The Cornish Family... Chasing God's calling...
Wednesday, June 25, 2008
The gross hand... I mean it, it's gross
Ok, so here are the pictures... I made them so you have to click them to save those of you that hate nasty pic's from having to see them
The morning after the IV was replaced there were tiny blisters covering her palm
http://lh3.ggpht.com/meredithc82/SGJbuh9GVZI/AAAAAAAACoY/1ixr6vT4J4A/s1600-h/019%5B3%5D.jpg
And the bandaid to keep the IV spot from bleeding was placed on top of these blisters- not realizing that they were blisters (it just looked wet the night before)
Then when we started taking the bandaid off it was peeling the skin off of the blisters. NASTY, I tell you! and PAINFUL!
http://lh5.ggpht.com/meredithc82/SGJbwcjtXAI/AAAAAAAACos/N4EdFgOmEno/s1600-h/020%5B3%5D.jpg
The next day all the skin reddened and you could really see the burn that the infiltrated IV left on her skin along with the blistering.
http://lh3.ggpht.com/meredithc82/SGJb3mJqyTI/AAAAAAAACo0/LcyG1GFPRy4/s1600-h/024%5B3%5D.jpg
http://lh5.ggpht.com/meredithc82/SGJb5P0ydZI/AAAAAAAACo8/gLr_-sJOdQw/s1600-h/025%5B3%5D.jpg
Then it started peeling a little and the blisters popped. Have I told you how gross this all was yet?
http://lh4.ggpht.com/meredithc82/SGJb9fMIhzI/AAAAAAAACpM/fK0spdHsuhI/s1600-h/027%5B3%5D.jpg
And today, with the skin really peeling away.. EWWWWWWWWWWWWWWWWW
http://lh6.ggpht.com/meredithc82/SGJb-5Ik1YI/AAAAAAAACpU/X6AsCpU8BtQ/s1600-h/028%5B3%5D.jpg
http://lh3.ggpht.com/meredithc82/SGJb_7Fp7gI/AAAAAAAACpc/KODYYrjBpbk/s1600-h/029%5B3%5D.jpg
Some pictures from the weekend
Here are some of the three muskateers playing at the RMH playroom. Kristopher was mostly enthralled with the TV... it was on Sponge Bob and he knows he's not allowed to watch it so that made it even more interesting...
And this is how Emma has stayed entertained. Madagascar, The Bee Movie, and Sky High have been the shows of choice so far, but I have one or two others I've been holing up for today and tomorrow still. Pretty much the only time she wants to be on my lap is if the computer has a movie going. She's pretty much done with being here too!! Drink girly and we can go HOME!!
My little beautiful girl. She still has a ring on her face from that dumb oxygen sticker. That was 3 days ago!
No sleep.
Room mate retched from 3-5:30am. Emma didn't sleep, Mommy didn't sleep (in fact I left the room so that I didn't join her... EWWWWWWWW), and no one is a happy camper. We're still here. Discussed going home to see if she'd eat at home but since she's taking NOTHING, we'd end up with a denydrated kiddo by tomorrow morning and would be running back to the hospital (any hospital at that point, but we won't bring Emma to our local hospital due to her heart so it would still at least be an hour-3 drive to get her somewhere). So, here we sit.
HAPPY BIRTHDAY MICHAEL! I love you and I'm sorry we can't all be together for your birthday. Maybe Emma's gift to you will be some drinking on her own and we can come home soon. I hope you have a good day today and find something special to do for your birthday!
Emma's fluids were turned off again to see if we can get her thirsty. Last time they stayed off for 7 hrs to no avail... Hoping for better results this time!
HAPPY BIRTHDAY MICHAEL! I love you and I'm sorry we can't all be together for your birthday. Maybe Emma's gift to you will be some drinking on her own and we can come home soon. I hope you have a good day today and find something special to do for your birthday!
Emma's fluids were turned off again to see if we can get her thirsty. Last time they stayed off for 7 hrs to no avail... Hoping for better results this time!
Tuesday, June 24, 2008
A day in hospital life.
Thanks for the encouraging comments. As to those that asked about a private room, there aren't any on this floor. All rooms have 2 beds but for about 15 hours we did have one to ourselves! I hear our roommate is going home, and then she was in pain again, so now I don't know. I hope she is able to- both for her sake and ours :) By the way, I was concerned that she might have something that could be contracted, and if she did start throwing up I planned to talk with the nurse about my fear for Emma to catch anything since they didn't know what was going on with her. Well, she has e.coli in the form of a UTI. So that is good to know that it's not something Emma (or I) might get. I hope for her sake AND ours that she is able to go home today! (I'd like to sleep tonight :) ).
Emma had her echo this morning (for those not in the heart-world, this is an ultrasound of the heart). They bring the machine right into the room and do it bedside. They sedated her with oral meds before it and she laid really still although she didn't go to sleep. She tried to grab at the tech a few times but was really good overall. The tech started to shut down and then decided to turn the machine back on and get a few more measurements so that they could estimate the size patches that Dr. Q will need to do her heart repair. I asked. WoW! One opening is a little over 9mm and the other is just over 11mm! That's about 1cm each! That's huge compared to the size of her heart. I wish I knew what Brianna's patches were. I've always thought that Emma's must not be as large as Brianna's were because she is doing so well, but that just seems so big to me that I don't know. Granted Brianna had an additional ASD and VSD so maybe that's part of it. Emma has a PFO and a PDA still, but those are both "small" and "tiny"- yes, those are the charted "medical definitions!"
After the echo Emma and I sat for a bit together then I laid her down and we gave her some benadryl. Her rash has filled in more on her chest (almost a solid covering not as splotchy) and also has moved around to one side- on her side under her arm and up her back on her shoulder blade. She went to sleep after that and slept through having the holter monitor put on. The tech said she was told Emma was 5 so she brought big leads. Um, well, she IS five... She made it work. For those, again, not in the heart world, a holter monitor is about the size of an electronic planner and has about 5 or 6 wires coming out of it. Those are a few feet long and have little ends on them with sticky patches to stick on to the person's chest. These are the same as leads that are used to monitor a person while at the hospital or an EKG. Those leads are stuck onto Emma's chest. She'll wear them for 24 hours (actually, it'll be about 22 so the doctor can read it before lunch) and the little box records every beat of the heart in that time. It will record her waking hours and her sleeping hours. It is a much more accurate read than just the heart rate which is from one single little probe on her toe. That's all we've had to go by so far.
So... tomorrow the doctor will get the little box back and will look over what it shows. He'll decide whether there's anything going on that's unusual (well, outside of the fact that she's got this huge unrepaired heart defect...) and he'll see if anything needs to be done after seeing that. Brianna had this when she was here after her open heart because she was having episodes of tachycardia- fast heartrate (170/180). It was just a fluke and she was fine. They looked over the monitor and didn't find anything disconcerning. We hope that they'll see what they would expect to see with her condition (or... maybe... just a little bit BETTER??) and things will continue as planned.
After a morning of pokes, prods, sedation, and, well, benadryl (gee, we could have saved the sedation if we'd just given the benadryl earlier!), Emma is now sleeping well and has slept through the past 2 "official people" to enter the room and prod her. I also ran down to Walgreens and to the cafeteria for food.
Walgreens-- they must have been informed that we're on the naughty list and that they should mess with us a bit too? That's about how I feel right now anyway. On Friday Mike put in the prescription and they told him it would take a day to fill, so we could pick it up after 3 the next day. We forgot. That's ok though, because when Mike got home on Sun night there was a message on our machine that said "I'm sorry, we're not open tomorrow, so your order won't be able to be picked up on Saturday. We are closed for the weekend." Um... ok... weird. While waiting for the cardiologist yesterday I wasn't able to leave and go pick up the prescription, so today I walked down to get it. It's not there. It's not in the bin AND it's not in the computer. I explained that my husband had brought it in on Friday and since they weren't open for the weekend I came to get it now. Oh... it's YOU! I love being "It's You".
They had stored her prescriptions instead of filling them. WHY you ask? That doesn't really make any sense. Well, they saw that they were from the hospital and thought maybe I'd want to have them filled elsewhere so they didn't fill them. So they weren't ready. So I left my kid and walked 3 blocks for nothing. They finally decided to go ahead and fill it now (weird that that took a discussion, I know). It would be ready in 20 minutes. I said I'd be back later-or tomorrow, but I'd be picking it up. Don't store it in the computer, I want it before I leave for home! I guess I'll need another walk before 5 or tomorrow.
Now I think I'll take a nap, which probably means that Emma's about to wake up. That seems to be the way it works, doesn't it?
Sorry not such a wonderfully postive post. I'm tired. It has been a good day overall and Emma is feeling ok even though she hasn't eaten still.
Emma had her echo this morning (for those not in the heart-world, this is an ultrasound of the heart). They bring the machine right into the room and do it bedside. They sedated her with oral meds before it and she laid really still although she didn't go to sleep. She tried to grab at the tech a few times but was really good overall. The tech started to shut down and then decided to turn the machine back on and get a few more measurements so that they could estimate the size patches that Dr. Q will need to do her heart repair. I asked. WoW! One opening is a little over 9mm and the other is just over 11mm! That's about 1cm each! That's huge compared to the size of her heart. I wish I knew what Brianna's patches were. I've always thought that Emma's must not be as large as Brianna's were because she is doing so well, but that just seems so big to me that I don't know. Granted Brianna had an additional ASD and VSD so maybe that's part of it. Emma has a PFO and a PDA still, but those are both "small" and "tiny"- yes, those are the charted "medical definitions!"
After the echo Emma and I sat for a bit together then I laid her down and we gave her some benadryl. Her rash has filled in more on her chest (almost a solid covering not as splotchy) and also has moved around to one side- on her side under her arm and up her back on her shoulder blade. She went to sleep after that and slept through having the holter monitor put on. The tech said she was told Emma was 5 so she brought big leads. Um, well, she IS five... She made it work. For those, again, not in the heart world, a holter monitor is about the size of an electronic planner and has about 5 or 6 wires coming out of it. Those are a few feet long and have little ends on them with sticky patches to stick on to the person's chest. These are the same as leads that are used to monitor a person while at the hospital or an EKG. Those leads are stuck onto Emma's chest. She'll wear them for 24 hours (actually, it'll be about 22 so the doctor can read it before lunch) and the little box records every beat of the heart in that time. It will record her waking hours and her sleeping hours. It is a much more accurate read than just the heart rate which is from one single little probe on her toe. That's all we've had to go by so far.
So... tomorrow the doctor will get the little box back and will look over what it shows. He'll decide whether there's anything going on that's unusual (well, outside of the fact that she's got this huge unrepaired heart defect...) and he'll see if anything needs to be done after seeing that. Brianna had this when she was here after her open heart because she was having episodes of tachycardia- fast heartrate (170/180). It was just a fluke and she was fine. They looked over the monitor and didn't find anything disconcerning. We hope that they'll see what they would expect to see with her condition (or... maybe... just a little bit BETTER??) and things will continue as planned.
After a morning of pokes, prods, sedation, and, well, benadryl (gee, we could have saved the sedation if we'd just given the benadryl earlier!), Emma is now sleeping well and has slept through the past 2 "official people" to enter the room and prod her. I also ran down to Walgreens and to the cafeteria for food.
Walgreens-- they must have been informed that we're on the naughty list and that they should mess with us a bit too? That's about how I feel right now anyway. On Friday Mike put in the prescription and they told him it would take a day to fill, so we could pick it up after 3 the next day. We forgot. That's ok though, because when Mike got home on Sun night there was a message on our machine that said "I'm sorry, we're not open tomorrow, so your order won't be able to be picked up on Saturday. We are closed for the weekend." Um... ok... weird. While waiting for the cardiologist yesterday I wasn't able to leave and go pick up the prescription, so today I walked down to get it. It's not there. It's not in the bin AND it's not in the computer. I explained that my husband had brought it in on Friday and since they weren't open for the weekend I came to get it now. Oh... it's YOU! I love being "It's You".
They had stored her prescriptions instead of filling them. WHY you ask? That doesn't really make any sense. Well, they saw that they were from the hospital and thought maybe I'd want to have them filled elsewhere so they didn't fill them. So they weren't ready. So I left my kid and walked 3 blocks for nothing. They finally decided to go ahead and fill it now (weird that that took a discussion, I know). It would be ready in 20 minutes. I said I'd be back later-or tomorrow, but I'd be picking it up. Don't store it in the computer, I want it before I leave for home! I guess I'll need another walk before 5 or tomorrow.
Now I think I'll take a nap, which probably means that Emma's about to wake up. That seems to be the way it works, doesn't it?
Sorry not such a wonderfully postive post. I'm tired. It has been a good day overall and Emma is feeling ok even though she hasn't eaten still.
The "FUN" part of hospital stays
Last night I got a shower and clean clothes- quite a step up in life. I got a Starbucks drink (strawberry cream frapp) and Emma was asleep by 9:30. The night was going great! Until about 10 'til 1. That's when the nurses started coming in and turned on the lights on the other side of the room (separated by a curtain with mesh at the top so the lights aren't even dimmed on this side of the room). They were prepping it for a new patient. A baby, so they removed the big bed. They had to move E's crib to get it out, thus waking her up. I finally got her to go back to sleep about 20 minutes later. At 1:30 they brought in the crib, the lights were left on this whole time (on that side of the room- as if that matters...). Then around 1:45 they took the crib BACK OUT and brought a regular bed back in!
About 2:30 they brought in towels, blankets and a basin. 3am they brought in a young lady and her dad and the 'quick orientation' to the room and hospital and her vitals. 3:30 a resident came in to talk to her. 4:30 a physician came in. And in any space between doctors they both fell asleep (thankfully Emma slept through most of this) and the dad SNORED LIKE CRAZY. I swear, they should have been able to hear him through the door at the nurse's station!
They did finally turn the light off around 5am and I do think I went to sleep despite the snoring (well, sortof). Then at 5:45 the lab tech came to draw blood from Emma. It was also time for her pain meds (she's been going all night without since she sleeps through the night but I wanted her to have them before shift change). I asked the lab tech to take us to the treatment room for the blood draw since I knew Emma was going to cry- for a while- and I knew our roommates probably got even less sleep than I did. Plus, Emma would have a chance to calm back down on our walk back so that would be good.
So off we went, did the blood draw, got meds, a clean diaper, and Emma went back to sleep on my chest (aww... she doesn't EVER sleep on me!). Eventually I laid her down and she fell back asleep in her crib. The nurse came in around 7:30 to listen to her and she went right back to sleep DURING the exam. This kid is tired!
She is NPO (not that she wants to eat anyway...) after 6am for her sedated echo at 10ish. So we're just hanging out and waiting. I expect that the ENT will be around sometime this morning and we'll hear whether they've given up on her eating at the hospital or whether they want to keep us here for etermity. I know, I know, she'll eat sometime and we'll go home!
Anyway, our eventful night was not due to Emma, but somehow it's easier to be awake all night when it's your kid then when it's nurses and doctors causing all the fuss!! They really weren't doing anything out of the ordinary and some were very quiet about themselves, but reality is that I wanted to sleep and didn't so now I'm crabby :)
Kristopher, Brianna, and Micah are going to the church this morning. The KAD program that K and Bria attended during the school year is extended through the summer and although we didn't intend for them to be a part, our nursery director has graciously extended it to us and we're very thankful!
About 2:30 they brought in towels, blankets and a basin. 3am they brought in a young lady and her dad and the 'quick orientation' to the room and hospital and her vitals. 3:30 a resident came in to talk to her. 4:30 a physician came in. And in any space between doctors they both fell asleep (thankfully Emma slept through most of this) and the dad SNORED LIKE CRAZY. I swear, they should have been able to hear him through the door at the nurse's station!
They did finally turn the light off around 5am and I do think I went to sleep despite the snoring (well, sortof). Then at 5:45 the lab tech came to draw blood from Emma. It was also time for her pain meds (she's been going all night without since she sleeps through the night but I wanted her to have them before shift change). I asked the lab tech to take us to the treatment room for the blood draw since I knew Emma was going to cry- for a while- and I knew our roommates probably got even less sleep than I did. Plus, Emma would have a chance to calm back down on our walk back so that would be good.
So off we went, did the blood draw, got meds, a clean diaper, and Emma went back to sleep on my chest (aww... she doesn't EVER sleep on me!). Eventually I laid her down and she fell back asleep in her crib. The nurse came in around 7:30 to listen to her and she went right back to sleep DURING the exam. This kid is tired!
She is NPO (not that she wants to eat anyway...) after 6am for her sedated echo at 10ish. So we're just hanging out and waiting. I expect that the ENT will be around sometime this morning and we'll hear whether they've given up on her eating at the hospital or whether they want to keep us here for etermity. I know, I know, she'll eat sometime and we'll go home!
Anyway, our eventful night was not due to Emma, but somehow it's easier to be awake all night when it's your kid then when it's nurses and doctors causing all the fuss!! They really weren't doing anything out of the ordinary and some were very quiet about themselves, but reality is that I wanted to sleep and didn't so now I'm crabby :)
Kristopher, Brianna, and Micah are going to the church this morning. The KAD program that K and Bria attended during the school year is extended through the summer and although we didn't intend for them to be a part, our nursery director has graciously extended it to us and we're very thankful!
Monday, June 23, 2008
Cardiology Update
Dr. D came in at 6pm! Wow, I spent the ENTIRE day waiting for that consult! Which means that I didn't move the car, go to the post office, OR get any Starbucks! Ah... there's still time for Starbucks...
Dr. D was filled in on her history, knows she has PH and an AV Canal. He knows about her HR levels dropping and de-SATing during the night. He drew a diagram on the board to show what the heart looks like with and without the AV canal and after the AV canal surgery. He showed the PH in the lungs and described how and why that has developed, and the possibility of it reversing (!!!) after her heart is fixed. He talked about the "pop-out" that will be left open to allow the heart to function under the higher pressures even with the corrected anatomy and also discussed having the pop-out closed at a later date in the cath lab :)
Dr. D described the possibilities post-op if all goes well with the surgery. Those include using oral medications to lower the PH as well as the possibility of oxygen. Possibly even a combination of all 3 (2 oral meds+O2). After all that we discussed right now. At the moment they're looking for an earlier surgery date for us (YAY!) but he did say that a difference of a few weeks is NOT going to be a big deal for Emma since any damage she has has set in. She is not going to have any dramatic increase in risk within a few weeks. He does understand that our first surgery date was early April and it has been over 2 months already and will have been 4 months by the time our current surgery date comes around.
Dr. D also ordered a medication-sedated (oral meds, not a big deal) echo tomorrow morning so they can get a decent assessment of the pulmonary pressures and function. She also will be fitted with a Holter Monitor for 24 hours starting tomorrow morning. She CAN be sent home even with the monitor and we can mail it back if ENT wants to discharge. It doesn't seem we'll be going anywhere though, but cardio isn't going to keep us here, so that's kindof good.
Oxygen was ordered if her sats aren't staying in the 90ish range on their own overnight. If she is requiring oxygen tonight then he will set us up with a portable tank to bring home and she'll be on oxygen at night until her surgery. We won't monitor at home- he said that if she needs it here, she'll need it at home and we'll use it as a preventative measure as it will only help and not hurt so there's no harm. We'll see what happens tonight.
Overall it's a lot of "wait and see"... wait and see what tonight brings with oxygen, what tomorrow morning brings with the echo, what the next few days bring with a surgery date, and what happens with the surgery for post-op care. For now we'll just take it one more day at a time :) :)
Dr. D was filled in on her history, knows she has PH and an AV Canal. He knows about her HR levels dropping and de-SATing during the night. He drew a diagram on the board to show what the heart looks like with and without the AV canal and after the AV canal surgery. He showed the PH in the lungs and described how and why that has developed, and the possibility of it reversing (!!!) after her heart is fixed. He talked about the "pop-out" that will be left open to allow the heart to function under the higher pressures even with the corrected anatomy and also discussed having the pop-out closed at a later date in the cath lab :)
Dr. D described the possibilities post-op if all goes well with the surgery. Those include using oral medications to lower the PH as well as the possibility of oxygen. Possibly even a combination of all 3 (2 oral meds+O2). After all that we discussed right now. At the moment they're looking for an earlier surgery date for us (YAY!) but he did say that a difference of a few weeks is NOT going to be a big deal for Emma since any damage she has has set in. She is not going to have any dramatic increase in risk within a few weeks. He does understand that our first surgery date was early April and it has been over 2 months already and will have been 4 months by the time our current surgery date comes around.
Dr. D also ordered a medication-sedated (oral meds, not a big deal) echo tomorrow morning so they can get a decent assessment of the pulmonary pressures and function. She also will be fitted with a Holter Monitor for 24 hours starting tomorrow morning. She CAN be sent home even with the monitor and we can mail it back if ENT wants to discharge. It doesn't seem we'll be going anywhere though, but cardio isn't going to keep us here, so that's kindof good.
Oxygen was ordered if her sats aren't staying in the 90ish range on their own overnight. If she is requiring oxygen tonight then he will set us up with a portable tank to bring home and she'll be on oxygen at night until her surgery. We won't monitor at home- he said that if she needs it here, she'll need it at home and we'll use it as a preventative measure as it will only help and not hurt so there's no harm. We'll see what happens tonight.
Overall it's a lot of "wait and see"... wait and see what tonight brings with oxygen, what tomorrow morning brings with the echo, what the next few days bring with a surgery date, and what happens with the surgery for post-op care. For now we'll just take it one more day at a time :) :)
Denis' parents are in Ukraine!
Ok, I've mentioned Denis a few times now, and he holds a special part of my heart because he was one of Emma's roommates in Ukraine. They are the ones bringing pictures of my kids and delivering a letter that describes how our kids were doing. Well, they have landed in Ukraine and their SDA appointment is tomorrow! You can follow their blog HERE. Please pray for this wonderful family as they bring home #13, sweet little Denis!
I can't wait to see new pictures of little Denis with his new family!
A rash
As if she didn't have enough going with her throat & ears from surgery, her heart acting up, and her hand having nasty blisters, now Emma has a shash that covers the entire area on her chest where hr ribcage is. It stops right at the bottom of her rib cage though- it's not on her stomach.
The nurse called the ENT and they've ordered for her current antibiotic to be stopped and for her to start on Amoxicillian (sp?). She already had the antibiotic today so that'll probably start tomorrow.
Still no cardiologist. I'm waiting for them to come so that I can go to the RMH and get the car, go to the post office to send Mike the car key to the van, pick up the prescription that Mike put in for us on Fri then we forgot to pick up, then I need to park the car in visitor parking instead of at the RMH. And maybe visit Starbucks on my way through :) But... only after the cardiologist comes!
Oh yeah, and the nurse offerred Benadryl for the rash but we're going to wait a bit and see if it goes away on its own or if it seems to get worse or itchy. If it gets worse we'll treat, otherwise we'll just leave it be.
The nurse called the ENT and they've ordered for her current antibiotic to be stopped and for her to start on Amoxicillian (sp?). She already had the antibiotic today so that'll probably start tomorrow.
Still no cardiologist. I'm waiting for them to come so that I can go to the RMH and get the car, go to the post office to send Mike the car key to the van, pick up the prescription that Mike put in for us on Fri then we forgot to pick up, then I need to park the car in visitor parking instead of at the RMH. And maybe visit Starbucks on my way through :) But... only after the cardiologist comes!
Oh yeah, and the nurse offerred Benadryl for the rash but we're going to wait a bit and see if it goes away on its own or if it seems to get worse or itchy. If it gets worse we'll treat, otherwise we'll just leave it be.
Q&A
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!
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!
One more time...
ENT was in this morning and we're here for a while still. He mentioned that in a few days if she is still not eating possibly discharging her to see if the change in scenery and being back HOME would be the kick she needs to eat. I told him just a 2 second history (malnourished and hunger doesn't bother her, major heart defect, and we live across the state) and he said he doubts we'll go that route but it's an option "down the road".
Emma's HR started dropping as soon as she fell asleep last night. I don't know whether it was staying in the 50's or not... because the answer to having her alarm all night is aparently turning the alarm setting down to 49 instead of 55 (started at 59 a few nights ago- that's the normal "adult" setting). They also put her on oxygen again and her SATs went up to the mid-upper 90's from the low 90's. It also seemed to keep her HR in the mid-60's range which is better than low 50's! The night nurse suggested we might be going home with night time oxygen, depending on what cardiology says this morning. So... she only went off a few times and other than the nurse and tech coming in a few times we both had an ok night sleep. Considering.
One more day of sitting. Maybe she will decide to EAT soon though and we'll get to find our way home. She screams and thrashes at the sight of the bottle. She get upset when I'm eating if she's sitting with me (maybe she thinks I'm going to try to sneak her something??). The ENT did say that he's not got any reason to keep her here from a health-standpoint, but as long as she's not eating she needs to stay. And of course he said whatever cardiology wants to do in that realm is fine as far as keeping her longer. But, since she's not eating, she's still here for a time.
Mike, Mom, and the kids made it home without any mishaps yesterday. Unfortunately, last night he called me pretty late (I was asleep, but I think it was around 11:15?) and said that his key to our van (remember we borrowed my mom's van for the trip) was in HIS car... which is here in St. Pete for me. He looked around and found a spare and was relieved. Until this morning. I guess technology wasn't high on his list today because the key has a chip in it and the spare doesn't start the engine. So he has no car.
Luckily, they didn't move the carseats out of my mom's van and she is on her way over now to bring Mike her van. Kristopher's going to a friend's house this morning, Micah to my mom, and Mike's mom is watching Brianna at our house. At lunch time Mike's going to bring Kristopher home and he'll stay with grandma the rest of the day. Mike has school tonight so it'll be a long day for him and the kids too.
THANKS MOM AND MIKE! I hate not being there to help but I know Mike can take care of things. THANK YOU to GRANDMA and KERRY also for helping out with the kids today!
Emma's HR started dropping as soon as she fell asleep last night. I don't know whether it was staying in the 50's or not... because the answer to having her alarm all night is aparently turning the alarm setting down to 49 instead of 55 (started at 59 a few nights ago- that's the normal "adult" setting). They also put her on oxygen again and her SATs went up to the mid-upper 90's from the low 90's. It also seemed to keep her HR in the mid-60's range which is better than low 50's! The night nurse suggested we might be going home with night time oxygen, depending on what cardiology says this morning. So... she only went off a few times and other than the nurse and tech coming in a few times we both had an ok night sleep. Considering.
One more day of sitting. Maybe she will decide to EAT soon though and we'll get to find our way home. She screams and thrashes at the sight of the bottle. She get upset when I'm eating if she's sitting with me (maybe she thinks I'm going to try to sneak her something??). The ENT did say that he's not got any reason to keep her here from a health-standpoint, but as long as she's not eating she needs to stay. And of course he said whatever cardiology wants to do in that realm is fine as far as keeping her longer. But, since she's not eating, she's still here for a time.
Mike, Mom, and the kids made it home without any mishaps yesterday. Unfortunately, last night he called me pretty late (I was asleep, but I think it was around 11:15?) and said that his key to our van (remember we borrowed my mom's van for the trip) was in HIS car... which is here in St. Pete for me. He looked around and found a spare and was relieved. Until this morning. I guess technology wasn't high on his list today because the key has a chip in it and the spare doesn't start the engine. So he has no car.
Luckily, they didn't move the carseats out of my mom's van and she is on her way over now to bring Mike her van. Kristopher's going to a friend's house this morning, Micah to my mom, and Mike's mom is watching Brianna at our house. At lunch time Mike's going to bring Kristopher home and he'll stay with grandma the rest of the day. Mike has school tonight so it'll be a long day for him and the kids too.
THANKS MOM AND MIKE! I hate not being there to help but I know Mike can take care of things. THANK YOU to GRANDMA and KERRY also for helping out with the kids today!
Sunday, June 22, 2008
Hypoplastic Left (or right) Heart
I thought this was a rare thing? I have met no less than FIVE parents of children with this condition in the past 4 days. And now another that is in Orlando. 6. SIX little ones with this. What's up with that??
A game of tag
Alyssa tagged me for this little game. Six things you want to know about me. I have a hard time with that because I'm not sure about ANY thing you want to know about me! LOL Don't you know it all already?? Ok, so if this is your first time reading anything here, here's what you might want to know about me... Anything new?
1. My first love in life is Christ and sharing about His works in my life.
2. My husband is my best friend and he's the most wonderful husband/ father/ man in the world.
3. I have four beautiful children who I am honored to parent.
4. I spend a lot of my "free time" (ie: nap and meal times for the kids) raising awareness for orphans with disabilities, Down syndrome, and researching whatever the latest medical issue is in our home. Yes, I do clean the dishes, do the laundry, and cook dinner :) (um... sometimes...)
5. I began to live off of caffeine from Coca~cola products while in Ukraine and have continued since coming home. Who needs sleep anyway?
6. I love to read Christian women's novels and always have one in-progress. Right now I've started two- one is the last of 3 novels in one volume so I left it at home. It is Sanctuary by Beverly Lewis. The second I brought with me to the hospital so I wouldn't have to haul the 3 volumes. It's called Bittersweet by Cathy Marie Hake. I'm in the first few chapters of both but I pretty much like everything I read :)
1. My first love in life is Christ and sharing about His works in my life.
2. My husband is my best friend and he's the most wonderful husband/ father/ man in the world.
3. I have four beautiful children who I am honored to parent.
4. I spend a lot of my "free time" (ie: nap and meal times for the kids) raising awareness for orphans with disabilities, Down syndrome, and researching whatever the latest medical issue is in our home. Yes, I do clean the dishes, do the laundry, and cook dinner :) (um... sometimes...)
5. I began to live off of caffeine from Coca~cola products while in Ukraine and have continued since coming home. Who needs sleep anyway?
6. I love to read Christian women's novels and always have one in-progress. Right now I've started two- one is the last of 3 novels in one volume so I left it at home. It is Sanctuary by Beverly Lewis. The second I brought with me to the hospital so I wouldn't have to haul the 3 volumes. It's called Bittersweet by Cathy Marie Hake. I'm in the first few chapters of both but I pretty much like everything I read :)
Saw the ENT NP (and gross... sorry)
She's on for another night, or two... We'll have a consult with cardiology tomorrow about her HR dropping. She also has about 6 BAD blisters with puss in them (sorry, but if that was tmi then stop reading here...) from where her first IV was wrapped. We didn't know it would blister- just looked wet when it was undressed, so the bandaid to keep the IV from bleeding was put over top of that area. Well, I went to take the bandaid off and it started wripping the skin off with it and the pussy blisters were popping. Finally we soaked her hand and together Mike and I were able to get the bandaid off without too much damage to the skin. She now has an antibiotic ointment prescribed and has BOTH hands wrapped- one with an IV one with an infection :(
Mom arrived and I went back over to the RMH and got a shower, lunch with Mom and the kids, then I cleaned the room, finished packing, and Mom started packing the car. I walked the kids back up here to say goodbye to Emma and now Mike, Mom, and the kids are on their way home. Mom brought me our car so I can go home whenever Emma's released. For now the other kids will spend the day with grandparents and the evenings and nights with Daddy until we come home. Although I hate to have us split up like this, Emma needs someone 24 hrs a day right now so there's no reason to have the other kids away from home now that Mike needs to get back to work. I am VERY glad we've had them here this first 5 days though, it's been good for them to see where Emma is, for them to have Mike and I both and my mom as well, and for Emma to also have a bit of Daddy and a bit of Mommy these first days.
So... I'm on my own for a few with Miss E. and will get to experience the joy of "Parent showers" at the hospital and cafeteria food from downstairs. I guess living in Ukraine was preparing me :) :)
Mom arrived and I went back over to the RMH and got a shower, lunch with Mom and the kids, then I cleaned the room, finished packing, and Mom started packing the car. I walked the kids back up here to say goodbye to Emma and now Mike, Mom, and the kids are on their way home. Mom brought me our car so I can go home whenever Emma's released. For now the other kids will spend the day with grandparents and the evenings and nights with Daddy until we come home. Although I hate to have us split up like this, Emma needs someone 24 hrs a day right now so there's no reason to have the other kids away from home now that Mike needs to get back to work. I am VERY glad we've had them here this first 5 days though, it's been good for them to see where Emma is, for them to have Mike and I both and my mom as well, and for Emma to also have a bit of Daddy and a bit of Mommy these first days.
So... I'm on my own for a few with Miss E. and will get to experience the joy of "Parent showers" at the hospital and cafeteria food from downstairs. I guess living in Ukraine was preparing me :) :)
Quick update
My mom's on her way here from T'ville. She's bringing me the car and riding back with Mike +3. Emma and I are likely camping out here another day or two. She's still not drinking and her HR was dropping all night again. Normal for her is 95-115. Her HR was sitting down in the low 50's for a few min at a time every hour and otherwise sticking to 70-90's which isn't too bad since she was asleep. 50, tho is very low. The ENT Nurse Practitioner should be in soon.
Saturday, June 21, 2008
Our sweet little room mate and other stories from St. Pete
I just overheard our sweet little room mate's goodnight words to her mother. "Mommy, I love you. I want to go home tomorrow. I feel sorry for Emma though. I hope she gets to go home soon like me. She's been here longer already." The little girl is around 7? and had a T&A last Friday. She ended up in the ER vomiting blood yesterday (um... ew....) and was transferred here and admitted in the early hours of the morning today (Saturday). She's very sweet and even apologized to the food service people for ordering so many slushies (one of her few choices) because she didn't want them to have to keep coming to her when there's so many other kids.
There's been so many different reactions to my kids this trip. It's actually been quite amusing to see because my kids just aren't out in public "social" settings that often yet. Yes, we go to the mall, the park, conferences, etc. but those aren't places where people openly ask your story. The hospital and RMH surely are though.
Before we even got to the RMH on Wednesday we went to a park to kill time while our room was readied. While there these three little boys came walking along the lake. The oldest of the three was wearing blue jeans that were about 3 sizes too big. They were the type with elastic buttons in the waist and they were cinched up a LOT. He had them buttoned but not zipped and they were hanging below his hips, which made it obvious that that was all he was wearing. He was soaked from the knee down from walking in the water and wore black tennis shoes that had seen better years and were also sopping wet. It was about 90 degrees out so I think I'd have been in the water if I was out in long jeans too!
The other two boys were both barefoot and wearing jean shorts. Neither fit them particularly well either. They came up and asked us what we were doing, we told them just playing and they stopped for just a minute to see what it was (K had out little figures of Bible characters then) and they kept walking. A bit later they returned and K and I and Bria and I were throwing balls back and forth (we don't let K and Bria play this together yet, K has good aim and Bria's not so happy about being a target!). The boys came over and were very kind about Brianna wanting to play and we all tossed the ball around.
It started to thunder so we packed up and as I went to get the double stroller the oldest boy walked over to the babies and started LAUGHING. I mean grab-your-gut-point-and-guffaw LAUGH. Hmm... this could get interesting. Did I mention that he's probably only about 10 and the other boys around 7 or 8 maybe? So then he calls the other boys over, not saying why, but just "c ome look guys" and laughing. So... WHAT DO YOU SAY?????
I tried not to make a huge deal out of it- these are kids- and we started walking to the car. Finally, out it came "your girl, it's not funny, I know, she just reminds me of someone. Doesn't she remind you of Mrs.???" (he said this to one of the boys). "She (Emma) looks just like her." There's my break! "Does Mrs. ??? have Down syndrome?" I asked them. Well, yeah. All three of my little ones have Down syndrome. We just adopted Emma and Micah all the way from Ukraine on the other side of the world. They're pretty special to us." With this, they boys started to take their leave as we loaded the car. "Goodbye sweethearts, bye cuties!" they called as they walked away. Mockingly? I don't know. I'd like to think it wasn't but I really have no idea. That's got to be the most unusual reaction I've had to my kiddos so far!!!!!
Ok, well, that's all for now because I'm finally tired. More stories to come :)
There's been so many different reactions to my kids this trip. It's actually been quite amusing to see because my kids just aren't out in public "social" settings that often yet. Yes, we go to the mall, the park, conferences, etc. but those aren't places where people openly ask your story. The hospital and RMH surely are though.
Before we even got to the RMH on Wednesday we went to a park to kill time while our room was readied. While there these three little boys came walking along the lake. The oldest of the three was wearing blue jeans that were about 3 sizes too big. They were the type with elastic buttons in the waist and they were cinched up a LOT. He had them buttoned but not zipped and they were hanging below his hips, which made it obvious that that was all he was wearing. He was soaked from the knee down from walking in the water and wore black tennis shoes that had seen better years and were also sopping wet. It was about 90 degrees out so I think I'd have been in the water if I was out in long jeans too!
The other two boys were both barefoot and wearing jean shorts. Neither fit them particularly well either. They came up and asked us what we were doing, we told them just playing and they stopped for just a minute to see what it was (K had out little figures of Bible characters then) and they kept walking. A bit later they returned and K and I and Bria and I were throwing balls back and forth (we don't let K and Bria play this together yet, K has good aim and Bria's not so happy about being a target!). The boys came over and were very kind about Brianna wanting to play and we all tossed the ball around.
It started to thunder so we packed up and as I went to get the double stroller the oldest boy walked over to the babies and started LAUGHING. I mean grab-your-gut-point-and-guffaw LAUGH. Hmm... this could get interesting. Did I mention that he's probably only about 10 and the other boys around 7 or 8 maybe? So then he calls the other boys over, not saying why, but just "c ome look guys" and laughing. So... WHAT DO YOU SAY?????
I tried not to make a huge deal out of it- these are kids- and we started walking to the car. Finally, out it came "your girl, it's not funny, I know, she just reminds me of someone. Doesn't she remind you of Mrs.???" (he said this to one of the boys). "She (Emma) looks just like her." There's my break! "Does Mrs. ??? have Down syndrome?" I asked them. Well, yeah. All three of my little ones have Down syndrome. We just adopted Emma and Micah all the way from Ukraine on the other side of the world. They're pretty special to us." With this, they boys started to take their leave as we loaded the car. "Goodbye sweethearts, bye cuties!" they called as they walked away. Mockingly? I don't know. I'd like to think it wasn't but I really have no idea. That's got to be the most unusual reaction I've had to my kiddos so far!!!!!
Ok, well, that's all for now because I'm finally tired. More stories to come :)
God delivered the mail today
On Wednesday I mailed Mom mailed a package to the Reed family (from me). It included a letter and photos of our kiddos. The letter was the one loosely translated into Ukrainian that I'd posted here. And, um, a LOT of photos... So it was mailed on Wednesday and went to the address that I got from a third party because I couldn't find the e-mail she'd sent me that had her address on it. Well, after I asked if she got the package she replied that no, she hadn't gotten it, had I sent it to XXX (city)? No... I hadn't. She just moved. So there's no way that she was going to get it in time. She should have gotten it the day before she left but forwarding takes a few days. Instead I e-mailed the letter and 4 pictures to her and she offered to print that and take it with her. She is so sweet! So I mailed that on and she took the time out of her busy packing schedule (did I mention she has 12 kids? SERIOUSLY) and did that for me. Well, God must have delivered the mail today! She got my package!! All 35 (or so) pictures are going to go to the orphanage director and caregivers that raised Emma and Micah until they came home with us! So many changes are evident in those pictures such as Micah in 4 point, Emma and Micah sitting, E and M each with HUGE smiles on their faces, the kids in the pool, on a blanket in the sunny grass, and in swings smiling happily! YAY!!!
Seems like such a little thing- a package in the mail- and yet God came through. He must have pulled it to the top of the pile, I have no explanation of how it could have been forwarded even and made it to her before she left! THANK YOU GOD!!!!
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 :)
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 :)
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