Okay so you know when I promised a full update when I had the chance. Well I finally figured out that I could write it all down at the hospital while Apis slept and just save it in Evernote till I got home to post it over wifi. Somhere it is a full hour by hour account of the last four days. Warning that it is (very) long and at times quite graphic, but my writing is no where near as eloquent as Apis' so it maybe a little dry too.
EDIT: and now that I've got a full computer to write on I can clean this up. And I made it longer...
5:15am - arrive at admitting
7:30am - arrive at OR
8:00am - see anesthetist
9:00am - operation begins
10:15am - spoke with Tammy, the liaison nurse and all was okay.
12:15pm - missed call from Tammy but everything was okay. Wish I could have my ringer on, but I held my phone tight for the rest of the day so I wouldn't miss any more calls.
1:30pm - spoke to Dr. T over the phone, surgery was complete and the chemo wash was beginning.
Over the phone he mentioned that her spleen removed but so had all of the tumor. No colostomy bag was required. Her diaphragm had been operated on to scrape away the tumor. Meet with him at 3 or 4 outside the ICU.
3:15pm - spoke to Tammy, Apis is out of surgery. They will wake her up in OR. Transfer to ICU section B in about 30 minutes.
3:30pm - met Dr. T outside the ICU. The following is point form from my conversation with him.
- 3 weeks in the hospital
- 18 operations preformed
- 2-3 units of blood lost
- ovary and uterus removed
- bit of kidney removed
- breathing support required
- because diaphragm operated on, stripped away some of it.
- gallbladder removed
- omentum removed
- about 1" of right colon next to where the appendix had been was removed.
- move to unit 102 after ICU
- needs about 2-3 days in ICU
- 4 chemo treatments afterwards in BC to be safe
So overall I was greatly relieved to speak with Dr. T in person. He was very reassuring and it was wonderful to hear that the operation had gone as expected. The list of operations matched the expected ones that he had given us in April and none of the potential bad ones he had warned us about.
4:00pm - Apis was in the ICU and they let me in to see her.
She had the following tubes installed already when I got there:
- NG tube in her nose removing anything in her stomach
- breathing tube in her mouth
- later replaced by an oxygen tube to her nose
- 3 port IV in her chest - used for pain medication, saline, nausea medication, and later a nutritional supplement.
- arterial mainline in her left wrist - use for draw blood and to monitor her blood pressure all the time.
- 4 or 5 (or more?) heart rate sensors all around her chest. EKG?
- finger sensor - monitor O2 and heart rate too.
- 2 chest drains on suction
- 1 abdomen drain into a small sack, called a JP tube
- 1 larger abdomen drain on suction, this one was a JP tube too
- IV in left hand for more ports when needed. Sometimes it was used for an extra saline drip.
It was quite hard to see her lying there that first night, almost always completely asleep, with all of those tubes. The hardest was the breathing tube because she kept gagging on it. She needed that one because of the operation on her diaphragm had left her needing the assisted breathing. The ICU staff were phenomenal. She always had a nurse watching her 24hrs a day with 1-2 nurses per patient. There were ICU doctors around lots too.
That evening during the brief periods of lucidity, Apis was able to get across a few things with hand gestures and by spelling letters with her fingers on the palm of my hand. I am terrible at that game, but we were able to communicate a bit.
She wanted to hear how the operation went and what organs had needed operating on. I am pretty sure she didn't remember much of what I told her that night, but I know that it made her feel better hearing it then.
10:00pm - I headed out. It was a long day and if I was going to be any used I needed a bit of sleep myself. Especially since I had flown in at 10:30pm the night before and neither of us slept well.
9:00am - arrived back at the ICU, Dr. T had already been and had told the nurses that her recovery was off to a good start.
10:00am - Apis was able to scribble a few words on paper with a pen to communicate pain or nausea or just itchiness. Wish I had kept the stuff she wrote but I forgot to grab it when we left the ICU. She asked again about the operation and wanted to hear about how Aiden was doing and what people had said on her blog and Facebook.
12:00 pm - removed breathing tube and added nose tube for O2 after ICU doctors finally made it around on their rounds.
2:00pm - changed pain management to a patient managed approach with the button. She was still receiving a steady drip though on a smaller dose. She was on Fentenol at the time, which is immediate but short lived pain relief.
3:00pm - physiotherapist came in to give her some breathing exercises to help get her diaphragm moving again and open up the bottom of her lungs.
1) short sharp intakes of breath thru the nose
2) using breathing machine (sperometer?) longer intakes of breath thru mouth
4:00pm - short periods of lucidity, difficult to talk because of the soreness in the soreness of the throat. But she was still able to whisper a bit. In the evening she slept lots and in between I read her comments from her blog and Facebook again.
11:00pm - headed out for some rest
Overall it was another very successful day, though it was all small steps I was certainly encouraged by her progress. They had hoped to have her moved over to the unit that day but there were no beds yet. I think it was a good move to keep her there for one more night as the care in the ICU is amazing.
Overnight she had difficulty controlling the pain. There was too much reliance on Apis waking up every 6-10 minutes to activate the button that she wasn't able to sleep much at all. In the night they changed her over to a different medicine called Hydramorphol. It was completely patient managed, but stronger and longer lasting just not quite as immediate. This help a lot over the next couple of days.
9:00am - arrived back at the ICU. The nurse said that the bed in unit 102 likely would be ready this morning. He explained the change in pain management. The doctor had already been around to see her. Apis was still completely asleep when I got there.
10:00am - 2 units of type O- blood were delivered and administered. The nurse said that they had been monitoring her hemoglobin count since the surgery and it was still pretty low. Given that she lots 2-3 units of blood during the operation it wasn't much of a surprise. Still to me it felt like a little step backwards, especially as she was still fast asleep. They did remove the arterial mainline though as it was given inaccurate readings on her blood pressure (like 212/85 I think it reached) yet the cuff said it was much more in line (145/75).
11:30am - Apis woke up and was more lucid than the past couple of days. We practiced her breathing exercises and spoke about the changes in the night.
12:00pm - she was back asleep again, but it was good to be able to talk normally with her. Relieving my feelings that things were a little bit of a downer that morning.
2:00pm - room in 102 ready. They disconnected the EKG monitors and the wrist IV.
3:00pm - headed to 102 to the high observation room where there were 4 patients to a room.
4:00pm - all set up in 102, the tubes were down to:
- NG tube
- 3 port IV in chest but that was down to two lines being used for saline, nutritional supplement, and pain (upon her button push)
- 2 chest drains
- 1 abdomen pump
- 1 other abdomen drain which was changed from suction to a pump
- and the catheter.
5:00pm - they changed the dressings on the main incision and I was able to see what it looked like for the first time. The skin along the nice neat line is slowly healing back together and there are staples all the way along so it looks like a big zipper.
8:30pm - I went to dinner as I was getting a bit hungry. It had been a great day getting moved over but that wasn't the biggest development of the day.
9:00pm - when I got back to the room, she was sitting up on the side of the bed. Then she stood up with the support of the nurses. And then she started walking in place! Just amazing how she managed to be mobile about 72hrs after getting out of her major operation.
10:30pm - her parents paid her a short visit. It was a very emotional time for them as it was the first time they got to see their daughter after dropping us off early Thursday morning. We only spent 15 minutes or so with Apis as the rest of her room mates were already asleep.
11:15pm - i headed out with her parents for some rest.
What a momentous day. I was extremely proud of how much Apis accomplished. She is definitely motivated to recover as quick as she can.
8:00am - arrived at unit 102 a bit earlier today to see if I could catch the doctor.
8:30am - Dr. H came in to visit, so I had made it early enough. She explained that they had conducted some tests over night as Apis had been feeling pressure on her chest again in the night. All of the tests were positive. I asked about milestones from here and she explained that some of the other tubes would come out in the next 4-5 days as the drains stopped getting much out and the NG tube was not as necessary.
9:00am - Apis had another rest for a bit.
10:00am - she woke up and did her breathing exercises. She is having more frequent and longer periods of lucidity and we can carry on fully conversations.
10:30am - she tried out a breathing machine called a nebulizer to help loosen congestion in her lungs
11:20am - she got up out of bed again, this time to go to the washroom to get washed and refreshed. She felt good but exhausted after that. She fell right asleep once she was back in her bed.
12:30pm - Ula joined me at the hospital to see Apis
5:30pm - Apis had a big coughing fit and expelled a lot of congestion from her lungs, which the nurses were very excited about. It was kind of like when a new born is at the hospital and the nurses there are over joyed at the first meconium. It feels genuine and some how not entirely real at the same time.
7:30pm - Apis stood up again and marched in place. She got to take several large deep breaths while standing which is apparently ideal for opening up the lungs.
10:30pm - I headed back to Ula's for some rest.
Overall the day had another couple of great milestones achieved and definite progress is being made. Apis is starting to wonder if this really is progress, but I've reassured her that what may seem like small steps now, are actually pushing her forward at great strides towards recovery.
As mentioned in my brief update Apis got up around 9:00am on this day and walked around. She walked with assistance all the way to the bathroom in the high observation room. There she got a bit of a refresher (brushing teeth at the sink, brushing her hair, etc) which was nice for her. I had tried to get there by 8:00am (which I did) to meet Dr. T. But it turned out that he had been by at 7:55am and then was tied up in a surgery all day. Dr. H came by though (she was the one we met at the consultation) and had lots of great things to say and answered a lot of our questions.
When they brought her back they had her sit in a big comfy chair for 15 minutes to help sit up some more. She was pretty tired after that so she climbed back into bed and had a good snooze.
Around 3pm (while I was out grabbing lunch at Ula's for a bit and Apis' father was with her) they moved Apis to a semi-private room. With only two beds it had a bit more room in it. The other patient in the room was released shortly afterwards so by the time I got back at around 6pm I think it was, she had the room to herself. It was nice and peaceful though there was a lot of activity and the nurse was a bit harried at the end of her shift. Things calmed down quite a bit when the night nurse came on duty.
I headed out at 11:00pm hoping that Apis would have a good night sleep with the silence of an empty room (other than the nurse checking vitals every hour and the blood work conducted at like 3am in the morning every day... I didn't know that till we were over in the semi-private room).
Sorry I missed the update for the 12th, it was the day that I had to fly back to Vancouver so it was an emotional and tiring one.
I aimed to get to the hospital by 7:45am to catch Dr. T. And again I missed him. I didn't really have any new questions for him, I was just looking forward to catching him before I headed out. Apis had had a bit of a rough night. There was a new patient beside her, brought in by the ER people for something about his stomach or hernias or something I didn't catch it all. In any case there was much hustle and bustle in the middle of the night so it was hard to sleep. It also took some getting used to being in a room where the nurses had more people to watch over so less time with each patient.
Apis did have more great progress on Tuesday. Her JP tubes were removed in the morning. I guess they had finished sucking out all the remaining chemo medicines and could be closed up.
She also managed to get up and walk out to the nurses station, mostly unaided though myself and the student nurse were right beside her. She was able to get another refresher in the bathroom and did lots of her breathing exercises.
Dr. T did come around again in the mid morning. He said that her surgery was a success and that she was doing exceptionally well in her recover, better than most I think he said.
I had to head out at 2pm to catch my flight back to Vancouver. We had decided earlier in June that it would be best to spend time helping my son cope here by having him maintain his routines with school and baseball. It was really hard to leave that hotel room. I felt that I was an instrumental part of her recovery and needed to be there too. I'm very glad that her family was all around her too to help make that a bit easier.
She had a good evening with her sister and got to walk some more and had some medication for nausea as well which always worked when that crept up.
Today started off with a difficult text from her sister. Apparently the night had been a really rough one as Apis had struggled to get the attention of the nurses. Her sister worked with the nurses and I think came to a resolution. I believe it involved clamping the call button close to her hand so that it wouldn't get away from her.
But the day progressed a lot better than the night. As early as 9am they were in and had removed the catheter. That got her up and walking to use the bathroom. They also clamped her NG tube, meaning it wouldn't suck anything more out of her stomach. She had some x-rays and got cleaned up.
By my count that leaves her with:
- 2 chest tube drains
- mainline with the 3 IV ports in her chest
- oxygen nose tube
and that's it.
Sounds like she was even cracking jokes around noon after some more rest. She had needed some more Benadryl for itchiness. In the afternoon she made a big lap around the unit and then at around 4pm she had the NG tube removed. That tube was probably the most difficult one to deal with (after the breathing tube of course). She was super happy to have it out. She took some pictures with her folks and her spirits have been really high in the afternoon. Her mom stayed with her for the rest of the evening.
I really hope that she has a much better night tonight.