Olivia is in LOVE with the electric wheelchairs and has asked for one many times. But they are really expensive, and since she would only NEED it for a short period of time I doubt we could even get insurance to rent us one. A regular wheelchair is really hard for her because she has limited use of her hands and arms, so she really can't get around it on her own. (which is hard for our little independent girl)
I found a really cool electric chair for sale, but we just could afford it. I emailed the owner and said if he couldn't sell it would he consider donating it to Shriners. Well today he emailed me as he just dropped it off at Shriners and told them that it was for Olivia to use :) I am so excited but haven't told her yet as I want to see her face when she SEES it and can try it. I think I will video it :) It will also be one of those fun things to bring up AFTER her next cast change is completed on the 17th of December. Especially if she has a rough time again. So thank you Ed for making our daughters Christmas :)
Thursday, December 13, 2007
12/10/2007 First Cast Change
Each day since we have been home from the hospital she went longer and longer without pain, Sunday she didn't say she had any pain all day. In fact she was even asking to walk I had to tell her no until we talk to the doctor so she doesn't hurt her feet. She was telling everyone her feet are fixed and they look like Bailey's now. One seems about 1/2 longer, but it is hard to tell with the cast. They look really good though, she looks like she just broke her legs, the feet already look pretty normal. We are so excited for her to get them off, 11 more weeks to go.
Today, one week after her surgery, is her first cast change (we have 11 weeks of this, though we might not need a cast change each and every week... but at minimum will the first few weeks)
We went to the hospital at 10:00am, though she didn't end up going to surgery until noon. Which we were actually happy about since they said it might be as late as 3 or 4:00pm... which would be so hard on her not being able to eat and all. She is not a big breakfast person, so the early morning is not a issue. In fact she didn't even ask for food until 15 minutes before the surgery. Because they got her in surgery so quickly she was not able to get her verced, so I was a little nervous how she would do going back to the operating room. They let them pick their FLAVOR for the gas. So she picked bubblegum, and they put it on the mask and let them play with it a while before surgery. She puts it on her face and smells it. I think that it would really traumatic to just push the mask on her face. Letting her play with it and get comfortable with it, I think are really helpful. They start to take her back to the room for the operation and she didn't cry at all... or really even act scared. I was so relieved and happy. It just goes to show how much she trusts the doctors and nurses.
it was supposed to be a quick procedure, she was only under about 30-45 minutes. But then she was in recovery for over 2 hours. Longer then any of her major surgeries.
They said she was having severe pain and her blood pressure was 160/120. Which is REALLY high. She had an epidural, plus they had given her loritab, and valium and finally morphine. She finally was doing better and they let her come to the room, but they were checking her blood pressure every 15 minutes. When she got in the room it was about 138/88 and it slowing dropped to a more normal level... she was finally able to sleep.
We were supposed to be in and out pretty quickly, but I ended up there all day until 9:30pm. They initially thought that she would have to spend the night, but around 7pm, she suddenly turned around. I really think the 6:30pm activity really helped. She got to make a gingerbread house and she loved it and FORGOT about the pain. I was not at all prepared for an overnight as she has always done so well with the surgeries (Anesthesia) and this wasn't really surgery just re-positioning her foot.
She got a red and green cast... for Christmas (her big brother Jordan talked her into that one)
We have another cast change this Monday, so I will go to the hospital more prepared in case we do need to stay the night. I am a little more worried now that she didn't do as well. But no one seemed sure why she had so much pain. In fact both surgeons came in separately to check on her and were surprised that her green (her cast were green on one leg and red on the other) leg was hurting, they said they barely moved that one, that the red one was the one they really pushed harder in position.
They gave her little cast shoes and said if she wanted to walk to let her, it will help stretch things out more.
So keep Olivia in your payers on Monday that she does well and doesn't have a bad recovery again.
Today, one week after her surgery, is her first cast change (we have 11 weeks of this, though we might not need a cast change each and every week... but at minimum will the first few weeks)
We went to the hospital at 10:00am, though she didn't end up going to surgery until noon. Which we were actually happy about since they said it might be as late as 3 or 4:00pm... which would be so hard on her not being able to eat and all. She is not a big breakfast person, so the early morning is not a issue. In fact she didn't even ask for food until 15 minutes before the surgery. Because they got her in surgery so quickly she was not able to get her verced, so I was a little nervous how she would do going back to the operating room. They let them pick their FLAVOR for the gas. So she picked bubblegum, and they put it on the mask and let them play with it a while before surgery. She puts it on her face and smells it. I think that it would really traumatic to just push the mask on her face. Letting her play with it and get comfortable with it, I think are really helpful. They start to take her back to the room for the operation and she didn't cry at all... or really even act scared. I was so relieved and happy. It just goes to show how much she trusts the doctors and nurses.
it was supposed to be a quick procedure, she was only under about 30-45 minutes. But then she was in recovery for over 2 hours. Longer then any of her major surgeries.
They said she was having severe pain and her blood pressure was 160/120. Which is REALLY high. She had an epidural, plus they had given her loritab, and valium and finally morphine. She finally was doing better and they let her come to the room, but they were checking her blood pressure every 15 minutes. When she got in the room it was about 138/88 and it slowing dropped to a more normal level... she was finally able to sleep.
We were supposed to be in and out pretty quickly, but I ended up there all day until 9:30pm. They initially thought that she would have to spend the night, but around 7pm, she suddenly turned around. I really think the 6:30pm activity really helped. She got to make a gingerbread house and she loved it and FORGOT about the pain. I was not at all prepared for an overnight as she has always done so well with the surgeries (Anesthesia) and this wasn't really surgery just re-positioning her foot.
She got a red and green cast... for Christmas (her big brother Jordan talked her into that one)
We have another cast change this Monday, so I will go to the hospital more prepared in case we do need to stay the night. I am a little more worried now that she didn't do as well. But no one seemed sure why she had so much pain. In fact both surgeons came in separately to check on her and were surprised that her green (her cast were green on one leg and red on the other) leg was hurting, they said they barely moved that one, that the red one was the one they really pushed harder in position.
They gave her little cast shoes and said if she wanted to walk to let her, it will help stretch things out more.
So keep Olivia in your payers on Monday that she does well and doesn't have a bad recovery again.
12/05/2007 Leaving the hospital today :)
Olivia has done great today, she was eating much better, and wanted to "GO HOME". They removed her epidural and catheter. She has to be able to eat, manage her pain, and pee on her own in order to get released. (of course her blood pressure and oxygen saturation also have to be in line)
So we met all those Benchmarks by evening. So we headed home. She was so excited to go home as she kept saying she missed Bennett and Bailey (her siblings). They are so sweet to her and gentle and will sit there and fetch her toys, give her snacks. They are amazingly patient with her considering they are only 3 years old. What amazing me the most is that we are so focused on Olivia with all her needs, and I stay with her 24 hours why she is in the hospital, they never act jealous towards her. Maybe it is being twins, they are used to sharing and being a team... or maybe I just have the sweetest kids ever... :)
Olivia slept awesome her first night home, in fact she slept from 2:00am to 9:00am without evening waking up for pain meds. I actually freaked out a little when I realized she hadn't woke up, I thought I missed her calling me... LOL I thin not having nurses wake you up constantly and just the security of being home.
So we met all those Benchmarks by evening. So we headed home. She was so excited to go home as she kept saying she missed Bennett and Bailey (her siblings). They are so sweet to her and gentle and will sit there and fetch her toys, give her snacks. They are amazingly patient with her considering they are only 3 years old. What amazing me the most is that we are so focused on Olivia with all her needs, and I stay with her 24 hours why she is in the hospital, they never act jealous towards her. Maybe it is being twins, they are used to sharing and being a team... or maybe I just have the sweetest kids ever... :)
Olivia slept awesome her first night home, in fact she slept from 2:00am to 9:00am without evening waking up for pain meds. I actually freaked out a little when I realized she hadn't woke up, I thought I missed her calling me... LOL I thin not having nurses wake you up constantly and just the security of being home.
12/04/2007 2nd day in Hospital
Olivia is doing amazing today since having her cast split on both sides this morning. She is starting to laugh and joke and her humor is coming back. She still needs her pain medication every 4 hours but does well in between, which wasn't the case yesterday.
She loves her pink and purple cast, and I must say having each leg a different color has proved to be very useful. Since Olivia doesn't know her left or right. She will say my pink leg is hurting... LOL It has been great. At first I wasn't big on two different colors as the OCD in me needs things to match. But of course we let her do what ever she wanted with the colors since really that is the only control she has in this whole process.
She loves her pink and purple cast, and I must say having each leg a different color has proved to be very useful. Since Olivia doesn't know her left or right. She will say my pink leg is hurting... LOL It has been great. At first I wasn't big on two different colors as the OCD in me needs things to match. But of course we let her do what ever she wanted with the colors since really that is the only control she has in this whole process.
Wednesday, December 5, 2007
12/03/2007 Olivia's Feet surgery (WE LOVE SHRINERS)
Well today was Olivia's surgery on both her feet. She went into the OR at about 11:00am... this time they gave her another drug with the versed, so she didn't cry as she went back, in fact she seemed completely unaware that she was even leaving the room. Which was so nice, it is hard to watch them go into the Operating Room in a complete panic.
She was done around 4:30pm.
They brought her to the room, and she slept for a while. She decided that she wanted one PINK cast and one PURPLE cast. Both casts are just below her knees. Luckily this time they are "walking" casts, and are not connected with a bar. (though the bar makes carrying her easy, it makes underwear, pants, and most skirts and dressing in general next to impossible)
As the evening approached she became increasingly miserable. Despite the epidural in her back to help her manage the pain. We were lucky the entire night if she slept 1 hour straight, and often in was only 15-20 minutes. Luckily having twins prepared me for little spurts of sleep, and going to sleep quickly. (laugh) Though I felt bad for our "roommates" who came the night before and were having surgery the next morning. Since we keep them up all night... though I must say they were VERY gracious about it.
It seemed we were constantly paging the nurse and trying to figure out why she was in constant pain. Unfortunately with her language barrier we were unable to really get a good description of her pain... was it "throbbing" or "piercing", etc.
By about 8:00am, we decided to split one side of her cast, in case she was having allot of swelling, which can be a source of intense pain. She we were maxing her on the pain meds, we really couldn't give her more... which is so hard to watch her hurting and not be able to help. Immediately after splitting her cast, she seemed to be fairly pain free... This lasted a few hours, then she started saying that the "split" in her cast was hurting and her foot was "too big". Since she hadn't used those words previously, I was worried that the swelling was continuing and was pushing her skin in the crack, and that is why she said it was hurting. So we called in the nurse and doctor, and decided to split the other side of her cast. She screamed through the entire procedure, even though I don't think it hurt... but she was screaming "I scared, I scared". As soon as the doctor left the room, she stated that the pain was gone. She was finally able to start laughing and smiling again, as asked for some "Soda" and "Fries". (So American) Which was great since she really hadn't had anything of substance to eat since before her surgery. Hopefully we will be able to go home on Wednesday. She is anxious to go home, and I think that it helps keep her mind off the casts and her surgery. Laying in bed and just waiting for the check ups I think stresses her a little. Even though she LOVES Shriners.
Of course there is always Jillian, who has the best job there i think. She is the ENTERTAINMENT person, or as the kids call her the TOY LADY. She give the kids things to do and they always get a small gift. In fact when you come in for your appointments they always have little gifts when you check in, this time they were little dolls with hospital gowns. Then when they go to their room there is a little bag with shampoo, toothpaste, toothbrush, etc. with a stuffed animal peaking out. Olivia is always excited to see what PRESENT awaits her. Then there is Jillian who is always checking on the kids to see how happy they are and if they need help. If you need to go eat or leave for a short period of time Jillian will usually come in and play with your child for you. Each night they have activities that all the kids are invited to in the large playroom, if they want to attend. This is a life saver and a GREAT distraction for children that are mostly focusing on their treatment and pain management. The other thing that we LOVE about Shriner's is everyone is so happy. The doctors, the nurses, the cafeteria staff, even the housekeepers. When you talk about your child, it is all about their care, what is best for them. NEVER is money or insurance companies or anything but your child's care every mentioned. I have never been around care like that. Also EVERY child that they CAN treat is accepted, regardless of income or nationality. (There are many people there that don't even speak English)
It is an amazing organization, I wish they could run our health care system... we would all love it :) So remember them if you are ever looking for an organization to donate PLEASE consider them.
She was done around 4:30pm.
They brought her to the room, and she slept for a while. She decided that she wanted one PINK cast and one PURPLE cast. Both casts are just below her knees. Luckily this time they are "walking" casts, and are not connected with a bar. (though the bar makes carrying her easy, it makes underwear, pants, and most skirts and dressing in general next to impossible)
As the evening approached she became increasingly miserable. Despite the epidural in her back to help her manage the pain. We were lucky the entire night if she slept 1 hour straight, and often in was only 15-20 minutes. Luckily having twins prepared me for little spurts of sleep, and going to sleep quickly. (laugh) Though I felt bad for our "roommates" who came the night before and were having surgery the next morning. Since we keep them up all night... though I must say they were VERY gracious about it.
It seemed we were constantly paging the nurse and trying to figure out why she was in constant pain. Unfortunately with her language barrier we were unable to really get a good description of her pain... was it "throbbing" or "piercing", etc.
By about 8:00am, we decided to split one side of her cast, in case she was having allot of swelling, which can be a source of intense pain. She we were maxing her on the pain meds, we really couldn't give her more... which is so hard to watch her hurting and not be able to help. Immediately after splitting her cast, she seemed to be fairly pain free... This lasted a few hours, then she started saying that the "split" in her cast was hurting and her foot was "too big". Since she hadn't used those words previously, I was worried that the swelling was continuing and was pushing her skin in the crack, and that is why she said it was hurting. So we called in the nurse and doctor, and decided to split the other side of her cast. She screamed through the entire procedure, even though I don't think it hurt... but she was screaming "I scared, I scared". As soon as the doctor left the room, she stated that the pain was gone. She was finally able to start laughing and smiling again, as asked for some "Soda" and "Fries". (So American) Which was great since she really hadn't had anything of substance to eat since before her surgery. Hopefully we will be able to go home on Wednesday. She is anxious to go home, and I think that it helps keep her mind off the casts and her surgery. Laying in bed and just waiting for the check ups I think stresses her a little. Even though she LOVES Shriners.
Of course there is always Jillian, who has the best job there i think. She is the ENTERTAINMENT person, or as the kids call her the TOY LADY. She give the kids things to do and they always get a small gift. In fact when you come in for your appointments they always have little gifts when you check in, this time they were little dolls with hospital gowns. Then when they go to their room there is a little bag with shampoo, toothpaste, toothbrush, etc. with a stuffed animal peaking out. Olivia is always excited to see what PRESENT awaits her. Then there is Jillian who is always checking on the kids to see how happy they are and if they need help. If you need to go eat or leave for a short period of time Jillian will usually come in and play with your child for you. Each night they have activities that all the kids are invited to in the large playroom, if they want to attend. This is a life saver and a GREAT distraction for children that are mostly focusing on their treatment and pain management. The other thing that we LOVE about Shriner's is everyone is so happy. The doctors, the nurses, the cafeteria staff, even the housekeepers. When you talk about your child, it is all about their care, what is best for them. NEVER is money or insurance companies or anything but your child's care every mentioned. I have never been around care like that. Also EVERY child that they CAN treat is accepted, regardless of income or nationality. (There are many people there that don't even speak English)
It is an amazing organization, I wish they could run our health care system... we would all love it :) So remember them if you are ever looking for an organization to donate PLEASE consider them.
Saturday, December 1, 2007
11/29/2007 Foot Surgery
Well we went back to our surgeon (Dr Roach) today to discuss the game plan for Olivia's foot operations. We went over what the two specialist had advised, and discussed a possible surgery date sometime in February. Since it is likely we will be moving about them, I told them to call us with any cancellations. Since we are only 15 minutes away we can accommodate a very limited notice. (We really just need to know enough in advance so that she doesn't eat the morning of) They stated that since the plastic surgeon only does his surgeries once a month that it was unlikely we would get a sooner opening for his time.
Just as we are about to leave our appointment they tell us they think they just had a cancellation for Monday, which happens to be on the plastic surgeons schedule. They ask if we will take the spot if our surgeon (Dr. Roach) can make time the same day to perform her surgery. After 30 minutes or so they come back and say that she can have her surgery Monday at 10:00am. Then this will put them on track to have the plastic surgeon do her skin graphs around 3:30pm (which was the opening in his schedule).
I have to sort of laugh, as her last surgery was exactly the same, we came in on a Thursday and found out that there was a last minute cancellation for Monday. They say this is rare, yet it has now happened to us twice.
Just a few days ago Olivia was asking me to have her feet "fixed"... she has trouble walking now that her hip and knee are "fixed", since her pointed foot is now too long. So she is excited to have her feet "fixed" so she can walk better and run and play again. She even said "Mommy, lets go to the doctor and Olivia, (snoring sounds), then wake up and feet all fixed". I was amazed that after just one surgery she understood that she would go to sleep and they would do the surgery and she would wake up and be all better.
She will have at least two full leg casts again... which neither of us look forward too. So we have been deciding on what her NEW color will be... she is debating between pink and purple. (She already has had blue and green).
She will get a cast change each week, so I am sure we will eventually have ALL the colors. They did mention that we may have another SPICA cast (full body) but I will BEG them not to. I just don't know if I can do that another 2-3 months again. They don't want her walking, and since she is so assertive she is always pushing the limits, they feel that the only way she won't try to walk in the cast is to make it were she CAN'T walk. But I told them she is ALWAYS supervised, so we will make sure she doesn't walk. Since she has limited use of her hands, when she is in the full body cast she can do very little and is so bored, she can't move, or hardly function. Not to mention the bathroom issue is a nightmare... so we will pray that they won't give her another spica cast.
Well I have allot to do to get ready for another week in the hospital, and to arrange care for my other children.
I must say again how COMPLETELY grateful we are for Shriners and all they do for our daughter and all the other children they help. We hope when we have got our daughter through the bulk of her surgeries that we can give back to them to show them the support and love they have shown us. If you are ever looking for a charity to contribute to, please consider them.
Just as we are about to leave our appointment they tell us they think they just had a cancellation for Monday, which happens to be on the plastic surgeons schedule. They ask if we will take the spot if our surgeon (Dr. Roach) can make time the same day to perform her surgery. After 30 minutes or so they come back and say that she can have her surgery Monday at 10:00am. Then this will put them on track to have the plastic surgeon do her skin graphs around 3:30pm (which was the opening in his schedule).
I have to sort of laugh, as her last surgery was exactly the same, we came in on a Thursday and found out that there was a last minute cancellation for Monday. They say this is rare, yet it has now happened to us twice.
Just a few days ago Olivia was asking me to have her feet "fixed"... she has trouble walking now that her hip and knee are "fixed", since her pointed foot is now too long. So she is excited to have her feet "fixed" so she can walk better and run and play again. She even said "Mommy, lets go to the doctor and Olivia, (snoring sounds), then wake up and feet all fixed". I was amazed that after just one surgery she understood that she would go to sleep and they would do the surgery and she would wake up and be all better.
She will have at least two full leg casts again... which neither of us look forward too. So we have been deciding on what her NEW color will be... she is debating between pink and purple. (She already has had blue and green).
She will get a cast change each week, so I am sure we will eventually have ALL the colors. They did mention that we may have another SPICA cast (full body) but I will BEG them not to. I just don't know if I can do that another 2-3 months again. They don't want her walking, and since she is so assertive she is always pushing the limits, they feel that the only way she won't try to walk in the cast is to make it were she CAN'T walk. But I told them she is ALWAYS supervised, so we will make sure she doesn't walk. Since she has limited use of her hands, when she is in the full body cast she can do very little and is so bored, she can't move, or hardly function. Not to mention the bathroom issue is a nightmare... so we will pray that they won't give her another spica cast.
Well I have allot to do to get ready for another week in the hospital, and to arrange care for my other children.
I must say again how COMPLETELY grateful we are for Shriners and all they do for our daughter and all the other children they help. We hope when we have got our daughter through the bulk of her surgeries that we can give back to them to show them the support and love they have shown us. If you are ever looking for a charity to contribute to, please consider them.
11/28/2007 Hand Specialist
Today we met with the hand specialist to see what, if anything can be done to help Olivia gain more use of her hands.
After waiting 3 hours to see the doctor we really didn't learn allot. It seems each suggestion had a possible negative side effect or consequence. The specialist said that often they do nothing, as the patient can lose more then they gain.
This was all disappointing.
We did discuss trying to straighten her left wrist, as she is right handed and seldom uses her left hand. This would allow us to see if she gains more then she loses from the operation. If it is NOT successful we haven't impaired the hand she uses the most. If it IS successful then we will have the same operation done on her right hand.
I know that Olivia is very determined, and that if her success is up to her, that she will do well. She is difficult to detour :)
We decided to revisit this once her foot surgeries were completed, as she is very reliant on her hands at the moment to scoot around the floor. Once she is up and walking again then we can revisit what we would like to try on the hands.
After waiting 3 hours to see the doctor we really didn't learn allot. It seems each suggestion had a possible negative side effect or consequence. The specialist said that often they do nothing, as the patient can lose more then they gain.
This was all disappointing.
We did discuss trying to straighten her left wrist, as she is right handed and seldom uses her left hand. This would allow us to see if she gains more then she loses from the operation. If it is NOT successful we haven't impaired the hand she uses the most. If it IS successful then we will have the same operation done on her right hand.
I know that Olivia is very determined, and that if her success is up to her, that she will do well. She is difficult to detour :)
We decided to revisit this once her foot surgeries were completed, as she is very reliant on her hands at the moment to scoot around the floor. Once she is up and walking again then we can revisit what we would like to try on the hands.
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