we will need to stay in the hospital until Monday when they can do the training then. we should know more very soon.
Getty’s progress has been remarkable. Every day she has shown progress and every day she has fought like the little superhero she is. We are so proud of her and we simply can’t wait until we can bring her home so we can establish Getty’s new routine. We also cannot wait to get home quick, just so we can slow down and get back to being a family without all of the interruptions, the x-rays, the blood tests, and the baby crib. 🙂 Mommy and Getty naps need to resume asap.
It seems as though slow and steady has allowed Getty to “win” this race so far. We are going at her pace, we are being guided by her cues, and even though this is a relatively long stay, we know that with every passing day, Getty is getting better.
Since yesterday Getty has been breathing on room air while on bi-pap. This is a big deal on the road to recovery. While on room air she has been able to hold her sats around 94. We did not try Getty off bi-pap today. We had a really special day today and I think after all of the festivities, she was one tired little owl.
This morning brought the clearest x-ray to date. We couldn’t be more elated with today’s results. Since she is doing so well the doctor has recommended that her bi-pap settings go from 19/4 to 18/4. She is doing great on her new settings.
After her noon breathing treatment Getty got her first bath since being here. The nurse laid out several towels and we all took part in giving her a sponge bath and she loved it! We were joking that she was really going to get used to all of this special care and expect it when we get home. Sounds good to me. 🙂 It was rewarding to wash her arms and hands and upper body. She cooed the entire time.
After a good wash and dry we put on a new diaper and arranged a way to have Getty lay on my lap. After careful lifting of not only her but all of her tubes, cords, and IV, Getty and I were reunited once again.
It has been so hard for me to adore her from the sideline. I touch her all the time and talk to her. I massage her and nibble on her, but there is something so precious about being able to cuddle and it has been killing me internally knowing I had to wait until we got home.
Our nurse was so great about initiating that I get a chance to hold her today. After careful planning and execution, Getty and I got to hang out and physically catch up. It was fantastic to feel her wait on my lap. It was awesome to hold her whole body. It was equally terrific that Mark and I got to share this special time with her today.
I want to thank Angie for coming by today to bring us food and to visit with Getty. She also captured some very special pictures of our time together. Thanks Ang!
Since we adopted Dr. Schroth’s acute care treatments last week, Getty has been getting treatments every 4 hours. Even in the middle of night our little pumpkin has to be awoken so we can clear out her lungs and help make them stronger. As of tonight in collaboration with the doctor, we will only be doing one treatment in the middle of the night. So instead of being woken up twice, Getty will be able to get in a good 6 hours before her next treatment. It is very exciting to get to this point and I know she will appreciate the extended nap.
Here are a few pictures of our special day.
Things are going much better all around. As of this writing, at 9 p.m. Pacific Time, Getty has been breathing on room air (no oxygen support) for 9 hours with bipap support. Her bipap support settings have been reduced gradually over the past few days from 20/6 to 19/4, which is approaching her baseline of 16/4.
She was off bipap today, on room air, for 35 minutes. I guess the lingo around here is a “sprint” when referring to a test off bipap. Yesterday, she sprinted for 30 minutes on 1 liter of oxygen, so today’s sprint was much better, making us all happy.
We also had a big meeting with the hospital brass regarding Getty’s major desat event, the lack of communication between RT shifts, and the RT manager’s attempt to bar us from providing hands-on care to Getty. We regained control of Getty’s hands-on care a couple of days ago and her treatments are much better as a result. The major points of the whole ordeal are as follows:
- Getty’s care will be improved during this admission as a result of our ability to provide hands-on care;
- Getty’s home care will be improved based upon things we learned surrounding this acute care issue, because we are providing hands-on care in the hospital;
- Getty will get notes in her file to remind Kaiser of her special needs during acute care when she is admitted to PICU in the future;
- One of the nice Kaiser RTs has volunteered to personally do a presentation to the entire Kaiser RT staff to educate them on the differences between standard RT respiratory protocols and SMA respiratory protocols;
- Kaiser will be better prepared for any other SMA family coming into PICU;
- Kaiser committed to us that it will work to improve its collaborative family-centered care in general to avoid this kind of situation in the future with all PICU patients;
- We have been receiving apologies throughout the day from many different Kaiser managers about this entire incident, including an apology from the RT manager who screwed up Getty’s collaborative care in the first place.
We also managed to get some rest. All things considered, it was a good day.
Thank you to all who offered us help with the administrative battle, all who have come to visit, all who have brought us food, all who have done our laundry, Grammy and Papa Mathany for taking care of Cooper and the kitties, all who have offered prayers and well wishes, and all who have sent nice little gifts for Ms. Getty!
We hope to go home in 3 to 5 days.