Monday, May 31, 2010

A quiet day

Today I got access to the WiFi network at RUH, and it works wonderfully... almost everywhere except in PICU (I'm writing this post from the chairs near the elevators just outside of PICU). The good news is that we probably won't be there much longer - Kol is scheduled for an MRI at 1:30PM Tuesday, and after that he will likely be leaving PICU and moving over to the general pediatric ward. That definitely feels like progress!

Kol has been doing pretty good today - not too much pain medication needed, quite a few alert periods, and more interactive. He's still not talking very much - we don't know if that's due to a sore throat from being intubated, or if there's something deeper at work. Even before the hospitalization, Kol has often preferred non-verbal responses - nodding, pointing, making up signs or trying to spell things out by drawing letters in the air - but now it's even more so.

Not too many visitors today - Lorne and Darlene Hovdestad stopped by on their way back from Christopher Lake and spent some time with us (Darlene went with Kristen on a short shopping trip, to watch Annika while Kristen went into a couple stores, and Lorne and I got to visit a bit while keeping Kol company). My uncle Elwood and aunt Irma stopped by for a short visit. And my parents brought the girls to the hospital a couple times - Kol was pretty happy to see them again. We managed to get a family picture too:
and the kids got to spend some quality time together:

Kristen will soon be going back to Mom and Dad's for some well-deserved rest in a real bed, and I'll spend the night with Kol - it should be a bit easier now, they've reduced the frequency of the tests to once every four hours instead of once every hour, so he'll be able to get some more solid sleep as well. Hopefully this will be a quiet night to match the quiet day.

Obert and Connie are back

Mom and Dad got back from Europe last night, and came up to visit Kol at about 11:30. Kol happened to be awake when they came, got a great big smile when he saw them, and gave them a big hug. It was so good to have them visit.

I went back to Mom and Dad's around 1AM, while Kristen stayed the night in PICU - we'll likely trade tonight, so Kristen can get a good sleep. My alarm on my watch apparently didn't go off, so I slept longer than I had planned - but I was awoken by my cell phone beeping, as apparently there were some problems with a web server that some of my clients are hosted with (fortunately, the problems appear to be at the hosting facility, so there's nothing I need to do to resolve it except wait for their sysadmins to fix it).

Kol was getting tired and grumpy last night - we get the impression that he's tired of the constant neuro checks (where the nurse checks his pupils, asks him to move different parts of his body, etc.), Kristen noted that he's got his "I'm not going to co-operate" look on his face. It's frustrating, especially for his nurse, but at the same time it's another bit of the old Kolbjorn showing through, so in a strange backwards way, it's encouraging.

Time to wrap this up and get ready to go up to the hospital. Thanks as always for your prayers and support.

Sunday, May 30, 2010

Progress and visitors

I managed to get a few hours sleep and headed back to RUH. By the time I got back, Robin and Grandma Sandra had brought the girls to visit again.

Kol is doing better today - he's much more alert, smiling more and even talking a bit. Birgitte has a "scratch-n-sniff" t-shirt on today - Kol reached over to her, scratched the marshmallow on the shirt, then brought his fingers up to his nose to smell it, and smiled as the rest of us laughed. He's off the major painkillers, only Tylenol this afternoon, and we're seeing many more signs of our "old Kolbjorn" returning. It's been a good afternoon.

We had a bunch of visitors today too - my uncle Doug stopped by the hospital while I was asleep at Mom and Dad's, Terry and Dawn came back for a visit as well, Pastor Harley Johnson stopped by for a quick visit and prayer with the kids. A big highlight was Mike and Kari Alford coming down from Christopher Lake with the kids - and they brought Kol's Tour-de-Kinasao t-shirt with them. Kol's eyes lit up when I told him they brought the shirt - he had been really looking forward to walking it again this year, so getting the shirt meant a lot to him.

I took the girls out to Boston Pizza for supper and ran into Jannaya Friggstad and her fiancĂ© Graham. Now we're back at Mom and Dad's - my aunt Dawn is spending the evening with the kids while I go back to the hospital for a while (with some leftover pizza for Kristen).

It's been a good day.

Some pictures

Finally got a chance to pull some pictures off my cell phone (cell phone = small size, mediocre quality):

Kol before the surgery (the circles glued to his face are used to help match the MRI data - I believe the surgeon actually could see a 3-D overlay on a monitor to see exactly where his instruments were going):
And here's a couple of Kol after surgery (my phone was running out of memory so it automatically reduced the size of the pictures without telling me - grrrrr):


Relay for Life

On a semi-related note: Kirk, Julianna and Mari have been planning to take part in the Canadian Cancer Society's Lake Diefenbaker Relay for Life this coming Friday and Saturday (June 4 and 5). We're still not sure if it will work for us to participate (a lot will depend on how Kol is doing), but we still want to make it happen. We're part of the Equinox Theatre Cast of Characters team, if you would like to sponsor us or any other participants (click on our team name to sponsor us, or go to the Lake Diefenbaker page to find other teams and participants). Thanks for your support!

Another day, another scan, and hopefully some sleep

Kol went in for a CT scan Sunday morning, to check for swelling, bleeding, etc. Things are looking OK for the most part - there is some swelling, but that's not unexpected. Kol has some reduced movement on his right side, which is also not unexpected, as the lesion was on the left side of the brain - the doctor thinks this may also be related to the swelling. He still has pretty good control, it just seems to be a bit slower on the right side. He'll probably remain in PICU for a couple more days at least - they're hoping to get him in for another MRI on Tuesday.

Last night (Saturday - Sunday) went well. Kristen got a pretty good sleep on the fold-out couch in Kol's room in PICU, while I managed to doze a bit in the bedside chair. The nurse kept waking Kol up every so often (30 minutes? 60 minutes? It kind of blurs after a while) for neuro checks (pupil dilation, responding to simple questions, movement of hands and feet, etc.) which usually woke me up too, but other than that Kol slept very peacefully, especially compared to Thursday and Friday nights.

I'm at Mom and Dad's right now, and once I'm done this post I'm going to try to grab a couple hours uninterrupted sleep (finally got a chance to shower/shave, people will no longer flee in terror/disgust at the sight/smell of me!) and then head back up to the hospital. Once again, we can't thank you enough for all the prayers and messages of encouragement and offers of support from everyone - we are so overwhelmed and blessed by our circles of family and friends. Once things calm down a bit more (and once we finally get WiFi access at the hospital) we'll be able to respond personally to you. God bless you all.

Saturday, May 29, 2010

Out of surgery, resting, so far so good.

From an email sent by Kirk to family members late Saturday afternoon:

Kol came out of surgery at around 3 today, and came up to the PICU at about 4:30. He is still pretty groggy, but he was responding to simple yes/no questions, and isn't intubated (they thought he would have to be intubated for a day or two after surgery, so this is very good news). The surgery went well - no major complications, the surgeon believes that it may have been a slow-growing tumor, which means that the chances of it being malignant are relatively low, but we'll still have to wait for the full pathology reports in a week or so.
We've had a busy afternoon since I sent that email - Kol's sisters arrived (along with Robin and Grandma Sandra) and got a chance to visit him. Shortly after that, Steve, Krista, Thane and Hadyn all arrived as well and got a chance to see him. Kol slept through most of the visits, but it was still good to see everyone. We also had a visit from Dan and Audrey just after we talked with the surgeon but before we got to see Kol, and the Lutheran chaplain (Ron Bestvater) also stopped by in the midst of the family visit.

We're both feeling quite tired right now, but hopeful and relatively happy. Everyone has gone for the evening now, so we're going to get some much-needed downtime (and some supper too!). More updates later, and maybe we'll get around to filling in some of the gaps here. Thanks again to everyone for their prayers and support - it's been overwhelming to realize how many people have been praying for Kol and for our family in the last couple days.

News from the OR

Just heard from the OR nurse - things have been going fairly well in the OR. The neurosurgeon will be coming to talk to us between 2 and 3 PM.

Saturday morning update

From Kirk's email to the family, late Saturday morning:

Kol went in to surgery prep around 8:30 this morning (Saturday) - he was stable through the night, closely monitored both electronically (heart rate, breathing, blood oxygen levels, etc.) and neuro tests (the nurse woke him up every 30-60 minutes, checked his pupils, asked him questions like "what season is it", "where are you", "who is sitting next to your bed", etc.). Kol definitely did not appreciate being woken up so frequently, and there were times that it took a lot of work to get a response out of him, but he stayed in stable condition and at times was fairly lucid.

The surgeon expected the surgery to last 5 to 6 hours today - probably done sometime around 3PM. The OR nurse is supposed to call us sometime in the next hour or so with a progress report. After the surgery, he'll be in recovery for at least an hour or two before they move him back up to PICU (Pediatric ICU). He'll be in PICU for quite a few days - they'll likely keep him sedated and intubated for at least a couple days post-operative. They expect that Kol will be hospitalized for a week or two, even in a best-case scenario.

We probably won't know a lot of detail about the mass for a while - it may take a week or more to get pathology results, depending on tissue types and what sorts of tests they need to run on it. Typically, masses found in kids this age in the general location that Kol's mass is are usually low-grade tumors (non-malignant), so we're hopeful.

Kristen stayed awake most of the night with him while I managed to get some sleep on the fold-out couch in the Kol's PICU room. We're both pretty tired, but all things considered we're doing pretty well - probably riding an adrenaline high, we'll likely crash pretty hard in the next day or two. We'll likely be spending most of the next few days living out of the PICU - eventually we'll probably take turns sleeping in a real bed at Mom and Dad's and spending the night in PICU and/or the pediatric ward.

The girls (Julianna, Mari, Birgitte) will likely stay tonight at Robin's, and then we'll look at setting up our "base of operations" at Mom and Dad's here in Saskatoon. Ulla has offered to come up to help take care of the kids, and Dad has cashed in his emergency trip cancellation insurance for him and Mom to return from Europe Sunday night (originally not scheduled to return home until next Saturday).

We have been covered in prayer from so many different groups, it's overwhelming to think of - we've heard from Mom and Dad's travel group and at least two separate groups of kids at the YC youth conference in Edmonton this weekend (Regan with youth from her church, and a large group from Outlook/LCBI), as well as church prayer chains, not to mention the astounding response we've had from friends and family on Facebook. There has been such an outpouring of support from everyone - we are *so* richly blessed!

I'm sure there's probably stuff that I've forgotten to cover in this message, so if there's something you want to know please drop me a line - we won't be able to get WiFi until Monday or Tuesday at the earliest, so we only have access through a shared computer in the family lounge in PICU. If you need to talk to us, you can call my cell 306-867-0010 - if we can't answer (or if we're in a spot with poor coverage - some parts of the hospital can't get a decent cell signal), please leave me a voice mail.

Again, thanks so much to everyone for your prayers and your support.

Kirk and Kristen

Friday, May 28, 2010

Arriving at the hospital

It took much longer to get organized to leave town than I thought. We made a couple of stops, picked up Mari from school, and left. Mom took her car to Robin's and left it there for later. I picked her up there. We arrived at the hospital around 4:00. We visited a bit with Lorne and Darlene in the cafeteria, who had been a great help to Kirk before I arrived.

We went up to the observation room on the pediatric ward and got to see Kol for the first time. We had been told that there were only 2 people allowed in to see him at a time, but the nurse let us all come in. He had ceramic disks glued to his head with circles draw around them in purple marker in preparation for the MRI, which had yet to take place, an IV in his left hand, and wires taped to his chest. There was a monitor checking his vitals, and an IV pole beside the bed. Kol was tired, whiny, and didn't have much to say. Big surprise. He really wasn't feeling well. The girls each got to talk to him and give him hugs. After we said our hellos, a different nurse came in, and sent the extra people out so the girls and grandma went to the playroom.

The porter came to take Kol to the MRI around 4:45. We left the kids in the playroom, and arranged for Auntie Robin to meet them later in the cafeteria.

Visit from Hovdestads

Lorne and Darlene Hovdestad came to visit Kol and I up in the observation room in the pediatric ward. I'd had no more than a couple hours sleep in the last 36 hours at that point, hadn't had anything to eat since about 9PM Thursday night, so Darlene offered to stay with Kolbjorn while I went down to the cafeteria with Lorne to get something to eat. They were the first familiar faces I had seen since leaving with Kol - it was such a blessing to have them there.

Kristen and kids heading to Saskatoon

From Kristen's email early Friday afternoon:

MRI is at 3:30, and I am finally leaving the house now, picking Mari up at school, and going straight to RUH

CT results

From Kristen's email update to family Friday late morning:

Here's another update: The CT scan showed a lesion or mass in Kolbjorn's brain, and some bleeding. He is being admitted, and they plan on doing an MRI this morning. I am going to Saskatoon within the next hour or so, and the girls will be with me.

Waiting for CT results

From Kristen's email Friday mid-morning:

Right now, we're just waiting. After the morphine, Kol slept, and they were planning on releasing him this morning, but he woke up whimpering again at 6:00 - 1.5 hours after the morphine was stopped, was nauseous, and his head still hurt. They then decided to keep him longer and do more tests. He went for a CT scan this morning, and I'm still waiting to hear the results of that.

As of now, we're just planning on trying to keep things as 'normal' as possible. Mari is at school, and Julianna will go to her voice lesson. We'll go to Saskatoon after lunch. This weekend is the tour-de-kinasao, and Julianna was planning to bike, Kol+ Birgitte walk, and Kirk and Mari are stationed at a check stop. If Kol improves today, Kirk will take the 3 big girls to the lake, and I'll bring Kol home when he's released, or I'll stay in the hospital with him. If we find out that this is more serious, we'll deal with it then, and let you know if we need anything.

Kolbjorn in ER in Saskatoon

From Kristen's email to family, early Friday morning:

We took Kolbjorn in to the ER tonight. He had a severe headache, and vomiting - he had gone almost 2 days without being able to even keep water down. He has had recurring headaches the last few weeks, and was in to the Dr. for them once before - but the headaches usually only lasted about a day, and then he was fine again. This one didn't go away. He was referred to the pediatric ER at RUH for testing. The Dr. here said they would be doing a spinal tap, but that hasn't been mentioned by the the Drs. in Saskatoon yet. Kirk took him up, and I stayed home with the girls. He is getting IV fluids, and they gave him an IV migraine medicine, which apparently didn't help much. Last I heard from Kirk, they had just just started giving him morphine to help with the pain relief.