It has been a while since my last post... it has just been crazy busy!!! So much as happened. For starters, Isa is now walking normal!! She graduated from physical therapy :) It wasn't until the week after Thanksgiving that she was able to walk at school without assistance from me or requiring her wheelchair. She had a few days where she had to take off from school because it hurt a little too much to be walking around and the cooler weather also seemed to affect her incision site (doctor says that within a year colder weather shouldn't affect her anymore).
She had her metal plates removed earlier this month!!! We were surprised at how big they actually were! We were told to expect to have surgery on a Friday and by Monday she should be back to normal. We took it with a grain of salt. She had the surgery Friday morning and went home that same day she required some pain killers throughout the weekend and didn't start walking until Monday. On Tuesday she went back to school and walked in the morning but by the afternoon she was exhausted and required to be carried around. I thought that recovery would take at least a week but by the next day she was walking almost the whole day. Within a week of the surgery she was back to normal. Granted they did tell us that she had to take it easy for the next two to three weeks but it has been almost three weeks and she is as if nothing, only her scars remain as prove. Initially she walked a little more turned in when she started walking post removal of plates but now she walks with her feet facing forward. The recovery has been long and hard on our whole family but we are at the end of it and I can't say enough how amazed I am by her!!! She has been amazing through all this and always with a positive attitude. She is my amazing little girl with three surgeries under her belt at the age of six. She is truly an example of bravery for her brother who is due to have surgery in two weeks :(
Wednesday, February 27, 2013
Wednesday, October 24, 2012
School and Eye Update
The first day Isa went back to school was hard and things didn't go as planned. I stayed with her the first day and quickly realized that she needed someone to assist her full time at school and not just with the toileting.
The first thing that came up was that the school was hoping to have her slide herself onto the toilet from her wheelchair. This just seemed impossible for her since she couldn't put any weight on her feet and she didn't have the sufficient upper body strength to do it. She was going to require being carried onto the toilet and off. Next thing was that there was no one to push her from room to room. While in her own classroom she was able to move well on her own but couldn't manuever from classroom to classroom. The other things were for instance P.E., where she was unable to fully participate. They had her trying to make baskets in a hoop while the other kids did some kicking but there was no one to retrieve the ball for her. If I had not been with her she would not have been able to do anything. My other concern was during recess, would anyone actually stick around past the new "she's in a wheelchair" phase or would she be by herself at lunch. The kindergarten playground is also not set up for wheelchairs so she could not line up with the rest of her class, instead she had to go around where the ramp was available. Unfortunately the school could not provide someone to help her full time and since I am a stay at home mom the choice was pretty obvious.
I have to admit that I did feel a bit guilty about leaving my baby boy with Grandma all day but it was the choice that had to be made. She needed me and if Max has the same surgery I will do the same for him. Max has been a sweetheart through it all, never complaining about all the extra attention Isa needs and fortunately he really enjoys doing art projects all day with Grandma.
It has been two and a half weeks of me going to school and I have to admit, it is a lot of work. I am tired and nothing seems to be getting done at home. However, regardless of how tired I am or the fact that my house seems a bit unkempt, I am very happy with my choice. I feel that I am able to assist my baby girl and she has been more comfortable during this phase.
EYE UPDATE:
We recently went to the doctor to follow up with the outward deviations. He said for her to resume patching again and that at least for now she wouldn't need surgery. I had mixed feelings about this, on one hand I felt relieved that surgery wasn't in her immediate future but on the other hand I felt that we are running around in circles. I feel that we are almost to where we started four years ago. Yes, she hasn't had any problems in her right eye but in her other eye we are back to where we started. I knew very well at the beginning of all this that surgery might need to be repeated and she may not ever be truly cured. However, back then there was just optimism and now I am faced with a big dose of reality :( I know I may be silly about my feelings but I can't help it. I do recognize that however things turn out whether she has surgery six months down the road or never again or patches for three months or for the rest of her life we are still blessed. It's always in the back of my mind that things could be much, much worse. We have another few months until our next appointment.
The first thing that came up was that the school was hoping to have her slide herself onto the toilet from her wheelchair. This just seemed impossible for her since she couldn't put any weight on her feet and she didn't have the sufficient upper body strength to do it. She was going to require being carried onto the toilet and off. Next thing was that there was no one to push her from room to room. While in her own classroom she was able to move well on her own but couldn't manuever from classroom to classroom. The other things were for instance P.E., where she was unable to fully participate. They had her trying to make baskets in a hoop while the other kids did some kicking but there was no one to retrieve the ball for her. If I had not been with her she would not have been able to do anything. My other concern was during recess, would anyone actually stick around past the new "she's in a wheelchair" phase or would she be by herself at lunch. The kindergarten playground is also not set up for wheelchairs so she could not line up with the rest of her class, instead she had to go around where the ramp was available. Unfortunately the school could not provide someone to help her full time and since I am a stay at home mom the choice was pretty obvious.
I have to admit that I did feel a bit guilty about leaving my baby boy with Grandma all day but it was the choice that had to be made. She needed me and if Max has the same surgery I will do the same for him. Max has been a sweetheart through it all, never complaining about all the extra attention Isa needs and fortunately he really enjoys doing art projects all day with Grandma.
It has been two and a half weeks of me going to school and I have to admit, it is a lot of work. I am tired and nothing seems to be getting done at home. However, regardless of how tired I am or the fact that my house seems a bit unkempt, I am very happy with my choice. I feel that I am able to assist my baby girl and she has been more comfortable during this phase.
EYE UPDATE:
We recently went to the doctor to follow up with the outward deviations. He said for her to resume patching again and that at least for now she wouldn't need surgery. I had mixed feelings about this, on one hand I felt relieved that surgery wasn't in her immediate future but on the other hand I felt that we are running around in circles. I feel that we are almost to where we started four years ago. Yes, she hasn't had any problems in her right eye but in her other eye we are back to where we started. I knew very well at the beginning of all this that surgery might need to be repeated and she may not ever be truly cured. However, back then there was just optimism and now I am faced with a big dose of reality :( I know I may be silly about my feelings but I can't help it. I do recognize that however things turn out whether she has surgery six months down the road or never again or patches for three months or for the rest of her life we are still blessed. It's always in the back of my mind that things could be much, much worse. We have another few months until our next appointment.
Wednesday, October 3, 2012
Post Surgery Update and Eye Update
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
It has been a week since surgery and things are going well. We have ups and downs. The first two nights Isa slept all through the night but not really since then. She has either woken up in pain or itching. However, I am pleased to report that she has rarely needed to take the prescription Tylenol she is mostly taking the Ibuprofen and not like clockwork like right after surgery. We talked with the doctor's office in regards to tips on itchiness and they recommended wetting her cast since it is waterproof, taking Benadryl (which she can safely do even with the other two medications), Ibuprofen should also take the edge of the itching, and tapping the cast gently with a spoon on the outside.
Although the doctor said it would be fine to wet the cast within three to four days post surgery we haven't. This is simply because she was still in pain where putting her in the tub would be tricky and also because we feel more comfortable waiting a few days, so instead we have opted for sponge baths and shampooing next to the tub like in a salon, which she found amusing :-) We have used Benadryl and it seems to work OK it just takes a while to kick in and can only be repeated every six hours,. Ibuprofen helps with the pain and maybe slightly with the itching but not enough. Tapping the cast with the spoon does nothing except tempt her into trying to stick the long part of the spoon under her cast to itch, which is probably not good for her :( needless to say we won't be doing that again. We have also tried ice over the cast and putting silicone strips at the top of her thighs were the cast starts. The silicone strips help with the cast rubbing on her thighs and seem to do a moderate job of keeping the itch in that area at bay even if just for a while. So at this point our major battle is dealing with the itching.
She is doing really well with the mobility of her legs. She is able to move her legs up and down and from side to side :) Like I mentioned earlier pain wise she has been incredible and is doing quite well with mostly Ibuprofen but she has had her moments when she is crying out in pain and requires the Tylenol.
All in all she has had an amazing recovery thus far, it truly amazes me just how resilient kids can be and how positive they can be. Isa has been extremely positive given her in mobility situation. I know that I probably would have been bed written in pain and whining about not being able to walk. I think through this experience she is learning about compassion towards others as is everyone else around her and of course me. It is making me admire even more those people who are permanently in wheelchairs and are capable of so much and having a positive outlook on life, especially children!!!
EYE UPDATE:
Unfortunealty it could no longer be ignored, her eye has been deviating outward quite frequently. We have called Dr. S and he said we needed to make an appointment prior to the one in Novemebr. We have an appointment in a week and a half. Truthfully both Jon and I are very fearful of what is to come out of that appointment but like always we will take it full on!
It has been a week since surgery and things are going well. We have ups and downs. The first two nights Isa slept all through the night but not really since then. She has either woken up in pain or itching. However, I am pleased to report that she has rarely needed to take the prescription Tylenol she is mostly taking the Ibuprofen and not like clockwork like right after surgery. We talked with the doctor's office in regards to tips on itchiness and they recommended wetting her cast since it is waterproof, taking Benadryl (which she can safely do even with the other two medications), Ibuprofen should also take the edge of the itching, and tapping the cast gently with a spoon on the outside.
Although the doctor said it would be fine to wet the cast within three to four days post surgery we haven't. This is simply because she was still in pain where putting her in the tub would be tricky and also because we feel more comfortable waiting a few days, so instead we have opted for sponge baths and shampooing next to the tub like in a salon, which she found amusing :-) We have used Benadryl and it seems to work OK it just takes a while to kick in and can only be repeated every six hours,. Ibuprofen helps with the pain and maybe slightly with the itching but not enough. Tapping the cast with the spoon does nothing except tempt her into trying to stick the long part of the spoon under her cast to itch, which is probably not good for her :( needless to say we won't be doing that again. We have also tried ice over the cast and putting silicone strips at the top of her thighs were the cast starts. The silicone strips help with the cast rubbing on her thighs and seem to do a moderate job of keeping the itch in that area at bay even if just for a while. So at this point our major battle is dealing with the itching.
She is doing really well with the mobility of her legs. She is able to move her legs up and down and from side to side :) Like I mentioned earlier pain wise she has been incredible and is doing quite well with mostly Ibuprofen but she has had her moments when she is crying out in pain and requires the Tylenol.
All in all she has had an amazing recovery thus far, it truly amazes me just how resilient kids can be and how positive they can be. Isa has been extremely positive given her in mobility situation. I know that I probably would have been bed written in pain and whining about not being able to walk. I think through this experience she is learning about compassion towards others as is everyone else around her and of course me. It is making me admire even more those people who are permanently in wheelchairs and are capable of so much and having a positive outlook on life, especially children!!!
EYE UPDATE:
Unfortunealty it could no longer be ignored, her eye has been deviating outward quite frequently. We have called Dr. S and he said we needed to make an appointment prior to the one in Novemebr. We have an appointment in a week and a half. Truthfully both Jon and I are very fearful of what is to come out of that appointment but like always we will take it full on!
Day Two Post Surgery
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
Early in the morning Dr. Vin came to visit us and check in on Isa. He said everything was going well and since she had been taking ibuprofen and a prescription strength Tylenol as opposed to morphines she could go home.
After the quick but a bit painful removal of the IV Isa was discharged with a prescription for the same prescription Tylenol she had been taking and for ibuprofen. Her follow up appointment would be at the end of the month.
We quickly gathered all of our belongings and headed home with the exception of a quick stop to pick up the prescription and some ibuprofen. Isa was in pain when we picked up her prescription so as soon as I had the medicine in hand she took it and feel asleep.
Once we arrived home Jon took a much needed nap as I watched both kiddos. Thankfully Isa was in very good spirits and even requested we go out for frozen yogart, another recent favorite of hers. So as soon as Jon woke up we got her ready and headed out. It was so reasurring to see her up to going out and quite frankly it blew my mind that just two days previous she had had surgery.
We went to the frozen yogart and a quick stop to Target to pick up thank you cards. She did well but as soon as we were done she was ready to get back on the couch and rest.
Once we arrived home she rested watching tv and coloring and then headed to bed. Since we didn't have her table situation all figured out yet we all had dinner in the living room with her. Suprisingly she slept all through the nigh :) and I was able get some much needed sleep as well.
Day One Post Surgery
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
The night after surgery had been a rough one and Jon and I didn't sleep much in the hospital. We were both decided on not leaving the hospital until Isa was discharged. Max was at home very happy with his Grandma overnight and during the day he hung out with us. It was so nice that there wasn't much of a visiting hour or number of people visiting rule.
The day got to a much better start and Isa was alert but still on two different types of pain killers. We had to watch the time and remind the nurses before she was due for her next dosage because as soon as the medication wore off Isa was crying in pain. She did mention a few times throughout the day about how she didn't want to be in a cast or wheelchair and wanted to be able to move freely. It was difficult hearing but thank goodness that it didn't last more than a few minutes and knowing that it was only temporary was comforting.
Late in the day the physical therapist came in to visit Isa and to fit her in the wheelchair. It was the first time Isa would be in the wheelchair. Turns out that the wheelchair didn't fit her right so we had to have another one delivered but in the meantime Isa took a spin in the current wheelchair to the children's playroom area and the children's garden area. She felt good about being able to leave the confinement of her hospital room and it also made her feel like she could still have some self depenence by moving around on her own :-)
Dr. Vin came in to check on Isa and see how she was doing. The only thing he noted was some swelling but nothing unusual or nothing that required the cast to be split. This however caused Isa to feel that her toes were overlapping each other and caused her some discomfort. Dr. Vin asked us if we felt capable of coping with her pain at home since everything seemed to be going so well she could probably go home the next day...YAY!!!!
Night time was pretty consistant of waking up every few hours in pain and getting medication. Again Jon and I didn't sleep very well, but Isa seemed to be doing much better!!!
Tuesday, October 2, 2012
Day of Surgery!!!!
This is how things happened for us and I was very adimit about not to sugar coating any of it so that you can have an honest account....
I got out of bed quickly since I had already been awake for most of the night. Isa woke up as soon as we carried her out of bed and said she was ready to go.
We arrived rather quickly at the hospital since 6 am traffic is very slow. We took a deep breath and made the journey inside, where we met some family members. First, was admissions where Isa received her bracelet. At this point Isa was still in very good spirits. We received a cart ride to the pre-op area. Isa put her hands in the air and joked about it being a ride :) Once we arrived to the pre-op. area it was just Jon, Isa, and myself. This is where Isa started to get nervous and hugged her American girl doll tight. We walked into the pediatric pre-op area where the walls were nicely painted with animals and butterflies and there were ride on cars. Isa had her height and weight taken. We met many nurses, including the nurse that would be in the O.R. and we also talked with Dr. Vin. The child life specialist came in to talk to Isa about getting ready for surgery. She provided her with a coloring rag doll and told her it was her buddy that would be with her. Isa was distracted by this. When she was done coloring the doll she was provided with an Ipad by the child life specialist with many apps. Her favorite was Toca Doctor and she played that until they came to take her. The anesthesiologist gave us the option of giving her a sleepy syrup. He asked how she had reacted last time she left the pre-op area to go to the O.R. She was very terrified and was screaming so we opted to give her the sleepy syrup. He said that she should be very sleepy within 15 minutes and shouldn't remember leaving us and going into the O.R. Of course it would be like Isa not to feel sleepy but she was definitely much more relaxed than last time. The child life specialist went to the O.R. with her providing her some comfort and a familiar face, she was the same one who gave us the hospital tour. Although she cried very little it was still heart wrenching to have to leave her! Surgery started at 8 am.
Jon and I walked out of the pre-op area crying, especially me. I said many prayers as we walked over to the surgical waiting lobby.
In the surgical waiting room we waited what seemed to be hours on hours, but in reality it was three hours. Dr. Vin cam out once surgery was done and said that everything went very well and that he was able to rotate her femur bone about 40-45 degrees successfully. He said that within minutes we should be called into the recovery area. I felt a rush of relief that surgery had gone well but knew that this was just the beginning of our journey.
Within a few minutes we were told that I would be allowed back, not Jon. I followed the receptionist man very anxious to see my little baby. However, apparently he didn't know where to go because he took me to adult intensive care, followed by the child intensive care, and then we did a huge loop to end up in the same waiting area where he made a call. My poor baby had already left the post-op area and was in a room. I felt devastated thinking that I had told her that I would be there when she woke up and now she was probably frightened and without me or any familiar face. Jon came over and the man tried to explain to him what was going on, Jon felt just as frustrated and told the guy not to worry explaining it but to just find her. Finally he was able to obtain a room number. We rushed over there and I found my baby crying and very frightened. When she saw me she felt better but yet she was still confused and in pain. Within a few minutes Jon was in the room too. Isa kept screaming that she was in pain, that she didn't want a cast on , and tried to pull out her IV. This was extremely painful to witness! I couldn't contain tears from silently falling. The nurse said she would give her morphine to calm her down and hopefully she would sleep and not remember what had just happened.
Lucky she was able to sleep for about two hours. When she did wake up she woke up much more calm but in a lot of pain still and very frightened. For the remainder of the day she spent it in this pattern, waking in much pain and being scared about not being able to move her legs and then sleeping once she was given medication. Dr. Vin visited us again to see how she was doing, he checked her for swelling to see if the cast needed to be split, it didn't.
She hadn't used the restroom since the morning and we were worried. The nurse said that she really needed to urinate otherwise she would have to have a catheter otherwise her bladder won't expand too much. They gave her a few hours into the evening and she managed to urinate a minute amount. They contacted Dr. Vin and he said that for her safety they would have to put a catheter in to empty her bladder and then give her a few hours to go to the bathroom on her own if not they would have to put it in again and leave it in. It was hard to hear because I knew it was going to be extremely difficult to handle. Three nurses had to come in to do it and Jon and I held her arms. It was one of the most difficult things to experience! She was screaming that it hurt and to stop as she looked right at Jon and I. I couldn't help but cry silently as I told her that it would all be over in a minute. I know that it must have only taken a few minutes but it seemed like hours because it was so difficult.
Thank God that within a few hours she asked to go to the bathroom on her own. Around 2 am she was finally awake enough to be herself :-) However, she was still in a lot of pain and like clockwork as soon as the medicine wore off she was yelling the she was in pain.
End of day 1in the hospital.
Sunday, September 30, 2012
Night Before Surgery
Isa went to school as usual and then her ballet class. I spent the day at the doctors, my stomach was still upset (yes,I think it was just nerves!) After ballet we went to dinner at IHOP. Isa loved the idea of breakfast for dinner :-) We were joined by our close family and had a good time but the drive home was very quite. We did our last minute packing for the hospital and then it was off to bed. Unfortunately I don't think that Jon and I slept but Isa fell asleep as soon as she got in bed. I admit I did a lot of praying and some crying...I was extremely nervous for surgery.
Subscribe to:
Posts (Atom)