So forgive the last post. I just really didn't write like I like to. I imagine it didn't read like I like my stuff to usually read. It was just really hard.
And then I think of parents who watch their kids struggle for breath regularly. I think of the families I know with kids with same diagnosis or very similar and they know all the ins and outs of breathing troubles and yesterday I read the blog Gwendolyn Strong Foundation blog, one I have read many times in the past, and read of Gwendolyn looking at her parents and asking for forgiveness to finally just let go and they gave that to her and she then peacefully passed away and I think oh my heart. Oh my breaking heart. This world that we are so a part of. So entwined with. This special needs community just hurts most of the time. We have been spoiled to have lived 12 years with Lily and only have a couple times of any respiratory stuff that never really was serious at all. My sister with her kids with asthma has witnessed more than us prior to this surgery. We have been blessed and that is probably why it hurt us so much. It wasn't expected. And not like expectations have ever been on our side or in our favor (whose ever really are?) but still. I wonder did I take that all too hard? Am I over internalizing? It's not like I don't over internalize my shopping list, so yes that answer probably has to be yes. But it's who I am. Over thinkers anonymous would be a good meeting for me to think about going to. I think was it all really that big of a deal? They said the surgery was next to open heart the biggest surgery a person can have and it was done on a child with severe special issues. It was not out of norm to have complications. But we aren't just a number of statistics. We were parents scared to death of a surgery that we had every right to be scared of. I had read prior to surgery some parents saying the worst part of the surgery was the anticipation before the surgery and I thought oh phew, I bet that will be us. But it wasn't us. The anticipation was nothing compared to the real deal. And although I know she is straighter and will be so much healthier in the long run, I am still not in a place that would be like oh yeah I'd do that all over again. I don't know if we ever would.
But I digress.... after she was re-intubated we started to just work on one small goal at a time.
It was one day she needs to pee and poo and get the fluids off.
The next day was she needs to get a chest tube to drain the fluid around her lungs.
Next day was extubation (scary scary scary, but awesome awesome awesome) and straight to bi-pap
Then it was PT visit (less scary than it looked) and sprinting 4 hours off the bi-pap.
Then it was room air during the day and bi-pap at night.
Try to eat.
It was that trying to eat that we didn't get sent home that Friday of that week.
We'll never forget that day after she was extubated and we brought her Tobii in to her and sat her up and asked her questions and she immediately and consistently would say I want to drink chocolate milk. It takes her two different pages to get to ask for this and so we knew she was incredibly deliberate with this request and the awesome thing was our team. Oh man our team was incredible at the PICU at PCH. Before rounds they would say Team Lily is meeting. I mean seriously, how incredible is that? They were all for her recovery and it was so evident in everything they did and said. So when we said she wants chocolate milk they were like get speech in here ASAP! And I am not kidding within the hour speech was in with chocolate milk and some other things to try and Lily drank that chocolate milk like it was the last chocolate milk on earth. Then she coughed. And coughed and speech said for the weekend she will need to stay on NG tube and we will reassess on Monday. That was disappointing to me because she had come so far that week. Sunday she woke up, Wednesday she was extubated for the final time, by Friday she was sitting in her chair for hours at a time and talking cruises around the unit with no oxygen at all, we were so ready to break out of there it was disappointing to see that she wasn't ready to eat. But it had only been two days after being intubated a week so it made sense. And we were staying in the PICU which had become home to us so I didn't want to leave that room unless we were going home.
The weekend my mom brought the kids and more visitors came. It was a much better end of the week and weekend. I picked up a book and read. Turned on the TV for Lily to watch movies. It was as comfortable as you can be in the PICU. We knew Lily was going to be OK and I imagine if the second week was our first week I too would have said the anticipation was the worst part.
During that week I just blazed over we still dealt with fever spikes and extremely low blood pressures. She wasn't well, she was just better than being on life support. So we watched the monitors constantly and would worry with beeps and alarms and when the nurses looked concerned and got on the phone with the Dr's- well not the phone those little talking voice thingys- about her blood pressure being so low, I am pretty sure it raised ours. But she continued to get better as each day passed.
We had some great and memorable nurses. One nurse gave Andrew a hard time when he went to leave to get a drink, she said "are you leaving?" he said "yes just to get a drink" and she said "well who is gonna watch the monitors for me?" We laughed. Andrew was a nervous wreck just pacing and watching the monitors. Eventually his mom brought in some coloring books she got free for the kids but Andrew found them a way to focus his energy and colored he did. Seriously. Even one point my aunt Gloria and I went on a walk to Walgreens to buy him some colored pencils because the cheap crayons donated to the hospital weren't worth a crap. This is not a very safe part of town. We felt it was worth risking our lives to have him focus on something other than Lily's monitors.
When Monday rolled around our team Lily's plan was to get speech in and see if we could go home. We couldn't. She wasn't ready. Foods needed to be thickened and they didn't feel she was ready to take out the NG tube. I didn't really want to take her home with the NG tube in and figured if it is just one more day we will stay there, but we did have to move out of the PICU. :( sad face. So they were making arrangements to move us to the 8th floor and I was sad. I was nearly in tears as each critical care Doctor that worked with us stopped by our room to tell us goodbye and how much they enjoyed working with our family. They wished us the best of luck and I kept my chin held high as I said good bye and tried desperately to keep my lips from quivering and my eyes from watering. Not much longer did I have a visit from the chaplain... never saw him the first 2 weeks then he came. He was kind and prayed with us and then another visit from a cute dog. Lily was awake for that visit so that was fun! Oh how we love visits from the pups!
In the meantime of all this going on in the morning I got a call from Andrew who went home the night before and was trying to get some work done that Monday, it had been 2 weeks since he last got any work done. He told me he really wasn't feeling well. Said he felt like fainting off and on. Even when driving. I said you should go to Urgent Care, probably blood sugar or something, not to concerned but he should get it checked out. He said find a place by PCH so he can visit us after he goes there. I found a place about two blocks away and gave him the address. Didn't think much about it, I was figuring out what we could try to feed Lily for lunch. Speech said she could have pureed thickened things and I was just happy to start trying some foods for her. I was talking with the nurses about stuff. Figuring out meds and all the things that go on when you are hospitalized when I got another phone call from Andrew. He said I need to pick him up and take him straight to the heart hospital just a few blocks from where he was. Like a stones throw away from PCH. He said if I don't get him right now they will call an ambulance to take him. What?! He was in A-Fib and needed to be in the hospital. I was like what is happening. I can't come get you. I can't leave Lily. I can't loose MY PARKING SPACE! Andrew sounded desperate and scared and then I was feeling desperate and scared. I told the nurse Ariel, um my husband needs a lift from urgent care to the ER at the Heart Hospital what do I do? Seriously Ariel I need something. Advise me. She said leave Lily and get him. I said "but I have never left Lily alone in a hospital room (except to pee and get coffee)" she said "people do it all the time" I said "I don't" she assured me she would be fine. I did what any of us grown women would do and I called my Mom. "Mom.... I have to get Andrew from Urgent Care and take him to the Heart Hospital. Like now. Yes I am serious." She abandoned her shopping cart at Costco and came straight to the hospital and Lily was left alone for about 30 minutes. I backed out of my parking space and muttered to myself I really don't want to loose this parking spot. Yes I did.
I called Cheryl (mother in law) and said can you come to the Heart Hospital to be with Andrew because I wasn't going to be able to stay all day with him, my mom would have to leave to get the other kids. She dropped everything and was there in 25 minutes. How we could we have ever survived those two weeks with out our moms?
I pick up Andrew and say hey, and we leave. We go literally 3 blocks east to the Heart Hospital with our little fast pass for the ER and he is brought back, he is hooked up to a monitor, he has an X-Ray and all this is happening super fast. As we sit there he beeps more often than Lily's ever did. His heart rate was all over the place. Nurse asks if he has ever been in A-Fib before and we were like what is A-Fib? Apparently not. They asked him 80 times if he drinks a lot of alcohol, if he drinks a lot of energy drinks, if he takes illegal drugs... no, no, no. It was like the Spanish inquisition. He said see this wrist band? Our daughter has been in the PICU for 2 weeks. I'm under stress not illegal/bad for you substances. That was really annoying. The drew labs and then the Dr came in and said he will need to be admitted. Andrew and I looked at each other like wait, what? Admit him? What? Dumbfounded at all that was going on and realizing I had to get back to Lily, I kissed my love and said goodbye and went back to the other hospital to see Lily. parked in a crappy place and may have muttered words that weren't nice.
I got back to Lily, we moved rooms, my aunt and friend Laura came by and helped me move all our balloons and all the other stuff we accumulated there for two weeks and I kid you not our window faced the Heart Hospital. Later that early evening I had a chance to get back to see Andrew and poor guy was staying in something I would compare to a prison cell. Food looked awful and he had no window. I got to hear what the cardiologist had to say and he said they would give him meds that should regulate his heart but if they don't help the next day, Tuesday they will shock it back into rhythm. Oh yes you heard me right. They were going to shock my 33 year old husbands heart back to rhythm. I kissed my sweet grumpy husband goodnight and went back to my sweet Lily who was with my Aunt Gloria and gave her some cheese soup ie mac and cheese puree she refused to eat and I think I passed out.
The next morning Andrew calls me and says they are taking me now. 3 hours before I thought they would take him and he was indeed getting his heart shocked. Both Grandma's came to be with Lily while my Father in Law, Steve, and I went across the street to be there with Andrew when he woke up. We literally made it just in time. He was coming out of the procedure and in recovery and we came in and saw him wake up. He made us giggle at his confusion and then we went up to his room.
Our friend Brian came in as well to see Andrew and I felt comfortable leaving him again to go back with Lily.
|That's both my visitor badges|
|here was her scar 3 weeks post op - beautiful|
And April 21st we all came home. We kept saying, you were shocked today. Like literally had your heart shocked today. I now lovingly refer to him as Sparky.
And then we went into a whole new life that was recovery at home sweet home.
She is doing great. It's been a long road. We still don't feel she is fully recovered but is getting there. She struggles with being really stiff in the mornings and she has been stuck in positions in bed she couldn't get out of and that has resulted in some blisters/sores :( We feel we have gotten these struggles figured out for the most part, but some of the stiffness is just part of this recovery.
She has beautiful posture and her pain management has been fairly minimal considering the surgery she had. She did end up in the hospital as I wrote about earlier this month and I do feel the constipation is from her not being as mobile as she was pre surgery but we are figuring out what works and will keep working on it. She is back to going to school full time and loving it. We even went out of town earlier this month and she flew on the plane in no car seat! She was able to sit the entire plane rides! And we rented a car and she was able to seat in the seat with just the seat belt. Something that she wasn't able to do til post surgery!
Her follow ups with pulmonologist have been positive. She got a suction machine for at home but hasn't needed it. She is scheduled for a sleep study in August and swallow study looked good. We shouldn't have to follow up with her anymore unless something changes. She said her lung collapsing isn't a huge problem for down the road. I was concerned she could have had some damage but she said it was like a balloon deflating and inflating. Not to worry about permanent damage. Phew!
Follow ups with Dr. White have been great! X-Rays looks good and he released her for all activities (even swimming) after 8 weeks!
He really is the top of the top! If you or someone you know needs this grueling of a surgery, this is who you need to see! Cream of the Crop!
No it's not the Hoff.... it's Dr. White.
I'll end this post with our kids on their first day back at school - yes we have short summers - it's awesome! Extended breaks when it is cool out! Modified year round is fabulous in AZ!
Ready for life to be "our" normal!