You know we had that scare about two weeks ago with her. Ever since then she was fine at home. We were excited about taking the monitor off 24/7 after two weeks. On Saturday we took the monitor off and she was only wearing it to sleep. She did great being watched by her Gigi and Papa while her mommy and daddy went on a date.
On Sunday morning, Teresa (her Gigi) was holding her and she was sleeping. I happened to look over at her and noticed that she had slumped over more and had started turning blue around her lips and even into her nose area. Of course it was super scary and we started doing all we could to get her to wake up and respond to us. She came around after a while. We didn't know what to do. We knew this had happened before, but we had no idea what it meant that it happened again. She seemed to be okay and was tired so we pulled out the Pack and Play and put it in the living room so she could nap there and we could watch her. We also put the apnea monitor back on her since it was off during the day. Clifton and Teresa left to go back to Thomasville. Lucy woke up from her nap probably not even 15 minutes after they left and Wesley was playing with her on the floor. She was sitting up, playing with her toys, when she just slumped over again and turned blue. This time we were freaking out. It had happened twice within about 30 minutes. The second time the apnea monitor didn't even go off when she had the episode. We tried to call the apnea monitor company, and I tried to call the pediatrician only to get a number for Children's Healthcare of Atlanta at Egleston. I had to wait on the line to get a nurse. Wesley spoke to her and after hearing everything, she said we should take Lucy to the E.R. I was so upset. I did not want to go to the hospital again. I just knew they were going to do all these tests and send us home with no answer again. But I was scared, so after packing a bag this time, we headed to the E.R. When we got there, there were several other families with kids in the waiting room so they gave us a number. While we were waiting, I was holding her, and she slumped over again in my arms and turned blue and I was calling, "Somebody please help me!" and these nurses ran out and grabbed her and rushed her into the trauma room. We finally got in there and they got her on oxygen and they were trying to get an I.V. on her and everything. While they were working on her, she started going splotchy in her face and then started turning blue again on the table. They quickly put an oxygen mask on her instead of the little nasal things and she came around. By this time, Wesley and I were both in tears and so fearful for our little girl. We didn't know why this was happening and how long it was going to keep going on. We were just so scared.
After about an hour or two in the E.R., they got a bed ready for her in the Pediatric ICU. We went up there. They didn't know what was wrong. At one point that night, while sitting up in the bed, she had another episode and her oxygen saturation got down to 17. Just to give you an idea, everybody's oxygen saturation should be right at 100, as in 100% of your blood is oxygenated. 17 means that for a few seconds, Lucy was only at 17% of what she should be at. They told us it might be something wrong with her heart, so they wanted to do an echocardiogram the next morning.
They did that test, and everything was normal (including another chest x-ray ... this girl has had a lot of radiation in her short life!). They told us they wanted to do a sleep study to see if she had obstructive sleep apnea. I guess there are two types of apnea -- one that you can have while asleep and one you can have while awake. They came around 8:30pm that night to put all the wires on her. There must have been 40 wires, no joke. Her head was all wrapped up and they had things on her nostrils and on her lips and her eyes and almost everywhere you can think of. So yeah, that's probably the best way to get a baby to go to sleep, right?! WRONG! haha. Let's just say that she would only sleep for about 10-15 minutes at a time, and only if I was standing there holding her arms and legs down. If I didn't, she would flail her arm and pull out a wire or wake herself up. So basically from about 9pm until the test was over at 3am, I stood beside her bed holding her down while she cried and didn't sleep. I guess that she slept enough, though, because the sleep study did show that she had both types of apnea.
The obstructive kind can happen when something is blocking the airway, in most basic terms. It could be the way her nasal cavity is shaped, or her airway, or something like that. They said there is not much they can do to fix that. They think the surgery may fix that some. The other kind of apnea happens because she has periods of time when she breathes, then doesn't breathe for anywhere from 5-13 seconds, then breathes again, and repeats that for a minute or so. What happens is that with the first delay in breathing, her oxygen levels drop some. With the second breath, she can't recover up to what she needs to be at. So with the second delay in breathing, her oxygen levels just drop even more. If she does that for a minute, her oxygen levels are so low that's why she turns blue and goes limp. They said they usually treat this with plain old caffeine. Yep, caffeine! I guess it speeds up her respiration and brain function just enough to keep her body breathing at a normal pace. So they started her on caffeine that day. It's just a syringe full of clear liquid caffeine that we squirt in her mouth and she (mostly) swallows.
That night, even though she didn't have all the wires on her, she just wouldn't go to sleep. I think the most she slept at a time was an hour. The rest of the night it was like 15-20 minutes of sleep then waking up crying. Finally, around 6:30am, I think the nurse felt so bad for me having not slept the whole night that she took Lucy out of the room and let the other nurses entertain her while I slept. I think I slept for 2 hours and she said Lucy fell asleep after a while, too, and got about an hour of sleep.
That morning, the doctors came in and told us that we could go home that day! I was so surprised because I thought they were going to move us to the general floor but the doctor said that all they would do there is just continue to monitor her and give her caffeine, and that's stuff we could do at home. So on Wednesday around lunchtime we packed up and went home.
Lucy still has to wear her apnea monitor 24/7, and she gets caffeine twice a day. We'll just continue that indefinitely but for sure until after her surgery I'll bet. It's annoying. The apnea monitor is a pain for her to wear and it's bulky to lug around. She hates swallowing the caffeine and I worry what side effects it's having on her digestive system. But it's better than having a baby that turns blue and goes limp and unresponsive, that's for sure.
We're very blessed to have an unimaginable number of people in our lives that prayed for Lucy and for us while we were in the hospital. I probably had hundreds of Facebook comments, and lots of texts and voicemails from our friends and family, telling us they were praying for us and asking if there was anything they could do for us. People were asking to bring us food and snacks and to watch Lucy so I could sleep. I just don't have the right words to say thank you. People even made their Facebook statuses things about Lucy, asking their friends (who don't know us) to pray for Lucy. How incredible. It's humbling, really. We don't deserve such an outpouring of love and support. But I will take every second of every prayer that people pray for Lucy's healing and recovery because I want it so badly also.
So her six month birthday came and went without much fanfare or celebration. I have no height or weight stats to share with you (oops, not true. She is 24 inches long. I know that because they had to measure her for the sleep study). We had a 6 month well visit scheduled for Monday, but we had to reschedule until next Monday for a well visit/ER followup.
Lucy also has her appt. with the pediatric ophthalmologist tomorrow morning. I'm not expecting to learn much -- it's mostly just a chance for this doctor to see her and get an idea of how she is pre-surgery so that he will know better what is different post-surgery.
We joked while in the hospital that Lucy is just like her mommy and wanted to check out the hospital floors she was going to be on after the surgery so she could plan better. :) Well, we've seen the PICU and we've seen the 5th floor East, so we're all set. I just hope after her surgery we get a room with a better view than the ones we've had previously (parking garage and blank brown wall, respectively). I also know what things we really need in the hospital (good toilet paper, juice that's not from concentrate, and comfy socks) so we can pack those things when we go in next. After this year, I never want to see Children's Healthcare of Atlanta - Egleston again!!!! No offense to the hospital, but I have seen QUITE enough of you!!!
Here's a picture of Lucy after she fell asleep on one of the nurses the morning she was being entertained while I slept:
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