Santa and Discharge from the Hospital

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.

Scariest Day Yet–Karlee Coded in the Clinic

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.

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.