We brought Neely home (for the 4th time?) on Sunday the 16th. A week ago. That was after they admitted her for anemia which turned out to be, "yep ... she's anemic". Monday, Tuesday, and even Wednesday were great. We had a few ostomy bag issues, but other than that the Lucquete house was probably the happiest it had been in months. Neels slept pretty much throughout the night and smiled away the day. We had a couple of nice family dinners with Neely claiming a spot at the head of the table (on her little changing table cushion). It felt so awesome to sit around the dining table, saying grace while holding her hands. Without having to run around between Grandma's, Dell, and our house, I actually had time to make dinner! It was awesome having my girls at home.
|Enjoying her swing (thanks Aunt Keri!)|
|Very carefuly, a little time outside|
We had an appointment on Wednesday at Dell with her hematologist. The visit was pretty uneventful ("yep ... still anemic"). My friend Rhea stopped to visit us at the appointment, very cool. By Thursday morning, I was really feeling pretty good. We seemed to be on an upswing. Only one thing ...
I forgot it was friggin Thursday. Thursday seems to be the day when the bad stuff happens. I don't know why. It seems statistically impossible for things to always go wrong on Thursdays, but somehow they do. I remember being at work and being almost myself again. Cheerful and focused and busy. People asked how Neely was and I was able to say, "She's doing great!"
Around 2, I get an update from JD that she had been fussy all morning (RED FLAG) and had a slight temp (RED FLAG). He tells me that he is unswaddling her and will take her temp again in a few minutes. I try to believe that everything will be okay and that maybe she was just swaddled too tight. Deep down I already know. My baby is never fussy unless she is in pain. The next update is that her temp is climbing. I push back from my desk and start crying because I know what happens next. Special thanks to Irene, Amie, Jess, Shirley, and my other coworkers for helping me through those next few hours. I called her GI doc's office and was told she probably had an ear infection and to call her pediatrician. I called Josh to ask him to hurry home and take a look at her. When he got home, he was able to get her temp down with some cool washcloths. I called again to check on her and he said she was holding her breath and trying to bear down as if pooping. She seemed to be in a lot of pain and he was taking her to the ER. The next time I called, he said EMS was coming because he didn't know if she might stop breathing on the way to Dell in 5 o'clock traffic. I left work to meet them at Dell. I got there too early and tried, through tears, to check in at the front desk. Not sure if I made any sense at all. Thank God my brother and Judy showed up to wait with me. They put us all in ER room 24 and we waited for Neely, JD, and Josh to get there. When Neely got there, she was super pale, but alert. She was making little raspy painful sounds and there was not much I could do to help her calm down. It's kind of a blur to me what happened in the ER, but I do remember them saying she probably had a virus and was a little congested. I tried to explain her history and what we thought was going on (see post by Jack, below). As I did this, they were doing some horrible procedure that involved flushing out her nasal cavity. They pulled out a little mucus like "tada! here's your culprit", and I think we all just prayed that a doctor that actually knew her would arrive soon. But no ... a surgeon came to look at her and decided to flush out her stomas and rectum. Josh asked how much the doc wanted to flush with because she is tied off inside - there is nowhere for liquid to go and we were concerned she would burst inside. For some reason, this doctor seemed to think we were calling him inept because there was some remark about how he had been doing this for a long time and he was pretty sure he knew how to flush, etc. We quickly explained that we just wanted to understand what was about to happen. Then we watched as he flushed her jejunostomy, her fistula, and her rectum. All with the same little tube. A little green stuff came out of the first two, and some mucus came out of her rectum. She got a Tylenol suppository and seemed to feel some relief. Antibiotics were started and we were moved to the PICU. Aunt Caty, bless her heart, came to see Neely while we were still in the ER and joined us for our move to the PICU. By this time, I was mentally exhausted and it was awesome having Caty there to answer questions about Neely's time in the NICU. She went immediately into War Room mode and put questions up on our dry erase board. She was vigilantly watching everything and asking all the right questions. She stayed with us until 1AM, enduring our weirdness and Uncle JD's hadn't-slept-in-over-24-hours bad jokes. Words do not describe how we feel about our Caty. Jack was right in his last post - she is like Neely's guardian angel.
Anyway, back to the PICU. Neely seemed to do a little better, but then quickly got worse. She made some of the most painful crying sounds I have ever heard. She spent the next day and a half making a painful whimpering sound during every - and I mean EVERY - exhale. Even with morphine. Even with antibiotics. I didn't think she had any more energy to go on. Can you imagine spending almost 2 days feeling that kind of pain? I couldn't sleep much, hearing her make that sound. Like a tortured animal. It made me think how I had in recent years had to put my two 16-year-old doggies to sleep because they were in pain. As soon as I knew they were in pain and would not get better, it was clear what the right thing to do was. I wouldn't let an animal suffer and here I was, listening to my baby daughter struggle in pain with literally every breath. For almost two days. We kept asking for more morphine. Please feel her belly? Doesn't it look swollen? Can she please have some Tylenol? Her temp is up. She's really red. Really - the CT scan and X-rays showed nothing???
Finally early Saturday morning, the surgeon who has done all of her surgeries saw her and decided she was not improving, her belly looked swollen, she was not responding to treatment, and it was time to take her unused intestines out. We knew this was coming. We wanted someone to say this. Somehow, it was still a shock. Surgery during a fever and infection is not ideal.
After watching her struggle for so long, I was afraid she was not going to be strong enough to make it through the trauma of such a major surgery. I talked to her, whispered in her ear what a good baby she was. How proud she made us all. How strong she was. How no matter what, she was going to get to rest and not have to fight so hard. I told her we loved her so much and to not worry. I told her over and over just to do what God tells her to do and it would all be okay. In weaker moments, I begged her not to leave me. Jack and my mom came a little before they took Neely to surgery. We all prayed for her. Josh told her how amazing she was and how in her short life, she had already taught us so much. He told her how grateful he was for her teaching him how so many people - friends, family, and strangers - could come together and do wonderful things for someone in need. With 2 minutes to spare, the chaplain on call walked in and baptized Neely with holy water from Lourdes (from a trip many years ago). All too soon, I was handing her over again for surgery. How many times have we watched them walk away with our little girl to the operating room?
Meanwhile, in San Marcos, things were ramping up for Neely's benefit, a BBQ fundraiser. We had so hoped to be there, but thankfully, JD and Josh's mom were able to attend on our behalf. My sweet friends texted me lots of pics of the event. I truly feel that these pics sustained us during what was an incredibly scary few hours. There was a BBQ plate, bake sale, and even some crafts for sale. Volunteers stood with signs, bringing in traffic. It was a huge success! We have such ridiculously amazing friends. And our friends have ridiculously amazing friends. Josh and I are still baffled as to what makes people spend a perfectly nice Saturday volunteering their time to help our little girl? Yes, sometimes it takes a village to raise our little families, but I guess it's different when you can actually see that village, all gathered up in one place with smiles on their faces and a spiritual energy in their hearts. My Texas Oncology family does this - we do it for Relay for Life and Race for the Cure. We do it for loved ones lost, sweet patients and coworkers who have passed. But this time they were doing it for our little girl. Our little Neely. There are no words to describe how that feels for us.
Back to Dell ... the surgeon came in and said he was very pleased with the surgery. He said she lost a lot of blood - 140 cc's or so, but that it had been replaced. He said, with guidance from Pittsburgh, he removed all of her unused intestine, large and small. He removed her gallbladder. She no longer had a mucous fistula. She only had about 2 inches of colon left above her rectum. He said she was doing well and that his concerns were about the cavity left behind where her intestines had been. It might make transplant difficult because there will be size issues between the transplant organ and the space she has to accommodate it. He mentioned possibly implanting a device at some point to keep this space wide enough. After he left, a flurry of nurses and doctors came in with Neely, working like a well-oiled machine all around her. Pumps, catheters, an arterial line, a breathing tube, etc. There are so many "things" keeping her going right now. Let's just say this would be a really, really, REALLY bad time for an apocalypse.
The doctors warned us that she would be very swollen and that things would likely get worse before they got better. They would be on the lookout for blood pressure problems, fluid in the lungs, not enough urine, etc. The warning was good because she did indeed look swollen. Swollen and red and surrounded by IV tubing, with a breathing tube taped to her face. The nurse assured us that she would be watching closely for signs of pain. Neely is on a Fentanyl drip, with Versed for sedation. She is totally night-night.
Even though she looks terrible, I feel better knowing she is not fighting this by herself anymore. She is relaxed and sleeping. She is surrounded by nurses constantly, monitored intensely. In a way, I feel like we can all relax for a little while. I actually left last night to go home, shower, and spend some time with Laney. I'm sure that's not how every mother would handle this situation. I guess I know myself too well. If I sat here eavesdropping on every conversation they had about Neely, watching every number on the monitor, measuring every drop of urine, I would go nuts. That's like watching your 401k. Things will go up and come down. All I need to know is the overall. Is she improving or is she getting worse?
As of today, right now, she is improving. Temp is good. O2 saturation is good. Swelling is going down. She is making lots of urine. Heart rate is good. She is less red. She is sleepytime. She is not going to remember this.
|Less swollen, day after surgery|
P.S. Next post will be about the fundraiser and the many, many good folks who helped/donated. Thank you all so much for everything.