Daughters Open Heart Surgery 2/24/15

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  • baldguy637

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    Apr 28, 2009
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    Montgomery County
    Update 4/29/15

    Great news, as of now Kyndale is 100% released from all doctors. The only stipulation is that she needs to wear a chest protector while playing softball (which she already had). She's still doing great, and got to play in her first softball game of the year this past weekend. I wasn't able to go to it due to working so much, but mom took some pictures and had Kyndale call me after each game. She's been elated about being able to do cartwheels, ride her bike, ect.....

    Sorry I haven't been on much to update, times are still crazy. The oldest daughter graduates next month, so we've been getting everything ready for the open house, graduation and doing the whole financial aid thing with college. She also goes to see the surgeon next Tuesday about getting her acl repaired (tore it in volleyball and wanted to wait till after softball).

    I've made a few calls about trying to find a spot to host the appreciation shoot but haven't got any answers as of yet. I've got a good friend who said we could use his property if needed depending on the insurance situation, but I'd like to find somewhere with a dedicated range and back stops if at all possible. Anyone with any recommendations please feel free to PM me, I'll at least get an email alerting me with that. Now on to some happier pictures.....











    Update 4/5/15

    We made it down with no problems but the week hasn't quite went as planned. Kyndale got car sick on the way and was miserable but she pushed through it. She only got sick once, but that was enough (first time she's ever gotten car sick). She still hadn't been her normal self for the past couple of days and we noticed yesterday she was running a low grade fever (99.5-100.5).

    We started her on some motrin to try to knock the fever but she started saying her left side really hurt. We haven't done too much other than sit around the house but today we had easter service at grandma g's church. She was miserable through the whole service, and after it was over she started crying with her side. Long story short we were at the hospital most of the afternoon. Turns out she has a urinary tract infection, so she was prescribed some antibiotics and was told to stay on the motrin. She passed out a little while ago so I had some time to upload a few pics from the beach yesterday.

    Hopefully she feels better tomorrow.



    Update 4/1/15 3:10pm

    Wife just called and said the surgeon was very pleased. He said the incision looked awesome and the x-rays looked great as well. Kyndale's first question was if she could do cartwheels, gymnastics and softball yet. The doc told her 3 more weeks until she could go back to her normal activities at 100%.

    She wasn't too happy, but the wife said when Kyndale asked that question the doc said "you've already been doing it all haven't you?" She shook her head yes and he just laughed. He said he likes to see 8 weeks recovery before he releases anyone regardless of how well they're doing. So she's still limited, but she listens about as well as her mother so it'll be like she was released today and we'll have to get on her every time she gets caught..

    We'll be headed south tomorrow afternoon so I'll get another update in later this week. Now I got to get back to work, hope everyone has a good day!

    Update 3/30/15 10:00pm

    Let me start with an apology, I've been meaning to post an update but things have been crazy the past few weeks and for that I'm sorry.

    Kyndale is still doing great, she goes back to the surgeon Wednesday to hopefully get released. We may have jumped the gun a little, but we did sign her up for travel softball for the summer. She's been dying to do if for the past few years but with her big sister already doing travel ball it would have been a nightmare. Big sis decided she was done with travel ball so she could have a summer off before she's off to college (IUPUI).

    Kyndale will be playing on the Prospects 8u team out of indy so it should be fun. She's already been doing hitting and pitching lessons with the prospects academy for the past year or so with her sis so she already knows most of the people there. We went Sunday and got her a chest protector, new bat and a face mask so she's all ready to go!

    We had our father daughter dance last week and had a ball, she broke it down while I broke my back lol. We had dinner before the dance and she wanted to share my steak, instead I let her order her own. She had a 8oz fillet with a loaded baked potato and almost finished it all by herself.



    We're going to be headed to Florida Thursday after school for spring break to visit grandma G so she's been bouncing off of the walls. She's a beach bum, so her and mom will be laying out on the beach all week while dad does some fishing off grandmas dock. It should be fun, and I'll post some pictures once we get down there. Hopefully she won't have too many restrictions.

    Once we get back, I'm planning on ironing out a date for the "Appreciation" shoot. I need to get some ideas on where to maybe host it so if anyone has any suggestions I'm all ears. I've never been a member at any shooting range with family land available but with as many people that will be there I'm going to try to get something with ample parking and room. Preferably something in central indiana.

    Again, I apologize for not updating this sooner, but stay tuned. I'll let everyone know how her doctors appointment goes on Wednesday. Thanks again everyone!



    Update 3/15/15 12:00 pm

    Kyndale is still going strong, eating like a horse and has a ton of bottled up energy! The downside to all the energy is that with her doing more, she's been getting a little sore in the evenings. She still has only had a few doses of pain meds (mostly before bed so she'll sleep better) and is off of all other meds. Her incision is about all closed up with the exception of where the drain tube was in her chest, it's still a little crusty but that's to be expected.

    Total tally on the surgery thus far without insurance factored in is running right at $220k, which is actually on the cheaper side of what I'd found on my searches. Mom and I are settling back into work, and now that's she's getting better I'm SO ready for an actual vacation. Going from 2 weeks off straight into 2 weeks of overtime has really wore me down.

    This coming Saturday is Kyndale's father/daughter dance! She's very excited for that, we have had a ball the last few years at it. I think I may take her to get her nails done that morning as well, so she'll be on cloud 9. I'll get some pics uploaded of her all dolled up come the day of the dance.

    Thanks for everything thus far, and I'll give another update later in the week if she doesn't beat me to it.







    Kyndale's blog 3/13/15 4:30pm

    Ya I'm doing well I feel a lot better since my sergry I haven't hert since then and I haven't take any med since last week. And no boys have gave me troble. And I did like 3 cartwheels like I wasn't spot to and i got in trouble for that

    Update 3/11/15 9:30 pm

    Well, with any luck she'll stay asleep. Everything is still going great! She had her first half day of school yesterday, and told me when I picked her up that she wished mom would let her stay the whole day.

    This morning her school had a 2 hour delay due to the fog. I took her to McDonald's like I do every time she has one for breakfast. Just so happens we ate the same meals and sat at the same table as the day before her surgery.



    She went a full day today and was still going strong this evening. Her appetite is back to the point that I feel I'm going to have to buy a second fridge to store it all. She's been a bottomless pit the past few days.

    Her energy is about 200% what it has been as well. I honesty think that she has more energy now than ever before. After school we went to town to make a Wal-Mart stop. We're going to Florida to visit with family on spring break and she needed her annual flip flops, sun glasses, swim suits and 20 pounds of spf 50 sunblock. After Wal-Mart we made a trip for ice cream and came home.

    She was adamant about going outside since she's been holed up for so long. So on went the mud boots and it was time to play fetch with the dogs. We were outside for a solid hour and a half before it was time to get her shower and get ready for bed.



    We had our nightly "snuggle time" on the recliner and she wanted to get on here to say thanks. She's really doing great so gar, it blows my mind how quickly she has bounced back. Her incision is still looking great and is much less tender than it was last week. I keep finding her doing pretty much everything the doctors told her not to do on a routine basis but I try to be a little sympathetic.

    I know she's just doing what kids do, but I keep stressing that even though she feels much better that her body is still healing inside and she needs to take it easy. She's got a calender that she's been counting the days until she goes back to hopefully get released.

    I'm logging some overtime tomorrow, but I'll try to get another update up Friday. I told her we'd go to the park if it isn't raining so we'll hopefully have some more pics. Have a great night everyone.

    Kyndales blog, she wanted to say "hi"

    Hi Kyndale here I'm doing great I hert a little bit but im ok thank you guys for everything and I probly come to some of the soots because I love sooting and I now that you are really good friends with my dad and some of you work. And some of you went to school with him since im talking about school yesterday was my fist day back at school.

    Update 3/8/15 12:00am

    Well, Kyndale's getting back to her normal hyper self now.... Woke up this afternoon and gave her a call, she had stayed with family while the wife and oldest daughter were at a choir competition. Come to find out she about gave her aunt a heart attack.

    Kyndale was in the living room playing with her cousin while I was on the phone with her aunt. When her aunt walked in to tell Kyndale I was on the phone she found her doing cartwheels through the living room..... I told Kyndale she needed to take it easy as the surgeon specifically told her NO CARTWHEELS for a month. She just casually said "I'm fine, it doesn't even hurt".

    I told her the cartwheels themselves might not hurt, but if she fell and hit her chest it would definitely hurt a lot if not require another trip to the hospital. She said she'd calm down, but she didn't know why she couldn't do something if it didn't hurt.

    I told her she could help me work on her sisters car in the morning when I get off (needs a cam position sensor). She got pretty excited about that, she loves working in the garage. So after I put the sensor in, and tighten everything up that kyndale loosened while I was in the process of putting the sensor in, I may get to sleep a few hours before I've got to be back at work.

    Her rash seems to be subsiding as well, she said it feels much better now. She's starting to go to the restroom on a regular basis now so we're going to cut out the mirilax and see how she does. We've got one more week before the surgeon said to stop with the lasix, so after that she'll be off all of the meds.

    She still is going strong without any pain meds either! Every day she's progressing in leaps and bounds!

    Update 3/6/15 6:15pm

    We finally let Kyndale out of her cell today lol. We went out for lunch at out local steakhouse then took her to school for a little while. The wife had to get some paperwork done at work, so I took kyndale to her classroom so she could visit with her friends. She had a blast, I didn't think we were going to be able to get her to leave.

    She was able to take the strips off of her incision today, and it looks AWESOME! Looks as though she will have very minimal scarring. It looks as though someone took a pencil and drew a line on her chest, she was sooooooo excited. The rash doesn't seem to be bothering her as much today either. She didn't sleep very well last night, kept waking up itching, but you couldn't tell it today.

    I'm going to go ahead and go back to work tonight (as much as I don't want too). Mom and kyndale are going to try to go back Tuesday. Thanks for all the prayers and support, seems my little lady is well on her way to a complete recovery!


    Update 3/5/15 5:15 pm

    Went back to the doc today as her rash isn't getting any better. She seems to think that it's an allergic reaction from the antibiotic that was used on her dressing covering the pick line. They prescribed Zyrtec and a steroid to try to clear it up. They also advised not to use any benadryl while on the steroid.

    I did pick up some gold bond anti itch lotion that seems to help more than the cortizone. The menthol in the lotion seems to take her mind off of the itch. Hopefully this will clear it up in a few days, if not we'll have to make another trip to the doctor and she's getting a little tired of those.

    She also has gained 2 lbs since Tuesday, I think I was more excited about that than she was lol. Pretty good day overall though, we went to steak and shake for lunch, went to the doc and visited great grandma and grandpa for a couple of hours.


    Update 3/4/15 10:00 pm

    Kyndale is still getting stronger by the day, she hasn't even had any pain meds for the past couple of days. Her biggest complaint now is the rash from the adhesive on the bandages that were all over her. She's got a horrible rash all over her upper body that is driving her nuts. I went to town yesterday and picked up some itch cream but it doesn't seem to be helping much, called her pediatrician and she said if it isn't getting any better tomorrow to bring her back in.

    Her appetite seems to finally be getting back to normal. She actually ate breakfast, lunch and dinner today for the first time since the surgery. Friday she'll be able to take a normal shower without having to worry about getting her incision wet, it's been sponge baths for the past week. She can also take her sterri-strips off Friday as well.

    I'm planning to try to go back to work friday if all goes well. Sitting at the hospital and home for this past week is driving me just as nuts as her I think lol. I did spend the better part of today trying to catch up on things we've neglected over the past few weeks. Still doesn't seem like I got much done, but it'll be there tomorrow.

    We're still doing our nightly family time we started when we got home. I think mom and I are going to have to go try to find some new games to play though. We've got a ton, but lady has been obsessed with uno and yahtzee. Mom finally said she wasn't playing uno tonight, so we played 3 games of yahtzee and watched some Disney Channel together.

    Hopefully her rash won't look as bad tomorrow, but if we end up going to the doc I'll fill everyone in.

    Have a good night!

    Update 3/3/15 1:15 pm

    Doctor visit went well, she said that the incision seems to be healing well with no signs of infection. Kyndale has lost another 3 pounds since we left the hospital (down to 51lbs ) but she's starting to get her appetite back.

    She said Mexican sounded good last night, so we ordered out. She ate one taco, quite a bit of rice and some salsa and chips. That's the most she's ate at one sitting so it was pretty exciting. She's also drinking a couple of PediaSure shakes a day.

    She woke mom and I up last night around 1:00 am hurting but she'd already had her pain meds for the night. I got up and made us both a bed on the couch and slept there with her. I think she just wanted mom or dad though.

    Her energy has been increasing daily, so hopefully she'll keep eating. She is starting to go stir crazy, and I can understand how she feels. The crafts, games and movies can only buy us so much time lol.




    Update 3/2/15 12:45 pm

    Thanks for everything :ingo:

    Kyndale is still doing well, she's taking a nap now so it gave me time to give an update. I've spent the better part of today helping her with her homework and double checking it. I didn't realize how much work they have to do on a weekly basis.

    Mom and I are doing well, still pretty wore out. Kyndale managed to sleep through the night without any pain meds for the first time, but she got pretty sore this morning so we gave her some. Her incision seems to be healing up well, and we go for a checkup with her pediatrician tomorrow morning. She still isn't eating much, but she would go in spurts before the surgery.

    She was in a size 8 before we went in and now they fall off of her. We had few old pairs of size 6 pants that are still loose, but don't look nearly as bad so she'll be in them until she starts putting some of the weight back on.

    It does feel great to be back home, and I know she's more comfortable here as well. I think I'm going to go snuggle with lady and try to take a nap myself so I will give another update soon.

    Update 8:10 pm

    Another great evening, family left around 4:30 this afternoon. It's been a pretty lazy evening. Pot pies for supper followed by connect 4 and yahtzee.

    We need to get some weight back on lady, she's looking very frail. I bet she's lost 5-10 pounds since Tuesday. So I went to the store today and got her her favorite chicken fettuccine, pot pies, ice cream and some ensure shakes. She is starting to get her appetite back though.

    It's time for her to take her sponge bath and call it a night so I'd better go get her bed ready. I think Cinderella will be the bedtime story tonight.

    Another smile to melt the heart, after she whipped mom and I at yahtzee. ....


    Update 3/1/15 4:00 pm

    Still nuts today with friends and family, we've had a non stop flow of people since 10am. Kyndale had a little bit of a rough morning, she's moving around a lot more and it's making her uncomfortable. She took about an hour nap earlier, and is up again playing with her cousins.

    Hopefully the traffic will slow down a little after while, I'm ready to relax for a minute. We're definitely eating good, the sister in law made a big crock pot of beef stew with cornbread. I got so tired of eating out, lol

    Update 8:25 pm

    Well, all is still well. We've had a flood of friends and family stop by since we've been home and the last of them just left. Now it's time to snuggle with my angel.

    She's laying on the recliner with me now, watching Disney. I've missed this more than anything. This has truly been an eye opening experience for the wife and I. All the things in life that I thought were important in the past, now seem to be this things that will still be there in a month.

    Taking the time to just enjoy the true blessings in life, and not take them for granted is what I'm going to try to do from here on out. Kyndale has always been the light of my life, but this past week I've done a lot of reflecting on the past. I've realized that anything can happen, what's here today might be gone tomorrow, and to treat every second with family as a gift from god.

    Playing connect 4, uno or yahtzee for hours on end are worth 100 fold more than that extra day of overtime or watching the latest episode of your favorite show. Give your children and significant other a kiss and tell them you love them every time you see them because you never know what tomorrow may bring.

    I know I've said it over and over, but I want to thank each and everyone of you again for everything you've done this past week. I couldn't have done it without all of the support.

    On that note, I'm going to go lay lady in her bed. Good night to all, and we'll be back tomorrow.

    Update 4:20 pm

    We're home! She did great on the way home, just sore from the ride. She's lounging on the couch resting. I'll try to keep updating this thread a couple of times a day to let everyone know her recovery is going. Thanks again for everything all of you have done, we will never forget it.


    Update 3:00 pm

    On our way home!!!!!

    Update 2:00 pm

    Still waiting on the surgeon to come by, but she did get her last IV out a little while ago. They want to change her bandages and do a few more small things before we can go as well. She's starting to get a little grumpy, but that's to be expected. She's been up since 7 this morning and hasn't had any Tylenol since then. I'll let you know when we get the green light!

    Update 2/28/15 10:45 AM

    Today's the day! We should get to go home sometime this afternoon/evening! Kyndale's still doing great, she's eating some frosted flakes for breakfast. She said to tell everyone hi! Mom went to big sisters show choir contest this morning so lady and I have been playing uno and yahtzee all moring.

    After far as the painting goes, I think it's only right that mbills2223 gets it as a thank you for starting all of this for her. I cannot thank all of you enough, and can't wait to meet you all. I mentioned a shoot, and she said she would love it. The only stipulation is that she said it would have to be this spring when she's better and it's warm out lol.

    I'll get some more pics today and get then up so check back later! Oh, and I almost forgot, I slept until 9 am this morning! :woot:

    Update 7:30 pm

    Still having an awesome day, she took one hour long nap today and has been going strong the rest of the time. Since midnight last night she's had one dose of her pain meds (at 9:30 am) but they did give her morphine when they took the tube out.

    It is amazing to me how quickly she seems so be bouncing back from this. Heck, I told her I'll do a brake job on my truck and be sore for a week lol. She said she wants to just try Tylenol tonight, so we'll see how it goes but as good of spirits as she's been in I think it'll be fine.

    Thank you all for everything you have done for us, the prayers worked and my baby pulled through. I'll try to update a little later.





    Update 2:45 pm

    :woot:

    Drain tube and pick line are out!

    She just ate 3/4 of a McChicken and a small fry from McDonald's for lunch as well! That's the first time she's really ate much of anything since Tuesday. The doc says we should be able to go home tomorrow!!!! We're so excited!!!

    Time to snuggle and take a nap, she's been awesome today.


    Update 2/27/15 11:30 am

    Had a good night last night and a great morning! Every day she amazes me on how much more she wants to do. She still isn't eating much but had a ton more energy. The doctor said the drainage line may come out this afternoon, but they think tomorrow will be the earliest she'll be able to go home. We'll know more after we see her surgeon.

    She wanted to color everyone from ingo a picture, so we walked down to the art room. I'll update a little more later, too busy having fun with little lady!



    Walking around the floor...


    Bubble time!

    Update 9:45 pm

    All of us had a really good day today, Kyndale had her moments, but nothing like yesterday. She wanted to play some more uno a little bit ago, and now she's trying to relax and watch some tv.

    Mom is passed out on the couch after getting her belly full and I'm about ready for a shower. I'm hoping she at least gets her chest tube out in the morning, I think she'll feel much better after that. Everyone have a good night, we're going to get some sleep!

    Update 6:15 pm

    She's been pretty sore since her first walk to the art room, and slept for a while. She felt good enough to play a few games of uno earlier though. The nurses wanted her to take another walk about 20 minutes ago so we went to the end of the hall and back. She's in quite a bit of pain again, I these walks really zap her. We're trying to get her comfortable so she can take another nap here shortly.

    She ended up just ordering some chicken nuggets earlier and ate all but 1 so that is a good thing.

    Update 4:30 pm

    Well, she's pretty grumpy right now as they have switched entirely to oral meds. I'd like to be able to tell you how she's been sine my last update, but I cant. I was too busy SLEEPING! :woot:

    She was doing so well that after crafts her and I both decided to take a nap. I didn't wake up until about 20 minutes ago! Wife said I was snoring for about 3.5 hours, and I feel tons better. I did miss the surgeon though but the wife said that the chest tube and pick line should come out in the morning. If tonight goes well, and she passes a stool.........................................WE MAY GO HOME TOMORROW!!!

    I'll check back in later, she wants olive garden chicken gnocchi soup for supper and I need to find the closest one.

    Update 12:30 pm

    She's still doing good, we walked down to the art room earlier (200ft) and did some painting for an hour or so. She really enjoyed it, but now she's hurting pretty bad. It had been 4 hours since her last pain meds, so she just got them a few minutes ago. She's taking a nap now.


    Update 10:00 am

    Ya, I agree, my wife and I talked about it this morning. I think her grandpa and aunt are coming up sometime today so the wife and I are going to go eat somewhere and just get out of here for a little while. I talked to the doc this morning about everything and he said they have a room where parents can go sleep, that way the hourly checks, meds, ect.. won't wake me.

    I slept a solid 5-6 hours last night and didn't wake up once. With her feeling so much better today, I'm a lot more comfortable with the idea of taking a break. She ate some bacon and eggs for breakfast and is napping now. Thanks for everything.

    BACON!!!!!


    Update 9:15 am

    Great morning so far, she actually used the restroom!!! Didn't have to cath again yipee! She was sooooooo excited, she yelled out loud "I'm peeing!" She also walked to the restroom and back, and now she said she wants to go walking.

    I think now that she knows it isn't going to kill her, she's all gitty. She's scheduled to go to the game room with the child life services lady after breakfast to paint. Getting better everyday!




    Update 7:25 am

    This morning seems to be going better so far. I went down and chatted with the chaplain last night for a while and feel quite a bit better today. My wife took point last night and slept on the chair next to the bed to tend to Kyndale and I got the couch. I had some earplugs in the jeep, so I put them in and closed the curtain around the couch and actually slept pretty well. Didn't wake up once until 7 when the wife woke me (she needed her coffee).

    Kyndale was coloring when I woke up, she seems pretty good so far today. She had some more grapes for breakfast and is napping now. We're going to try to walk today sometime, so I'll let you know how that goes.

    Update 2/26/15 12:30 am

    Nurse just came in to apologize, she's a new in turn and this one didn't go as planned. The wife said the in turn tried for about 2 minutes until her actual RN stepped in to do it. The wife told her that we weren't upset at them personally, this has just been a stressful day and that this just pushed it over the edge. I can't sleep, I just find myself staring at Kyndale making sure she's as comfortable as possible.

    I know I need sleep bad, really starting to feel it. I'd say in the past 4 days I've had maybe 9 hours of sleep and that's probably being generous. Still not eating much either, I may say something to the doctor tomorrow. I'm afraid if I keep going like this I'm going to end up sick, but there's nothing I can do. I just can't sleep or eat, any time I hear Kyndale move I find myself watching her for an hour making sure she's ok.

    I knew it was going to be hard on me, but honestly I didn't have a clue what I was in for. I'm more worried about the 2 ladies in the same room as me and making sure their ok.

    Thanks for listening, this is just my brief escape from the hell I'm going through right now and as weird as it seems calms me to get all of this off my chest. I know I've said it over and over again, but the overwhelming support from everyone here is the gas in my tank right now.

    I'm going to try again to get a little sleep, the nurses will be back at 2 for more pain meds and vitals. Good night all....

    Update 11:40 pm

    Well, I'm sitting here mopping up my tears. They had to put another catheter in her as she hasn't been able to go since they took it out this morning. Mom on one side dad on the other, with dad head to head with her as she lay screaming at the top of her lungs staring into my eyes until her eyes rolled back and she seemed to pass out for a second. I pray none of you ever have to go though that with your child as it just ripped my heart out.

    Hopefully she'll be able to go in the morning and we won't have to do this again. If we do, there is no way I'll be able to stay, that was way too much for me. She is out cold, so I'm going to try to get some sleep too. Night all, I'll be back on in the morning.



    Update 8:00 pm

    Been a decent evening, she got out of bed and sat in the chair for 5 minutes or so. Pain seems to have subsided for the time being. We're watching the blockbuster hit "Hairspray", lol. She's actually smiling and somewhat laughing (but she says it REALLY hurts to laugh), lol.

    Maybe if we're lucky she may get the drainage tube out tomorrow. They did say they want her to try to walk a little in the morning so that may make it another long day but she needs to move around a little.

    She has ate some crackers and grapes today, and her stomach seems to be handling it well. All things said, this is the closest she's been to her old self in a while, and while today made my heart ache, tonight couldn't get any better.


    Update 5:00 pm

    Sorry I haven't had many updates today, It's been a long one. Good news is no more catheter, not pushing any fluids and she's in "step down" (in between icu and regular room). Bad news is she's been in a lot of pain. They're trying to get her onto oral pain meds but by the time she realizes she needs more it's too late and she's in tears before they kick in.

    She still hasn't ate since Monday night, and that isn't helping matters. We did get her to eat a couple of saltine crackers a few minutes ago to see if her stomach will feel better. She's still having a very hard time with her breathing exercises, and we weren't able to get her out of bed today. Hopefully she'll have a better evening than what the morning and afternoon were.


    I'll try to give you an update in a few hours, we need to try to get her to eat and use the bathroom. She hasn't went since this morning when they took the catheter out.

    Update 9:25 am
    She just had another panic attack saying she couldn't breathe. She was starting to really cry and gasp pretty hard. That in turn caused her oxygen to start dropping with the shallow breaths. They had to put her on more morphine to knock her out so she would settle down and are going to leave the catheter in for now. She's sleeping again.

    It feels like one step forward two steps back so far today.

    Update 2/25/15 5:55 am

    Finally got some much needed sleep last night! :woot:

    I managed to sleep from 12:30-5 and mom slept from 9:30 or so until 5! The little one is doing great, she actually sat up on her own a few times last night and kept a few popcicles down. Th e came in to do some x-rays this morning and gave her a sponge bath around 5, so now she's passed out again.

    Just thought I'd give a quick update, I'm off to find coffee then take a shower...

    Update 10:40 PM

    Well, dad can't sleep (imagine that) so I've been answering texts from today. I want to personally thank each and every one of you for everything you've done for my family and I. I don't know how I'll ever be able to repay all the acts of kindness, but know for sure that we will pay it forward.

    Kyndale (my daughter) was just awake for better than 30 minutes. We had a long talk about everyone who was here for her today and how very proud mommy and I are of her. She's still a little grouchy but I'll take that, and enjoy every blissful second of it.

    The nausea meds must have worked as she just had her first drink since 4:30am. She drank about 6 Oz of apple juice and has held it down for about 30 minutes so far!

    Update 9:00 PM

    She's still doing good physically, mentally I think we're all drained. She woke up again and wanted some ice chips, and the nurses thought they'd try to get her to blow some bubbles. She was all for it until the ice made her sick at her stomach and she started dry heaving........

    They gave her something for the nausea and some more pain meds. Looks like we'll try the bubbles at a later time. Mom is finally passed out on the couch and I'm laying beside the little one in the chair. Here's an updated pic of my angel


    Update 6:45 pm

    She's starting to stay awake for longer periods, but she's in quite a bit of pain. They were just in here trying to start her on the lung exercises, and I about lost it again. Seeing her in that much pain just trying to breath is just as hard as anything. We tried them for about 10 minutes, she was in tears so the nurse decided to give her a break.

    She's sleeping now.

    Update 2:25 pm

    She's in ICU! Has been in and out, but is talking, thanks for everything so far!


    Update 12:50 pm

    she's out of surgery and on her way to ICU. Surgeon said everything went great. Can't wait to see my baby, thanks everyone for everything! I'll post more later.
    Update 12:20 pm

    Closing the incision now, EKG looked good. Going to take her off the ventilator within the hour and should be in ICU within 90 minutes. Looking at being able to go into her room by 3:00pm. The surgeon should be out to talk to us in an hour or two....;)

    Update 11:30 AM

    Got the patch on, started the heart back up, only had to split half the breast bone. Waiting on the cardiologist to do an EKG before they close her up. Still doing great.

    Update 7:30 AM

    They just took her back, she walked on her own down to surgery, no tears, no anti anxiety meds. She's 100 times stronger than I am.

    Waiting to go back to surgery...

    Update 5:00 AM 2/24/15

    We're on the road now, just passed Brownsburg. I managed to go to bed sometime around 2:30, but the wife and the little one managed to get some decent sleep. The little one seems ok so far, she hasn't said much but she's all snuggled up in the back with her pillow and blanket. Wish us luck, next update probably around 8.

    Update 9:00 pm 2/23/15

    We're finally on our way home from indy, and she took it like a champ today. We were supposed to meet with the surgeon around 4 but he was in surgery. We waited around until 5:30 until one of his nurses came and talked to us as he was still operating on another youngster. Looks like they're going to put a pick line in her neck that will stay in for at least a couple of days. They're very optimistic on the outcome, and all her labs came back great. We should be home by 9:30, give her a shower and wipe her down with some specialized wipes that are supposed to cut down on the infection risk.

    We have to have her up there by 5:30 so we want to be on the road by 4:15. Doesn't look like we'll be getting much if any sleep. I'll give you guys another update in the morning. Thanks again for all the prayers, and here's a few pics from today.....

    passed out on the way home


    checking mommy.....


    Well, the time has come. My daughter has her heart surgery in the morning. We have to be at Riley for our consultation today at 1pm. I think we've about got everything ready to go. Bags packed, stopped by walmart last night for some games, yahtzee, uno, ect... She's getting pretty nervous, but we're trying to keep her in good spirits. She wanted to go to school today to have lunch with her friends, and since they had a 2 hour delay I took her to McDonald's for breakfast.

    We have to be at the hospital at 6 am tomorrow and they should have her in surgery by 7:15. If everything goes well she should be out in 3-5 hours. She's compiled a list of questions for the surgeon, about 20 in all. I'll try to update this thread multiple times through the next few days, please keep her in your prayers. :ingo:

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    aclark

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    Good luck to her! Stay positive.

    What is this for? I have 2 neices that have CHD and have to undergo multiple surgeries. Both have VSD, one has an interrupted aortic arch and the other has a issue with her pulmanary artery. Both are likely do for surgery this year which is super scary.
     

    baldguy637

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    Good luck to her! Stay positive.

    What is this for? I have 2 neices that have CHD and have to undergo multiple surgeries. Both have VSD, one has an interrupted aortic arch and the other has a issue with her pulmanary artery. Both are likely do for surgery this year which is super scary.


    She was born with a vsd which is now causing her aortic valve to leak. It will cause her heart heart to enlarge and lead to heart disease so they want to address it asap. They're going in to close the vsd.
     

    jblomenberg16

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    Continued prayers.


    Anyone good at making avatars able to make one we can all use to show our support? Kinda like the blue lights and badges we've done in the past, but not in memory, but in support for her fight.

    Does she have a favorite toy or cartoon we can use?
     

    Libertarian01

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    To Baldguy637,

    Here is what is going to happen:

    In about 24 hours you are going to be sitting in a hospital room with a little girl. You are going to have people coming and going. You are going to be hearing about how well everything was, how happy the surgeons were with her surgery. She is going to be unhappy with something in her room. There will be flowers and at least one stuffed teddy bear. If there is NOT a stuffed teddy bear (or her equivalent favorite animal) you WILL need to get one.

    In about 48 hours you will be in the same hospital room. Now you will be slightly bored. The routine will be setting in. She will already be complaining about wanting to go home. She will also probably be complaining about having to lug around an IV stand going to the bathroom. You or mom will help. The room will be more stuffed with flowers and things that get in the way.

    In about 96 hours you will be getting a headache from the discharge. She will be pushing to be home for the weekend. There will be MUCH paperwork. There will be a nightmare of paperwork and instructions. Three different nurses will give you the same instructions three different times. There will be scheduled followup appointments, which your wife will take care of. There will be a minor logistical nightmare of how to get all this crap down to the car. She won't want to be wheelchaired out because she is a big girl and can walk, but they will make her anyway and being a good girl she will go along with it.

    You will have an obnoxiously cold drive home. There will be handfuls of stuff that are dragged into the home. Everyone will be happy to be there. At some point you will feel like crying for joy that everything is OK and feel silly about worrying so much. That is to be expected. That is what good dads and moms do.

    In about a week or more you will have the headache of followup appointments. Slowly, normal will set back in. And you will wonder at all the stress you went through.

    All will be fine.

    Doug
     
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