Sorry for the lack of posts lately, but there really isn't much to post about. AG had a cardiology appointment and her heart function looks good so we don't go back to Dr R for three months! Amazing!
We are still quarantining due to the high number of cases of flu, stomach virus and RSV still floating around. That has been difficult, but we are hopeful that in the next few weeks we will come out of quarantine and just live normally again!
AG has started stuttering and having some problems with her speech so I took her this last week for a speech evaluation with the school district. AG did great and was so polite and well mannered. She answered all of their questions to the best of her ability and I was so proud of my big girl! They will call me to schedule a more in-depth evaluation soon and then make a determination of she qualifies for the speech program within the school district. So, we will see how things progress there.
Easter is coming up and so I have planned a special homeshool class this week for the kids to talk each day a little bit about why we, as Christians, celebrate Easter. I really want my children to realize that Easter is a holiday that is so much more than candy and egg hunts. I am excited that they are both getting old enough to start to expound more on Easter - Jesus - and all that Him dying on the cross and being buried in the tomb and then 3 days later rising again means for us. It is exciting to me to begin sharing these truths with the kids!
So, that is about all that we have going on these days. Again, sorry for the lack of posts. I will try to do better!
Sunday, March 24, 2013
Monday, February 4, 2013
Poop Watch Is Over!
So about 36 hours after swallowing the pacificer it made an appearance..... so poop watch is now officially over! It was such a relief that nothing invasive had to be done with her :) I have to give all credit to my husband who - without complaint - took over the poop watch duty for me because I quite frankly couldn't bring myself to look through the poop. He is my hero and an amazing husband and father. I was grateful :)
I am also happy to say that we drove up to NC this weekend for a day trip to play in the snow! We drove to the Visitor Center at Beech Mountain in NC. They have a small hill there for sledding. It is free to sled there you just have to take your own sled. It is also only for children 12 and under. It snowed all day while we were there. There was probably a foot of snow on the ground so it was beautiful! The kids loved sledding down the hill. Brian and I both went down with AG and then she got brave and wanted to do it herself and we let her! She hung on the whole way and never let go. She loved it and wanted to do it again and again and again by herself! So she and Zachary both enjoyed the sledding. It was a 2 hour drive up there and then we played about 4 hours and then drove home. It was a fun, easy, cheap day trip and it was fantastic!
In my head I am now planning to try to teach the kids how to snow ski next winter. I think they will both be big enough next winter to learn to ski and I can't hardly wait! This snow ski loving Mommy can't wait to share my love of the sport with my kids!
So, we made some fantastic family memories this weekend, that I wish I could share pictures of with you, but I still don't know how to upload the pictures :( Hopefully soon!
I am also happy to say that we drove up to NC this weekend for a day trip to play in the snow! We drove to the Visitor Center at Beech Mountain in NC. They have a small hill there for sledding. It is free to sled there you just have to take your own sled. It is also only for children 12 and under. It snowed all day while we were there. There was probably a foot of snow on the ground so it was beautiful! The kids loved sledding down the hill. Brian and I both went down with AG and then she got brave and wanted to do it herself and we let her! She hung on the whole way and never let go. She loved it and wanted to do it again and again and again by herself! So she and Zachary both enjoyed the sledding. It was a 2 hour drive up there and then we played about 4 hours and then drove home. It was a fun, easy, cheap day trip and it was fantastic!
In my head I am now planning to try to teach the kids how to snow ski next winter. I think they will both be big enough next winter to learn to ski and I can't hardly wait! This snow ski loving Mommy can't wait to share my love of the sport with my kids!
So, we made some fantastic family memories this weekend, that I wish I could share pictures of with you, but I still don't know how to upload the pictures :( Hopefully soon!
Thursday, January 31, 2013
Swallowed A Pacifier - Poop Watch
So today Anna Grace bit the end of her pacificer off and then swallowed it. No, I'm not joking. I called her doctor to let him know what happened and he said that we need to check her poop for the next 48 hours to see if she passes it. If not then, well.... it will have to be removed surgucally I suppose. But for now Brian and I are on the poop watch.
Please pray that she passes it - I can not even imagine trying to take her back to a hospital for anything invasive right now so soon after heart surgery! Serious anxiety drugs would have to be administered!
So Brian had the honors of looking through tonight's poop with no sign of the paci. What a trooper he was - without complaint and without even gagging! He's Super Dad as far as I'm concerned. I doubt that I will be able to accomplish the task as well as he did! So.... pray for me too!
I'll keep you posted on how things turn up :)
Whew.... being a Mom is CRAZY!
Please pray that she passes it - I can not even imagine trying to take her back to a hospital for anything invasive right now so soon after heart surgery! Serious anxiety drugs would have to be administered!
So Brian had the honors of looking through tonight's poop with no sign of the paci. What a trooper he was - without complaint and without even gagging! He's Super Dad as far as I'm concerned. I doubt that I will be able to accomplish the task as well as he did! So.... pray for me too!
I'll keep you posted on how things turn up :)
Whew.... being a Mom is CRAZY!
Sunday, January 27, 2013
Temper Tantrums
There is so much I want to BLOG about but I have been struggling with finding the time to BLOG - so for that I apologize. I also have not been able to figure out how to post pictures or videos. Shortly after the first of the year blogger changed it's image upload feature and now I can't figure out how to do it - so I have lots of fun pictures to show you and no way to get them on my BLOG. My technology savy hubby will be able to figure it out for me though so hopefully I'll have some new pictures up for you soon!
Things here have been the same. We are still in quarantine trying to stay well during this crazy flu season that we are having. We have mostly been doing homeschool, playing outside and going on the occassional hike.
We have decided to homeschool again for the upcoming school year. It is always nice to have the decision made. Now I am in the search for the cirriculum we are going to use for the upcoming year I'm not going to start AG on an official cirriculum this year, but she will probably just stay in the school room with us on an informal basis like she has been doing for the last year. It's amazing how much information she picks up just staying the in the school room with us.
Our beloved Ms. Lauren came to babysit for a few hours on Saturday. She hasn't seen the kids since we came home from Charleston. She was amazed at how great AG looked and amazed at her stamina. She took her for a walk around the block and said she only had to carry her about 20 feet. It is a far cry from our walks with AG just a few short months ago when she had to be carried virtually the entire way. It was a blessing to see Ms. Lauren for all of us. She is such a dear dear young woman to us and we love her very much!
As for AG. She is entering the temper tantrum stage of life. Zachary never really experienced this but AG is a very strong willed child. For example, Brian took the kids hiking today. I needed to make a run to Sam's Club and I needed to do some checkbook balancing and bill paying. So - Brian and the kids went off for some hiking. Well, while they were out on the trail AG had to potty (she's been doing really great with her potty training over the last few weeks). So, since they were on the trail and there was no potty anywhere near Brian let her potty in the woods. She loved it! After they got home she had to potty and proceeded to try to potty outside. Well, I tried very lovingly to explain that when you're hikiing and you really have to potty and you can't hold it you can go outside, but when you're home or near a potty it is proper to use the potty. Well, she wouldn't hear of it - she was determined not to use the potty but to go outside. So, the temper tantrum began and went on and on and on. It finally ended with her pottying on the floor and then taking a shower. Whew... she would not be presuaded, not by candy, not by time out, not by toys or distractions. So I am hoping we are not back to square one with the potty training, but we will see :) But honestly, I am thrilled to be blogging about potty training and temper tantrums because it means that she is doing well and starting to get back to normal - so I'm always happy to deal with and blog about "normal" kid things!
As for a Zachary update - well, my big boy turned 6 years old this last weekend. It was a bittersweet ocassion to be honest. I am thankful that he is growing into a fine young man but at the same time so sad to see him getting older too. It only seems like yesterday that he was born and I was holding him for the first time. What a sweet, sweet baby he was! Now he's telling me that I can't lay down with him any more at night because he'a big now. Sniff.... truly I'm thankful and sad all at the same time!
So that is about all the news I have for now. AG goes back to the cardiologist in a few weeks for an echo and a check up with Dr. R. In the meantime, we're just hanging around the house trying to stay well!
Things here have been the same. We are still in quarantine trying to stay well during this crazy flu season that we are having. We have mostly been doing homeschool, playing outside and going on the occassional hike.
We have decided to homeschool again for the upcoming school year. It is always nice to have the decision made. Now I am in the search for the cirriculum we are going to use for the upcoming year I'm not going to start AG on an official cirriculum this year, but she will probably just stay in the school room with us on an informal basis like she has been doing for the last year. It's amazing how much information she picks up just staying the in the school room with us.
Our beloved Ms. Lauren came to babysit for a few hours on Saturday. She hasn't seen the kids since we came home from Charleston. She was amazed at how great AG looked and amazed at her stamina. She took her for a walk around the block and said she only had to carry her about 20 feet. It is a far cry from our walks with AG just a few short months ago when she had to be carried virtually the entire way. It was a blessing to see Ms. Lauren for all of us. She is such a dear dear young woman to us and we love her very much!
As for AG. She is entering the temper tantrum stage of life. Zachary never really experienced this but AG is a very strong willed child. For example, Brian took the kids hiking today. I needed to make a run to Sam's Club and I needed to do some checkbook balancing and bill paying. So - Brian and the kids went off for some hiking. Well, while they were out on the trail AG had to potty (she's been doing really great with her potty training over the last few weeks). So, since they were on the trail and there was no potty anywhere near Brian let her potty in the woods. She loved it! After they got home she had to potty and proceeded to try to potty outside. Well, I tried very lovingly to explain that when you're hikiing and you really have to potty and you can't hold it you can go outside, but when you're home or near a potty it is proper to use the potty. Well, she wouldn't hear of it - she was determined not to use the potty but to go outside. So, the temper tantrum began and went on and on and on. It finally ended with her pottying on the floor and then taking a shower. Whew... she would not be presuaded, not by candy, not by time out, not by toys or distractions. So I am hoping we are not back to square one with the potty training, but we will see :) But honestly, I am thrilled to be blogging about potty training and temper tantrums because it means that she is doing well and starting to get back to normal - so I'm always happy to deal with and blog about "normal" kid things!
As for a Zachary update - well, my big boy turned 6 years old this last weekend. It was a bittersweet ocassion to be honest. I am thankful that he is growing into a fine young man but at the same time so sad to see him getting older too. It only seems like yesterday that he was born and I was holding him for the first time. What a sweet, sweet baby he was! Now he's telling me that I can't lay down with him any more at night because he'a big now. Sniff.... truly I'm thankful and sad all at the same time!
So that is about all the news I have for now. AG goes back to the cardiologist in a few weeks for an echo and a check up with Dr. R. In the meantime, we're just hanging around the house trying to stay well!
Thursday, January 17, 2013
5K on June 1st
If you've been following my blog for a while now then you remember last year that I helped organize the Palmetto Heatrs 5K fundraiser. Palmetto Hearts is a SC based charity that helps children and families of children who are born with congenital heart defects (like Anna Grace). It is charity that is near and dear to me. Last year through the efforts of the 5K we were able to raise $11,000 for Palmetto Hearts.
Well, I am happy to say that Palmetto Hearts is in the process of planning its 2013 5K. I won't be able to help with the organizing and planning of the 5K this year. Honestly, with homeschoolinjg Zachary my time is so much more limited than it was last year so I don't think I would serve on the 5K committee and homeschool him effectively. But... if you know me you know I love to be involved in some way. So.... I have volunteered to run the registraion table on race day! It is a less long term commitment than being on the planning committee but I will still feel like a big part of the race on race day!
I am thankful for another opportunity to help this charity help heart kids. So, please mark your calendar that the race will be June 1, 2013 at Duncan Park in Spartanburg. It is the same location as last year.
I'm sure it will be some time before they have their website up-to-date with race information, but I am hopeful that I will get to see lots of friends, family and heart families at the race. It's not only a fundraiser, but also a sort of heart family reunion.
I am excited to be able to help this year. I am thankful that Anna Grace is recovering well enough for me to be able to even consider volunteering for the 5K. We have so much to be thankful for!
Oh.... by the way.... AG was able to stop taking Lasix today! Hooray!!!! AND.... Dr. R said it was fine for her to start taking swimming lessons at the beginning of February. We are all so excited that AG is going to be able to start swim lessons - but AG is certainly the MOST excited about it!!!! She can't wait and trying to explain "you have to wait 2 more weeks until you start" to a three year old is not easy! It can't get here sonn enough for her! I'm praying she is as enthusiastic about it when her first lesson finally arrives. I will keep you posted on how it goes!
Well, I am happy to say that Palmetto Hearts is in the process of planning its 2013 5K. I won't be able to help with the organizing and planning of the 5K this year. Honestly, with homeschoolinjg Zachary my time is so much more limited than it was last year so I don't think I would serve on the 5K committee and homeschool him effectively. But... if you know me you know I love to be involved in some way. So.... I have volunteered to run the registraion table on race day! It is a less long term commitment than being on the planning committee but I will still feel like a big part of the race on race day!
I am thankful for another opportunity to help this charity help heart kids. So, please mark your calendar that the race will be June 1, 2013 at Duncan Park in Spartanburg. It is the same location as last year.
I'm sure it will be some time before they have their website up-to-date with race information, but I am hopeful that I will get to see lots of friends, family and heart families at the race. It's not only a fundraiser, but also a sort of heart family reunion.
I am excited to be able to help this year. I am thankful that Anna Grace is recovering well enough for me to be able to even consider volunteering for the 5K. We have so much to be thankful for!
Oh.... by the way.... AG was able to stop taking Lasix today! Hooray!!!! AND.... Dr. R said it was fine for her to start taking swimming lessons at the beginning of February. We are all so excited that AG is going to be able to start swim lessons - but AG is certainly the MOST excited about it!!!! She can't wait and trying to explain "you have to wait 2 more weeks until you start" to a three year old is not easy! It can't get here sonn enough for her! I'm praying she is as enthusiastic about it when her first lesson finally arrives. I will keep you posted on how it goes!
Wednesday, January 9, 2013
Update & Sorry for the Lack of Posts
Hello friends! Let me apologize by saying that I'm so sorry for the lack of posts. Everything has been fine here, we have just been busy with Christmas and then we headed to Florida on a 10 day vacation to reconnect and relax together as a family. So now we are home and have started homeschooling back again and have settled back into a nice little routine.
We are still quarantining, but just this week we have "broken" quarantine and signed Zachary up for swim lessons. It's the "safest" sport I could think of since they put so much chlorine in the pool that SURELY no germs could possibly live in there! He started swimming this week and will go twice a week for the next 4 weeks. Of course AG cried and cried because SHE wants to take swim lessons too. It will be a hot topic on the agenda in February when we see Dr. R again for a cardiology check up. I am hopeful that he will say "YES" and allow her to take swim lessons like her brother. As you all know she wants to do EVERYTHING that her big brother does! Can a little girl with half a heart swim????? We shall soon find out!
AG is still taking her Lasix which is a medication which helps her body release any extra fluid that it has possibly building up around her lungs. It basically is what I call pee-pee medicine because that what it makes her do. The reason I mention it is because she has decided that she is too big to wear diapers and has insisted on wearing underwear. I had hoped to start seriously potty training AFTER she was through with her lasix, but she could not be put off any longer, so the potty training has officially begun! She is still in a diaper at night, but during the day she's in big girl undies! She's doing pretty well managing the potty, even with the Lasix. She just has to go EVERY 20 MINUTES. Seriously, it doesn't stop. It's constant.... potty, potty, potty. She is getting lots of practice using the potty! She is so proud of herself and with her frequesnt potty trips she is getting LOTS of candy - since that is her reward of choice for using the BIG potty. Oh.... her poor teeth! But seriously, I am grateful she is so independent and determined. She is an amazing little girl and I am always overjoyed when I see her growing and accomplishing milestones.
Speaking of milestones - our little one turned THREE on December 28th! We were vacationing in Florida and she had a doughnut with sprinkles on it and we sang happy birthday to her. It was a small affair since we had her birthday party back in the summer with her cousins and family. Regardless of the size of the party - it didn't decrease how amazing a milestone turing THREE is for a heart baby. We are blessed, blessed, blessed. We are so thankful for our sweet, independent and beautiful little girl :)
Thank you for continuing to follow our story and to pray for Anna Grace!
We are still quarantining, but just this week we have "broken" quarantine and signed Zachary up for swim lessons. It's the "safest" sport I could think of since they put so much chlorine in the pool that SURELY no germs could possibly live in there! He started swimming this week and will go twice a week for the next 4 weeks. Of course AG cried and cried because SHE wants to take swim lessons too. It will be a hot topic on the agenda in February when we see Dr. R again for a cardiology check up. I am hopeful that he will say "YES" and allow her to take swim lessons like her brother. As you all know she wants to do EVERYTHING that her big brother does! Can a little girl with half a heart swim????? We shall soon find out!
AG is still taking her Lasix which is a medication which helps her body release any extra fluid that it has possibly building up around her lungs. It basically is what I call pee-pee medicine because that what it makes her do. The reason I mention it is because she has decided that she is too big to wear diapers and has insisted on wearing underwear. I had hoped to start seriously potty training AFTER she was through with her lasix, but she could not be put off any longer, so the potty training has officially begun! She is still in a diaper at night, but during the day she's in big girl undies! She's doing pretty well managing the potty, even with the Lasix. She just has to go EVERY 20 MINUTES. Seriously, it doesn't stop. It's constant.... potty, potty, potty. She is getting lots of practice using the potty! She is so proud of herself and with her frequesnt potty trips she is getting LOTS of candy - since that is her reward of choice for using the BIG potty. Oh.... her poor teeth! But seriously, I am grateful she is so independent and determined. She is an amazing little girl and I am always overjoyed when I see her growing and accomplishing milestones.
Speaking of milestones - our little one turned THREE on December 28th! We were vacationing in Florida and she had a doughnut with sprinkles on it and we sang happy birthday to her. It was a small affair since we had her birthday party back in the summer with her cousins and family. Regardless of the size of the party - it didn't decrease how amazing a milestone turing THREE is for a heart baby. We are blessed, blessed, blessed. We are so thankful for our sweet, independent and beautiful little girl :)
Thank you for continuing to follow our story and to pray for Anna Grace!
Saturday, December 22, 2012
Video of Our Girl
Here's a short video of our little big girl. She is pretending to read her "Bible" and tell me about Jesus when he was a little baby. Pure sweetness!
Tuesday, December 4, 2012
A Picture Says It All
I know you have been wondering how AG has been recooperating at home. Rather than tell you, I'd like to just show you. They say a pciture's worth a thousand words, so..... here are a few thousand! Enjoy!
Saturday & Sunday this weekend we decided to enjoy the beautiful warm Southern December we are having and get outdoors. It's what you do when you're in quarantine and you're tired of looking at the same four walls. While there are a few other people on the trails the risk of germ exposure is pretty low since there is not really anything anyone is touching so it is about as germ free an outing as you can get. The boys went biking and the girls went hiking and we met up along the way. Even though AG is getting too big for the pink car she insited we take it. I don't think she can use it much longer though because she is just too big!
Before the boys took off on their bikes Zachary was kind enough to smile for me. He was itching to get on the trail though.
Dad finally got the truck locked up and met us at the trailhead for a family picture. They were trying to be silly, I'm not sure if you can tell but they are all sticking out their toungues :)
Here they are all giggling after taking a picture with their tongues sticking out, they thought it was soooo silly!
After the boys took off AG and I started hiking. She did not want to ride in the pink car and insisted on walking. This is a big change from before surgery when she was always on my hip during a hike. We found a tree stump and she was on the hunt for ladybugs. We didn't find any on this tree stump though.
Still looking for ladybugs!
Then AG took off running with me trailing behind her running with the pink car yelling, "slow down, don't you want to ride in the car????? Can I hold you???? " She never stopped, she just kept running and giggling. I think she loved the fact that she could just go and go like she never could before. I however was very nervous about the fact that she just had open heart surgery 3 1/2 weeks ago. The doctor assured me she would "self regulate" at this age and she would rest when tired.... hmmm... not sure if that applies to our little one!
So we met up with the boys again on the trail here. They zoomed by us on their bikes. Zachary is really getting pretty agile on his bike.
While crossing the bridge we finally found the coveted and elusive ladybug. She was so happy and carried that thing around on her hand and arm for at least 30 minutes.
Zachary crossed the next bridge with the intention of pushing his bike up the "big" hill so that he could ride down the steep part. He is getting a little daring!
Here he is pushing his bike up the hill.
Here he goes zooming down the hill. Not scared one bit, he loved every second of it!
Then of course AG wanted to go up the big hill. Daddy carried her up on his shoulders, but she wanted to RUN down it all by herself, which she did.
After running down the big hill she sat down in the grass for about 5 minutes for a rest. You can see she has a smile on her face. She had a blast!
Zachary loved riding his bike on the trails.
After venturing down the trail a bit more the boys found another big hill to climb. There was no way bikes were going up this hill. Zachary went first.....
And then of course little sister had to follow so Daddy went with her holding her hand to keep her safe.
After all the hiking and biking we headed home and here is where you finally get to see me giving my big brave girl some kisses. Zachary is the camera man for this shot. He did a great job didn't he?
Not to be remiss in sharing a very monumental detail in Zachary's life...... he lost his first tooth. Bottom left. He's a big kid now!
Here's a close up!
All showered and cleaned up after the big adventure!
Tuesday, November 27, 2012
Cardiology Appointment
Anna Grace saw Dr R today for a cardiology check up. Her O2 sats are 88 and her blood pressure is good. The echo showed good heart function and everything looked "normal". We did give her adivan this morning before the appointment to help calm some of her anxiety since Dr R also had to pull some stiches today. She didn't enjoy having the stiches pulled and cried and was upset during that, but recovered pretty quickly.
Overall it was a good appointment. He decreased her lasix from 3 times a day to 2 times a day. We go back in two weeks. She needs another chest xray in 2 weeks and then hopefully we can decrease her lasix to only once a day.
She still hasn't had a proper shower because Dr R wants her to just have a sponge bath for now. She is a pretty stinky girl. She also has decided that she only wants to wear pajamas and we have allowed that - so - since her surgery she has only worn pajamas - everywhere - all day.
She lost 3 pounds during our time in Charleston and we are working on gaining that back - so we have been allowing lots of brownies, cookies, chocolate, etc. I am happy to say that the wonderful families who have been bringing us meals have also been bringing lots of desserts too so I am hopeful that she will regain her 3 pounds quickly.
The remainder of today will be spent at home hopefully resting. Overall, today's appointment was good and we are thankful. It is a blessing and a gift from the Lord and we do not take it for granted, not one bit.
Thank you for continuing to pray for our girl :)
Overall it was a good appointment. He decreased her lasix from 3 times a day to 2 times a day. We go back in two weeks. She needs another chest xray in 2 weeks and then hopefully we can decrease her lasix to only once a day.
She still hasn't had a proper shower because Dr R wants her to just have a sponge bath for now. She is a pretty stinky girl. She also has decided that she only wants to wear pajamas and we have allowed that - so - since her surgery she has only worn pajamas - everywhere - all day.
She lost 3 pounds during our time in Charleston and we are working on gaining that back - so we have been allowing lots of brownies, cookies, chocolate, etc. I am happy to say that the wonderful families who have been bringing us meals have also been bringing lots of desserts too so I am hopeful that she will regain her 3 pounds quickly.
The remainder of today will be spent at home hopefully resting. Overall, today's appointment was good and we are thankful. It is a blessing and a gift from the Lord and we do not take it for granted, not one bit.
Thank you for continuing to pray for our girl :)
Sunday, November 25, 2012
Just Had to Share This
Thanksgiving
We were able to be home for Thanksgiving! It was an unexpected and welcomed blessing! While my heart was joyful to be home with my family I also spent the day remembering the families we had met at the hospital who were still there having to spend Thanksgiving at MUSC. My heart aches for them and I pray that the Lord allows them to be home and settled before Christmas!
Since our week has been such a whirlwind I was in no way prepared to cook a Thanksgiving meal! So, a very, very sweet couple from our Church arranged to have meals brought to our family for the next two weeks, and that INCLUDED a meal on Thanksgiving Day! Yes, a generous family in our Church brought us over a smoked turkey and another family brought all the sides to go along with it! Mee-Maw, Pops, Mee-Mee and Grandpop joined us at our hone on Thanksgiving as well and there was plenty of food for everyone. It was such a blessing. It was a relatively quite day. The gandparents were only over for a couple hours. We ate and then played charades and then it was time for our little girl to try to get some rest. It was a quiet day by most people's standards, but it was a really big day for Anna Grace.
As for Anna Grace - she is starting to act like herself again and has even started sleeping through the night again (thank you Lord)! Now that she is sleeping through the night again I have returned to my bed (as opposed to the floor in AG's room where I had been sleeping). I still don't feel llike I have caught up on all the sleep I missed while in Charleston!
It has only been a little more than 2 weeks since her surgery, but already Anna Grace wants to ride her brother's bike, climb and swing on the trapeeze bar and has even asked to jump on the trampoline. All of these activites are of course off limits for the next 8 weeks!!!!! I have not been giving her any pain medication - only Tylenol at bedtime and she doesn't seem to be in any pain what-so-ever. It is really quite amazing to see her bounce back so quickly! The trouble will be continuing to hold her back for the next 8 weeks. Will it even be possible?????
Please do continue praying for her (1) for no infecftion, (2) ahe has a chest xray on Monday morning - pray that the reulsts would show no fluid build up and that she would be calm and tolerate the xray (3) she has a cardiology appointment on Tuesday please pray that her echo shows good heart function and that everything looks "normal" and that she will cooperate for the echo and for the removal of the stitches.
Thank you friends for continuing to follow our story. I will post on Tuesday after her appointment and let you know what Dr R says :)
Since our week has been such a whirlwind I was in no way prepared to cook a Thanksgiving meal! So, a very, very sweet couple from our Church arranged to have meals brought to our family for the next two weeks, and that INCLUDED a meal on Thanksgiving Day! Yes, a generous family in our Church brought us over a smoked turkey and another family brought all the sides to go along with it! Mee-Maw, Pops, Mee-Mee and Grandpop joined us at our hone on Thanksgiving as well and there was plenty of food for everyone. It was such a blessing. It was a relatively quite day. The gandparents were only over for a couple hours. We ate and then played charades and then it was time for our little girl to try to get some rest. It was a quiet day by most people's standards, but it was a really big day for Anna Grace.
As for Anna Grace - she is starting to act like herself again and has even started sleeping through the night again (thank you Lord)! Now that she is sleeping through the night again I have returned to my bed (as opposed to the floor in AG's room where I had been sleeping). I still don't feel llike I have caught up on all the sleep I missed while in Charleston!
It has only been a little more than 2 weeks since her surgery, but already Anna Grace wants to ride her brother's bike, climb and swing on the trapeeze bar and has even asked to jump on the trampoline. All of these activites are of course off limits for the next 8 weeks!!!!! I have not been giving her any pain medication - only Tylenol at bedtime and she doesn't seem to be in any pain what-so-ever. It is really quite amazing to see her bounce back so quickly! The trouble will be continuing to hold her back for the next 8 weeks. Will it even be possible?????
Please do continue praying for her (1) for no infecftion, (2) ahe has a chest xray on Monday morning - pray that the reulsts would show no fluid build up and that she would be calm and tolerate the xray (3) she has a cardiology appointment on Tuesday please pray that her echo shows good heart function and that everything looks "normal" and that she will cooperate for the echo and for the removal of the stitches.
Thank you friends for continuing to follow our story. I will post on Tuesday after her appointment and let you know what Dr R says :)
Thursday, November 22, 2012
The Rest of the Story
Sory about the lack of blog posts recently. I know you all want to know how we ended up from having tachicardia to lots of drainage to home so quickly. As far as I'm concerned it is nothing short of the Divine hand of the Lord intervening!
So, as you already know Friday AG had one chest tube removed. The other two chest tubes were still draining. Friday night those two chest tubes stopped draining. Amazing!
Saturday morning AG ate fat for the first time. This is significant because chylothorax will not present until fat is eaten. So, Saturday morning AG ate a scrambled egg and a peice of bacon. Around noon Saturday Dr. Bradley and the attending physician came in and said they wanted to pull the remaining two chest tubes. I explained that AG had just eaten fat for the first time that morning and I was concerned about chylothorax. After some discussion, the agreed to leave the chest tubes in for another 24 hours to see what happened. Things stayed status quo for the remainder of Saturday. Sunday morning came and there was still no chest tube drainage from the remaining two tubes and nothing which appeared to be chylothorax. Around noon Dr. Bradley and the attending physician came back in and said it was time for the chest tube pulls and then if the chest xray after the pulls looked good then they would discharge us that very day. It was a whirlwind! (Let me stop here for a moment and say that AG had chylothorax her first two surgeries and everyone expected her to have it this third surgery as well - I know so many of you were praying about that and the Lord protected her from the cylothorax with not a sign of it at all)!
The two remaining chest tube pulls were brutal. She remembered from Friday since they don't put them to sleep to do it. I was in the room with her holding her down and trying to comfort her during the pull. Brutal is the only word I have to describe this. After the two chest tube pulls then the nurses came in to remove the IJ line from her neck. An IJ is kind of like an IV, but it goes into the jugular in the neck and it is sutured in so that you won't lose it. It's bigger than an IV but the concept is the same. You can administer IV medication through it and you can also do blood pulls through it so that she doesn't have to be stuck everytime they need labs. It's handy in that way, but it is brutal to remove. So again, there I was holding her down and still so that they could remove the sutures from her neck and pull the IJ. My poor poor baby had been through so much. It was painful to watch her pain and fear in light of so much being done to her.
After those removal there was just one last thing that had to be removed, it was the IV in her hand. That went pretty quickly and mostly painlessly - at least compared to everthing else.
She still had about 25 stickers and badages on her chest which they wanted to remove and I said just leave them. I'll remove them once home - I thought she had been through enough.
The chest x-ray people showed up next for a 2 view chest xray. We had to wait about 3 hours after that was done to have it read and finally hear back from the doctor that we had the all clear to leave. After signing and reviewing discharge paper work we were free to go.
While all of the medical stuff was going on Sunday, Brian and Miss Lauren and Zachary were back at the townhouse frantically washing sheets and cleaning up in preparation for our departure. They called me about 4:30 and told me they were finished and at about 5:00 AG and I got discharged so the timing worked out great. They drove to the hospital and picked us up and we got on the road about 5:30 pm.
Brian drove the car and Miss Lauren and I drove the van with the kids. AG did not do well on the car ride home. She cried and was very uncomfortable until she finally fell asleep. It was a welcomed thing for everyone! Once home that night she was very fussy and disoriented, but by about midnight I think she finally figured out where we were and that we were home. She settled down and slept for the night. I slept on the floor in her room that night and it was terrific. to be home again! I do want to stop and mention here that when we walked in our dorr at home after 2 weeks of being gone my house was spotless and clean. A dear friend from Church had come over Sunday afternoon and cleaned my entire house, made a huge welcome home banner and another dear friend had brought some moeny for take-out since we hadn't stopped for dinner that night. They thought of everything! I hadn't cleaned before I left so what a blessing to come home to srubbed toilets and bathtubs and floors!!!!!! I know all the Moms reading this will appreciate what an awesome gif tthis is!
We spent the entire dayMonday unpacking and removing stickers and bandages from AG's chest. The bandage removal was terrible, she writhed and screamed upon each bandage removal. We were able to remove all the bandages except one - we just couldn't go on.
Tuesday morning we headed to Dr. R's office. She was very scared and other than him asking us to remove the last remaining bandage and then listening to her heart he didn't do much. He prescribed a one time does of adivan for us to give her next Tuesday and asked us to come back next week so he could remove the stitches and do a chest xray and echo. Next week will be a big appointment.
Since we've been home AG has started walking again although she is still unsteady on her feet. She lost 3 pounds while in the hospital so she is still weak. She has begun eating again and she is pooping regularly again. She is still fussy, but you can tell she is starting to feel better every day.
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Our Church has been fantastic about bringing us meals since we have been home so we haven't had to go to the store for anything other than bread and milk. It has been such a blessing to not have to think about cooking and meal planning in the midst of all of this.
Brian has been actively searching for a puppy for AG. She hasn't forgotten about it and asks about her dog everyday.
AG is still not sleeping great at night, but I think it's just going to take her some time. She has been through so much. The Lord has been so gracious and merciful to Anna Grace and our family during this whole journey - He has met and supplied for every want and need we have had and we are grateful. He has healed AG's body in a miraculous way and amazed and astounded us all. He has held us and comfortaed us and sustained us during those two scary days when AG was having tachicardia and no one was sure why. He kept us awake and functioning during days with no significant sleep to speak of. The Lord has placed people in our path during just the right time to minister to us - a big shout out here to Crossbridge ministiries - who I can not imagine thraveling this journey without. It is a hard journey, but we are not overcome.
Please continue to pray for no infection. Although we are home she is still fragile and I certainly do not want to have to take her back to the hospital. Please pray that things look good on Tuesday and that the Lord will remove the fear she has and that she will again begin to feel safe and secure.
We have much to be thankful for today. We are certainly thankful for all of your prayers, friendship and encouragement! May the Lord be Glorfied through our story!
So, as you already know Friday AG had one chest tube removed. The other two chest tubes were still draining. Friday night those two chest tubes stopped draining. Amazing!
Saturday morning AG ate fat for the first time. This is significant because chylothorax will not present until fat is eaten. So, Saturday morning AG ate a scrambled egg and a peice of bacon. Around noon Saturday Dr. Bradley and the attending physician came in and said they wanted to pull the remaining two chest tubes. I explained that AG had just eaten fat for the first time that morning and I was concerned about chylothorax. After some discussion, the agreed to leave the chest tubes in for another 24 hours to see what happened. Things stayed status quo for the remainder of Saturday. Sunday morning came and there was still no chest tube drainage from the remaining two tubes and nothing which appeared to be chylothorax. Around noon Dr. Bradley and the attending physician came back in and said it was time for the chest tube pulls and then if the chest xray after the pulls looked good then they would discharge us that very day. It was a whirlwind! (Let me stop here for a moment and say that AG had chylothorax her first two surgeries and everyone expected her to have it this third surgery as well - I know so many of you were praying about that and the Lord protected her from the cylothorax with not a sign of it at all)!
The two remaining chest tube pulls were brutal. She remembered from Friday since they don't put them to sleep to do it. I was in the room with her holding her down and trying to comfort her during the pull. Brutal is the only word I have to describe this. After the two chest tube pulls then the nurses came in to remove the IJ line from her neck. An IJ is kind of like an IV, but it goes into the jugular in the neck and it is sutured in so that you won't lose it. It's bigger than an IV but the concept is the same. You can administer IV medication through it and you can also do blood pulls through it so that she doesn't have to be stuck everytime they need labs. It's handy in that way, but it is brutal to remove. So again, there I was holding her down and still so that they could remove the sutures from her neck and pull the IJ. My poor poor baby had been through so much. It was painful to watch her pain and fear in light of so much being done to her.
After those removal there was just one last thing that had to be removed, it was the IV in her hand. That went pretty quickly and mostly painlessly - at least compared to everthing else.
She still had about 25 stickers and badages on her chest which they wanted to remove and I said just leave them. I'll remove them once home - I thought she had been through enough.
The chest x-ray people showed up next for a 2 view chest xray. We had to wait about 3 hours after that was done to have it read and finally hear back from the doctor that we had the all clear to leave. After signing and reviewing discharge paper work we were free to go.
While all of the medical stuff was going on Sunday, Brian and Miss Lauren and Zachary were back at the townhouse frantically washing sheets and cleaning up in preparation for our departure. They called me about 4:30 and told me they were finished and at about 5:00 AG and I got discharged so the timing worked out great. They drove to the hospital and picked us up and we got on the road about 5:30 pm.
Brian drove the car and Miss Lauren and I drove the van with the kids. AG did not do well on the car ride home. She cried and was very uncomfortable until she finally fell asleep. It was a welcomed thing for everyone! Once home that night she was very fussy and disoriented, but by about midnight I think she finally figured out where we were and that we were home. She settled down and slept for the night. I slept on the floor in her room that night and it was terrific. to be home again! I do want to stop and mention here that when we walked in our dorr at home after 2 weeks of being gone my house was spotless and clean. A dear friend from Church had come over Sunday afternoon and cleaned my entire house, made a huge welcome home banner and another dear friend had brought some moeny for take-out since we hadn't stopped for dinner that night. They thought of everything! I hadn't cleaned before I left so what a blessing to come home to srubbed toilets and bathtubs and floors!!!!!! I know all the Moms reading this will appreciate what an awesome gif tthis is!
We spent the entire dayMonday unpacking and removing stickers and bandages from AG's chest. The bandage removal was terrible, she writhed and screamed upon each bandage removal. We were able to remove all the bandages except one - we just couldn't go on.
Tuesday morning we headed to Dr. R's office. She was very scared and other than him asking us to remove the last remaining bandage and then listening to her heart he didn't do much. He prescribed a one time does of adivan for us to give her next Tuesday and asked us to come back next week so he could remove the stitches and do a chest xray and echo. Next week will be a big appointment.
Since we've been home AG has started walking again although she is still unsteady on her feet. She lost 3 pounds while in the hospital so she is still weak. She has begun eating again and she is pooping regularly again. She is still fussy, but you can tell she is starting to feel better every day.
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Our Church has been fantastic about bringing us meals since we have been home so we haven't had to go to the store for anything other than bread and milk. It has been such a blessing to not have to think about cooking and meal planning in the midst of all of this.
Brian has been actively searching for a puppy for AG. She hasn't forgotten about it and asks about her dog everyday.
AG is still not sleeping great at night, but I think it's just going to take her some time. She has been through so much. The Lord has been so gracious and merciful to Anna Grace and our family during this whole journey - He has met and supplied for every want and need we have had and we are grateful. He has healed AG's body in a miraculous way and amazed and astounded us all. He has held us and comfortaed us and sustained us during those two scary days when AG was having tachicardia and no one was sure why. He kept us awake and functioning during days with no significant sleep to speak of. The Lord has placed people in our path during just the right time to minister to us - a big shout out here to Crossbridge ministiries - who I can not imagine thraveling this journey without. It is a hard journey, but we are not overcome.
Please continue to pray for no infection. Although we are home she is still fragile and I certainly do not want to have to take her back to the hospital. Please pray that things look good on Tuesday and that the Lord will remove the fear she has and that she will again begin to feel safe and secure.
We have much to be thankful for today. We are certainly thankful for all of your prayers, friendship and encouragement! May the Lord be Glorfied through our story!
Monday, November 19, 2012
We are home
It has been a whirlwind 48 hours and there is so much to share, but for now we've got our hands pretty full with trying to get things settled back at home so the detailed post will have to come in a few days but for now.....
Quick update. We got home last night about 8:00 pm. AG is starting to act like her old self again. She slept in her bed and I slept on the floor in her room. Best sleep I've had in 2 weeks. Seriously. We see her cardiologist Tuesday for a chest x-ray, echo and ekg. He will also be removing some stiches tomorrow. Pray that everything looks normal. I'll post in more detail later.... thank you for praying! The Lord has answered so many prayers in such a tangible way and we are so, so so very thankful :)
Quick update. We got home last night about 8:00 pm. AG is starting to act like her old self again. She slept in her bed and I slept on the floor in her room. Best sleep I've had in 2 weeks. Seriously. We see her cardiologist Tuesday for a chest x-ray, echo and ekg. He will also be removing some stiches tomorrow. Pray that everything looks normal. I'll post in more detail later.... thank you for praying! The Lord has answered so many prayers in such a tangible way and we are so, so so very thankful :)
Friday, November 16, 2012
Chest Tube Being Removed
Anna Grace's doctor told us yesterday that from what he was seeing her chest tubes weren't going to be coming out any time soon. However though the night one of the chest tubes stopped draining. At one point the nurse sent a doctor in to look at it to see if she saw any blockages. She said she didn't see any, but that she would make sure they stripped the chest tubes in the morning in order to clear any blockages in them. Everyone was certain it wasn't draining becaue it was blocked. About 5:00 this morning a chest xray was taken to see if there was fluid accumulating in her chest due to the "blockage". Once the attending doctor arrived this morning he looked at the chest xray and said there wasn't any fluid accumulating. They stripped her chest tubes and there was no blockage. He said he was wrong yesterday and that one of her chest tubes could indeed be removed today along with her pacing wires.I said, "Would you say it was miraculous?" He said, "I wouldn't say it was miraculous, but I would say it was amazing." Well, I am amzazed at this miracle of healing the Lord has performed for Anna Grace over the last 24 hours. I am almost in tears thinking of how great a blessing he has bestowed on sweet Anna Grace and I am thankful for the prayers of so many of you. Thank you friends. May the Lord be glorified through this amazing act and may your Faith in the Lord's healing power be strengthened because of it.
She still has two chest tubes in so we need to conrinue to pray for the draingage from those to stop and she has also been throwing up today when taking her meds. I think perhaps because she really doesn't have any food on her stomach so please pray for increased appetite and for the Lord to allow her to have a settled stomach when its time for meds.
Please pray for her this afternoon during the removal of the chest tube and pacing wires. She wil be given morphine and versed for the procedure but she will be awake and I won't be able to be with her.
Please pray for coontinued healing and for no infection and no chylothorax.
Thank you friends, I will keep you updated.
She still has two chest tubes in so we need to conrinue to pray for the draingage from those to stop and she has also been throwing up today when taking her meds. I think perhaps because she really doesn't have any food on her stomach so please pray for increased appetite and for the Lord to allow her to have a settled stomach when its time for meds.
Please pray for her this afternoon during the removal of the chest tube and pacing wires. She wil be given morphine and versed for the procedure but she will be awake and I won't be able to be with her.
Please pray for coontinued healing and for no infection and no chylothorax.
Thank you friends, I will keep you updated.
Thursday, November 15, 2012
On 8D
Today Anna Grace was transfered out of PCICU to 8D. She now has her own room with a door which affords a lot more privacy. There is also a lot of freedom here to put her in a wagon and head to the playroom. She was able to go to the playroom 3 times today which is great for her. Just the kids, toys and change of scenery seem to help her.
She still has 3 chest tubes (and a lot of other tubes and wires in her) and according to the doctor they're not coming out any time soon. Please continue to pray, pray, pray, pray a miraculous healing for her with the chest tube drainage. She is so scared of the chest tubes and they are very painful.
She hasn't eaten a whole lot today. Just a few cookies and a few bites of banana. Please oray that her appetite increases. We really still dont know about chylothorax because she hasnt really eaten anything with a lot of fat in it so please continue to pray against chylothorax.
A praise from yesterday is that AG pooped today. It might not seem that significant, but i promise it is a big deal. Thank you for praying about that.
Right now it is 10:00 pm and she is sleeping. We will have to wake her every 4 hours tonight for meds and vitals so it will probably be a very long night, but we are still so very thankful to be where we are right now. We know AG still has quite a journey ahead, but we are thankful. Thank you friends for praying.
She still has 3 chest tubes (and a lot of other tubes and wires in her) and according to the doctor they're not coming out any time soon. Please continue to pray, pray, pray, pray a miraculous healing for her with the chest tube drainage. She is so scared of the chest tubes and they are very painful.
She hasn't eaten a whole lot today. Just a few cookies and a few bites of banana. Please oray that her appetite increases. We really still dont know about chylothorax because she hasnt really eaten anything with a lot of fat in it so please continue to pray against chylothorax.
A praise from yesterday is that AG pooped today. It might not seem that significant, but i promise it is a big deal. Thank you for praying about that.
Right now it is 10:00 pm and she is sleeping. We will have to wake her every 4 hours tonight for meds and vitals so it will probably be a very long night, but we are still so very thankful to be where we are right now. We know AG still has quite a journey ahead, but we are thankful. Thank you friends for praying.
Wednesday, November 14, 2012
I have a moment
I have a moment to make a blog post because Anna Grace is finally sleeping. It is the first time she has slept since surgery that it hasn't been forced sleep due to morphine and versed. For the last two days Anna Grace has experienced tachycardia which means her heart rate is super high. It wasn't just episodes of high heart rate it just got to 190 and stayed there. The doctors were puzzled. The did two echos, two chest X-rays, two EKGs and everything looked fine. They thought maybe infection might be the cause but she wasn't running a high fever so they cultured blood. All the while AG is saying over and over again non stop "I'm scared, I'm scared, I'm scared". For the last two days almost constantly.
We had a few heated discussions with the staff and finally last night dr Bradley came in and we talked about what he thought might be the cause. Afterd a lengthy discussion we decided to start her on an anxiety medication called Ativan for the next 24 hours to see if it brought her heart rate down. He said he didn't think anxiety would make it that high and they had never had a patient experience anxiety severe enough to warrant a continued -95 heart rate butt it was a first step in trying to figure out the cause. She has been on the medication now for about 16 hours and her heart rate has been in the 129's. She has still gotten scared and upset but we have been able to console her. She was even able to go to the playroom this morning for an hour. They never let ICUs kids go to the playroom but given her severe anxiety they thought it would do her good and it did.
So today everyone agrees it was caused from anxiety. We don't plan on staying on Ativan forever but while in the hospital I think we will keep it on board.
She is still having a high chest tube output. She has three chest tubes in right now and they can't be removed until the drainage stops. Please pray pray pray pray for it to stop soon. They are painful and scary.
The doc said they would not normally send a child to the floor with the amount of chest tube drainage she is having but given here severe anxiety they feel she will do better there. So the plan is as soon as a bed becomes available on 8d they will send us to the floor. That doesn't mean she is close to being ready for home but we are all hoping it will be less scary for her than the icy.
So, please continue to pray for her anxiety, for her to sleep well, for her to eat. Poop, and for the chest tube drainage to stop.
Brian is going to try to sleep tonight somim pulling the all nighter tonight. So.... Pray for me too,
Zachary has been handling everything great. He has made friends withbthe entire staff at the hospital playroom and they live him. Still zero anxiety or questions from him about all the very sick kids he sees in the playroom. That is a huge praise. He said today he never wants to leave..... Sorry buddy.... But we aren't staying any longer than we have to,
We had a few heated discussions with the staff and finally last night dr Bradley came in and we talked about what he thought might be the cause. Afterd a lengthy discussion we decided to start her on an anxiety medication called Ativan for the next 24 hours to see if it brought her heart rate down. He said he didn't think anxiety would make it that high and they had never had a patient experience anxiety severe enough to warrant a continued -95 heart rate butt it was a first step in trying to figure out the cause. She has been on the medication now for about 16 hours and her heart rate has been in the 129's. She has still gotten scared and upset but we have been able to console her. She was even able to go to the playroom this morning for an hour. They never let ICUs kids go to the playroom but given her severe anxiety they thought it would do her good and it did.
So today everyone agrees it was caused from anxiety. We don't plan on staying on Ativan forever but while in the hospital I think we will keep it on board.
She is still having a high chest tube output. She has three chest tubes in right now and they can't be removed until the drainage stops. Please pray pray pray pray for it to stop soon. They are painful and scary.
The doc said they would not normally send a child to the floor with the amount of chest tube drainage she is having but given here severe anxiety they feel she will do better there. So the plan is as soon as a bed becomes available on 8d they will send us to the floor. That doesn't mean she is close to being ready for home but we are all hoping it will be less scary for her than the icy.
So, please continue to pray for her anxiety, for her to sleep well, for her to eat. Poop, and for the chest tube drainage to stop.
Brian is going to try to sleep tonight somim pulling the all nighter tonight. So.... Pray for me too,
Zachary has been handling everything great. He has made friends withbthe entire staff at the hospital playroom and they live him. Still zero anxiety or questions from him about all the very sick kids he sees in the playroom. That is a huge praise. He said today he never wants to leave..... Sorry buddy.... But we aren't staying any longer than we have to,
Being Pressed
Where to begin?
They stopped the IV sedation Monday morning and this caused Anna' anxiety to sky rocket throughout Monday. Her heart rate started trending at 180 to 195. They decided to put her back on it Monday night and try to slowly ween her off. Apparently sometimes children have a hard time coming off this sedation medicine cold turkey we are told.
As soon as they started the drip again her HR dropped. She relaxed and was off to sleep with the help of some pain meds. Her nurse Monday night was someone who had her back in early 2010 and we felt very comfortable with her. Anna was going to be her only patient so we left for the evening for some sleep.
Tina was back up at the hospital early Tuesday around 5am. Anna did fine through Monday night into early Tuesday morning. I received a text from Tina around 8am Tuesday saying Anna' HR was around 110 and she was doing fine. She had eaten breakfast and it was looking good we were going to get out of PCICU.
They turned the IV sedative - the one that caused Anna' HR to climb - off at 7am Tuesday morning after taking her down on the dosage and her HR started to climb again. As Anna' HR climbed so did her anxiety. She became more and more unable to be consoled.
After a discussion with with the doctor on the floor we were able to get her some medicine to calm her down. This did not last long though and she was shortly again trending around the high 180's to 190's.
Anna was sedated again and they did an ECHO and EKG. Her heart function looked good but fast. Really fast. As the sedation wore off her HR would climb and her anxiety would increase. As her anxiety increased so did ours. It's tough seeing your child who just 4 days ago had open heart surgery, and then have her heart race like a Formula One race car. They also took some blood and sent it off to be checked for an infection. Things had turned and now we were staying in the PCICU.
Anna' condition became so out of control at the height of her last episode Tuesday afternoon, it seemed she was almost out of her mind. She wanted to go home one minute and then wanted to never go home the next. She wanted us to leave and then she wanted everyone to come. She wanted the doctor and then didn't want the doctor. Every single little thing bothered her. She was frightened and thought there were monsters and big foot in the room after her. Was it anxiety or stubbornness? Probably a little of both. Either way, Tina and I were about done in. Only by God's grace did we not lose it and come undone.
After asking for prayer from friends and family Dr. Bradley her surgeon showed up. He suggested getting her on Ativan (anti anxiety). An answered prayer and much needed. We almost broke down right there in Anna' room. Dr. Bradley said he was concerned about her high HR, especially since her ECHO and EKG looked good. He said we would just have to wait and see.
Within minutes of Dr. Bradley leaving Anna had been given enough medicine to put her into a very stable and much needed REM state. Her HR dropped and she was finally resting peacefully. We understand she cannot come home this way but she needed to rest.
Tina and I headed home to see Zachary and have a bite to eat around 8pm Tuesday. Tina decided to stay home and get a good nights rest, while I decided to come back up to sit with Anna. I found Anna still sleeping with a very nice low HR. At the posting of this she has a few times been frustrated upon waking up, but her HR is staying better overall. Keeping her heart rate lower will help in the long run. We are hopeful and praying Wednesday will not be as pressing as the last few days.
Monday, November 12, 2012
3 Days Post-Op
Blog Update for Monday
Yesterday evening was a tough night for us and the PCICU. We had two babies lose their battle with heart defects. A stark reminder these babies are very sick and that we live in a very broken world caused by our sin. Sometimes the Lord's providence is deep, dark and very painful. But, we take heart in knowing God is good and His purposes, although sometimes very hard to understand, are working all things to glorify His name and for the ultimate good of His children. We are learning what it means to be "as sorrowful, yet always rejoicing" (2Cor.6:10) in a very tough way. Our prayers go out for these families who are having to deal with the sorrow of losing their children.
They shut down the PCICU last night at 11pm and did not re-open until early this morning around 5am. We were forced to leave, which is always vey tough. Having to leave however did allow both Tina and I sometime to catch up on our sleep. This was much needed. A blessing wrapped in grief.
Anna had an ok night from what we can gather from her nurse. She was in and out most of the night and needed only once to have some versed. She is still having a tough time staying calm.
I arrived at the hospital around 6:45am and found Anna sleeping. Her sleep was accompanied with slight soft moans that would come about every 3 to 5 minutes. It was very difficult to listen to but the Lord sustained me. Her nose O2 tubing had worked itself loose and really was not giving her much assistance. Her O2 sats were staying pretty stable trending in the mid 80's.
She woke up around 8am in a pretty good mood. She indicated she was hungry so I tried to flag her nurse down. Her nurse was tending to another patient, so a different nurse who was working the desk area came over. The nurse, in an attempt to help Anna, tried to get the O2 nose tube back on her nose. Not a good idea. This really upset Anna and she got so worked I thought we were going to have to drug her again. Now I'm not a very good singer, but my soft rendition of Jesus Loves Me seemed to calm her down and she dozed back off to sleep again. This was mercy, for Anna really more than me. Like I said, I really am a poor, poor singer.
She woke up during the doctors making their rounds, and I was able to sing her back to sleep again. Basically her doctors were pleased with her progress for the most part. They said she was doing pretty well, and her fluid drainage was slightly decreased, but they were concerned she was having to be sedated to stay calm. They decided she should stay in the PCICU for at least another day. I was disappointed, but am trusting this is the Lord's doing.
The next time she woke up we (the head nurse and I) could not not get her to calm down. She was having none of her daddy's singing this go around. She wanted to be picked up and held and she wanted mommy, who was on her way. Her heart rate went way up and her O2 sat went way down. The head nurse said lets get her calm and she was given a dose of verse and some morphine. That did the trick. She was asleep in less than 5 minutes.
She slept for about 15 mins and then woke up and was ready to eat. We kicked in a good old Boz DVD and enjoyed some strawberries bananas,, toast, yogurt and ice chips. We even had a few laughs at Boz and she seemed sort of happy. The verse no doubt. But it made me feel better.
Tina arrived before she finished eating and was greatly welcomed. By both Anna and me. This was around 10:15. Tina was able to hold Anna for about 5 minutes. Like we suspected it caused her a great deal of pain. But, in the pain came some good as it helped her release some fluid drainage which we are told is a good thing.
She received some morphine and was put back into bed. After a short time she dozed off again. Upon awaking she started crying and asking to go home. She said she was sacred, which breaks our hearts (no pun intended).
Tina has been sitting with Anna for the last few hours. She has been able to keep her from getting extremely upset however, they locked the unit down as they were getting a patient settled in from surgery which means Tina was asked to leave the unit for a while. Anna Grace was then inconsolable and again had to be given versed.
Prayer request are:
For Anna' anxiety to subside
For chest tube drainage to dry up
For no Chylothorax
For no infections
For overall strength
We are grateful for your prayers. Thank you!!!
The Bentleys
Sunday, November 11, 2012
Sunday
Anna Grace has made some progress today and had a setback as well. The night went fairly well. She only got agitated once last night and was calmed with versed. She did take a couple of sips of water for me during the night. She spiked a temp last night so Tylenol was given and brought it down. Brian arrived back at the hospital about 5:00 am and then I left for a few hours of sleep.
While Brian was with her she are some applesauce and 2 strawberries! That was a huge answered prayer and she did not vomit after eating which is another huge praise.
Anna Grace has remained stable and much more calm today when she wakes up. Although, whenever she is awake she just says "I want to go home" in the most pitiful little voice yiu've ever heard. Poor baby!
The surgeon on call, Dr K, pulled AG's RA lines today and a monitor which has been taped to her forehead has also been removed. It's a great thing to see a few of these lines leaving her.
The thing which has been a bit of a setback is all the chest tube drainage. She currently has 3 chest tubes and they are all draining a lot. More than the doctors would like. They started a medication today that might help that and will reevaluate tomorrow. They said they would not send her to the floor ubtil that dimishes at least some. So PLEASE pray for the drainage to diminish or stop all together.
I was also told that due to the amount of drainage she's having it is highly likely she has chylothorax but we won't know for sure until she starts eating foods which contain fat. I have a couple ideas that I'm going to throw the doctors way about this, but I'll save that for later after I talk with them.
So, the last 24 hours have been full of praises and prayer requests. Thank you all for faithfully praying for our little girl. I'll keep you posted,
While Brian was with her she are some applesauce and 2 strawberries! That was a huge answered prayer and she did not vomit after eating which is another huge praise.
Anna Grace has remained stable and much more calm today when she wakes up. Although, whenever she is awake she just says "I want to go home" in the most pitiful little voice yiu've ever heard. Poor baby!
The surgeon on call, Dr K, pulled AG's RA lines today and a monitor which has been taped to her forehead has also been removed. It's a great thing to see a few of these lines leaving her.
The thing which has been a bit of a setback is all the chest tube drainage. She currently has 3 chest tubes and they are all draining a lot. More than the doctors would like. They started a medication today that might help that and will reevaluate tomorrow. They said they would not send her to the floor ubtil that dimishes at least some. So PLEASE pray for the drainage to diminish or stop all together.
I was also told that due to the amount of drainage she's having it is highly likely she has chylothorax but we won't know for sure until she starts eating foods which contain fat. I have a couple ideas that I'm going to throw the doctors way about this, but I'll save that for later after I talk with them.
So, the last 24 hours have been full of praises and prayer requests. Thank you all for faithfully praying for our little girl. I'll keep you posted,
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