I've been wanting to write this down for memory's sake, but haven't really had the time since we've been home. Hopefully I can do it justice.
MONDAY
2AM- We have a camera baby monitor in Lucy's room, and her breathing was so weird that it woke me up. Lance and I both went and checked on her, and Lance set his alarm for every 30 min to check on her until he had to leave around 5:45AM. Her breathing slowly went back to normal by about 5:30 AM, so we didn't think anything of it. The day before she had been abnormally grumpy all day, so we figured maybe she was starting to get sick.
7AM- I walked the girls out to the bus (it's right outside of our house, so I let the two younger kids sleep inside), and Lucy slept for a few more hours. This was unusual for her since she usually wakes up around 7 due to all the commotion with getting everyone off to school. I continued to carry my phone with me during those hours which has the video and audio baby monitor right on it. I was still a little worried about her breathing the night before and wanted to make sure she was doing alright.
9:30 AM- I heard some really unusual breathing noises coming from the baby monitor on my phone. Lucy had just woken up, and I could hear that something was definitely different. I picked her up and brought her out to change her diaper. She was obviously unwell, and I could tell that her breathing was strained. I began to worry and sent a video to Lance to show him what was going on, and asked him if I should take her to the ER.
I couldn't get a hold of Lance, so I sent another video to Lance's mom, who has had breathing issues with a few of her kids.
The real worrisome thing I noticed was how her chest kept pulling in every time she breathed. I had never had a child do that before.
Neither Lance nor my mother-in-law were answering, so I tried to page Lance through the hospital which didn't work either. As it turns out, he was in a surgery the entire time, so he didn't get any of my calls, texts, or pages. At this point I decided it was time to go. I had been trying to make sure I wasn't acting like an overprotective mom, but I knew something was definitely wrong. I put some quick pajamas on Lucy so she wouldn't freeze, and had Blake go get his shoes on.
10 AM- On my way, Lance (who had finally gotten out of the surgery) called me and told me I should instead go straight to the Children's hospital as he thought they would be transferring her there and it would save time. He had caught me early in the drive, so I didn't have to change course much. He was going to meet us over there as soon as he could. Going to the Children's hospital was the best choice we could have made, and one that I think possibly saved Lucy's life. It's almost surreal to write that, because it would have been so easy to go to another ER, and I can't stand thinking of the "what if's."
10:40 AM- We had parked, and walked into the children's ER. As we sat down to check in, a nurse noticed Lucy's little chest and we were immediately taken back to a room (the first ER visit I've ever had without a wait). Lucy was immediately hooked up to heart monitors, and pulse oximeter, and given steroids and a breathing treatment. They let us know that the steroids usually take at least an hour to kick in, so we would be waiting for at least that amount of time. The breathing treatment helped and made the pulling in her chest a lot shallower...for an hour. Then it started getting worse again and her oxygen saturation levels again dipped into the low 80's. They gave her another breathing treatment, and she followed the same pattern: breathing treatment, slight improvement, worse an hour later. During this time, I had two nurses ask if they could show their nursing students what that type of breathing looked like on a baby. They said it was a "classic example" of stridor and chest pulling in an infant. In a normal case this would have subsided after the steroids and 1-2 breathing treatments.
12:40 PM- By this time, it was clear that breathing treatments and steroids were only mildly improving Lucy's situation. The physician over her case said he wanted to admit her overnight. I was shocked since I had never had a child admitted to a hospital before! We made arrangements for our kids to be picked up from school and go to a friend's house, and Lance made arrangements for the next morning so I could stay with Lucy, and he could get the kids to school in the morning.
1PM-4AM- The next 15 hours consisted of more of the same. That night, she would go about 1-2 hours between breathing treatments before her oxygen monitor alarm would start to go off (they had it set at 84%), and she would need another one. She started going a little longer between treatments, two hours, then three hours, etc., so I thought for sure she was getting over it and we would be going home by the time morning came. She even perfected her wave in the hospital that night, so I thought she definitely must be feeling a little better.
TUESDAY
6AM-Before this, she would progress slowly to where she needed a treatment. For example, 1AM-breathing treatment, 2AM- starting breath sounds, 3-AM -bad breath sounds and another breathing treatment. However, at around 6 AM she seemed fine, and then suddenly all the alarms went off. I jumped out of the pull-out bed and went over to her. She looked extremely pale and was completely unresponsive. Her oxygen monitor read 62% and I felt so panicked to see her like that. I picked her up and called for a nurse - a whole team came in to give her oxygen, and make sure she didn't need to be intubated. The suddenness and severity of her last episode made it scary for everyone involved, and this was the point where I was SO glad we were there IN the hospital when this happened, and in a CHILDREN's hospital, completely equipped with breathing devices specifically for children, and quick responding teams that were so used to emergency situations dealing with children.
6:20AM- All day Lucy was admitted to the Pediatric Intensive Care Unit (PICU). Her breathing was still so bad and the entire day Tuesday, and she was so lethargic. The nurses told us that her body was working so hard to breathe that it was like a marathon for her body. All she wanted to do was sleep (so unlike her), and she still hadn't eaten anything since sunday (she had gagged up a small amount of pedialyte they tried giving her because her airway was too blocked off, after that they prohibited any eating or drinking in case it became lodged in her airway. Lucy didn't want to eat or drink anything anyway). At this point, my in-laws started looking for plane tickets to come out and take care of the other kids. It looked like we might be in the hospital for a while.
7AM- Lucy was put on a nasal cannula with heliox- a mixture of helium and oxygen that is easier to breath than straight oxygen, since helium is lighter than air. This was the first time her body was finally able to keep her oxygen stable.
8AM- Lucy was given a priesthood blessing by Lance and another co-resident, Jacob. Lance's program director also came in and saw Lucy to see how she was doing. The nurse asked, "Um...are you family?" To which he replied, teary-eyed, "Yes, I am. This is my resident's daughter. That makes us family." We could not have been more lucky to be at this program for Lance's residency. Really.
WEDNESDAY
4AM- Lucy finally woke up. She was really distressed and agitated. She stood up and started pulling out all her wires, and oxygen monitors. The nurses said it was good that she was "getting her fight back"
10 AM- Lucy had slowly been weaned off the heliox and onto straight oxygen. At this point she could go stretches without her nasal cannula even, which was a HUGE improvement. However, every time she was distressed, crying, laughing, or attempted to eat her oxygen would plummet. They decided she needed to be kept another day.
11AM- Lucy got chest x-rays just to make sure she hadn't swallowed a foreign body that was blocking her airway. We found out there was nothing blocking it, but her airway was only opened 1mm (the width of the side of a penny)! And this was on the day she was doing better! I can't imagine what it was before.
At some point during this day, Lucy started eating again. She would eat those little 1 oz formula bottles, one at a time throughout the day, and they were finally able to unhook her from the IV. She started a round of antibiotics through her IV to clear up what looked like an infection in her throat as well (they told us that often when croup lasts longer like this, it has an infection component as well). They had told us that this all started from the croup, and on wednesday we finally heard signs of that as she would cough, and it had the barking sound.
THURSDAY
Lucy went the whole night without oxygen and was able to keep her oxygen levels high enough to go home! Yay. We were discharged around 11-12ish and went home exhausted from the whole ordeal. Who really sleeps well in a hospital? And when your child is having breathing problems, it's hard to sleep at all out of sheer worry. Lucy slept all day - I think she was glad to be in her own bed.
This was the first time Lucy attempted to talk during the hospital stay. You can see that she is still drooling profusely due to not being able to swallow very well.
SATURDAY
Lucy was still slow to progress when we got home, she was still having breathing issues, but nothing she needed to be hospitalized for. Saturday was a milestone because it was the first time she ate anything solid - 1/4 of a piece of bread in tiny pieces. This is SO unusual for her since she loves food and can eat as much as our other kids. It was sad to still see her out of her usual crazy, funny personality, and she was really docile and non-talkative.
MONDAY
She was finally talking, playing, eating, and being generally more herself. We love this sweet little girl, and I'm so grateful for all the help we've had during this whole ordeal. There are countless neighbors who brought dinners and watched our other kids. My sister-in-law Ellisha who flew down from Washington and took care of my other kids the last three days we were at the hospital. The amazing doctors, nurses, and respiratory therapists at Cardon's Childrens Hospital in Mesa. The amazing OMFS residents who covered Lance's work and call. And everyone who offered their prayers, phone calls, e-mails, etc. I wish I could respond to all of you personally, but we are so grateful. Thank you!!!
