my dad - part V

I really wanted to spend tonight working on Simon's 24 month letter, including all the fun details about his party yesterday. Instead I'm posting another possibly grim update about my dad. Not sure how I feel about following this up with a happy, feel-good birthday post, so it might have to wait til tomorrow...

I spoke to my mom about an hour ago. My dad is not doing well... again.

Yesterday, he seemed to be doing quite well or at least "normal" for him. This morning my mom was up around 9am and thought he was doing well cognitively, however he was complaining of abdominal pain. The staff had emptied his ileostomy this morning and it was fine. Around 4:30pm when they were to empty it again it was ever so slightly pink, then by 5pm it was BRIGHT red. He also started vomitting and it was very dark brown.

A critical care doctor came up to see him and ordered a CT scan which they just finished around 8pm SK time. He's currently on the way down for a scope of his stomach.

As I said in my last email, there was a conference scheduled for this last Tues to decide whether he would be moved to a long term care facility. The move was approved, but only once a new infection in his incision had healed. This infection was discovered either Tues or Mon. They wouldn't move him until he was done with the course of antibiotics, as this infection put him back into the acute care category.

It seems that this new issue could be as "simple" (although nothing is simple in my dad's case) as an ulcer in his stomach or as serious as a problem with the initial colectomy having not healed and having been rotting this whole time. If it's the latter -or anything else that may require another surgery- they've told my mom that there is nothing they can/will do for him. He has too many "strikes" against him, and just honestly wouldn't likely survive another major surgery. At that point, they'll do whatever they can to make him comfortable, but that's it. He's currently in quite a lot of pain, but they haven't given him anything at this point because I guess they needed him somewhat lucid for the CT scan.

So my other emails about "barring some sort of new life-threatening infection or illness"... yeah, well, looks like there's a possibility of yet another fatal complication. It's almost laughable. Almost. But also makes me want to cry and scream at God and ask Him what the heck He's playing at.

To be completely honest, it's almost a relief that they've taken away the options should another life and death decision need to be made. It's also a relief that my dad is conscious enough now to understand what is happening and make his own decisions (should any be offered) and plans for how he wants things to play out from now on. I hate that we're at this point (again!) and I'm mad about this whole year. I still have a hard time wrapping my head around the fact that all this started around this time last year... with a simple cold! And while we've tried throughout everything to try to somehow rationalize things and to see God's hand in it all, it's getting more difficult. I hate what this is doing to my mom and the rest of the family, and more than anything I hate what this has done to my dad.

So please pray. I honestly don't know what to ask you to pray for... that it would "just" be an ulcer OR that he'd go quickly. In the same breath that I say I want this all to end, I can't imagine life without my dad in it.

Love,
Amy

P.S. Sorry these are always so long and rambling. If nothing
else, it helps me to write it all out. So thanks for reading.

not-so super mom to a super little guy

While I'd like to be able to write that Simon and I are doing all sorts of special mother-son things together to celebrate his all-important 2nd birthday and taking advantage of this time that Liam's at school and he has me all to himself, such is not the case.

Yesterday, in what -in retrospect- can only be described as a FIT OF INSANITY, I decided to not only strip all the beds in the house, but also flip our impossibly unwieldy mattress and switch the comforter in our duvet cover. We're still living like college students, sleeping on a futon mattress, cause it's the most comfortable mattress we've slept on in the last nine years. However, even Peter has a hard time moving it on his own. It's big and bulky and there are no handles or way to easily fold it for carrying. He usually ends up a sweaty mess and I end up needing to change my pants.

I'm not sure what possessed me to not only vaccuum it, but move it off the box spring (which was embarrassingly still wrapped in plastic from our move OVER FIVE MONTHS AGO), take off the plastic, manhandle it back onto the box spring, FLIP IT OVER, vaccuum the other side, then remake the whole bed, including changing the blankets and comforter. I'm sure that part of it had to do with the the lure of the cuddly, warm flannel sheets that I intended to put on. So please tell me I'm not the woman to temporarily lose her pregnant mind when faced with the temptation of soft sheets!

And today? I can barely move! My poor back. And arms. And hips. Sure it was lovely to climb into that bed last night, but I probably should have waited for Peter to get home and help.

So I will be doing A WHOLE LOT OF NOTHING today. I will sit here on the couch with my feet propped up, and from this lazy perch I will do my best to remind Simon how loved and special he is. And I'll look at all the pictures from two years ago and remember when you looked like this:

I'll write his letter this weekend after his party on Saturday. Should be fun!

my dad - part IV

I just sent this email out to family so I figured I'd just re-post it here. Plus I'm lazy.

Wow, has it really been almost a week since I last wrote??

Hopefully my lack of constant communication has lead you to believe that my dad has been relatively stable throughout this last week. While his various levels continue to fluctuate and effect him in different ways, he thankfully has not contracted any other major, life-threatening illnesses, diseases or infections! I say that somewhat tongue-in-cheek.

His mental state seems to be clearly effected by certain blood levels being out of wack. His potassium and magnesium (I think??) were seriously low the other day... he was asking my mom to "move those noodles" (his bed rails) and to get him his medication from out of the clock! After receiving two units of potassium, he was making much more sense. There are also some issues with his electrolyte levels that I don't really understand. I'm not sure if things get unbalanced following dialysis or if it's after he hasn't had dialysis for a few days or if it's mainly to do with how little he's eating... likely it's several things combined.

In regards to his eating, he still has very little appetite and is only able to eat very small amounts, no more than 6 or 7 bites. It frustrates me that the staff at the hospital isn't more proactive in that department. They seem content to bring him his three meals a day and have him eat his 6 or 7 bites - and THAT'S IT. I don't know why they wouldn't/couldn't arrange for small meals to be brought up every 2-3 hours.

At any rate, this might all be changing soon...

Today around 3:30pm, my mom (and Heather and Joel I think) will be meeting with a social worker at the hospital to discuss plans for my dad's care. I'm assuming that they're planning on moving him from the hospital, although not home yet. He's no where near ready to be home, but it doesn't seem like he needs the acute care that a hospital is designed for. I'm anxious to hear what suggestions and options they have, what they consider to be realistic goals for him, and what he'll need to do to get there.

Personally, I think that barring some other catastrophic illness AND assuming he remains stable AND assuming he's able to get back to eating like a normal person AND assuming they're able to figure out what needs to be done in order to keep his various blood levels from wildly fluctuating and making him act like a crazy person... ASSUMING all those things, I don't think that it's unrealistic to hope/pray that he'll be able to return home at some point with some home care services in place. BUT he's still not eating enough or anywhere near strong enough for that to happen right now.

So please pray for strength for him, both literally and figuratively. Pray that the meeting today goes well and that he truly is ready for some sort of transitional care (and that this isn't motivated by the need for beds, etc).

Thanks again for all your care and support.

what a difference a good night's sleep makes!

After barely sleeping Monday night, I was so cranky and grouchy and felt like I was yelling at Liam and Simon all day. Clearly I don't parent so well on 3 hours of sleep. So I put myself to bed at 9:30pm!

Today, well rested and ready to take on the day, I was able to get the following things done:

- made pancakes for the boys for breakfast
- grocery shopping after dropping Liam at school
- separated all the meat I bought into useable amounts
- did the dishes - an embarrassing amount of dishes. All the crusty pots, roasters, bread pans, muffin tins... the stuff that Peter and I try to hold out doing until the other breaks down and does it. I guess it was my turn.
- made a big 2L pitcher of green smoothie (to keep Peter from complaining about not having any for break at school)
- made whole wheat bread FROM SCRATCH! I didn't even use the bread machine! Now my grandmother I am not, but Liam's on his third piece!
- made a double batch of creamy potato leek soup
- did a load of cloth diaper laundry
- reorganized the freezer

All that by 5:30pm! Now if I'm honest, I'll tell you that my feet are throbbing, my lower back is killing me, and I've been having contractions on and off all afternoon, but I do feel good about having a productive day for once. Time to put my feet up and let Peter get me a bowl of Candy Cane Ice Cream (I thought of you, Sara, when I bought this... or is it the After Eight that you like?).

Imagine how clean my house could be if I went to bed that early on a regular basis?? But then Peter wouldn't have anything to complain about and I know he'd be bored at home... I'm doing it for you, honey.

new belly pics

The last/first time I posted pics of my belly (let's be honest... I don't think it can be called a "bump" anymore) it was Aug 19th. So it's been almost three months. Clearly things have changed...

Here I was then:

And now (or a few days ago):

For having only six weeks left when these were taken, I think I'm looking pretty good. I'm a bit anxious to find out how much weight I'll have gained since my last midwives appointment... what with Halloween happening and the copious amount of chocolate that went along with it.

See, I have "baby weight" and I have "chocolate weight". I'm sure that the baby weight will come off easily once babe is out. The chocolate weight, however, will likely require a painful amount of squats.

P.S. Heidy, look at my hair! Come see and cut this mop! I miss you.

lovely, lovely, lovely

Yesterday after church, Peter and the boys and I hopped into our van and followed our friends, Patrick and Elise, to a nearby hobby farm. There were chickens (in the barn), sheep, pigs and a horse. We went there for the eggs though. $3/dozen for lovely, local free-range eggs... some of the BIGGEST eggs I've ever seen too! Some of them were so big that the carton wouldn't close, and one in particular must've been from a turkey. Or a small ostrich.

I really should've taken a picture of them. Lovely eggs in all their brown speckled loveliness. And the yolks were so YELLOW! None of the pale banana-y color of store-bought, commercial, high-density chicken factory farm eggs. I should've taken a picture.

Simon and I spent the better part of this morning at Value Village taking advantage of their 50% off day. I'll try to get back later today or tonight -who am I kidding? it'll most likely be tomorrow- with some pics of my thrifty finds.

Liam: month 65

My first letter to you, Liam, is even more over due than Simon's. However I think that, with everything going on with Grandpa, I should get a pass for this month.

Grandpa has been on your mind almost as much as mine since we came back from Regina. Whenever you pray, you never fail to remember him and to ask God to make him healthy and for him to feel better. You also always remember to ask that Grandpa be able to come to our house for Christmas. I'm not sure how you'll feel if that doesn't work out.

I asked you when we got back home from Regina if it made you sad that Grandpa was so sick and that he wasn't able to talk to you. You said that it did - and that it also makes you sad to think that Grandpa might die. Seeing how hard it was so say goodbye to our car last night, I'm not too sure how you will deal with saying goodbye to your Grandpa who you love so much.

Speaking of the car, we finally traded the poor Civic in for a minivan last night. Although you were not excited about the prospect of never seeing "our car" again, you quickly forgot about it when you saw the van. I could literally see you eyes glaze over as you watched the doors open on their own to reveal the DVD player inside. Luckily, your brother doesn't realize it's there... I don't know if I could handle having him yell "TV!" at me each and everytime we get in the car.
I continue to be less than impressed with your kindergarten teacher, Mme Seguin. She just doesn't seem to put much effort into you. She complains that you don't listen and seem to daydream a lot. I want to tersely remind her that YOU DON'T SPEAK FRENCH, but instead I smile and say that your dad and I will work more with you. I don't want to be the crazy mom and all the teachers hate, but I also won't sit by and watch her ruin your love of learning! As it is though, you still enjoy school and seem to love her - as much as I don't think she deserves it!

Halloween this year was much anticipated by you. After slaving for hours and hours on your stormtrooper costume last year (and likely inhaling all matter of toxic fumes from all the vinyl I used), you insisted on being a CLONEtrooper this year. To the untrained eye (read non-five year old boy or thirty-three year old man), these two things are exactly the same thing, but the very suggestion by me that you wear your stormtrooper costume again was enough to make your head explode. So for the first year, you wore a store-bought costume. I'm hoping that this won't come back to haunt me in your inevitable therapy sessions.

Clearly, though, you took your role as protector of the Republic VERY SERIOUSLY.

Love, Mom

.

my dad - part III

Good Sunday morning to you all.

Dad's nurse said he slept better last night than the one before. He even moved himself onto his side, where he slept for several hours. That might not seem significant to most, but he's spent 90% of the last two months flat on his back unless the nursing staff (usually two of them) turned him onto his side. So it's encouraging that he was able to do it on his own, inspite of his weakness and recent major abdomenal surgery.

He still seems confused much of the time. Not so much that he doesn't know/understand what's going on or being said, but more of him having great difficulty articulating his thoughts (from what I understand). Sometimes you can kind of figure out where he was going with something and see that it just came out wrong, other times he makes no sense. I have no idea how aware he is of what's coming out of his mouth. I imagine it must be very frustrating for him to know what he's trying to say and to know that it's not coming out right.

As for his mental state, he'd been doing significantly better between the time that the dialysis started and the days following the nasal surgery when the c. diff infection started taking over. In this case, it seems to have been the obvious variable. My question is about whether or not the effects of c. diff and the systemic infection/toxicity that went with it (remember he was basically comatose last Sunday night!) produce permanant damage or if we can expect this to "wear off".

Also, with the feeding tube being out, he's currently getting no nutrition at all. I thought the TPN (intravenous nutrition) was still being given, but it's so hard on the kidneys and liver that they removed it. So without the feeding tube, he's only getting what he'll take by mouth. Yesterday he gagged a bit on one of his pills and then threw up, so they've restricted all his food/fluid intake until a swallowing test can be done, which will hopefully be tomorrow - if there aren't too many people in line ahead of him. For a normal person, a day or two without food wouldn't be the end of the world, but he has ZERO reserves left.

Hopefully I'll get to talk to him today.

my dad - part II

My dad was moved from ICU late last night, around 1am. Apparently his room was needed for someone else who is more sick (if you can imagine!). While I suppose it's good that they felt he wasn't critical enough to stay in ICU, I still hope he wasn't moved too soon. With the exception of a couple nurses on that ward, I found them to all be quite passive with his care... content to just wait and see what happens without being proactive in trying to make him better. Luckily he will be back under the care of Dr. Duffy, who was the one to remove a lot of the meds that we felt were adversely affecting him and to suggest dialysis.

Although dad's blood pressure has gone up on it's own, his white blood cell count has also risen (from 11 to 28), indicating some other sort of infection. This time it's Enterococcus and he's being treated with the antibiotic ampicilin. Mom said that they told her that the Enterococcus bacteria is NOT the 'E' in VRE, but that's not what I just read.

"Enterococci are intrinsically resistant to B-lactam-based antibiotics (ie, some penicillins). In the last two decades, particularily virulent strains of Enterococcus which are resistant to vancomycin (Vancomycin-resistant entercoccus, or VRE have emerged in nosocomial infections of hospitalized patients especially in the US."

So someone didn't know what they were talking about. A less than comforting sign...

The infection is in his septum, although I'll have to get clarification on that... it could be his nose, his brain... we have "septums" all over our body since septum just means a separating membrane.

So if it's not one, it's another. He's so sick. All these little infections that a healthy person would easily fight off are a mountain to him.

The nurse did say that he pulled out the feeding tube that was going down his throat sometime last night or this morning. I can't imagine that it was too comfortable, but it was helping him get some extra nutrition. The nurse said he was very adamant that he didn't want it back in, so hopefully they'll be able to use the threat of it to get him eating more.

It's hard not being there to visit with him and see for myself how he's doing. The ICU nurses were so good about giving me updates and keeping me informed since they're used to family calling up for information... the nurses on the regular ward act like I'm bothering them! I'm worried that he's not going to receive the care he really needs there.

At times it seems so unlikely -impossible even- that he'll ever leave the hospital (or some other full care medical facility) because he's SO sick and the recovery seems SO daunting, but at the same time I don't know why God would have had him go through so much this year and let him get SO CLOSE to death without having a plan for him - a plan other than lying in a hospital bed for the rest of his life. He just has so much healing to do.

Please keep praying.

Happy Birthday, Dad!

I spoke to my dad’s ICU nurse around 8am (EST). She said he had a very good night. He was taking some very deep breaths during the night that were throwing off the ventilator (because of the difference in pressure), so the ventilator was turned off and he’s now just on oxygen from the wall mounted tank. The breathing tube is still down his throat (which can’t be too comfortable), but as soon as the attending physician can get in to see him, they’ll take it out. (UPDATE: They took the breathing tube out around 10am and he's breathing fine on his own!)

The nurse also said that my dad is much more awake this morning and responded when she asked him to squeeze her hands, etc. That’s very good news. The doctor was a bit disappointed last night (as we all were) that dad didn’t wake up after the dialysis. He ordered a CT scan for this morning to see if there was anything else going on. Even though dad is awake today, they’ll still go ahead with the scan.

He is also scheduled for another dialysis session today. Dad's body didn’t seem to tolerate the one yesterday very easily, but the doctor wants to insure that all the medication from the surgery and all the toxins from the c. diff infection are out of his blood. I’m not sure whether that plan will change based on his level of alertness this morning. It may also depend on the results of his post-dialysis blood work.

Also, it’s my dad’s birthday today… what a way to spend it! As I was lying in bed this morning, thinking about him and this last year, it seems to me that it was about this time last year that he got a cold. From there it went:

- - cold
- - pneumonia
- - black out
- - two brain surgeries
- - months of overmedication and decline
- - hospitalization because of malnutrition
- - weeks at a semi-conscious state
- - nasal surgery
- - major surgery to remove his bowel

It’s hard to believe! So please pray that God will not only grant my dad many MORE YEARS, but years very much UNLIKE this last one.


And Dad, should you read this sometime, although you won't get much of a party, I did want to take the chance to celebrate who you are and how much you are loved. Here is a slideshow of some of the pictures of you and the boys from the last few years (click to play):



Love you Dad.

~ Amy

my dad

I wrote this out yesterday in an email to my women's group back in Calgary:

Some of you know the health struggles my dad has had this year starting with pneumonia at Christmas, then two brain surgeries to removed tumors and long, long recovery. He was re-admitted to hospital about mid August cause he had zero appetite, was unable to keep any food down and was literally eating nothing. Starving to death. He was so weak.

They put him on intravenous nutrition but he didn't get any better. Oct 17th they started kidney dialysis since his kidneys were only functioning at 15%. Prior to the dialysis, he was sleeping all day, still not eating, non-responsive (we could hardly get a yes or no out of him), drooling... It was awful to see him like that. But after the dialysis, he was a different person. The staff was shocked to walk into his room and find him awake, alert, talking, making jokes, eating (as much as his poor shrunken stomach could manage). We were so much more hopeful even if it meant a lifetime need for dialysis. My dad said several times over the past two weeks how much we had to be thankful for.

Since he's been in the hospital so long, he was exposed to the c. diff bacteria. This bacteria specifically infects the colon. Since being on so many courses of antibiotics this year completely destroyed all the good bacteria and gut flora that normally colonize our digestive system, and because he's been so sick and weak, it was just the perfect breeding ground.

Well from Saturday sometime to Sunday night, his condition took a significant downturn. He was taken to ICU Sunday morning. It seems the c.diff in his bowel had become toxic and he deteriorated rapidly over night. Was responding almost not at all. They stopped short of saying he was in a coma only because he opened his eyes once Sunday morning. At about 10:00 p.m. Sunday night they took him to the O.R. to completely remove his colon (bowel). The mortality rate is about 86% with this surgery; 94% without surgery but with the standard treatment with antibiotics.

He did survive the surgery, which the doctor seemed very encouraged about. He'd been very deliberate in not being optimistic that night when we were discussing the options (me on the phone from here in Quebec). My dad just has so much stacked against him: immuno suppressed because of his liver transplant, kidney function currently at 0% (as in they aren't working AT ALL), being already so ill and so weak. The first 48 hours are absolutely critical as far as his recovering just from the surgery, so we've got about another 16 or so hours to go til that milestone. Since the surgery was successful, the c. diff will no longer be an issue since the colon is the only place it lives, so the infection should be completely gone by now.

So please pray for him. I don't understand why God would've even let him survive those initial brain surgeries only to have had such a hard, awful year and now this. My dad has always maintained that God was not through with him and that he felt so strongly that this was not his time to go. As I was lying in bed the night of the surgery, waiting for my mom to call, I know that my prayers were very selfish - almost challenging God with the promises he'd made to my dad, to never leave him (a phrase that my dad has audibly heard from God on more than one occasion in his life). But even as I prayed, I could hear my dad's own words from the night before his first brain surgery... that our trials and problems don't negate God's promises or change who He is. That God never promised that we wouldn't have pain or problems or suffering; His promise was to be with us through it all.

So I go back and forth almost every minute from being confident that my dad will recover from all this, to being scared and angry and questioning God. I find myself clinging more to my dad's faith than my own...

And here's an update from this morning:

I spoke to my dad's nurse early this morning (since I'm out East and the first awake) and she said that he had a really good night. He's almost off of medication to control his blood pressure. He's still on the ventilator, but he's choosing how often and how deeply he's breathing. They'll decide during rounds whether to take the tube out (likely it will come out). He's also opening his eyes other than only in response to his name.

All of those are very positive things. However we're all still anxious to see how he responds to the dialysis and what kind of state he'll be in afterwards, pain-wise and also his mental state, clarity, alertness, etc. I'm sure he'll be shocked to find out that while he was out of it this time, we had to have one of his major organs removed and he no longer has the use of his bowels. I can't imagine how strange that will be for him to hear and digest. I'm sure he'll take in it stride though.

Thank you for your prayers. Please continue.

Amy

P.S. I know I have some fun stuff to post -like Halloween and Liam's monthly letter- but it seems strange to do it with all this other stuff going on. Maybe tomorrow.