August 26, 2008 - Progress Report
Hi all,
Kaitlyn went back to Shriners Hospital today to have an early check up. We thought she might have had an infection because there were a few bumps around the incision site that we hadn't noticed before. Kaitlyn was having sharp pains in those areas. Well, the good news is that it was not an infection. Praise God!! They were bumps caused by the end of the ribs that were cut. We hadn't noticed them before because her back was swollen. As the ribs continue to grow, the pain will change and the bumps should be less noticeable.
Kaitlyn switched to a lower level pain medication, which is a good sign that the pain level is decreasing. She is still taking more medication than someone her size normally takes. Kaitlyn is still in pain most of the time, but it is getting better. Her stomach was bothering her because of all the medication. She lost 9 pounds in the last 8 weeks. The doctors are concerned about her weight loss because this took her down to 81 pounds. She is back on a two hour feeding schedule (during waking hours), with high calorie/high fat foods. This is not good for me as I have very little resistance to the foods I'm giving her.
At times, she is not able to get herself up or turn her body on the couch like she was able to do a week ago. The doctor assured me that this is normal because her body is changing. Kaitlyn is learning what she can do without causing too much pain and trying to stay active part of the day without overdoing it, so that she is in bed the following day. It's been a fine line, but we are learning.
Kailtyn's doctor said that it would be about 4 more weeks before I could leave her for more than a few hours at a time. I am starting back to work part time next week in order to keep our medical coverage and cover future expenses. I will be working a split shift, so I can come home and check on Kaitlyn at lunch time for a few hours. We truly appreciate our family and friends that have helped us with expenses (including food and other items). I don't know what we would have done so far without you!!!
Kaitlyn was happy when the doctor reiterated that she shouldn't be doing any housework, or lifting anything more than a few pounds. I told her that there would be plenty to do when she's feeling better.
She starts independent home study next week and we are hoping that she has the energy to stay awake and complete what she needs to each day.
Please keep her and our family in your prayers. We appreciate it!!!
Thank you,
Ruby
Tuesday, August 26, 2008
Wednesday, August 20, 2008
Hi everyone,
It's been awhile since our last post. This last week went by extremely fast. I've been trying to catch up on stuff around the house and sleep. Kaitlyn has had some good days and some not so good days. Sometimes her pain level is really good and sometimes it gets really high and takes hours to get back under control. She is able to move from her back to her left side and back again most times, so I have been able to sleep 4 hours at a time. She can get off the couch by herself most of the time. She has cut back on the pain medication to just 1 pill every 4 hours instead of 2 pills. She has also cut back on the a muscle relaxer. The scars on her back are looking much better and she is now able to lift her right arm without too much pain.
She is gearing up to start school right after Labor Day. She is still tired most of the time, but is getting stronger each day. Whenever she gets up and does something for an hour or so, she then sleeps for 3-4 hours. Riding in the car is much easier than before.
We wanted to thank everyone for their support during this time. I don't know what we would have done without all of you!! We know that we are blessed with some amazing people in our lives. Thank you!!!
I will post pictures later.
Ruby
It's been awhile since our last post. This last week went by extremely fast. I've been trying to catch up on stuff around the house and sleep. Kaitlyn has had some good days and some not so good days. Sometimes her pain level is really good and sometimes it gets really high and takes hours to get back under control. She is able to move from her back to her left side and back again most times, so I have been able to sleep 4 hours at a time. She can get off the couch by herself most of the time. She has cut back on the pain medication to just 1 pill every 4 hours instead of 2 pills. She has also cut back on the a muscle relaxer. The scars on her back are looking much better and she is now able to lift her right arm without too much pain.
She is gearing up to start school right after Labor Day. She is still tired most of the time, but is getting stronger each day. Whenever she gets up and does something for an hour or so, she then sleeps for 3-4 hours. Riding in the car is much easier than before.
We wanted to thank everyone for their support during this time. I don't know what we would have done without all of you!! We know that we are blessed with some amazing people in our lives. Thank you!!!
I will post pictures later.
Ruby
Tuesday, August 12, 2008
New Pictures!
Hey guys! It's Kaitlyn. Lately, I've been in a lot of pain, so I haven't been able to sit in a chair for very long. I'm feeling almost pain-free for the moment, so I thought I'd post some of the pictures of my stay in the hospital, and also the pictures of visitors I've had since I've been home. I was finally able to get out and take a walk in the park, so I'll show you a picture or two from that adventure, too. Thank you to all of you who have been praying for my recovery and keeping up on the blog. It means a lot to see all the comments from you guys.
Check out my mom's post from today for more information.
Check out my mom's post from today for more information.
Road Trip and Information
Hi all,
We finally made it out of the house Sunday afternoon. We took a short trip to William Land Park. It was great to be outside. Rick came along with us just in case Kaitlyn fell again, as I am not able to get her up by myself from the ground. The weather was perfect and there was a gentle breeze. Kaitlyn walked about a half a mile. We sat in lawn chairs (Kaitlyn had pillows behind her) for about an hour. Kaitlyn took a book to read, but we mostly just talked. We probably did a little too much in one day because she was really tired and sore afterwards. Next time we'll do more sitting and a little less walking, but it felt so good to get her out of the house.
Yesterday, she had some friends from school come over. They watched a movie and Kaitlyn shared her stories about the hospital. The girls were talking about school starting. Kaitlyn will be doing independent home study for the first semester of school to allow her to heal more. She doesn't want to be bumped in the hallways and doesn't feel like she can keep up with a normal schedule for school right now. She will miss her friends and the social part of school, but I'm sure she will keep in contact with her friends via the computer and phone.
It has been 3 weeks since Kaitlyn's surgery and she is doing as good considering the extensive surgery. Some people have been asking exactly what Kaitlyn had done to her back, so I thought I would share (now that I understand it a little better, too). Kaitlyn had one rib fully removed. That rib will not grow back. The doctors cut out sections of 5 ribs in order to hammer those ribs back into place. They will eventually grow back together. Before the surgery, Kaitlyn had a hump on her right shoulder. That hump is now gone!! Praise God!!! Then metal rods were placed on each side of her spine from the top of her spine to just before the lumbar area. The doctors were amazed that once the top of her spine was aligned that the bottom part just corrected itself. This is great news because Kaitlyn will be able to bend at the waist and still grow in that area of the back.
Through prayer, Kaitlyn overcome obstacles during the surgery and in ICU. I did not mention them before because I didn't want people to worry, but wanted to share them now to let you know that your prayers were appreciated and answered. I also wanted to share to let you know that Katilyn is doing wonderful after going through all she has gone through. It will also explain to people why Kaitlyn was in ICU for longer than expected.
During surgery, Kaitlyn's lungs collapsed and she had drainage tubes placed in each lung area. She was only able to breathe at 250 ml instead of the 1000-1250 ml, that she was able to before surgery. She had a team of respiratory specialist and a special machine to help her lungs get stronger. She was able to breathe at 750 ml as she left the hospital and is now up to 1000 ml. Her lungs are getting stronger each day. Prayers are being answered!!
She also lost a lot of blood during surgery. Two days after surgery she required two more units of blood because her blood pressure was extremely low (65/49) and her blood counts were also low. Kaitlyn's IVs were not working properly and it was difficult to get her the liquids she needed. One of Kaitlyn's good friends, Rachel, who was visiting her, was amazing as Kaitlyn received units of blood and had IVs burst. I would not have been able to do that in my teen years. I'm in the legal field because I don't like the sight of blood. Rachel, answered prayers, and other people got me through that day!!! Thanks again, Rachel!!
Kaitlyn also stopped beathing the morning before getting out of ICU because her airway was blocked. Her lungs were not strong enough to cough up the stuff still in her throat from the surgery. I was able to convince her nurse to just suction the stuff out and Kaitlyn's condition got so much better. That was a tough morning and prayer really got me through!!
We finally made it out of the house Sunday afternoon. We took a short trip to William Land Park. It was great to be outside. Rick came along with us just in case Kaitlyn fell again, as I am not able to get her up by myself from the ground. The weather was perfect and there was a gentle breeze. Kaitlyn walked about a half a mile. We sat in lawn chairs (Kaitlyn had pillows behind her) for about an hour. Kaitlyn took a book to read, but we mostly just talked. We probably did a little too much in one day because she was really tired and sore afterwards. Next time we'll do more sitting and a little less walking, but it felt so good to get her out of the house.
Yesterday, she had some friends from school come over. They watched a movie and Kaitlyn shared her stories about the hospital. The girls were talking about school starting. Kaitlyn will be doing independent home study for the first semester of school to allow her to heal more. She doesn't want to be bumped in the hallways and doesn't feel like she can keep up with a normal schedule for school right now. She will miss her friends and the social part of school, but I'm sure she will keep in contact with her friends via the computer and phone.
It has been 3 weeks since Kaitlyn's surgery and she is doing as good considering the extensive surgery. Some people have been asking exactly what Kaitlyn had done to her back, so I thought I would share (now that I understand it a little better, too). Kaitlyn had one rib fully removed. That rib will not grow back. The doctors cut out sections of 5 ribs in order to hammer those ribs back into place. They will eventually grow back together. Before the surgery, Kaitlyn had a hump on her right shoulder. That hump is now gone!! Praise God!!! Then metal rods were placed on each side of her spine from the top of her spine to just before the lumbar area. The doctors were amazed that once the top of her spine was aligned that the bottom part just corrected itself. This is great news because Kaitlyn will be able to bend at the waist and still grow in that area of the back.
Through prayer, Kaitlyn overcome obstacles during the surgery and in ICU. I did not mention them before because I didn't want people to worry, but wanted to share them now to let you know that your prayers were appreciated and answered. I also wanted to share to let you know that Katilyn is doing wonderful after going through all she has gone through. It will also explain to people why Kaitlyn was in ICU for longer than expected.
During surgery, Kaitlyn's lungs collapsed and she had drainage tubes placed in each lung area. She was only able to breathe at 250 ml instead of the 1000-1250 ml, that she was able to before surgery. She had a team of respiratory specialist and a special machine to help her lungs get stronger. She was able to breathe at 750 ml as she left the hospital and is now up to 1000 ml. Her lungs are getting stronger each day. Prayers are being answered!!
She also lost a lot of blood during surgery. Two days after surgery she required two more units of blood because her blood pressure was extremely low (65/49) and her blood counts were also low. Kaitlyn's IVs were not working properly and it was difficult to get her the liquids she needed. One of Kaitlyn's good friends, Rachel, who was visiting her, was amazing as Kaitlyn received units of blood and had IVs burst. I would not have been able to do that in my teen years. I'm in the legal field because I don't like the sight of blood. Rachel, answered prayers, and other people got me through that day!!! Thanks again, Rachel!!
Kaitlyn also stopped beathing the morning before getting out of ICU because her airway was blocked. Her lungs were not strong enough to cough up the stuff still in her throat from the surgery. I was able to convince her nurse to just suction the stuff out and Kaitlyn's condition got so much better. That was a tough morning and prayer really got me through!!
I share all this to let you know that I'm proud of Kaitlyn for going through all of this and not complaining about her situation. The only time she complains is when she is in too much pain. She has been a real trooper through all of this.
Once Kaitlyn is feeling better, she will post some more pictures.
Ruby
Friday, August 8, 2008
August 8, 2008
Hi all,
Kaitlyn wanted to post yesterday, but she just wasn't up to it. She took a hard fall while walking back to the couch and landed on her bottom. We're not sure why she fell because there wasn't anything in her way and the floor wasn't wet. Sometimes we call her "Little Miss Graceful" and I'm sure you can figure out how she got that name... ;-) She has been dizzy at times, which is probably because of the medicaiton. She seems to be doing fine and it doesn't seem to have done any damage to her back. Praise God!! However, the fall did cause her pain level to go back up. She is taking it easy today and hopes to post something herself later today. Please pray the her pain level goes back down and that we can cut back on her pain medication again. Kaitlyn is wanting to get out of the house. We are going to try a small road-trip tomorrow and maybe a walk in a park.
Until later...
Ruby
Kaitlyn wanted to post yesterday, but she just wasn't up to it. She took a hard fall while walking back to the couch and landed on her bottom. We're not sure why she fell because there wasn't anything in her way and the floor wasn't wet. Sometimes we call her "Little Miss Graceful" and I'm sure you can figure out how she got that name... ;-) She has been dizzy at times, which is probably because of the medicaiton. She seems to be doing fine and it doesn't seem to have done any damage to her back. Praise God!! However, the fall did cause her pain level to go back up. She is taking it easy today and hopes to post something herself later today. Please pray the her pain level goes back down and that we can cut back on her pain medication again. Kaitlyn is wanting to get out of the house. We are going to try a small road-trip tomorrow and maybe a walk in a park.
Until later...
Ruby
Wednesday, August 6, 2008
Blessings!
Hi everyone!!
I just wanted to let everyone know that we are feeling very blessed right now. Even though Kaitlyn is still having a tough time doing things, that used to come very easily, we are both feeling blessing and wanted to share our gratitude for all the love and support we have been receiving. Last night I was able to sleep the entire night because our good friends, Margy and her daughter, Katie, spent the night. Margy was a great surrogate "Mommy" and helped Kaitlyn move every two hours and gave Kaitlyn her medicine during the night. It felt so good to be able to sleep all night long. Thank you!!
Kaitlyn, Alex and I also wanted to say thank you to the wonderful people who have been making us very delicious meals. That has been so helpful. It gives me more time to rest and spend time helping Kaitlyn. The comments, cards and special gifts have made Kaitlyn's days brighter. It helps her to focus on the good things in life. We feel very blessed to be surrounded by loving people!!!
Also, a special thank you to Laura and Renay for coming over and watching Kaitlyn at separate times, so that I could get out for a little while and take care of stuff that I needed to do. Also, a special thank you to Rick for running errands for things we need. Thank you!!!
I feel as though I have an infant again, that can not be left alone. Kaitlyn has been really good most of the time. She has been saying thank you for everything that I do for her. This is not typical for a teenager!!! I'm enjoying spending time with her while she recovers.
Yesterday, with the help of her friend, Katie, Kaitlyn was able to walk down to the end of the street. She didn't want to go outside until yesterday, but she finally decided it would be good to get outside. She is nervous about a dog running up fast and having to run. It is still hard for her to breathe very deep, but it gets a little easier every day. Her lung capacity has really increased this week.
Feel free to visit Kaitlyn, but please call first to make sure that she will be awake and that she is not in too much pain. Thanks again, Ruby
P.S. Kaitlyn is going to try to post more tomorrow and add more pictures.
I just wanted to let everyone know that we are feeling very blessed right now. Even though Kaitlyn is still having a tough time doing things, that used to come very easily, we are both feeling blessing and wanted to share our gratitude for all the love and support we have been receiving. Last night I was able to sleep the entire night because our good friends, Margy and her daughter, Katie, spent the night. Margy was a great surrogate "Mommy" and helped Kaitlyn move every two hours and gave Kaitlyn her medicine during the night. It felt so good to be able to sleep all night long. Thank you!!
Kaitlyn, Alex and I also wanted to say thank you to the wonderful people who have been making us very delicious meals. That has been so helpful. It gives me more time to rest and spend time helping Kaitlyn. The comments, cards and special gifts have made Kaitlyn's days brighter. It helps her to focus on the good things in life. We feel very blessed to be surrounded by loving people!!!
Also, a special thank you to Laura and Renay for coming over and watching Kaitlyn at separate times, so that I could get out for a little while and take care of stuff that I needed to do. Also, a special thank you to Rick for running errands for things we need. Thank you!!!
I feel as though I have an infant again, that can not be left alone. Kaitlyn has been really good most of the time. She has been saying thank you for everything that I do for her. This is not typical for a teenager!!! I'm enjoying spending time with her while she recovers.
Yesterday, with the help of her friend, Katie, Kaitlyn was able to walk down to the end of the street. She didn't want to go outside until yesterday, but she finally decided it would be good to get outside. She is nervous about a dog running up fast and having to run. It is still hard for her to breathe very deep, but it gets a little easier every day. Her lung capacity has really increased this week.
Feel free to visit Kaitlyn, but please call first to make sure that she will be awake and that she is not in too much pain. Thanks again, Ruby
P.S. Kaitlyn is going to try to post more tomorrow and add more pictures.
Saturday, August 2, 2008
Hello, everyone.
It's Kaitlyn! I'm finally able to sit in a chair and post a blog for myself. A big thank you to Jill for keep up on the blog while I was unable to update you all on my progress. We couldn't have done it without you, Jill! For those of you who have been keeping up with the blogs and leaving comments, I thank you all as well. It was very encouraging to hear from all of you, even on the days I wasn't really up to having visitors. Although I'm still not back to my normal self yet, I thought it would be a good idea to let you all see just a glimpse of all that went on in the hospital. Here are a few pictures of me before and after the surgery, and during my recovery in ICU, the normal patient floor at Shriner's, and back here at home.
Kaitlyn
Kaitlyn
Friday, August 1, 2008
August 1, 2008
Hi all,
Sorry there haven't been any posts for a few days. I thought that once Kaitlyn was home it would be easy to sit down and post, but we have been on a 2-hour schedule to move Kaitlyn's position and a 4-hour schedule for medicine. I never thought I would be on an "infant-type" schedule like this again, but it is bringing back memories. Kaitlyn and I are spending a lot more time together than most teenagers and their parent. It has been good. She requires a lot of help to do simple things that use to come with ease (eating, getting dressed, showering, standing, sitting, walking, turning over in bed). She has had a great attitude, but gets frustrated that she can't do these things on her own.
Kaitlyn is doing better each day. She has been encouraged by all the love and support around her. She wanted write her own post today, but just wasn't up to it quite yet.
I am happy to report that her back is much straighter than it has been and she is glad about that. She says that it doesn't feel right yet because she was used to it the other way, but it feels better each day. Kaitlyn is resting a lot and gets up each time she is awake to move around a bit. She is happy to be home and not have people waking her up all the time.
A special thank you to my friend, Jill, for keeping everyone posted while we were in the hospital!!! Also, for coming and spending a night with Kaitlyn when I so needed rest. Thank you also to everyone who visited and brought smiles to Kaitlyn!!! Thanks for understanding when Kaitlyn didn't want to see anyone when she was having a bad day. Thank you for the comments that Kaitlyn was able to read even when she didn't feel like seeing anyone. Thank you to the visitors who were able to make Kaitlyn laugh and open up her lungs. There are so many other things that we are thankful for, so if I didn't mention them, please know that we are still grateful.
I will post more tomorrow and share some of Kaitlyn's thoughts as well. I also hope to post some pictures of Kaitlyn's journey. I'm not quite sure how we did that before, but I'm sure my son can show me how tomorrow.
Thanks again, Ruby
Sorry there haven't been any posts for a few days. I thought that once Kaitlyn was home it would be easy to sit down and post, but we have been on a 2-hour schedule to move Kaitlyn's position and a 4-hour schedule for medicine. I never thought I would be on an "infant-type" schedule like this again, but it is bringing back memories. Kaitlyn and I are spending a lot more time together than most teenagers and their parent. It has been good. She requires a lot of help to do simple things that use to come with ease (eating, getting dressed, showering, standing, sitting, walking, turning over in bed). She has had a great attitude, but gets frustrated that she can't do these things on her own.
Kaitlyn is doing better each day. She has been encouraged by all the love and support around her. She wanted write her own post today, but just wasn't up to it quite yet.
I am happy to report that her back is much straighter than it has been and she is glad about that. She says that it doesn't feel right yet because she was used to it the other way, but it feels better each day. Kaitlyn is resting a lot and gets up each time she is awake to move around a bit. She is happy to be home and not have people waking her up all the time.
A special thank you to my friend, Jill, for keeping everyone posted while we were in the hospital!!! Also, for coming and spending a night with Kaitlyn when I so needed rest. Thank you also to everyone who visited and brought smiles to Kaitlyn!!! Thanks for understanding when Kaitlyn didn't want to see anyone when she was having a bad day. Thank you for the comments that Kaitlyn was able to read even when she didn't feel like seeing anyone. Thank you to the visitors who were able to make Kaitlyn laugh and open up her lungs. There are so many other things that we are thankful for, so if I didn't mention them, please know that we are still grateful.
I will post more tomorrow and share some of Kaitlyn's thoughts as well. I also hope to post some pictures of Kaitlyn's journey. I'm not quite sure how we did that before, but I'm sure my son can show me how tomorrow.
Thanks again, Ruby
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