Here's some answers to questions left in comments or e-mailed to me over the past few days:
Meredith will she sucks on ice lollies - ice pops? Have you tried a syringe to get a little of something she likes into her mouth to remind her how she likes the taste? -sarah and immy from the UK
Unfortunately, Emma doesn't do COLD. Or really even cool. We have tried a syringe but since she hates getting meds even more than eating (remember my kid hates me?) she hasn't been very happy about that. We also tried something similar, squeezing the nipple (it's cut large) and squirting it into her mouth. This technique was also met with tears.
Is it possible that her heart rate has always dropped like this at night? (not sure if you've tracked her overnight hr prior?) Given her condition - perhaps this is her norm? -Sarah - from NY
It is definitely a possibility! We are starting to think that's the case, but even if that's her 'norm' it's still not a good thing. We haven't tracked her overnight hr prior to this stay, but the first night here her hr didn't act up... so we don't know which one is her 'norm'! (and thanks for coming out of lurking :) )
Very odd! Or, is it that you are seeing the specialist tat deals with a rare condition (HLHS)?I know my brother has a child with an extremely rare genetic disorder and yet, when they goto their specialist, they are surrounded by parents with kids who have it.Amazing though! How are the other parents' kids doing? Is it giving you more hope??? -BoufMom9
We are at the hospital with some of the best heart surgeons in the state, so it's possible that people "flock" here, but all these people ARE from FL, so it's not like it's a country-wide program... I don't know! All of the kiddos with HL(and R)HS seem to be doing great, as are their parents. Two have since gone home and one is being released today. I think our situation is pretty different from theirs since Emma has a different heart defect and a few other issues to combine with it, but I am always hopeful especially seeing the testimonies God is making with the hands of our same surgeon in these other families :)
I want to give my friend some comfort, and information, but I had never heard of HLHS before.. -Kathleen
All I know is that it requires three surgeries... One within a few weeks of birth, one around 6 months, and one around 3 yrs of age. I do have the e-mail of one of those mommas that lives nearby (Viera) and might be happy to have another person to walk through it with. Her son is 2 1/2 months and should be going home today! Call or e-mail me with your friend's info and I'll send it on to her if you'd like :) (PS, check the comments for more info, a HLHS momma left some notes for you!)
When I read the last update I thought it was from this morning. Sorry to hear her heart rate is not staying up through the night. Are the drs. saying it is the meds. like you thought yesterday? Hopefully it will be back to normal real soon. Prayers are with you all.--April
At this point we aren't blaming the morphine anymore since she only had morphine once and her HR dropped three nights. We don't know what to think at the moment!
Meredith ... I was talking to McKenna the other day about Emma's HR dip to see if she had any thoughts. She said that Darah's had done that and that the doctor told her it was because of the anesthesia. This might be totally off, but do you think there are different types of anesthesia and that maybe she reacted bad to the anesthesia they used for the MRI, but not to the anesthesia they used for the T&A? I just thought I'd mention it in case it could be the culprit. :)-- The Balsis Family
I agree this is a good argument. And at the time you posted it it made sense too, I did ask about it. Unfortunately the next nights disproved this theory since it kept dropping...
...Does it drop when she’s napping? I’m also wondering if they might decide to do heart surgery sooner rather than later with it going down like that? Does she turn colors at all?... -Kathy
No, her HR doesn't drop when she's napping. Well, not down to the 40-50's anyway. Maybe around 65-75 instead of 95-115. I don't know if they'll decide to do heart surgery sooner. Unfortunately that's all based on the surgeon's schedule at the moment but I'm hoping that he'll decide to go for an earlier date!! She does NOT turn blue :) :) YAY!
The Cornish Family... Chasing God's calling...
Have you tried a pacifier? Sarah was off her pacifier at the time of her T&A, but the doctor's office had me bring it and give it to her after the surgery. They said the sucking would help with the soreness and swelling after surgery. For older kids they have them chew gum for the same reason. It really seemed to help. Now she ate before she would drink. She liked mashed potatoes and mac n cheese. Not sure if Emma is eating foods yet,but it might be worth trying. The 7th through 10th days were her worse days. They said the scabs were coming off. She refused everything. We almost ended back at the hospital during this time. After that she was back to normal. We were also one of those families that they sent home before she was drinking/eating well and being at home made all of the difference. We are praying for Emma. We check your blog often. Love to watch your journey. Sarah our child with DS is also adopted and we are starting the adoption process again. You are such an inspiration and a model of God's love.
ReplyDeleteRobyn
HLHS is where one side of the heart is bigger than the other. In fact, the other side is so small that it cannot do the work it is supposed to do. It usually requires 3 surgeries to reroute the 'plumbing'. (some kids can get by with 2). In the past, the surgery was thought to buy time until a heart transplant. These days, the surgeries are so much better and the prognosis is better.
ReplyDeletesawyer came home on oxygen. (24/7) It really wasnt that big of a deal for us (with just him and a 2 year old to deal with). I took him everywhere he needed to go with a portable tank. If I were you, I'd probably be asking to put her on O2 at nite. It'd put you at ease, I think. Just a matter of keeping the tubes in her nose....
Will she not eat the pudding either? wasn't that what she liked at home? If you could manage to get a little on your finger and on her tongue....maybe....
Good luck...
Jan
Meredith,
ReplyDeleteDon't you wish you could tell what was going on in Emma's head? Our son Bryan, adopted from Guatemala at 16 months, has been home for a year now, but still freaks out when we go anywhere overnight, or when anything changes. I think he thinks he's going to be abandoned again. Maybe Emma is feeling insecure...
On the other hand, our son Wes who's 15 who has Down syndrome, never complained when he was in pain from the appliances in his mouth from orthodontic work; he simply refused to eat for a week. So maybe that's it.
Whichever, or if it's something else entirely, I'm praying Emma gets better quickly.
Carolyn