In the past week Ryley has lost his 2 front teeth. The tooth fairy is going broke, but it is good to finally see him losing some teeth.
This past Sunday Karlee wasn’t feeling too good, and around noon we took her temperature and it was over 39. After a quick call to the on-call Oncologist Jennifer and Karlee were on their way up to the unit. We had a bit of a scramble getting out of the house as Ryley was going to Skillz at the same time. They dropped us off at Skillz and then realized they didn’t put freezie cream on Karlee’s port so they had to turn around and head back home. They took blood and cultures when they got to the hospital. When they saw the doctor he was concerned about a crackle in her lung so he ordered an x-ray. He wanted to hold off on the antibiotics until he had seen the x-ray so they were a little delayed. There was no radiologist there on Sunday so he read the x-ray himself and felt there were no issues. So after a quick dose of antibiotics they were back to Grandma’s just after 6pm and in time for a slightly late supper.
The fever continued Sunday night and Monday morning. She was supposed to have a penguin celebration at school and the wrap up for their Generosity Days benefiting Camp Kindle, but was not feeling up to going. She still had the fever and was accessed so it just wasn’t possible for her to be there. The supplies for Camp Kindle are just incredible and have far exceeded all expectations. Somerset School really is an incredible group of kids, parents and teachers! Everything will be put to good use and will be appreciated by the kids and staff at Camp Kindle!
Monday afternoon Dad got to take Karlee to the clinic to get another dose of antibiotics. We got there at 2:30, got our isolation room and got the drugs really fast. We were out of there just after 3:30 and on our way home! It was a great visit as it was very fast. We stopped at Fabricland for Mom. She needed some fabric and the other 3 Fabricland’s we had tried were sold out. I think I might have cheered in the store when they had it!
Monday evening she still had her fever going. Thankfully we were allowed to give Tylenol so we were able to keep her comfortable. Tuesday was Valentine’s Day and again Karlee didn’t get to go to school for her party. We dropped off the cheese and crackers for the party and her Valentine’s with another parent and came home to let her rest. Mom went to school to volunteer for special lunch with the rest of the school. When she got back Karlee was again warm. When we took her temperature it was 38.7 so we called up to see if they wanted us to give her Tylenol this close to her appointment. The nurse said to go for it since we would be in in 2.5 hours and could be checked out then. No sooner had we given her the Tylenol than the phone rang again. I figured we were being told not to give her the Tylenol, but they just wanted to see her as soon as possible. So after a little juggling we were off to the clinic again.
When we got to the clinic they put us in an exam room as an isolation room. Nurse Allison was in shortly and informed me that this was the room that Karlee had coded in with her. She quickly took some more blood and took us off isolation. On the way in the clinic Karlee got a cute Valentine bear, candy and a heart balloon. It was a nice visit for Dad as he got to see a couple of doctor, nurses, Laura (social worker) and Chantel (Child Life Specialist). We saw Dr. Lewis today and he wasn’t too concerned about the fever as it seemed to be getting lower and was responding well to Tylenol. After a pretty thorough physical exam he decided that we would go ahead with chemo today assuming her cultures from Sunday were still negative. While we were waiting for chemo Chantel came by and Jennifer donated a couple of pair of slippers to the unit. She is trying to donate 2 pairs a month to the unit or clinic. Chantel said the kids enjoyed getting slippers when they are on the unit.
We had a fun little time playing DS and watching movies. They gave Karlee the chemo without any issues and we were on our way home again. Dr. Lewis just wanted us to try and control her fever with Tylenol so hopefully that works and we don’t end up at the hospital again this weekend. Before supper we gave the kids their Valentine’s gifts. This year instead of candy and stuffed animals we got them each a little lego set. They both loved them and had a great time building them.
Today was the 100th day of school so Ryley’s class had to dress up as though they were 100 years old. He really enjoyed the idea and ran with it. He got a cane, wore a flannel shirt and a pair of pants. Mom did a comb over on his hair and dyed it white and he wore his glasses on his nose. Even his teacher commented on what a great job he did dressing up.
Jennifer has been busy making slippers as we seem to be getting some business off facebook (www.facebook.com/slipperbyjennifer).
The head shave has been going really good so far! We have met our goal already and have increased it by another $1,000. If you want to sponsor us you can do so at the following link: https://secure.csfm.com/kidscancer/shaveyourlidforakid/home/profile.php?participant_id=746992561327074991 We would like to thank everyone for the incredible support for this event!
Christmas Eve was a nice family day that we enjoyed together. We started the day off with a trip to the zoo. We have done this a couple of times as we find it is nice and quiet and the animals seems to be more active. The animals this year weren’t overly busy, but the zoo was nice and quiet. After the zoo we went to Church with Grandma. Her Church always does the story of Christmas and invites the kids to dress up and help in the telling of the story. Ryley was a Shepherd again and this year Karlee was a donkey. Cousin Everett joined Ryley as a Shepherd and cousin Oliver was a sheep. It was a very nice service and the kids had a great time. We went back to Grandma’s for some Chinese food and then headed home to get ready for the big day. Christmas Eve the kids both get to open one present and it is always pyjamas and a book. They enjoy the tradition and then they get ready for bed and we read Twas The Night Before Christmas as a family.
For once the kids were not up at the crack of dawn bugging us, but they both managed to sleep in until 7am. We opened our stockings first and then headed downstairs to see what was under the tree. The kids were again spoiled. Karlee got a big Disney Cinderella, Barbie’s, doll clothes, doll furniture, movies and I am sure there was more. Ryley got lots of lego, an iPod touch, a winter sleeping bad, movies and more. Jennifer and myself were well looked after too. After we opened everything at home Jennifer made a few phone calls to Nova Scotia and then we were off to Grandma’s.
We beat Randy and Catherine by about 5 minutes getting to Grandma’s. The kids once again devoured the presents and were done opening everything in about 15 minutes. They were spoiled again. We then had breakfast and the kids started playing with all their new toys. We spent the majority of the day at Grandma’s only coming home for a couple of hours in the afternoon for a rest. Supper was excellent as always. Once we finished eating we went home and the kids fell asleep exhausted.
Boxing day we decided to get up early and go down to Canadian Blood Services and donate blood. We had called on Christmas Day to get an appointment as we realized it had been a while since we donated. We try to donate regularly, but it isn’t always as easy as we would like. Knowing all the kids at the ACH that need blood motivates us to donate more than we did before. We stopped at London Drugs on the way home to do a little Boxing Day shopping. Jennifer’s camera had pretty much given up on us over the last few weeks so we were looking to replace it. We got a great deal on a camera and a set of headphones for Ryley and didn’t have to deal with any crowds so we were happy. On the 27th we went to Jennifer’s Aunt Dorothy’s for supper. Donny, Danny and Eva were there an we had a great visit and a good meal with them.
Thursday the 29th was Karlee’s make-up procedure day after the delay last week and then all the issues. Procedure days are always long days, but it was a different feeling for both Jennifer and myself after the issues last time. The visit with the doctor yielded no new information about what might have caused the code blue last time. Everything went normally and Karlee went in for her procedure around noon. Jennifer found this time was just as bad as the first surgery that Karlee had. Waiting for them to bring her back seemed to take forever. When she got back everything was fine, but they had to give her extra sedative to keep her from moving. We think the doctors wanted to limit the amount of sedative so they tried it with a lower level. She ended up getting 6 pokes in the back (instead of the normal one) and was very sore. Everything else about procedure day seemed very normal except her chemo levels were increased.
New Year’s Eve we headed to Bergen around noon. We were going out there to get together with Frances, Roland, Barry, Cyndie and Sean. We had a potluck supper and then sat around the fire bringing in the New Year. It was great to see Sean fly in to visit and it was nice to see Barry and Cyndie again. We don’t see them very often even though they only live 45 minutes away. The kids enjoyed trying to stay up. Karlee made it until about 11 and Ryley was awake to bring in the New Year. The next morning we had breakfast and then went skating on the pond. The kids loved skating outdoors again (first time this year)!
We hope everyone had a safe and Happy New Year!
Wednesday morning Dr. Ali stopped by and told Jennifer they were going to keep them another night. He wanted to wait for all the test results to come back and for all the doctors to look over the information and make sure they knew what had happened. Karlee’s fever had finally broken about 4:30 in the morning and she was feeling much better. It was a long night for them since the nurse was in every hour to check Karlee’s temperature and take her vital signs.
Tuesday night they had put Karlee on another dose of antibiotics and then decided to give her a different one to help with the fluid on her lungs. All the antibiotics and fluids they were giving her caused her to pee very often and gave her a little diarrhea. It is nice that the hospital provided PJs since every fart seemed to be a little more than just a fart. Karlee was on issolation so she wasn’t allowed out of her room so it made for a long day. She also had an IV in her arm which limited her mobility. Thankfully they put it in her right arm so she still had her left to colour, do crafts and eat.
I arrived up there around 2pm and they were both standing at the windows looking for Santa. I figured if Santa was coming to visit he would be walking through the halls, but was I ever wrong. Santa, Mrs. Claus and a couple of elves showed up with the reindeer. Karlee quickly determined that this had to be the real Santa Claus since he brought reindeer and they only live at the North Pole with the real Santa. He walked all around the side of the hospital by us and then walked the path all around the units. It was great being on the main floor since we were very close to him. Right after Santa left Bingo started. Karlee had to play in her room so she had a walkie talkie and played over the airwaves. She won twice and got 2 lucky numbers. She won some great prizes and even got one for her brother. Child Life then brought by a ginger bread house for her to decorate. Karlee had fun decorating and Mom had fun eating the jube jubes. Wednesday night on the unit is Kids Cancer Care pizza night. We all enjoyed pizza for supper and then I headed home to pick up Ryley from Grandma’s and get him home to bed.
Thursday morning Dr. Ali again stopped by and gave Jennifer the low down on what he thought. He had seen the echo cardiogram results and there is nothing wrong with Karlee’s heart; the blood cultures had not turned up anything that was concerning and the chest x-ray showed some fluid on her lungs, but nothing to be concerned about. He figured that while they were trying to get her port working they had moved it around a little and hit her Vagus nerve. This nerve runs from her brain, through her chest and down to her groin. It regulates organ function and he figures it got bumped or jarred and that is what caused the issue. He figured there was very little chance of that happening at home since she would not be accessed at home. He said after rounds they would be discharged and on their way home. After several delays and false starts Ryley and I came up to wait for them to get the chemo to bring home.
While we were waiting and the kids were jumping around like fools, the Chaplain from the hospital stopped by to talk to us. Marcel had stopped by before an played some music for us and visited when Karlee was first on the unit. He told us that he had heard the code called Tuesday, but had assumed it was a test and was never told that the patient was still in the hospital. We had a nice chat with him and I found out some more information about the code. When I was told about the code I was told it was only 30 seconds that she was out. Today I found out that she was non-responsive for about 3 minutes.
It is nice to have everyone at home. Everyone finished their shopping today and tonight and now most of Christmas is wrapped and ready to go. Hopefully we will have an uneventful and quiet Christmas.
We would like to wish everyone a very Merry Christmas and a Happy & Healthy New Year. This year has had it’s share of ups and downs, but at the end we have made it through with the support of everyone around us. It means so much to get an e-mail, a facebook message, a text message or a phone call. Just to know that people can take the time out of their day to think about us is very comforting.
Before I get into too much detail I want everyone to know that Karlee is doing good and everything seems normal now. This afternoon she was doing crafts and colouring and acting normal.
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| Right before the code |
I was going to continue trying to catch up with some of the blogs from the start of the school year, but now it seems more important to detail what happened today. I will still try and go back and get some of the other stuff caught up over the Christmas break.
To get to what happened today we need to go back a couple of days to Sunday. Early Sunday morning (2:00am or so) Karlee wasn’t feeling good. She had a fever and vomited in her bed. Jennifer took her temperature and she was well over 38. First thing Sunday morning we paged the on-call Oncologist and Dr. Ali called us back. He wanted Karlee to come in, but needed to figure out where to put her as the unit was full. He called back and they had one of the day rooms available. Jennifer and Karlee went up there and saw Dr. Ali. He was concerned about her cough and order a chest x-ray since he heard a crackle in her lungs. The x-ray came back pretty good, but not pneumonia. He gave her a dose of antibiotics and told us to come back on Monday for another dose. Monday Dad and Karlee went back and got her another dose. She had come home accessed and on Monday her port wouldn’t work. They reaccessed her and everything went fine.
Tuesday morning was supposed to be a normal procedure day. Jennifer and Karlee were at the hospital for 9am and were placed in an exam room since Karlee needed to be isolated due to her cough. The exam room is very similar to a doctor’s office room. There isn’t a bed or anything it them; just an exam table and a few chairs. Dr. Singh saw Karlee and decided to delay her due to the cough and not wanting to risk putting her under. After seeing Dr. Singh they were going to quickly give her some fluids and then send her home. Her port was again not working so they had her lay on her back to see if it would allow them to pull some fluid or push some saline.
At this point her eyes went kind of funky and she stopped breathing and turned blue. The nurse quickly called opened the door and called for a doctor. Dr. Singh and Greg (one ot the nurses) came rushing in. They determined that the oxygen in the exam room wasn’t working. Greg took over at this point and grabbed Karlee, told everyone to get out of his way and ran to the clinic. He took over an empty bed and told the other nurse to call a code. Very quickly there were a room full of people in the clinic all around Karlee. They got an IV started in her arm and pushed epinephrine to kick start everything. During this time there were people poking her ankle, fingers and toes to try and get a line started and to take blood-sugar levels. They quickly got her breathing again and found a pulse. They had to push another drug to slow down her heart since they got it racing pretty good. From somewhere a crash cart had appeared and all the people who needed to make everything work.
During this time one of the social workers had taken Jennifer and just reassured her and kept her calm. They had also magically moved the other patients that were beside the bed that Karlee was in. Jennifer was very shaken by everything that happened and some of the other parents stepped up to reassure her and offer support. The primary nurse and all the other nurses were great. The called me and suggested that I come down, but that Karlee was fine. Ryley was home sick so I arranged with Grandma to keep him while I headed to the hospital.
When I got there Karlee was looking better, but was still pretty out of it. Jennifer was still shaking and very stiff and sore from the stress. They were still monitoring Karlee very closely. It took almost 3 hours from the code until Karlee was talking and acting like herself. The kept her in the clinic and monitored her fairly closely until about 4 when they moved her over to the unit to keep her overnight so they could reassess her in the morning. She started to settle in and then vomited on herself and the bed due to her cough. Around 6pm she started to nap due to all the activity of the day. We grabbed a quick bite to eat and then I came home to get Ryley into bed. Karlee was getting ready for bed around 8pm and Jennifer was looking forward to some sleep too.
So… here is what we know about what happened and why. Karlee was completely non-responsive, not breathing and they could not find a blood pressure or pulse. They did find a very weak pulse in her groin on a second check. Once they got her breathing again they gave her an APGAR (same test as for babies) score of 1. They got an IV in her arm, but also poked her 3 times in the ankle and pricked both her finger and toe to check blood sugar. They once again took cultures and also did another x-ray and and echo cardiogram on her in the clinic to check her chest and heart. They pushed epinephrine and another drug to slow down her heart. The also gave her an antibiotic again to help combat the virus that is attacking her. She was on fluids and 2x the normal rate until about 3pm and now is on 50mL/h. As an interesting fact they had to cut her shirt off to get at her chest just like you see on TV.
They are still not sure what caused the code, but they have a couple of theories. The first one is that it could be the viral infection she is fighting combined with all the drugs in her system. We have been told that happens with cancer patients sometimes. The other theory is that there is some bacteria in the port (or the access needle) and that could have caused the problem. Hopefully tomorrow we will have some better answers and they will get discharged and be home so we can finish getting ready for Christmas.
That was the first code we have seen or heard called in the many times we have been at the hospital over the last year and a half. We have never heard another parent talking about a code happening to them or anyone else. It is really scary to think that it was our Karlee that needed to code team and the crash cart. It is very hard to actually slow down and think about what happened and what could have happened if there had not been such an incredible team all around us. Jennifer really summed it up when she said today was scarier that the cancer diagnosis. Everything has been going so smoothly and once you are in maintenance it is supposed to get easier. This is something you just never think about happening. There are lots of side effects to the medicines and complications, but you never think about a code.
I’m sorry about the rag-tag way of writing this one, but there is a lot of information to get across and hard to put into words. I would like to thank everyone for the text messages, phone calls and facebook messages of support. You guys have no idea how much that means to us. If you have any questions about what I have written e-mail me at ronlewis@telusplanet.net and I will try and answer them.
This past Sunday Karlee wasn’t feeling too good, and around noon we took her temperature and it was over 39. After a quick call to the on-call Oncologist Jennifer and Karlee were on their way up to the unit. We had a bit of a scramble getting out of the house as Ryley was going to Skillz at the same time. They dropped us off at Skillz and then realized they didn’t put freezie cream on Karlee’s port so they had to turn around and head back home. They took blood and cultures when they got to the hospital. When they saw the doctor he was concerned about a crackle in her lung so he ordered an x-ray. He wanted to hold off on the antibiotics until he had seen the x-ray so they were a little delayed. There was no radiologist there on Sunday so he read the x-ray himself and felt there were no issues. So after a quick dose of antibiotics they were back to Grandma’s just after 6pm and in time for a slightly late supper.
When we got to the clinic they put us in an exam room as an isolation room. Nurse Allison was in shortly and informed me that this was the room that Karlee had coded in with her. She quickly took some more blood and took us off isolation. On the way in the clinic Karlee got a cute Valentine bear, candy and a heart balloon. It was a nice visit for Dad as he got to see a couple of doctor, nurses, Laura (social worker) and Chantel (Child Life Specialist). We saw Dr. Lewis today and he wasn’t too concerned about the fever as it seemed to be getting lower and was responding well to Tylenol. After a pretty thorough physical exam he decided that we would go ahead with chemo today assuming her cultures from Sunday were still negative. While we were waiting for chemo Chantel came by and Jennifer donated a couple of pair of slippers to the unit. She is trying to donate 2 pairs a month to the unit or clinic. Chantel said the kids enjoyed getting slippers when they are on the unit.
Today was the 100th day of school so Ryley’s class had to dress up as though they were 100 years old. He really enjoyed the idea and ran with it. He got a cane, wore a flannel shirt and a pair of pants. Mom did a comb over on his hair and dyed it white and he wore his glasses on his nose. Even his teacher commented on what a great job he did dressing up.
