Oh goodness. I’ve been putting off writing this post. It has been a tough week almost two weeks.
Back Story
Remember when we had our disaster hospital stay back in November? That visit (mostly just that sleep study night) was horrible for Lydia. And it did a number on me. I came home feeling defeated. I felt like I had let Lydie down. I felt like I was no longer on the same page as Lydia’s doctors. I felt like I was failing.
Here is the thing I have learned about this health journey with Lydie. Everything comes in waves. We have these dark moments – sometimes really dark – but then we roll out of it. I am so grateful for that roll. And when we are out of those dark moments – life seems not only bearable but doable.
I had a couple days of dark, and then we rolled into Thanksgiving week and oh how my heart needed that time. We cancelled all of the therapies, we stayed curled up at home doing Thanksgiving school and making good food, and had the coziest Thanksgiving. It was just what we needed.
And then we rolled into Christmas. It was busy and wonderful and always over far too quickly. But then that week after Christmas, I knew I couldn’t act like nothing was happening anymore. Because we had something approaching.
The same week as her hospital stay, we had met with ENT and decided to get Lydie’s tonsils and adenoids removed. The ENT doctor thought that it might help enough with Lydia’s obstructed sleep apnea so that she might not need any breathing assistance at night. This was huge for us and so we got her scheduled.
Her surgery was scheduled the first week of January.
Another piece that I should note, after Lydia’s hospital stay in November, they decided to add a second seizure medication for her. We had been slowly titrating up ever since and Mark and I hate it. I really don’t like using that word, but we do. We feel like we have been losing a bit of our girl ever since. She has become so tired. She needs two to three naps a day now. Her appetite has also decreased so that we can hardly get her to eat anything some meals. She just seems distant.
Pre-Surgery
Mark was able to get a couple nights off of work so that he could be there for Lydie’s surgery. Our other kiddos were in good hands with the Mellmans. We got up and going early and made our way down to Denver.
We got Lydie all checked in and then we waited. Lydie seemed in good spirits but it was a LONG wait. It wasn’t long until we were told that the surgery prior to Lydie’s was having some complications and ours would be pushed back. Our time to go back just got pushed back further and further away. I felt so bad for our girl. She had a later surgery time already and I could tell she was so hungry. Luckily, they brought her in a toy and a projector with neat designs for the ceiling and Lydia fell asleep. Hours continued to tick by.
Finally, two and a half hours PAST her scheduled surgery time they took her back. Mark and I went downstairs to get some lunch and in the fastest surgery of all time – we quickly got the message that the ENT part was all completed – it was done in 9 MINUTES!
<<< Also in November, Lydia’s EKG came back with an abnormality a second time. We decided that while she was having her surgery, we would also get an ECHO done on her to get a better look at what was going on with her heart. So while she was still sedated, they did that. >>>
Recovery
Lydia’s past procedures with anesthesia have always been a little tricky. The consistent trend is that it ALWAYS takes her a lot longer to come out of it than they think. But we are talking like a half hour or an hour longer. She also has needed help with her oxygen before, but it has always been something that has been managed with time and maybe some “blow by”.
They alerted us that Lydia was taking longer in recovery – but we expected that. They eventually let us go back to her. She was still completely out. Again, no surprise for us. But Lydia’s oxygen was not doing great. They tried to manage it with blow by but that wasn’t enough. Things got scary when it dipped into the 50s which we have never seen it go that low.
They put on an oxygen mask and were able to get it up with the mask, but she was not able to keep her oxygen up independently. After waiting a while, they were finally given permission to move her up to the floor that she was going to be staying on.
Night 1
When we scheduled her surgery, her doctor suggested that we plan on staying at least one night just as a precaution. I am so grate that we had that planned because there was no way she was going to be able to come home that night.
We got up to her room and Mark needed to leave. Everything had taken much longer than we had planned and he needed to leave to pick up the other kiddos. So Lydie and I got settled for the night.
I met with ALL the people as they filed in and out of her room. And Lydie slept. I could not get her up. The doctors were concerned that she was still so very out of it. But we just thought she needed more time. That night was a long one. Her oxygen was dipping down constantly and setting off her alarm. Luckily, it never dipped down as low as in recovery, but it was going into the 80s and 70s – even with oxygen on. They ended up having to continually increase her oxygen all night so she was up to 2 liters (her usual amount is an 1/8 of a liter – so this was huge).
Day 2
Morning came and Lydia was pretty unchanged.
She continued to sleep on. It was hard. I wanted to know she was okay. I knew in my heart we weren’t going home. She wasn’t ready.
I got her to open her eyes a little bit that day. But it wasn’t more than just two or three minutes before she would be out again. She was also developing a cough and they began to worry that she had developed a respiratory condition. Her cough seemed to be worsening (which was not helping her oxygen levels at all) and so we got put on lock down while they ran swabs and ALL the respiratory panels for viral and bacterial conditions.
They decided to bring in neurology as well. They thought maybe her problems coming out of anesthesia were neurological. They thought about hooking her up to an EEG but decided to give it some more time. I am so grateful. I didn’t feel like that was the issue.
That evening we started to see some improvements. She was a little bit more alert. And they were even able to start titrating her oxygen down and she was improving!
Day 3
Come morning, Lydia seemed to have improved a bit. I was glimpsing our girl a little, but she was still mostly hidden behind tired eyes. Her respiratory panels and swabs all came back negative which was such a relief – but her cough was still lingering, so they worried it was still in the beginning stages and just wasn’t showing up on the panels yet. I did not think we would be going home that day.
But we got a new nurse that morning and she really wanted to try and push Lydia a little more. We started titrating down her oxygen more and more and Lydia was maintaining. We met with multiple doctors and had some real talk. They felt like Lydia would do better at home. I, of course, felt the same, but also didn’t want to leave unless she was ready. But we talked about all that we were equipped with at home (oxygen concentrator, pulse ox, suction machine, g-tube, etc.) and they felt okay to move forward. The doctor said he felt like she was more likely to get sick being at the hospital than being home – SCARY!
I was not expecting it. And in all honesty, I was a little nervous. I wanted to go home, of course, but was hoping and praying I wasn’t making a horrible choice taking her home prematurely.
My parents were coming out for a short weekend visit from Utah. They had planned this before because Jacob was being ordained a Deacon (more on that later!) that weekend but they flew in and came straight over to the hospital. As soon as they walked in, we were given our discharge paperwork! They helped me gather our things and go down to the car.
Coming Home
It was such a blessing to have my parents there with us (in more ways than one!). My Mom drove home with me so she could sit in the back and keep a close eye on Lydie while I made the drive home. We came home to the sweetest kiddos so excited to see their sister and a Daddy who ran out – grabbed Lydie – and didn’t let go! This was them just minutes after we came home. The happiest and best I had seen Lydie in days 🤍
The weekend was quiet but wonderful. It was so great to have Gramps and Grammy here. Lydie was still sleeping almost the entire time. She seemed incredibly weak. Her cough continued and we were worried about that. But her oxygen seemed to stay within good levels!
We have been spending all of our time deep in snuggles. We don’t know how much of the tiredness is from the surgery and how much is from her seizure medication that I mentioned at the beginning.
Her cough has continued to linger but I feel like it is slowly getting better. We have had lots of warm Epson salt baths and the humidifier is constantly going in her bedroom and those seem to help.
We can’t get her to eat or drink hardly anything though. Thank goodness for her g-tube. She will take maybe two or three bites orally and then starts screaming. It’s so hard to see her like that. So we’ve been giving her normal continuous feed at night, but then adding in bolus feeds during the day. I am worried but really trying my best to lean into the Lord on this.
Her recovery isn’t going how I hoped. But I trust that she is going to get there.
It’s hard. It’s hard to not second guess everything. I hate putting her through so much. A possible tender mercy is that the ENT said her tonsils and adenoids were a lot bigger that he had originally thought and so we are hopeful the procedure will be enough to help her with her breathing in the long run.
We are so grateful for the love and prayers that have been given for Lydia and our family. We have felt them. We are grateful for a friend who came to help Mark give her a blessing the night before her surgery. We are grateful for those that watched our other children and made them feel loved and cared for while we were away. We are grateful for the meals that were made for Mark and the kids. We are grateful for the messages checking in on us.
To put it simply, we are just grateful for how people love us. It means so much.
Every day we are seeing little improvements and I have to remind myself of that. It’s hard to wait. But that’s what we are doing right now. Waiting for our wide eyed and happy girl to come back.
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