Post-Op Day 3

Posted on September 2, 2007 by Mike

When it comes to life in the Intensive Care Unit, as long as you remember that there are as many ups and downs as there are “blips” in those monitors we follow religiously, then your stay will be comfortable and stress-free.

If, however, you begin to panic at the sight of any deviation, as opposed to go with the flow of testing, adjusting, testing, etc, you will seriously burn yourself out.

Today could be described as such a day of ups and downs. Mainly because our daughter is such a wiggly little worm who KEEPS fighting her sedation, she managed to work loose and dig deeper with a few of the leads used to monitor her heart pulse which caused her heart rate to go a little nutso throughout the day. It started this morning as I got there at 6:30am where it was apparently beating at 220. After a couple of hours, they discovered that one of her leads had gone too deep/ close to her heart and aggravated her. The surgeon pulled it out by 1cm and her heart rate went back to normal. The pacemaker was put back on to help.

Then, over 6 hours (and a few tests later – ekg, echo, etc) later, they were experiencing some more abnormalities. After some adjustments and testing, it was discovered that her other leads had worked themselves up and aggravated her. It was decided that these leads (which were being used to monitor her heart pulse pressure) were not required and removed. Obviously, this was a little distressful to her and we had to wait for her to calm down afterwards.

Sure enough, about an hour afterwards, our little champion was beating at 135 on her own! 🙂

Do you get the feeling that she’s as anxious to come back home to us as we are to having her back in our arms? 🙂

And still, the weirdest thing about this whole experience for both Chantale and I is HOW comfortable we are in the ICU. I’m not talking about ICU-Psychosis, real though it may be. I’m talking about walking in there and staying there being as comfortable and “home”-y as our own home. The folks are great, everything is in control, we are as part of the daily and constant goings-on as can be. Our involvement just makes it that much special.

I guess it could be a lot worse, right? Imagine hating it, dreading it, worrying about it… and being forced to go in day after day. This is much more healthy. And, truthfully, it brings about continued feelings in both of us about wanting to be more involved in this field in some way…

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Post-Op Day 2

Posted on September 1, 2007 by Mike

Yesterday afternoon, it looked like Charlize would have been taken off her respirator since all signs indicated that she would be able to breathe on her own. They had taken her off of 2 other drugs and she responded well. However, before we left the hospital last night, the ICU Doctor decided it would be better to wait until this morning due to the fact that the shift change was going to happen soon and the staff would be reduced. So, they re-started the drugs and left it up to today.

This morning, we found out that there were a number of emergencies last night with other patients which meant nothing was done with Charlize. Not a problem. Better to be prepared. Chantale’s early morning report indicated that she had some liquid in her chest (left side) and they were working on getting that cleared up.

I got to the hospital at 2pm with Kyle to bring Chantale some food and as we walked in there the doctor’s were taking her off the Pacemaker! Although this morning’s verification found that her underlying pulse was at 79 (good news on its own for the cardiologist who thought it was a full blockage even though we had already been told yesterday that it wasn’t full blockage -another case of left hand/ right hand syndrome), when the CVT and Cardiologist Resident came by this afternoon she noticed (as Chantale pointed out to her) that the rhythm on the monitor looked different. Sure enough, the ICU Doc came over and they found a strong pulse. He switched off the Pacemaker and her little heart kicked right in! It kept beating at 143 on her own! He configured the PM as a backup to automatically kick in at 125 in the event she can’t sustain it, but it was incredibly encouraging news! The Doc and the Resident were both ecstatic, again claiming how she’s handling all this like a true champion! Not even 48 hours after her surgery!!

That’s today’s very happy news 🙂 When Chantale gets home tonight maybe she’ll have more to add 🙂

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CHD Post-Op Report

Posted on August 31, 2007 by Mike

The surgery is done! Charlize is in the Pediatrics Intensive Care Unit and will be there at least 10 days or so.

For some details, feel free to go read my wife’s () blog.

Here’s my summary report:

Wednesday night ended at 11:30pm after giving Charlize her medication. Thursday morning began at 3:00am with waking her up for a final feeding, followed by a bath with special soap given to us at the hospital on Monday, followed by her last dose of medication. We left the house at 6am and quickly went through admissions before settling in at the ACM. Charlize was in SUCH good spirits that she gurgled and laughed and giggled away for a good hour! Even got a few minutes of that down on video thanks to our new digital camera! 🙂

At 7:45am we went up to the 10th floor (operating area) and soon met with the two anesthesiologists (Dr. Hunter, Dr. Coté) who were as great as when we first met them on Monday. By the way, we now know her blood type! O Positive, just like her daddy! 🙂 We talked again about the procedure and then waited for them to take her away. Chantale rocked her as she held onto her favorite horsie/pacifier, while wrapped up in an extremely warm pink blanket (with hearts! :)). Again, pictures to follow 🙂 At 8:10am, Dr. Coté took our little bundle and walked into the O.R. while we headed back down to the 7th floor and the ACM.

We eventually got to meet the surgeon, (who’s name I can’t spell right now) who told us what he was planning to do and explained all the possible complications. Shortly after that Chantale’s parents and sister showed up and we headed out for coffee. At 11am, we were informed that Charlize was safely sedated and the surgery was underway. We knew we’d have about 4 hours until it was over so we headed for lunch.

A nice long walk through downtown Montreal in a light misty rain set a somewhat peaceful pace which stayed with us through an incredibly delicious Anniversary Lunch. Everyone was very impressed with Toyo’s and quite full by the time we stumbled out of there an hour later 🙂

We got to the doors of the hospital just as our nurse called to tell us the operation was over and Charlize got off of by-pass like a champ and would soon be moved to the ICU. Oh, sweet relief! It was another couple of hours before we got to see her but in the meantime we did get to talk to the surgeon again who admitted that in the 20+ years of his practice, he had never encountered this type of surgery. It seems like she didn’t really have Tetrology of Fallot, but rather Double Outlet Right Ventrical which mimicked a ToF! This came a long way to explaining why she had begun degenerating so quickly recently.

The surgical repair was the same (close up the big hole, etc) but the approach was a little different. Basically, they cut open where they were expecting the hole… only to not find it where it should be! It took another two cuts (one through the aorta, one by the back) until they found and closed it. The really great news was that her valve was absolutely fine (he pushed through a 7mm wire through it which was more than good enough for him) and thus it did not have to be removed. The trickier news was that with the added manipulation of the heart, they did not know how much damage, if any, she had sustained to her nerves. Meaning that she is currently being paced and if her heart doesn’t take over (which normally takes a couple of days post-op) she will need to have a pacemaker permanently installed. They will take no action until 10 days at least.

When we finally got to see her (after that nasty business with the gas leak at Alexis Nihon which necessitated a shutdown of the AC and closure of all windows plus a postponement of surgeries at the MCH), it was with tears of joy (at least for me!) and relief as we saw her on her bed looking asleep but still like a million bucks! Strangely, she looked a lot like Kyle at that moment! 🙂 But, she didn’t have chest tubes installed and all the ones she did have just did not look like anywhere NEAR the horror we were expecting. Yes, the docs and nurses always tell you to brace yourself for a shock, but, seriously, we’ve seen worse and she was definitely not that bad. We did take some pictures (this is part of her life story after all) and we’ll see about what we share. After all, we know how much some of the photos and stories we’ve seen and read online have helped us through this ordeal and we want to pass it forward. The greatest joy however had to be in seeing her very pink lips and tongue 🙂 Seeing her ashen and gray/ blue for so long it was pure heaven to see her pink!

Lots of questions were asked and lots were answered. Monica, her nurse in the ICU was just great and attentive. Within an hour, Charlize was also taken off of dopamine because she was able to maintain her blood pressure without help! We all took the time (in twos) to visit with Charlize and when the downtown emergency was finally cleared, we headed home tired but so happy.

This morning we really wanted to sleep in. However, the folks we hired to do our driveway had other ideas as they finally (3 months later) decided that today was the day they would work on it and were on our street at 7am. Still, I cannot begin to remember the last time I slept 7 hours STRAIGHT! Woah. 🙂 Chantale finally fell back to sleep at around 8am while I’ve been working from home. We’ll be heading back to the hospital but I’m not sure just when. More updates to obviously follow.

Thanks again, everyone, for all your kind words, thoughts, and prayers. They have all been very, very appreciated!

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Wednesday

Posted on August 29, 2007 by Mike

I realized (after speaking with a few people yesterday) that I never came back online to post that the surgery did not happen. sorry for the oversight. We went in on Monday and ran a gamut of tests, met a slew of people, and exhausted ourselves on information but, in the end, it was felt best to wait until Thursday (tomorrow). There was another baby in ICU that was being kept alive with medication and desperately needed the surgery. However, it was going to be a long and complicated one so it was best that they scheduled the whole day.

So, tonight, my in-laws will come over and pick up Kyle, Casey, and my sister-in-law (who came over last night to stay with us). Chantale, Charlize, and I will have to make it a very early bedtime because we literally have to be up at 3:30am tomorrow to prep/ get things done before we leave. We have certain restrictions (for example, no more breastfeeding after 3:30am) that we have to abide by in order to not interfere in the surgery prep.

It’s definitely going to be a tremendously long day.

We have to be there by 7am, go through admitting, head up to the ACM, and change Charlize. Then, at around 8am, we give her over to the anesthesiologists and we go meet with the surgeon. Afterwards, we’ll either go meet with the lactation consultant to discuss keeping up Chantale’s milk supply and what to expect post-surgery, or we’ll head over to Toyo’s restaurant for our 4th Wedding Anniversary lunch. They told us on Monday that it’ll take about 2 hours to prep the surgery and thus they won’t really begin to operate until around 10:30am-11:00am. The surgery itself will take about 2 hours. Afterwards, they leave her on the operating table (not alone, of course) for about 1hour to 90 minutes to ensure everything is stable. After that they get her ready to be moved to the ICU which could take about another 90minutes as well.

We’re hoping to be able to see her by suppertime…

So, that’s the update as we know it right now.

As for me, this morning, I’m feeling quite nauseous. When everyone sleeps through the night, waking up at midnight and 6am to give Charlize her meds is not a problem. But, when Kyle wakes up crying/ screaming from night terrors, and Charlize wakes up to feed, the constant interrupted sleep makes it difficult to function. Let’s just say that I almost lost what little breakfast I had this morning while I was on the train coming in to work…

I have more to say, but just no energy right now. Maybe later.

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Random Thoughts

Posted on August 25, 2007 by Mike

– 6 hours of sleep on thursday night and 4 hours of sleep on friday night make for a very disoriented Mikey…

– We went to visit my parents yesterday. James and Melyssa were also there so it was a nice big family lunch 🙂 I had wanted us all together to they could see Charlize before her surgery. It was somewhat heart-wrenching seeing my mother fall apart and cry when we were finally getting ready to leave. They won’t know peace until we call them that everything is fine…

– Speaking of which… the hospital called us while we were there. We have to be at the MCH at 8:30am on Monday for pre-op tests (xrays, echo, blood tests, etc). We do get to go home afterwards, however. This is because the surgery will more than likely be on Tuesday and we will have to be there for 7am. Every day is one day closer to getting this issue resolved, but the anxiety is still eating us alive…

– Next week will make for a bizarre work week. I will go in for probably 2 days, but will spend the majority of time with my family. My boss is quite aware of this and obviously supports us. It’s what I had been saving my vacations for, after all. Will have to do some work/ project juggling, but compared to the life of my child? Come on. Like you have to ask.

– I realize that there’s a minor incompatibility issue between me and Facebook. Basically, it is a Social Networking Tool (apparently). Basically, I am Anti-Social. No wondering I’m having trouble finding use for it! 🙂 I can’t say the same about Linked-in, however. That tool I definitely see the benefit to it.

– I thought I had more to say but it seems my mind just blanked again. Oh well. It’s to be expected. Saturday afternoon and it’s simply yucky out there. Which means energy levels get quite depleted, too.

– Maybe another update on Monday night. Ciao.

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Surreal

Posted on August 22, 2007 by Mike

Everything feels surreal tonight…

As much as we had an incredible night, with Charlize sleeping from 930pm through to 530am (she didn’t wake up after we gave her her medication at midnight!) feeding for a bit, then sleeping again until 830am, and then another nap after feeding, finally getting up at 1030am!

I had spent the morning working on Comicopia while all this happened (as I decided to stay up at 830am since my brain was way too fuzzy). With such a late start to the morning, it’s no wonder the afternoon whizzed by. However, pretty soon we had picked up Kyle from his guardian and it was just fantastic to hug him again 🙂 On our way back home, we stopped at the pharmacy to get Charlize’s meds filled and… they didn’t have the necessary ingredients to mix us a batch! A half hour of frantic calls later, I found that the Pharmaprix downtown had everything but it might take up to 2 hours to prepare. Although we had enough for another day, I just didn’t want to risk waiting on any other pharmacy and thus after Kyle went to bed, I headed back downtown to place the order and wait. Lucky for me, it only took 20 minutes so instead of getting back home at midnight, I was home at 10pm!

Since then, though, I’ve been feeling a little wired. Granted the drive home kind of got to me as I started thinking more on her upcoming surgery and the image of her going THROUGH it always nails me in the gut. There’s like a huge lump/ hole in my stomach which causes me to tear up at almost any moment. The fact that I’m supposed to be going back to work on Monday sure as hell seems like light-years away… And yet, I have personal and professional committments that I want to keep as well. I figure if I have to be downtown anyway, I may as well step away from the hospital for a few hours and get some work done/ make some money. $15/day on parking, plus gas travel, plus food really adds up quickly…

I tried to watch a movie tonight but switched it off after 10 minutes. Just couldn’t keep my attention. Read a bunch of comics and they all seemed to be going through the motions themselves. There’s just some kind of… I don’t know… “link”? missing today. I don’t know if it’s the 5 hours of sleep, the whirlwind of activity trying to get the house back in order after being away for 6 days, the emotional turmoil we’re going through, or something else that’s just burning right through me…

Whatever. One day at a time.

Tomorrow Kyle has his 2-year checkup. Which means, unfortunately, that he’ll be due to get more vaccinations. Which means more worries/ fears about side effects. Charlize, of course, will not be getting her 2-month vaccines. Not with an impending surgery! We’ll be seeing James and Melyssa on Friday when we go visit my folks (who haven’t seen them or Kyle in a while now!). It’ll be good for everyone to spend a bit of time with Charlize, too. I’m not too sure how they’re handling the surgery – I just know that James very much wants to be “there” for her (as witness his insistence at going to visit her in the Hospital this week when he found out we had been admitted). We want to make sure they’re okay and answer any questions they may have. I can imagine how scary it is for them, especially considering how scary it is for US – and we’re *very* well-informed as to what this all is and what it will be like.

Anyhow, midnight is here. Time for her meds and then sleep. And perchance, to dream…

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Home!

Posted on August 21, 2007 by Mike

We’re home! Updates will follow but in the meantime we wanted to simply post and let everyone know. Surgery will be next week and we will be called this weekend telling us what day to come in for pre-op tests, etc.

Thank you all SO much for your love and support! We really, truly, appreciate it!

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Monday Update

Posted on August 20, 2007 by Mike

Hello again. Quick updates tonight. We’re still in the Pediatric Ward of the MCH and aren’t really sure when or if they’ll release us. They’ve upped the dosage of Charlize’s medication to 4mg and feel confident that things are stable. However, considering how tricky this all is and how quickly it can change, they may feel it’s best that we stick around. At any rate, we’ve gotten into a decent routine now so Chantale and I each take turns to come home while still spending plenty of time together at the hospital. One of the real tough parts is not seeing Kyle on a regular basis but we are extremely grateful that her parents have been taking care of him. He’s basically been living with them since Thursday and they’ve got a good routine going with him.

We met with the resident who works with the specialist as well as the head of the pediatric cardiology department and they’ve told us that the operation will more than likely take place on Tuesday the 28th. Considering who’s currently waiting for heart surgery, we should be scheduled for Tuesday afternoon. At the latest, it would be in the morning of Thursday the 30th (our 4th wedding anniversary!) So, basically, there is a light at the end of the tunnel.

Because so many are worried/ concerned about how things have been for us, some photos from the hospital are now online. Click the image below to see them! Obviously, this is how things have been pre-op.


Thanks again, everyone, for your kind words and thoughts.

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Sunday Update

Posted on August 19, 2007 by Mike

I got 6 hours of sleep last night. Crashed out on the couch in the parents area at midnight, woke up at 6am, struggled to stand at 6:20am, and headed to check on Charlize.

This was the first night both Chantale and I stayed over and took the time to sleep.

A particularly hellish day, it was alleviated by talking with Isabelle our nurse at the ICU about a lot of the details surrounding post-op recovery (what to expect, etc). Then, after I sent Chantale home to get some rest, I talked some more with her while she worked. There were a lot of friendly moments with a lot of the staff which was nice. After spending numerous 12-hour shifts with these folks (thus over 24 hours (if not more) in 2 days) with many of them, it’s impossible not to feel joined in some bizarre way.

I hit a low point late in the afternoon when the parents of the post-op baby sharing space with us came in to spend time with her. Their baby is still struggling and who knows when they’ll start taking tubes out of her or even allow them to hold her. You can imagine how that hit me as I held Charlize tightly and rocked her to sleep and then couldn’t let go. I finally put her down when those thoughts were added to how I started thinking about how much I miss Kyle (who’s picture we have on Charlize’s bed) and had to excuse myself to the lounge. When I got back, a few more tears slipped out. Our nurse saw this and drew the curtains for privacy and came talk to me for a bit. I really appreciated the fact that it was a slow saturday and she was able to do this for us.

Chantale ended up coming back earlier than expected but she had realized it was the FIRST time she had ever been away from Charlize for more than 3 hours! The only other time she had been away was when I sent her off to watch Harry Potter with James a few weeks ago! She did get to spend some time with Kyle, though. Anyhow, together we were able to get settled in and then settle Charlize down. We even managed to spend a few moments alone in the lounge. Heck, we fell asleep next to each other – or so I thought we did! Turned out that they came to get her and she fed/ rocked Charlize until 2am when she came back to sleep.

This morning, after a quick wake-up, I went to get coffee and then took care of Charlize while Chantale slept until about 9:30am. I left at noon to come home and bathe/shave/nap and just now got off the phone with her. We’ve been moved from the ICU and are back on the 7th floor in the general ward. Still no idea of how long we’ll be there as they upped the dosage of propranolol from 2.5mg to 3mg. Not sure of the effects. Although she hasn’t been having spells (trust me, last night’s meltdown at 8pm would have normally resulted in one) she has been getting desaturated (dropping down to 70) while she sleeps.

So, that’s the update. It’ll probably be Chantale’s turn to post sometime tomorrow. I need to get some rest now… I’m still feeling a little fragile to the point that just now, watching some of the videos that were taken of Kyle recently for the first time, broke me down again.

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Chantale here posted in

Posted on August 18, 2007 by Mike

Saturday afternoon

No times to read friends page or reply. sorry.

Things I didn’t mention the other day. Signs that things weren’t optimal.

She only gained 1 lbs in a month, not even 11grams a day when it should have been 20-30.
she was in a GREAT mood yesterday. Last night was rough, ICU is loud, and active so she had a real hard time settling down, past 11pm, awake at midnight but gave me from 1am to 4am to sleep then from 5:15 to 8:15. Mike showed up at 5am to take over.

We need to do longer shifts to keep our strength, but long shifts with her are really exhausting. We can’t walk her since she’s hooked up to monitros so we can pace within 2 ceramic tiles for hours on end looking either at the nurses station or at the AMC downtown montreal. We don’t have bed or rooms to escape to, nor access to a Ronald MacDonald house to escape and decompress. We have the parents lounge which has a few couches, and a small fridge, we are living out of 1 small suitcase that is under her crib. No place for privacy, no place to cry without being seen. No place to sleep alone, the most comfortable I got was taking my shoes off to put my feet on the couch. No PJs in days, no bath. I could shower there, again it’s like walking into a closet so I choose not to. I brought some pillows, it helped, a small smell of home.

BF. That’s a whole different story. I’m so tired. So tired that my supply is dwindling. I know sleep will help but it’s not just that, I can’t be there ALL the time to be on call for her. If she has a growth spurt I simply can’t. So I’m trying to express but it’s not really working. I’m going to bring some milk from home but I don’t know how long this is going to last. It’s REALLY hard. I have people who say give up, some who say do the best you can. It’s hard. I want teh best for my baby and right now my BM feels like the best gift I can give her for all the crap she’s going to endure.

and by crap, for those who don’t know, it’s going to be hell. Dozens of needles, tubes, wires, a pacemaker, respirator, machines, drains going in and out of her body. I won’t be able to hold her for a LONG time, I won’t be able to BF for a LONG time. They won’t allow me to since they have to measure her food. I know it’s for the best but I can’t hold my baby girl. So not only am I trying to maintain my milk supply I’m trying to increase it during a crappy time.

Other than that, we’ll have more definitive news monday when the cardiologists meet and discuss her case, for now…we wait.

Oh, Happy 4th wedding anniversary to my husband and I for the 30th.

Kyle is great, I miss his SO much. It aches me, he came to visit us last night for about an hour and I waited by the elevator like I an impatient and excited kid pacing back and forth till they showed up. He’s having a great time at Omi’s & Grandpapa, but I know it’s draining for them, they’re trying to pick up the pieces of our life that we left behind, our dog, our son, sometimes our house. They also work full time so I know how hard it is for them. As for Kyle though I know he’s taken care of (and I do suspect Mom is trying to toilet train him) and he’s having a grand old time living it up without Mom & Dad. 🙂

Mike’s tired, we had lunch together today, that was nice. Even though we are there, we don’t see each other often. We don’t get alone time, behind curtains of an ICU isn’t private. And the only time I’m allowed to shut the curtains is if I’m BF, so Charlize is in my arms, I’m not looking for romantic, but some 1-1 time would be nice, even just to talk or hold each other or cry.

But she’s in the best possible hands, our own combined with those of the hospital staff. Even though the complications and everything they told us scared the shit right out of me. Terrified I am of loosing my baby. I felt like a whiner after holding her for over 5 hours last night I dared complain that my back was aching, until I realized I should just shut up since I won’t get to hold her in a while at all. It’s all very twisted.

Enough for now, I need me time.

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