I took Maya to Kids Kare today for a quick visit. All her friends were working on a BIG purple get well poster when we got there. It was so sweet to see they were all happy to see her. She only made it a few days before her surgery and was a little hesitant to return, but once we were there she fell right into place.
We listened to Ms. Candy read a story about fall and then it was off for a mini recess. Her friend Alisandra was so sweet... she took Maya by the hand and we headed over to the swings. She also played on the play scape and went down a few slides. I think being in the environment with the other kids was really good for her.
She also got see all the other teachers that love her so much- I think it was good for everyone to see how well she is doing. Words like "stroke" are scary, and people are amazed how able she is.
Having said that, here's a little video of her playing the candy corn game (working on her left fine motor skills).
I wish I had some pictures to post of her day at school, but right now juggling her and the camera just isn't option :)
We see the doctor at 2:40, so hopefully I will have some good news to report later today! That's all for now...
Tuesday, October 5, 2010
Monday, October 4, 2010
Getting Caught Up
Well, we are finally starting to get a little settled in... Parker came home yesterday and it was nice to have us all together in one place. Maya is sleeping well for the most part, but we have to wake her up at 11pm and give her a dose of Motrin for inflammation. After that, she complains of of her arm and leg itching. To make matters worse, she has massive rashes from all the tape that held the lines into her little body... I guess her skin is too sensitive for that sticky stuff. Poor thing! Usually a little coaxing can get her back down, but she's been through so much- I'm just ready for her to be able to sleep in comfort.
We had a lazy Sunday, considered church but didn't think Maya is quite ready for that. Instead we caught up on sleep and worked most of the day on her fine motor skills. Yay Play-dough! Kevin took Rain to the farm for some Daddy time, which I think she thoroughly enjoyed. Then my friend Ame came over and brought Honey Baked ham, mac-n-cheese, croissants and lemon pie. Yum-my!
We had some visitors here and there and I think Maya has really enjoyed the attention. It makes her feel very special and loved. Our friends have been so generous with the notes and gifts--our house looks like a birthday party and Christmas put together!
Today we headed to H-E-B for a big out-of-the-house adventure. We picked up some Playdough ingredients. Ame had made some homemade dough for Maya and she just loved it! She emailed me the recipes and we were off and cooking. Maya's first request was the edible kind, so we turned this
into this! A darling gift arrived from the Urbanczyk's and it was just perfect for her new edible dough adventure. A mixing bowl, wooden spoon, rolling pin and oven mitt... in purple of coarse!
Here's one of Maya stirring the pot... she's doing really well.
We also had a visit from Ms. Candy, Maya's teacher at Kids Kare. Maya thought it was so neat that her teacher came by to bring her a gift and see how she was doing. It's always funny to watch kids when they see their teachers outside of school... I guess they assume that that is where they live:) Anyway, it made Maya's day to have that special visit.
Overall, I think she has improved some since even yesterday. We do have some concerns about her shoulder as today I noticed it started to droop more. Sure enough, Kevin sent me this and when he got home we figured out her shoulder has been dislocated. He popped it back in and it stayed for now, but who knows how long it will stay put. We have a doctor's appt. tomorrow to set up PT/OT and I can't wait to get started.
Thank you so much to all the folks on the Care Calendar. It is nice to able to play with Maya and keep a close eye on her instead of having to worry about what to feed my family. The Toneys brought a delicious roast over tonight-THANK YOU!! So if y'all see me and I've gained 10 pounds you know why, ha!
Well, now I'm off to make Pink Peppermint and Coconut Purple Playdough.
Wish me luck!
Brandy
We had a lazy Sunday, considered church but didn't think Maya is quite ready for that. Instead we caught up on sleep and worked most of the day on her fine motor skills. Yay Play-dough! Kevin took Rain to the farm for some Daddy time, which I think she thoroughly enjoyed. Then my friend Ame came over and brought Honey Baked ham, mac-n-cheese, croissants and lemon pie. Yum-my!
We had some visitors here and there and I think Maya has really enjoyed the attention. It makes her feel very special and loved. Our friends have been so generous with the notes and gifts--our house looks like a birthday party and Christmas put together!
Today we headed to H-E-B for a big out-of-the-house adventure. We picked up some Playdough ingredients. Ame had made some homemade dough for Maya and she just loved it! She emailed me the recipes and we were off and cooking. Maya's first request was the edible kind, so we turned this
into this! A darling gift arrived from the Urbanczyk's and it was just perfect for her new edible dough adventure. A mixing bowl, wooden spoon, rolling pin and oven mitt... in purple of coarse!
Here's one of Maya stirring the pot... she's doing really well.
We also had a visit from Ms. Candy, Maya's teacher at Kids Kare. Maya thought it was so neat that her teacher came by to bring her a gift and see how she was doing. It's always funny to watch kids when they see their teachers outside of school... I guess they assume that that is where they live:) Anyway, it made Maya's day to have that special visit.
Overall, I think she has improved some since even yesterday. We do have some concerns about her shoulder as today I noticed it started to droop more. Sure enough, Kevin sent me this and when he got home we figured out her shoulder has been dislocated. He popped it back in and it stayed for now, but who knows how long it will stay put. We have a doctor's appt. tomorrow to set up PT/OT and I can't wait to get started.
Thank you so much to all the folks on the Care Calendar. It is nice to able to play with Maya and keep a close eye on her instead of having to worry about what to feed my family. The Toneys brought a delicious roast over tonight-THANK YOU!! So if y'all see me and I've gained 10 pounds you know why, ha!
Well, now I'm off to make Pink Peppermint and Coconut Purple Playdough.
Wish me luck!
Brandy
Saturday, October 2, 2010
Home, Sweet Home
Here's Maya patiently waiting for the nurse to print the discharge papers. We told her we were going home and I think she thought, "Yeah, I believe that when I see it".
She was so good about waiting, and a pink flamingo with some beautiful flowers arrived form Uncle Bob & Aunt Betty. It was great timing and helped the with waiting. When the nurse finally came in, she was ready to go!
We put on these cute flip-flops that my friend Megan made for her and we were on our way!
Down the elevator and straight to the gift shop. We promised Maya a full shopping experience we she was done and she held us to it... we were happy to oblige:)
Here she is outside the hospital doors as we waited for daddy. She was so happy to see some real clouds, as some the ceiling tiles on her floor were painted like the sky. These were much better!
It was the longest drive home... Kevin slept maybe one hour last night and I slept a little more with Maya, but we are all worn out. I had promised Maya that I would ride home in the backseat with her and I kept my promise. Between the fatigue, my diet for the past few days and my tendency towards motion sickness, I was a mess when we got home. Luckily when my feet hit still land I recovered pretty quickly.
When we arrived there was a package on our door from The Biddison's, our neighbors, with lots of fun stuff like Play-Doh, dominos and coloring books.
Then Memaw and Pepaw brought Rain home and that was a real treat! Soon after they left, Rain's best friend and her family stopped by with a super neat Tinkerbell balloon basket filled with goodies.
I went to fill some prescriptions and when I got back Kevin was in desperate need of rest. So he is taking a nap, and I will soon feed the girls some delicious dinner from our friend Stuart. I can't wait!!
It feels so good to be home, but now that she is in her natural element, I feel like the problems are more pronounced. I honestly think that the only things that bother her right now are the symptoms from the stroke... she doesn't even blink an eye at her sternum, heart or any other area. It's hard to face that this is her reality now, and she's not just gonna spring back to her usual self. But bothers me more than it bothers her and there's something to be said for that. I have made an appt to set up physical therapy, so we can hopefully get that started right away.
For now, I am exhausted... but extremely happy to have my little girl home.
In Him,
Brandy
She was so good about waiting, and a pink flamingo with some beautiful flowers arrived form Uncle Bob & Aunt Betty. It was great timing and helped the with waiting. When the nurse finally came in, she was ready to go!
We put on these cute flip-flops that my friend Megan made for her and we were on our way!
Down the elevator and straight to the gift shop. We promised Maya a full shopping experience we she was done and she held us to it... we were happy to oblige:)
Here she is outside the hospital doors as we waited for daddy. She was so happy to see some real clouds, as some the ceiling tiles on her floor were painted like the sky. These were much better!
It was the longest drive home... Kevin slept maybe one hour last night and I slept a little more with Maya, but we are all worn out. I had promised Maya that I would ride home in the backseat with her and I kept my promise. Between the fatigue, my diet for the past few days and my tendency towards motion sickness, I was a mess when we got home. Luckily when my feet hit still land I recovered pretty quickly.
When we arrived there was a package on our door from The Biddison's, our neighbors, with lots of fun stuff like Play-Doh, dominos and coloring books.
Then Memaw and Pepaw brought Rain home and that was a real treat! Soon after they left, Rain's best friend and her family stopped by with a super neat Tinkerbell balloon basket filled with goodies.
I went to fill some prescriptions and when I got back Kevin was in desperate need of rest. So he is taking a nap, and I will soon feed the girls some delicious dinner from our friend Stuart. I can't wait!!
It feels so good to be home, but now that she is in her natural element, I feel like the problems are more pronounced. I honestly think that the only things that bother her right now are the symptoms from the stroke... she doesn't even blink an eye at her sternum, heart or any other area. It's hard to face that this is her reality now, and she's not just gonna spring back to her usual self. But bothers me more than it bothers her and there's something to be said for that. I have made an appt to set up physical therapy, so we can hopefully get that started right away.
For now, I am exhausted... but extremely happy to have my little girl home.
In Him,
Brandy
Headed Home Again!
The neurologist has been by and we are being discharged right now.
He confirmed that she'd had a small-moderate stroke on the right side of her brain.
He said he was encouraged by her age and relative "plasticity" of young brains and that the thalamus and basal ganglia were not affected.
Both he and Kup called this a watershed stroke. What this means is that it was not caused by a blockage, but by hypotension probably during the bypass. So, at some point, the little vessels out on the very tips did not have oxygenated blood in them for some period of time and that tissue is permanently damaged.
He said that most of the time this can be overcome by physical therapy and in most cases children with this injury end up being able to enjoy the things in life that almost everyone else does including having a family. There is no cognitive damage and she is still as sharp as a tack.
He said that some do not recover and we certainly should not expect her to be a star athlete.
We have already been working with her making her walk and use her left arm. She can walk about 30 yards at a time several times if she rests between, but then she will need to lay down for a while. Her left arm just sort of hangs at her side and she swings her left leg to walk, the knee hyperextends, and there is no push off of the left toes. Hopefully the physical therapists will be able to give us some methods and exercises to help with this. Right now we are just trying to get her strength back up.
She does not seem to think it's a very big deal. She is happy to be going home--hopefully for real this time--and we can't wait to have her there. I don't know what to expect when she starts playing with Rain and Parker.
I guess she will do what she has always done: She's made the best of what she has and never thought a second about what she didn't. Pretty good lesson.
So, here's what I have: A beautiful family, a little girl with a fixed heart, so much love and support from so many people, and more blessings than I deserve. Lucky I have Brandy and the kids to do all the deserving for me!
Brandy will take over posting again now as we enter the next and hopefully less intense phase of Maya's life. Thank you so much for your prayers and support.
Kevin
He confirmed that she'd had a small-moderate stroke on the right side of her brain.
He said he was encouraged by her age and relative "plasticity" of young brains and that the thalamus and basal ganglia were not affected.
Both he and Kup called this a watershed stroke. What this means is that it was not caused by a blockage, but by hypotension probably during the bypass. So, at some point, the little vessels out on the very tips did not have oxygenated blood in them for some period of time and that tissue is permanently damaged.
He said that most of the time this can be overcome by physical therapy and in most cases children with this injury end up being able to enjoy the things in life that almost everyone else does including having a family. There is no cognitive damage and she is still as sharp as a tack.
He said that some do not recover and we certainly should not expect her to be a star athlete.
We have already been working with her making her walk and use her left arm. She can walk about 30 yards at a time several times if she rests between, but then she will need to lay down for a while. Her left arm just sort of hangs at her side and she swings her left leg to walk, the knee hyperextends, and there is no push off of the left toes. Hopefully the physical therapists will be able to give us some methods and exercises to help with this. Right now we are just trying to get her strength back up.
She does not seem to think it's a very big deal. She is happy to be going home--hopefully for real this time--and we can't wait to have her there. I don't know what to expect when she starts playing with Rain and Parker.
I guess she will do what she has always done: She's made the best of what she has and never thought a second about what she didn't. Pretty good lesson.
So, here's what I have: A beautiful family, a little girl with a fixed heart, so much love and support from so many people, and more blessings than I deserve. Lucky I have Brandy and the kids to do all the deserving for me!
Brandy will take over posting again now as we enter the next and hopefully less intense phase of Maya's life. Thank you so much for your prayers and support.
Kevin
A little setback for the bravest little girl in the world
We got Maya in recovery about 10pm. That was ugly as it always is, but not so bad as it can be because they just used gas and there was no procedure other than the MRI and yet another IV insertion. Maya was brave, but this would be hard for an adult--much less a four year old. Uncle Scott showed up to lend his support which was appreciated.
From when she went under to when we saw her again was the longest hour or so that Brandy and I have spent together as the result would be one of three things: a bleed that was continuing to cause damage (which was unlikely), a minor stroke, or nothing at all.
The radiologist read the MRI and the doctor called us to say that there had been a temporary loss of oxygen in a part of the right side of her brain caused by a clot that had since cleared. It probably took place during surgery and once the damage was done, it was done.
On this day, that was great news. We will see the neurologist in the morning to see how extensive he thinks the damage is and what the prognosis is. Right now she has what I would call not quite paralysis--more like extreme weakness--in her left extremeties. There is nothing different about her face, speech, or faculties. She won't use her left hand unless you make her and when she does it is uncoordinated and weak. She can walk, but with a pretty good limp because her left foot is not doing what it should.
So, there it is. We don't know yet what it all means long term. We don't know yet if the damage is permanent or is something that can be rehabbed, but we do know that it is not getting worse and she is going to live. So, when she got all recovered from the anesthesia we sat out in the hall (we have a baby girl roommate and didn't want to wake her) and had dinner with her at 1am or so. She ate a piece of rolled up ham, cheetos, orange soda, and the delicious cream part out of the center of about six mini oreos. If she would've wanted anything in the world she would've gotten it. Brandy and I ate some good stuff Scott brought from Melissa. I guess people walking by thought we were nuts as the whole nursing staff knows that we just found out that Maya had a stroke and we're out there feeding her junk food and cutting up with a four year old four days after open heart surgery. We just had a little party out there and if they didn't like it I think they knew we didn't care and nobody said a word.
We got Maya's teeth brushed and put her down a little after 2am and she's happy as a lark. Right before I laid down she gave me a 'thumbs up,' Gig 'Em that would've made Old Sarge proud along wit a big old smile. She's heard everything that I've written here and is feeling this as well, but if she cares, she sure doesn't show it. She laughed tonight like she does with Rain when they're in the bathtub together and if you've got a heart, she can steal it in about 15 seconds. It's my admiration for her that finally breaks my heart and brings the tears at times like these when no one's looking. I think that whatever challenge this turns into will be met head on with that special moxie she carries around by the bushel and will be overcome with a shrug.
Brandy's laying next to her in her bed and I'm on the same 1967 model fold out chair torture device I slept on last night about 18 inches from Brandy. it's about 3:30 now. I'm wearing the clothes I put on Thursday morning because I slept in the room with Maya last night and it looked like we were heading home today before all this came about.
So, for me, nothing has changed. Maya was sick and is going to get better. Maybe this will take us longer to get over, but it's something we will get over. It's not getting over on us because no matter what, we're in it together: Parker, Rain, Maya, Brandy, and me...plus a whole lot of people out there that care about us and our God that lives in that little girl's giant heart.
From when she went under to when we saw her again was the longest hour or so that Brandy and I have spent together as the result would be one of three things: a bleed that was continuing to cause damage (which was unlikely), a minor stroke, or nothing at all.
The radiologist read the MRI and the doctor called us to say that there had been a temporary loss of oxygen in a part of the right side of her brain caused by a clot that had since cleared. It probably took place during surgery and once the damage was done, it was done.
On this day, that was great news. We will see the neurologist in the morning to see how extensive he thinks the damage is and what the prognosis is. Right now she has what I would call not quite paralysis--more like extreme weakness--in her left extremeties. There is nothing different about her face, speech, or faculties. She won't use her left hand unless you make her and when she does it is uncoordinated and weak. She can walk, but with a pretty good limp because her left foot is not doing what it should.
So, there it is. We don't know yet what it all means long term. We don't know yet if the damage is permanent or is something that can be rehabbed, but we do know that it is not getting worse and she is going to live. So, when she got all recovered from the anesthesia we sat out in the hall (we have a baby girl roommate and didn't want to wake her) and had dinner with her at 1am or so. She ate a piece of rolled up ham, cheetos, orange soda, and the delicious cream part out of the center of about six mini oreos. If she would've wanted anything in the world she would've gotten it. Brandy and I ate some good stuff Scott brought from Melissa. I guess people walking by thought we were nuts as the whole nursing staff knows that we just found out that Maya had a stroke and we're out there feeding her junk food and cutting up with a four year old four days after open heart surgery. We just had a little party out there and if they didn't like it I think they knew we didn't care and nobody said a word.
We got Maya's teeth brushed and put her down a little after 2am and she's happy as a lark. Right before I laid down she gave me a 'thumbs up,' Gig 'Em that would've made Old Sarge proud along wit a big old smile. She's heard everything that I've written here and is feeling this as well, but if she cares, she sure doesn't show it. She laughed tonight like she does with Rain when they're in the bathtub together and if you've got a heart, she can steal it in about 15 seconds. It's my admiration for her that finally breaks my heart and brings the tears at times like these when no one's looking. I think that whatever challenge this turns into will be met head on with that special moxie she carries around by the bushel and will be overcome with a shrug.
Brandy's laying next to her in her bed and I'm on the same 1967 model fold out chair torture device I slept on last night about 18 inches from Brandy. it's about 3:30 now. I'm wearing the clothes I put on Thursday morning because I slept in the room with Maya last night and it looked like we were heading home today before all this came about.
So, for me, nothing has changed. Maya was sick and is going to get better. Maybe this will take us longer to get over, but it's something we will get over. It's not getting over on us because no matter what, we're in it together: Parker, Rain, Maya, Brandy, and me...plus a whole lot of people out there that care about us and our God that lives in that little girl's giant heart.
Friday, October 1, 2010
We're not Going Home
We were set to go home after being told repeatedly that her not using her arm was no big deal after telling the assistants to Kup and Brownlee, the nurses, and the doctors on the surgical ward.
Today Brownlee stopped by and said after looking at her and testing her left side v. right side that he wanted an echocardiogram before we left. They did that and then Kup dropped by. His assistant was telling him all about how Maya was and I said, "Yeah, but we still have this concern about her left side."
Once I do that, Brandy then lays it all out. She explains the symptoms and Kup says we need to get her to a neurologist asap, tonight, and starts putting it together because it appears she has had a stroke. We need to make sure it was just a TIA and not an active bleed so we will need to get her a CT scan. Kind of like a head X-ray in that you don't have to sedate her and all that.
A little later Brownlee shows up to tell us the echo looks good and catches me about 15 minutes from a meltdown because we've heard nothing about getting this stuff done since Kup left. He takes over and puts it back on track and the floor doctor jumps on it.
So, we take Maya back to the room and get her set to eat. Brandy is putting the ketchup next to the chicken nuggets when the floor doctor comes in and says, "Has she had a bite yet?"
The neurologist wants a special MRI (not a simple CT) of the brain so she will have to be anesthetized...so no food or drink again. We just took the last IV out today. We have been telling her we were leaving and now we can't.
It's all a little much right now as we were sort of going to coast home tonight on fumes having this behind us. I know life's not fair, but Maya doesn't yet and I don't want that lesson to be this hard this early.
Right now she has like a very limited paralysis that in the very extremities of her left hand and foot. It is almost certainly something that can be rehabbed out. We just need to do the MRI to see what damage has been done--if any--and make sure it is not continuing.
So, they have an anesthesia team that is coming in for another stat case and they will be putting her under again hopefully some time not too long after 8 pm. I really hope they can do it with gas only instead of the narcotics as the recovery is so much easier. Lots of crying and stuff, but less stomach problems.
I will post more when I know more.
Today Brownlee stopped by and said after looking at her and testing her left side v. right side that he wanted an echocardiogram before we left. They did that and then Kup dropped by. His assistant was telling him all about how Maya was and I said, "Yeah, but we still have this concern about her left side."
Once I do that, Brandy then lays it all out. She explains the symptoms and Kup says we need to get her to a neurologist asap, tonight, and starts putting it together because it appears she has had a stroke. We need to make sure it was just a TIA and not an active bleed so we will need to get her a CT scan. Kind of like a head X-ray in that you don't have to sedate her and all that.
A little later Brownlee shows up to tell us the echo looks good and catches me about 15 minutes from a meltdown because we've heard nothing about getting this stuff done since Kup left. He takes over and puts it back on track and the floor doctor jumps on it.
So, we take Maya back to the room and get her set to eat. Brandy is putting the ketchup next to the chicken nuggets when the floor doctor comes in and says, "Has she had a bite yet?"
The neurologist wants a special MRI (not a simple CT) of the brain so she will have to be anesthetized...so no food or drink again. We just took the last IV out today. We have been telling her we were leaving and now we can't.
It's all a little much right now as we were sort of going to coast home tonight on fumes having this behind us. I know life's not fair, but Maya doesn't yet and I don't want that lesson to be this hard this early.
Right now she has like a very limited paralysis that in the very extremities of her left hand and foot. It is almost certainly something that can be rehabbed out. We just need to do the MRI to see what damage has been done--if any--and make sure it is not continuing.
So, they have an anesthesia team that is coming in for another stat case and they will be putting her under again hopefully some time not too long after 8 pm. I really hope they can do it with gas only instead of the narcotics as the recovery is so much easier. Lots of crying and stuff, but less stomach problems.
I will post more when I know more.
See that smile?
That's what you get when you tell a little girl that she gets to go home! Yep, that's right :) As long as there are no surprises on her latest chest x-ray we will be headed back to NB. I'll update if there are any changes, but hopefully the next post will be from home!
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