Wednesday, November 30, 2011
Caelan is back in the OR this morning.
My heart's in my throat, my nerves are fried and my stomach won't settle down.
The last time Caelan was in the OR he coded and I'm terrified of hearing that PA system turn on again. It would be one thing if you heard the click and they started talking immediately, but there's always a pause. And that pause just about kills me.
Waiting. Waiting is hell at CHEO.
So Caelan is back in the OR and we are waiting. yah. sucks.
They're going to do a bronchoscopy. That's what they had planned on doing the last time before Caelan showed them his alternative plan.
The results of that bronchoscopy will determine their plan of action.
We were forewarned yesterday. We knew it wasn't going to be good because Dr. V (ENT) brought us into a room for our pre-op chat. A room is never good. If the conversation can't be handled at bedside you know it's going to suck. I really didn't want to go with him. We had a good idea where this was headed and it just sucked.
Basically, if they see something that can be fixed, something wrong, something that will explain all the airway trouble that Caelan's been having they'll fix it and we're all happy as can be.
Is this what they expect? No.
What's expected is that everything will look exactly how it did the last time. Everything will look great, his airway nice and open and all just like they want it to. Unfortunately that doesn't explain Caelan's difficulties in breathing. For that reason Caelan would end up with another tracheostomy.
We know that the decision to start this entire process of decannulation was primarily for our family life. The difference it would make is incomprehensible. For Caelan though, he went from having a perfect airway to an okay one. He's made it very clear that it just isn't working for him. His trache did work for him.
Now, I'm just trying to accept that.
In the interim though I'm really, really hoping that they just find some obstruction that explains all our troubles away.
Tuesday, November 29, 2011
Caelan had stabilized and they had time to prepare for the intubation. I'm happy to say that it went smoothly.
With this most recent turn of events, as we had previously expected Caelan's meds have been increased significantly. Both his morphine and versed infusions have been doubled. They're not holding back on the "rock" either - that's the drug that works kind of like a temporary paralysis and makes it so he can't move at all. He's also bought himself a new foley catheter and urology will be by to put that in as soon as they can.
Quick update: The plan for last night was a bit more hands off. Just sleep and we'll try not to bug you at all. It worked well from about 8pm -- 4am, after which he became a bit more restless and alert. He's eating through those happy meds like they're candy again. We expect they'll have to increase his infusions of both morphine and versed again today. He lost his foley catheter at some point due to a blockage but seems to be peeing well this morning. Here's hoping we don't have to put it back in.
Here's another "outside the box" conversation from last week that's so typical around our house...
Setting - Daddy goes to wake Ryland up for school.
Daddy: Hey Ry. How are you liking the Jackie Chan book? (sitting on the edge of her bed)
Ry: I like it. (as she snuggles deeper under her covers trying to avoid morning)
Daddy: He's a fun guy, eh?
Ry: He's not a mushroom.
She hadn't even opened her eyes or lifted her head off the pillow yet.
Monday, November 28, 2011
First priority today was keeping Caelan stable. His two arrests yesterday are obviously a huge concern and remain a major focus. It is common practice after an arrest to cool the body down. By cooling the entire body down it slows the metabolic rate and conserves energy and betters the outcome post arrest. Or something like that.
In addition this morning Caelan began to spontaneously drop his saturation levels. Not something we want him to start doing. Several times his sats dropped suddenly and they had to bag him to bring them back up. It's suspected that this is because he is so sedated he isn't coughing up any of his secretions and as a result they pool and obstruct his airway. They're able to suction these out and it seems to solve the problem but definitely something we need to watch closely.
There was also another new concern that developed late in the day yesterday and worsened overnight. Caelan's right leg (the one with the arterial and venus central lines in it) was having extremely poor circulation. That's probably an understatement too. It was really bad. They couldn't feel a pulse in his foot and had to use a doplar to hear it ever so faintly. The were thinking that they'd have to remove the arterial line and called back in the cardiac surgeon for his opinion. I have to admit that he really wasn't impressed with the idea of them taking out the line that took him two hours to get the day before - in the most good natured of ways. He was concerned though that the leg wasn't being insulated from the cooling pad Caelan was on. There was no reason to cool the legs post arrest. He recommended that the legs be insulated and that the right leg be wrapped in warming blankets. This would increase the blood flow to both legs and hopefully help. I'm happy to say that it worked and his right leg and foot look remarkably better... Unfortunately for Dr. M, they still took out the art line later this afternoon.
There's always a risk for blood clots when there are central lines. Ultrasounds were ordered on Caelan's groin to check. At the same time an ultrasound was ordered for his abdomen/kidney as a precaution to just make sure everything looked alright there too. What they found was a blood clot in a vein carrying blood from his kidney. Actually I don't think they saw a clot specifically, more just a slowing down in the flow of the blood which is typical of a clot.
The blood people (don't remember the name for this team of doctors) were called in. They explained that the two ways people most commonly get clots are from either central lines or as a result of cardiac arrest. They understand the necessity for Caelan to have that central line but they'd like to see it gone as soon as possible. They've started Caelan on the blood thinner heparin. They chose that blood thinner because if for any reason he needed to go back to the OR they can stop it at anytime and within two hours it would be out of his system. Four hours after starting him on the heparin they'll do a blood test to determine if the dose is too high, too low or perfect and adjust it accordingly. It's because of this that they got rid of the art line.
I questioned today why cardiology hadn't been consulted when he'd had two cardiac arrests. I understand that they're confident that it was because of a lack of oxygen, however he still had to cardiac arrests and they're not 100% sure. They agreed. Cardiology came and did an ultrasound on his heart but I haven't heard the results yet.
Speaking of results, cultures have been taken from just about everywhere and we're waiting to see what if anything grows. Caelan's being treated with some wide ranging antibiotics but we'd like to be able to narrow that down a little and target something specific. The Infectious Disease Team has also been consulted and are now involved in this aspect of Caelan's treatment.
Endocrinology has also been consulted because sometimes repeated steroid use can cause some type of immune deficiency - so that instead of getting a little cold Caelan would always get the biggest, worst cold ever, the most extreme. Not sure I completely understand, but they've been consulted too.
Our ENT team came by several times today. At this point while he's vented they're quite hands off and will wait until things settle down a bit. It's expected that Caelan will have a bronchoscopy later in the week to check those cords. Dr. V feels that the airway really is big enough and we really can't laser any more away. However at the same time he understands that we can't continue all winter like this if every sniffle is going to send Caelan to the hospital. I hate to say it but there was mention of possibly re-traching to get him through the cold season.
This isn't going to be easy to type and probably not much easier to read...
Yesterday didn't get better before it got much, much worse. Caelan left for the OR to be intubated. He was nicely sedated and we weren't expecting him to be gone too long. We left for the café to grab a quick drink.
Imagine, it's a Sunday and the hospital is very quiet. Every parent's worst nightmare would be to hear a Code Blue call to the OR. That's what happened. We were both in shock and I think wanted desperately to believe that there must be someone else in for an emergency surgery on a Sunday afternoon. How awful is that? Then one of the PICU nurses is there beside us. I don't want to hear what she has to say and I don't want to go with her, but I do. We rush up to the operating room. We aren't allowed to see him yet. We must wait. We discover that chest compressions had to be done for about five minutes, but they've stopped... Then we're told he's stable. We can continue to wait there in the hall or go back and wait in the ICU. We choose to return to his ICU room. A resident comes to let us know that the chest compressions were started right away so they're expecting a good outcome. His heart stopped. He had no pulse. But they got him back. He's stable.
Finally he comes back to the ICU. We're able to give him a quick kiss before being ushered away. They were unable to get a central line in the OR and really need one. His blood pressure has been low and needs monitoring. They'll continue to work on the central lines in the ICU.
There's a second cardiac arrest. Chest compressions again.
We need those central lines. The ICU staff try and anasthesiology try without success. Eventually, our beloved Dr. M., the cardiac surgeon who repaired Caelan's vascular ring at three days old is called in. He works for two hours to get both an arterial line and a venus line by cut down. In between, Urology was called in to put in Caelan's foley catheter.
It was a very long day... and it's only three o'clock in the afternoon.
In the end Caelan had three IV's (one in his belly and each wrist) and three central lines (one in his left leg that has since been taken out and the two from cut down in his right). He'd received a blood transfusion and has been intubated. He's back on all those narcotics that we've worked so hard on weaning him from over the past two months - today would have been his last dose!
Sunday, November 27, 2011
Saturday, November 26, 2011
As long as we keep him calm and happy we're ok with a good oxygen blow by. He's not doing well without the oxygen though. He needs it. That may be because he's had several "episodes" today.
Episodes = MAJOR FREAK OUT
When he gets upset his sats drop into the 70s quickly, and often the 60s. For your information, you want sats of 100. The 90s are acceptable. In the 80s there are nurses there in minutes to ensure that oxygen mask is on his face. Anything lower than that and you've got a full team in there. When we arrived they couldn't get a reading better than 52. I'm not convinced it was accurate but that's irrelevant.
Teams don't really help Caelan calm down. The amazing thing is that in the ICU they've realized that, and basically the plan for tonight is to let us handle it until it's apparent that we need more help. They're going to keep their distance.
Personally, I think there is some underlying issue. I'm not convinced that this is just an airway concern.
I do understand that the airway issues do take priority and need to be addressed first... but this time we're not leaving until they look at everything. I think we're all getting really tired of coming back here every other weekend.
Friday, November 25, 2011
Thursday, November 24, 2011
functional age ranges; it is important to recognize that Caelan's visual
deficits may impact his performance in some areas, despite the fact that he
uses his vision very well.
Fine Motor 18-20 months
Visual Motor Integration 26-28 months
Activities of Daily Living 15-18 months
Perceptual/Conceptual Skills 18-36 months
Play 24-36 months
(Excerpt from the August 2011 assessment we received from our Occupational
Wednesday, November 23, 2011
As for Caelan... we are constantly questioning whether we should bring him back into CHEO. Last weekend we didn't because he seemed so well during the day and it was really only the nights that were concerning. He seemed to be teething, maybe fighting a cold too, so we didn't want to over-react.
Caelan had a follow up appointment with Dr. V (ENT) on Monday morning. This was another reason to delay going into CHEO, if we could have our concerns addressed without visiting the Emergency room all the better! We thought ahead this time and captured moments of Caelan's days and nights, good and bad times on video to show Dr. V.
We were given another 3 day prescription for the anti-inflammatory steroid, dexametasone. It worked really well last time and allowed all of us a great full nights rest. It took until last night for us to get the script filled and I just have to say I LOVE that drug!! I would like to have a lifetime supply. Caelan slept AWESOME! He didn't stir until just before 6 this morning!! It felt great.
The other outcome from that appointment was that a sleep study was ordered. We were told this would probably take a few weeks to schedule. Caelan somehow manages to get to the front of every line he's ever in and is all set to go in tomorrow night!! We were so surprised when we got the call. It's exciting to get things moving along quickly.
With that in mind, I e-mailed Dr. V this morning to discuss the lasting effects of the dex (new med). We're we ok to give it to him tonight and enjoy another blissful nights sleep or would the lasting effects throw off the sleep study tomorrow night? I was very disappointed to hear that we should avoid his dose for today if possible because he agreed that it would make the sleep study kind of pointless if he was still feeling the effects of the dex.
On Monday Caelan also had an appointment with audiology. He did really well with his tests but he's getting a bit too smart for them and next time we'll try the big boy testing. He still goes beserk when they put that little probe in his ear and I often wonder what he finds so offensive about it. They were only able to check his right ear but thought everything looked really good.
After a busy morning in ENT, Caelan headed over to OCTC to visit with his Blind Low Vision Therapist. BLV will be visiting his preschools to see if she has any suggestions or recommendations to help make his time there easier. We want to make sure that Caelan stays on her list, despite being a functioning deaf/blind child. It will make his transition in to school that much easier and keep everyone well aware of his requirements. At the same time - and this freaks me out a bit - she's going to contact the school about beginning to set things in motion for him entering kindergarten next year... Where does the time go?!!? And, yes apparently it will take that long!
Caelan continues to enjoy both his preschools. He attends the mainstream preschool every day of the week and the preschool at OCTC on Monday and Friday afternoons... Our most common feedback is that he's a real ladies man, always flirting with the girls... but that's for a later post!
Saturday, November 19, 2011
Damian stays up to give Caelan some of his medications and start his overnight feed. We say he has the first shift.
I go to bed. I turn the monitor on at that time to make sure that I can hear Caelan. Usually I can hear Damain moving about and the television too but it doesn't seem to bother me. I fall asleep quickly and without much effort.
The funny thing is that I never notice when Damian comes to bed but I seem to know when he's there. After Damian comes to bed, if Caelan cries-coughs-whatevers I am out of bed like a shot and half way down the hall before Damian knows what's happened. However, I'm never aware of how Caelan's night went before then. I always thought he rested well because he never woke me up. I was wrong. Damian has spent many nights at the crib side calming our son and I sleep through it all.
Isn't it strange how a mothers instinct works? For me to be aware on some level that Damian's come to bed and it's now my turn to care for Caelan; to know that my shift has started.
This is how things have been going since Caelan was discharged back in October. Many a sleepless nights as our boy struggles with breathing the most then. We had a couple amazing nights when he was taking the anti-inflammatory steroid before the most recent surgery but since then it's been back to waking up
Last night however, it backfired. I awoke and came flying down the hall and into the living room, only to find Damian there. I'm not sure I was even really awake yet and it had me so confused I went back to bed to see who was there, if not Damian. There was nobody there. I thought maybe Darcy had snuck in, but nope, nobody. Just a malfunction in the system.
Tuesday, November 15, 2011
Is that a record breaking stay, or what??
Yesterday when we met with Dr. V. (ENT) before Caelan went in to surgery, he asked if we had any last minute questions. I had only one. "When do we get to go home?" We all laughed it off... We had previously discussed the expected two nights minimum stay so I wasn't really looking for an answer, just throwing it out there.
However, when Dr. V stopped by this morning and asked how our night went I simply replied that it was relatively normal. Nothing different than what we've been dealing with at home since our last discharge. At that point he suggested that we could probably go home today - if I was okay with that!?!? Are you kidding me? Recovering at home is always better than recovering in hospital. With no new prescriptions to wait for and no follow up appointments to make our discharge was unbelievably fast and painless. We were out the doors by 10:30 this morning with Caelan waving bye and blowing a few kisses!!
Monday, November 14, 2011
The surgery went well and we're hopeful that this millimeter makes all the difference for him... and if not... Well, we'll cross that bridge when we have to and maybe even do this all over again!
For now Caelan seems to be comfortable - and on NO NARCOTICS!!! Oh, I was so happy when I heard this was the plan and even happier when he seemed to tolerate it. He is allowed to have Tylenol, so if he seems uncomfortable that's what he'll get, to start with anyway! Right now, we're well into our Mickey Mouse Clubhouse dvd and that seems to be all the 'drug' he needs. He's definitely not happy about being here however I do think he's starting to feel the same familiarity as we do in this place. Not sure how much I like that... I guess it is what it is...
Better get back to my boys!
Sunday, November 13, 2011
Ry: Where did they go?
Dad: They went to Georgia. Savannah, Georgia
Darcy: Hey you named one of your webkins after there (with her mouth full)
Ryland: One of my webkins is named Georgia.
Darcy: I wonder if they'll see a devil...
It only took me a minute, but that was a minute longer than it took the rest of my family who are always thinking from left field... So I'm just curious, how many of you can follow along with this conversation??
Saturday, November 12, 2011
Cinnamon Roll Cake from My Shiny Blog
3 cups flour
¼ teaspoon salt
1 cup sugar
4 teaspoons baking powder
1 ½ cups milk
2 teaspoons pure vanilla extract
½ cup (1 stick) butter, melted
1 cup (2 sticks) butter, softened
1 cup brown sugar
2 tablespoons flour
1 tablespoon cinnamon
2 cups powdered sugar
5 tablespoons milk
1 teaspoon pure vanilla extract
- Preheat oven to 350⁰F.
- Mix all ingredients for the cake together except for the butter. Slowly stir in the melted butter and pour into a greased 9×13 pan.
- For the topping, mix all the ingredients together until well combined. Drop evenly over the batter and swirl with a knife. Bake for 28-32 minutes.
- While cake is still warm, drizzle the glaze over the top.
It was super easy and DELICIOUS!!
I only wish I had taken pics for you... but you'll just have to make it yourself!
This morning Caelan didn't wake up fully until almost EIGHT O'CLOCK!!
He coughed a bit around six this morning for the first time, which was prefect because that's when I have to give him his clonidine. At first I thought, wow I feel so refreshed! I think I'm up for the day, but I was able to crawl back in bed and fall back asleep quite easily. Yeah!
At seven I woke to the beep of Caelan's feed pump ringing off - Caelan was still sleeping...
Now I thought I really was awake and settled in on the couch -- to be woken up by Darcy a half hour later!!!
You never realize just how foggy you are on little sleep because you just get so used to it. It becomes the new norm. And then one day you get decent sleep and everything just seems so clear!!
Let's just hope this is the new beginning... I can only hope.
Friday, November 11, 2011
Yes, I've been worried about Caelan. Waiting for a surgery date again has been weighing on my mind. What if he gets sick before we get him in for surgery. Should we have admitted him to get him into surgery faster? Did we make the right decision keeping him home? This list could go on and on ....
I've been worried about the girls. The attitude is just a flying and I feel I am constantly second guessing our parenting decisions... At the same time, frustration is at an all time high and patience nearing some all time lows and the girls are pushing every boundary and testing every limit. We're not enjoying having to argue about every.thing.every.single.night. Think I might have griped about this already...
The girls' progress reports came home from school. They're both doing good. Nothing exceptional, but meeting expectations. I find that Ryland is coasting along. I think she could really excel but we haven't been able to motivate her. I find she lacks ambition or initiative and I don't know how to teach her that. Heck, I'm not sure I have that!! I've asked for meetings with Darcy's teachers because I really feel that Grade Three is a critical year. It's amazing how much more homework they get this one year. She has more homework that Ryland in Grade 5!! It's a struggle to get her to complete it, and near impossible if you want it done neatly, which for some reason is a big deal to me.
Then the next minute, I think I'm too hard on them.
Work is work. I'm in the middle of training some time sensitive material. The majority of the training sessions are scheduled for next week and the launch date is November 20. I've been wondering how I will balance work next week and Caelan's upcoming surgery. It's been on my mind a lot this week, going over various scenarios without even having a surgery date. Making back up plans and alternative arrangements, all the while wondering how we will afford me taking this additional time off.
Money. Always on my mind... (Can't help singing that a la Willie Nelson!)
Then that gets me thinking about how we are going to manage everything when Damian does return to work. He extended his leave until the end of this year. There are so many things to consider and creating a schedule that will work for all of us is going to take some major juggling.
Then there are the things that even I think I'm silly to be getting worked up about right now... like organizing for Christmas! This should be the last thing I'm worrying about - and I'm not really worried about it, but definitely thinking about it and aware of the fact that I'm not as organized as I like to be at this time of year. Or what about worrying about making birthday plans and birthday lists?!? Or baking for lunches? I'm telling you ... TOTALLY INSANE!
AND the worst of all --Worrying about whether I'm worrying too much!! Anyone else out there do that? Love when I start worrying about whether I'm worrying so much that my ulcerative colitis is going to flare! Just ridiculous - because then I can worry about what would happen if it did flare and ...
See it just never stops. My brain is in mental overload...
oh yah, and I almost forgot. Today we got a date. Caelan goes in for surgery on Monday at noon.
Tuesday, November 8, 2011
Friday, November 4, 2011
|Then: December 2009|
|Now: October 2011|
Thursday, November 3, 2011
My fifty-six year old male colleague just ate his FIRST EVER peanut butter
and banana sandwich!!
How could you go that long without ever having tasted a peanut butter and
They're such a staple in our house... I'm simply amazed!
And yes, he liked it!
Wednesday, November 2, 2011
I know we shouldn't dwell on the past but I have a hard time forgetting
those days three years ago.
A dozen days that felt like a lifetime.
From the highest of highs to the lowest of low.
It started on October 19th, 2008
I remember finding out we had a son.
I remember him being beautiful.
I remember being surprised at his strawberry blond hair
I remember commenting on his facial palsy but not thinking much of it.
I remember the concern on our nurse's face.
I remember her determination that the NICU take a better look.
I remember a neonatologist coming to tell us there was good and bad news.
I remember hearing the bad news - TEF (at the time, just a big long scary
I remember the relief at the good news - it can be fixed.
I remember that feeling, the realization that your newborn is going to have
I remember the long trip over to CHEO through halls that would become too
I remember smiling at a familiar face in a world of unknowns.
I remember surgery being postponed.
I remember being brought into THAT room.
I remember being told that there were other concerns.
I remember discovering that Caelan had a solitary kidney.
I remember learning about his different heart.
I remember the feeling of trying to hold it together.
I remember surgery being postponed again.
I remember time moving backwards while he was in surgery.
I remember the relief and fear of seeing our son post op.
I remember days going by in a blur.
I remember the questions in my head.
I remember an awful extubation.
I remember being absolutely terrified.
I remember feeling devastated when he was re-intubated.
I remember so many "what ifs?"
I remember the love on faces looking at our son.
I remember so many things.
I remember so many feelings.
I remember being brought back into THAT room.
I remember the anxiety.
I remember trying to hold it together and failing miserably.
I remember them explaining about CHARGE.
I remember trying to focus and blink away tears.
I remember them painting the worst possible picture.
I remember being held tight.
I remember looking into the sweetest face.
I remember that it was Halloween.
I remember having to go home and fake it.
I remember feeling like our world had crashed around us.
Tuesday, November 1, 2011
I don't know if I'll ever get used to being so familiar with CHEO.
I don't know if I'll ever understand why it takes so long from the time they tell you you're discharged, to when you're actually allowed to leave the building.
It can be the most frustrating thing EVER! You wait, and wait, and wait to be told that today is the day that you get to go home. When you finally here the words it takes mere seconds to have everything and everyone all ready to go. Yet, it's like they were only teasing because apparently you aren't allowed to go just yet. We're still waiting on this prescription, or a sign off from that Doctor, or a follow up appointment with this team... REALLY?!?! Are you kidding me?!?!
Don't tell us we're good to go until we are in fact good to go! (Note: Especially when I ask specifically "You mean, right now?")
It's like dangling a carrot in front of our nose. Doing that to parents that have just been through your express 72+ hour rollercoaster ride are not in the correct mood or frame of mind to begin playing these games. We're
You'd think we'd learn - well I thought we had - that when they tell you that you're being discharged at 9 o'clock in the morning, you'll be lucky to leave the building before 3 o'clock in the afternoon!