I feel like I've sort of lost track of things. Before her 6th surgery (intestinal removal), we had a pretty good grasp on things - her unusual internal anatomy, her medications, her schedules, etc. We were really the experts on this little girl. After that 6th surgery, I think we all had to step back and just watch somewhat helplessly. She had so many IVs, so many pumps, so many medications, so many issues. I don't think it would have even been a good idea to try to keep up, because it seemed to change a lot.
Neely took a lot longer to fully recover from the 6th surgery. She was very swollen after surgery, which they told us to expect. They said she'd get a lot worse before she got better. The first night after surgery was pretty rough. Her temperature dropped and they had to put a big warming blanket on her to bring her temperature up again. Her oxygen absorption wasn't great.
After that night, she seemed to improve a little faster than expected. Her swelling went away pretty quickly, but then we noticed that there was uneven swelling - all on her left side. We were happy when that seemed to go away, but the doctors still felt there was something brewing in her belly. They suspected there was more bacteria and/or yeast in her abdominal cavity and were hopeful her body would form a big wall or abscess around the infection, which they could then drain. This never happened. Ultrasounds showed some small pockets of something, but not one big thing they could easily drain. We thought things were really getting better because the swelling had gone down so much. Other ultrasounds showed a possible "fungus ball" on her kidney. We were pretty worried about that, but after another ultrasound, it was thought to either have been a fuzzy spot on the ultrasound or some harmless (sort of) cyst.
Just when we stopped worrying about that, we got a call that they wanted to do a procedure on Neely's belly to aspirate one of the small pockets they found on the ultrasound. This is not done under anesthesia, but they gave Neely some extra pain meds before the procedure. Right before the doctor put the big needle in her tummy, they gave her some meds for sedation. She was still awake and upset. They gave her more. Still upset. More meds. Still upset. I lost count of how many extra times they gave her meds to help calm her. It didn't work and they were getting nervous about how much stuff they were giving her. Finally, they decided to just go for it. Hold her legs, hold her arms. We watched while the doctor poked her twice with a big needle and drew fluid from her belly. I'm sure it felt like torture. I think there is a certain pitch of a child's cry that just makes a mommy's heart ache. Afterwards, Josh asked me why there were red marks on my arm, and I realized I had been digging into my own skin. Despite all the pain and sedation meds, she was still wide awake afterwards. They said that if the fluid they drew tested positive for bacteria or yeast, they would need to go back in and operate to "clean her out".
It seemed to take her a lot longer to truly recover. She was still on pain meds and definitely let us know she was upset whenever they tried to step down on her narcotics. She had a fever for longer than usual. I was really worried that this time she would not pull through. I guess I still worry about that. Slowly, things seemed to get better. They put her on methadone to help her with withdrawal. They put her on an additional antifungal drug. Her temps normalized. They took her off the ventilator and she did great breathing on her own. Her cultures kept coming back negative. Not sure if it was the methadone, the extra antifungal, or just time, but she finally came back to us. The real Neely. The smiley face. The sound of baby cooing and the crinkle of diapers from baby legs kicking up and down. It was amazing. She was back!
They moved her out of the ICU to the 3rd floor. This was a great sign. They don't move you and work so hard to take you off of pain meds unless you are well on your way home, right? It was awesome and it was also Thursday. Not a bad Thursday at all! The following Friday, I was at work and feeling wonderful (other than work stress), because she was getting better.
Then around noon, I got a phone call From Josh. I knew it was bad because he never calls me while he's at work. I braced myself, my mind racing, trying to come up with what he was about to tell me. They found a little yeast in one of her belly cultures. They want to go in and operate and clean her out. When? Today. 3PM.
Once again, I lost it. I just kept thinking I had jinxed it because I told everyone she was doing great. "I'm afraid to be happy anymore", I told my coworkers, through tears. It's true. It doesn't feel "safe" to be hopeful. My sweet coworkers told me to go and be with her. As I've said before, I don't think there is any point in asking God "why???" or saying "it isn't fair", but during that car ride, I came pretty close. This was the first time we had to hand our non-sick baby over to major surgery. She's going to hate us. She's going to think this is all there is to life ... be happy for a little while, be in pain and in recovery for longer.
I spent a little time with her before they took her away for surgery. She was so happy. So happy and I knew that when she woke up again, she was going to be in pain. In the waiting room, I tried to knit her a little scarf (thanks for the beautiful alpaca yarn, Jenny!). After an hour, I was too nervous to do anything. Josh and I tried to figure out how many surgeries she had. We had truly lost count. We bickered a little, because ... well, because that is what you apparently do after being at level 10, code red for almost 4 months now.
Finally, we were called to the recovery room. There she was, once again connected to monitor and with a breathing apparatus under her nose. She was definitely in pain. Most likely because the pain meds prescribed were way under her baseline. She has such a tolerance now that, as Josh says, morphine is like candy to her. It barely does the trick. Because she was in surgery, she missed her methadone dose. This also made her feel horrible. She started to cry, but the belly pain was so bad that she would not inhale again and started to turn blue. The oxygen monitor started to go from 100 to 60 something. She finally took a breath, but now we had a whole new thing to worry about. After a while, she was put back in her room on the 3rd floor.
That night was long and restless for all 3 of us. She was in pain, but it seemed like no one was willing to step up on her pain meds without checking with someone else. It being the middle of the night, the answers did not come as quickly as we would have wanted. She cried in pain every few minutes or so and the alarms on her oxygen monitor and heart rate monitor went off repeatedly. I had flashbacks to her painful little cry prior to her 6th surgery. It was a bad situation. Apparently, she had been on a weaning schedule, so none of the pain meds besides morphine (candy) were available to her. And the methadone was late. And the Ativan (sedative) was inadvertently left off of her new orders. And the pharmacist seemed reluctant to give her any more morphine because it was already so much, even though it really wasn't enough for Neely. I felt like we asked many times and explained many times that she needed more. I don't want to say that they ignored us, but I can say that not much was done. It was so frustrating.
I fell asleep for a tiny bit, but awoke again around 3:45AM. She was still in so much pain. They said her hemoglobin came back low again - 7.2 and they were going to give her a blood transfusion. Her temp was 101.6 and I asked if she could at least have Tylenol. The nurse said she asked the surgical nurse practitioner, who wanted to defer to the surgeon. At this point, I'm ashamed to say, I lost it. I tried to wake Josh to tell him about the Tylenol thing, but he was so tired he could not wake up. I felt so alone. So powerless. I sat at the edge of the bed and cried. Finally, like a coward, I walked out of the room. I know I should have stayed with her, but instead I cried and went to the chapel. There was no one there, so I cried and prayed and begged. Please help her feel better. She's just a baby. I finally calmed down and sat in my car and waited for shift change. I wanted a fresh start.
I called Josh around 7:15AM and asked who our nurse was and if we had had her before. He said she was new to us, but was a sweetheart and seemed to be on top of things. I walked back to our room and Neely did seem better. She was finally asleep. Not sure if it was the Tylenol they finally gave her or the Ativan they finally put back on her orders, but she was finally asleep. Slightly refreshed and energized, we talked to as many people as possible about her pain. Explained it over and over and Josh added a "and please hurry" every time. One of the docs came in and said that it seemed like the nurse/s from the night before did not push her morphine button as often during the evening. They wanted to try that first before they changed any orders. So we started pushing it ourselves. Every 30 minutes, she would rouse and cry and we pushed the morphine.
It was better, but as our nurse said, it would not be manageable at night. I left around 6:30PM to get Laney and Josh stayed to wait for JD. Josh said our previous anesthesiologist, Dr. Park came to talk to him and said some very nice things. He apologized for Neely having had such a rough night. He basically took over and made sure everyone was on the same page. He went up slightly on Neely's morphine and gave her the option of another pain med if it was another rough night. He said it was cases like Neely's that are the reason he got into his profession - he wanted to help kids like her. He seemed to take a special interest in her case. I wish I hadn't missed that conversation. I hope to see him again soon and thank him, because Neely had a much better night last night and was awake and alert today.
He also said some rather alarming things. He was in the operating room for Neely's 6th operation - the one where her intestines were removed. He said she was in pretty bad shape, very sick. She bled a lot. There was a lot of infection. He said it was very frantic, with lots of people saying lots of things. Lots of adjusting to different problems, lots of medication. An organized chaos. He said he only comes across something so challenging once a year, maybe. It was one problem after another that they had to keep throwing different drugs at. I guess, as the title of this post says, we were blissfully ignorant of all this. We knew it was bad. We knew it was serious. We did not know she was in sepsis. Thankfully no one used the word before the surgery, because we would have been a million times more afraid. All I've ever heard is that sepsis is very bad. Fatal. I'm so relieved we never knew this during her surgery. We were scared and worried, but were still able to be comforted by pictures of the BBQ fundraiser. We were still able to talk and joke around a little. Had we known how bad it was ... I think it would have been excruciating. We could really have lost her that time and we didn't fully know it. We are so grateful for Dr. Meyer, Dr. Park, and everyone in that room that day. They literally saved her life.
So it is Sunday and she is, again, doing better than expected. A little swelling, but no more fevers. Her white count and other numbers look very good. Her liver enzymes are a bit high, so they will consider taking her off of one of the antibiotics. She was awake and, though she seemed a little hazy, she did not seem to be in as much pain. So much better that they are already tapering her morphine down a little. She is so amazing. She really is tough. A real champion, which is what her name technically means.
I was admiring her little smile right before she went back to surgery this last time. Just the fact that she does smile. How many times a day do we get irritated or frustrated by some little thing? How many times do we let our minds stew over some stupid situation or get our hearts broken by someone and we just think life is horrible? My little girl ... she has known ZERO days that did not involve medication and very few days that did not involve sickness or pain. But when things aren't so bad - she smiles. She's beautiful, sweet, smart, resilient, and lovely. She's surrounded by angels, seen and unseen. She's prayed for daily. She's endlessly loved.
She's done so much in her little life, but she doesn't know anything about that. She sees pretty colors and she smiles. She hears familiar voices and she smiles. She watches the little animals on her mobile move. And she smiles. This kid has a lot to teach us about how simple happiness is. How little we can live with and still be happy about.
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| Neely Jacqueline Claire Lucquete, smiling right before her 7th surgery |
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| finally, some much needed sleep |
Okay, thought I'd have more time to write about the BBQ fundraiser and the hundreds of wonderful people who have supported us with prayers, donations, support, meals, uplifting words, music, ice cream (!), and lots of other things. We thank you so much from the bottom of our hearts and we realize that is not nearly enough.
As I told my friend Lori the the other day, sometimes we feel like we're in the middle of a terrible storm, but it seems like all our friends and family surround us and protect us, whirling all around and giving us exactly what we need to get by. I'm sure there is a more eloquent way to put that, but it is almost 11PM and I'm about to run out of brain juice.
Love to all,
Kat
It is incredible that you are taking the time to keep us informed...I wish I was your co-worker:( Neely is so beautiful. My mom and I were reading about her diagnosis and there is just so much that can go wrong it's a wonder any of us are here. Thank you for sharing your thoughts, how true it is that happiness is so much of attitude. She has a loving family and it shows.
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