A rough night

Emma had a rough night last night. She was in a lot of pain and had maxed her dosage of Tylenol w/ codine so they gave her the secondary pain med which was a low-dose of morphine. She calmed down, looked MUCH more comfortable, and finally started drifting off to sleep. She must have gotten into a really good sleep, because her heart rate began to decline. This kiddo is usually between 95 and 115 when awake, and anywhere up to 130 when active. Her HR was dipping into the upper 40's. Not a good thing! We kept waking her, poking her, watching her. Her oxygen saturation levels were pretty good for a while and staying in the mid-90's but then they too began to drop into the upper 80's. All night her alarms went off and the nurse kept coming in to stand over her and watch her and see if her HR was going to recover without having to wake her up. By about 10:30 most of it calmed down but she alarmed another 8-10 times during the rest of the night.

No more morphine for Emma!

She had morphine once before during this stay and it didn't affect her the same way, so it's possible that the morphine wasn't the only culprit. She's also on Digoxin for her heart and it varies the HR allowing a longer "resting phase" (as it was explained to me). She was given the digoxin soon after the morphine and it could be the combined effect of the two which set her little body in a tail spin.

We held all pain meds until this morning when she woke up and her heart rate went back up into 100+. That means she had no meds since 8pm when she got the morphine until 8am when she got Tylenol with codine again. I don't think she was in any pain because usually a signal that there's pain is an increased HR and she was still alarming (under 60) right before waking this morning.

Needless to say we're here until at least Sunday to make sure when she sleeps tonight that she's able to keep her HR up. She also isn't drinking anything still and needs to be drinking to go home. So... we're taking up residence and glad we brought extra toys to play with.

Mike took the other three kids to "Great Explorations" which is a hands-on museum type thing that Mike took Kristopher to when Bria was having her open heart 2 years ago. They are having a good time and are glad they chose today because it's storming outside anyway.

K has met 2 little boys whom he adores and has had a great time playing with them. One little guy has a brand new little brother that's 2 1/2 months old and has hypoplastic left heart. He's already had his first surgery and a g-tube put in. They're waiting on enough weight gain to get the go-ahead to go home hopefully Monday. They live just about 40 minutes south of us, so I hope we'll be able to keep in touch!

While we're here we've met three other families with hypoplastic left (one was right) heart. Two were babies and one was a 3 yr old that is having her third and hopefully final surgery for it. The 3 yr old's name is Emma and she has CP and Epilepsy in addition to the heart issues. Sounds a bit like my Emma. Last night at dinner I met another two moms with little heart babies. Their babies both have coarcation of the aorta (I think) and have had their surgeries. Both are just a few weeks old. One of those new babies has 6 older brothers and sisters and they proved to be great playmates the first day we were here as well. (They later went to stay with someone else.)

Lastly, on Thursday we took the security van as a ride to the hospital the 2 blocks since it was drizzling and we were bringing Emma in for her surgery. Waiting with us is a mom to a 9 day old little boy. Doctors say he has a PDA and PFO (both small heart issues that will likely resolve on their own). He also is suspected of having Hirsprungs. He has some features of Ds as well and they are doing testing to know for sure. Please keep this momma in your prayers. She's now here on her own, Daddy returned home for a bit. Although I have a baby girl by birth that has Ds, I didn't get her diagnosis in the typical manner when she was a newborn so that whole series of emotions is so foreign to me that I can't try to say that I understand it all. It's got to be SO difficult to go through and I feel awful that she's having to do it alone. I hope to be able to catch up with her before we leave and encourage her again. She only met my Emma and I did tell her the 2 second version of Emma's story so she wouldn't get the impression that Emma's 'condition' is a result of Ds alone. I hope to introduce her to Micah and Brianna so she can see a bit on the other side of the spectrum too.

There are so many different families, and I'm amazed at how many have cardiac kiddos. I spoke with a few other families but will share their stories another day :)