Apparently word got around about the ducks in Calean's chest... Sometimes new doctors or nurses would come in and before listening would ask themselves aloud "wonder if I'm going to hear any ducks in here?" That usually got a big grin. Or they might have asked Caelan if there were still ducks in his chest, to which he'd respond with a QUACK!
I was so looking forward to a good nights sleep last night but it just wasn't meant to be...
In some ways it kind of made me happy, because it only reflected once again how long we've gone without a sleepover at CHEO.
Throughout this entire stay at CHEO, either Damian or myself were calling the nursing agency and cancelling our night shift nursing for that evening and when applicable the school nursing for the following day. Sometimes we'd cancel for the following day's night shift too. We really weren't sure how long his stay was going to be so never went much beyond that.
Regardless of when we called, we were always able to talk to a real live person.
It wasn't until just after ten o'clock last night that it occurred to me that perhaps we should have called to ensure we had a nurse for the night...
I did call then.
Again, I got to speak to a real person.
This time, however, they inform me that CCAC had placed a hold on the nursing shifts because Caelan was in hospital. They hadn't recevied a call advising that he had been discharged so there was no nurse scheduled for the night.
I forgot all about that.
(See? Kind of a happy thing, when you forget all these details about hospital stays. Kind of.)
Even more frustrating is that we'd spoken to the nursing agency at least four times during this hospital stay. I repeat, each time speaking to a real live person. Never once did they say, "oh yes, I see there's been a hold placed on services while he's in hospital." Heck, even a cranky "ya, CCAC put a hold" would have been appreciated. It would have been enough to remind me of all the paperwork processes that impact every one of Caelan's hospital admissions/discharges.
All I'm saying is that a gentle reminder would have made a world of difference.
You can bet that first thing this morning I was making my phone calls.
Tonight we have nursing... and I'm really looking forward to sleeping in my own bed!
An ENT med student came by this morning and returned around lunch time with Dr. B. Apparently they (ENT) agree there is a bit of a curve in the trachea visible in the x-ray that they don't see in previous x-rays. They checked back 5 years. The scope they did Friday didn't really clarify the situation either. About a month from now we'll do a follow up in clinic to discuss the probability of an bronchoscopy under sedation in the spring. It's possible that it was just his positioning during the x-ray so no need for concern yet.
At the same time, knowing that checking Caelan's ears and mouth are going to be part of the discharge assessment done by the floor, I asked Dr. B to check them. If I have to make Caelan go through that again, I'd rather have someone who knows exactly what they're doing check. Funny, Dr. B didn't mention anything about funny curved ear canals? Caelan's ears are not infected. There's no redness, but there is some fluid. Just something to keep an eye on. We'll mention it at the clinic appointment and if it's still there we can consider putting tubes in his ears during that bronchoscopy in the spring.
So... We're all home now. Ronan, Darcy and Ryland all have miserable colds. Probably all RSV. Really hoping that Ronan is strong enough to get through it without ending up at CHEO too! There were lots and lots of babies there having a hard time breathing through lots and lots of secretions. In Caelan's ward room there was a 15 month old, a 9 month old and an 11 month old, all with RSV!
Caelan is better. It's such a relief and so good to see. He's not 100% though. I'll be keeping him home from school tomorrow (against his wishes) to see how he copes with some activity since he's been lounging out in a hospital bed for 5 days. I think he's going to tire out pretty quickly... Hoping he'll surprise me!
We've gone over 24 hours without any kind of oxygen or treatment which is the prerequisite for going home.
Unfortunately earlier in our stay there was some concern about the look of his trachea in the X-ray and ENT was consulted. They came and scoped down his trache and had no concerns. At the time they just wanted to let us know they were aware he was here and would basically just be in the background. I repeat they had no concerns but said (and documented in his chart) that they'd check in again on Monday.
Now they won't discharge Caelan until ENT signs off.
If you've read the last post detailing our adventures to get to the floor then you understand that Caelan was extremely tired on Thursday. We continued with the ventolin treatments throughout the day fairly regularly. Not every hour, but probably close to every two hours.
Thursday night was a bit better. Four ventolin treatments and a couple of saline nebulizers to loosen up the secretions in a twelve hour shift. A little less oxygen support was required. Only concern was that he spiked a fever twice overnight.
Friday Caelan was well rested and he seemed a bit more himself. He was able to spend the entire day off oxygen with a ventolin/saline treatment at 7:30am and another at 4pm. He kept his sats in the 90s without a problem. However as the day wore on you could tell he was getting tired and by bedtime (8-8:30) we needed to put the oxygen back on. He stayed on the oxygen at the lowest possible setting all night.
Friday overnight was much like Thursday's, four ventolin treatments and a few saline nebulizers, along with running a temp.
Today, our Master Caelan has returned, full of all his usual spunk and attitude. Personality plus with a sparkle in his eye! Once again he's been off the oxygen all day and has required no treatments at all.
He seems to be fighting this RSV thing, however a swab they took of his trache site grew three different bacteria. This doesn't necessarily mean an infection. The bacteria could be colonised and not causing any illness. The three bacterias found were;
Yah, I made the doctor write those down for me and I'm still not sure I got them correct! Google helped a bit with the spelling...
They were concerned that maybe one of those bacterias found could be causing an infection that was resulting in this fever that keeps returning. Or could it be that he has an ear infection? Or urine infection? Or pneumonia? Or it could be just the RSV? Anybody else have a guess?
We went through the torturous experience of checking his ears again. I hate to say it, but again with a med student. (Insert eye roll here.) Apparently the canals in Caelan's ear are curved in such a manor that its extremely difficult to see far enough in to determine if there's an infection. From what they could see there was no redness. All that for inconclusive results.
For now, we remain antibiotic free.
We're just going to keep a close watch on those mysterious fevers...
Warning... This will be a bit of a rant. Consider yourself warned.
Caelan usually goes to bed around eight o'clock.
Wednesday night we were still in an emergency room at that time.
Caelan was depending on oxygen to keep his sats in the 90s and was getting ventolin treatments hourly.
He was exhausted not only because it was bed time but also from working so hard at breathing.
We were told he was being admitted around this time, yet it took until about 4am Thursday before he was in a bed on the floor. I think this is ridiculous.
I understand that going into the emergency room, this is a medical emergency situation and he'll need to be assessed and tests will need to be done. At this point though, we already have a diagnosis and treatment in place.
Yet the doctors from the floor he's being admitted to, need to do their own assessment of him. This involves them asking me all his medical history (as his mother I'm able to summarize the seventeen odd volumes they have on him) that I've already given the emergency department. GOOD NEWS ALERT! We've been out of here so long I don't remember all the dates anymore!! This makes me very happy!!
They come in as a team, one physically checking Caelan while the other starts the 'Spanish Inquisition'. Then the second resident will also physically assess him. In case you were unaware Caelan is not a big fan of being assessed. It involves them listening to his chest and back, tapping his tummy, looking for rashes, checking in ears, eyes, and mouth. Those last three, not happening because he's fighting them on it in true Caelan fashion. Especially after ten o'clock at night.
Anyway, part way through the floor's assessment they think it might be wise to have the ICU look at him. Hands off until that's done, oh but they want him to get an IV in the interim. (So not so hands off...) Caelan finally falls asleep around eleven.
They come to put the IV in around eleven thirty. He's pretty tolerant of them looking for a good vein, but loses it once they get down to business. After two failed attempts they're gone. Now it's after midnight and he's worked himself into a bit of a state with all the IV nonsense. I just get him back to sleep when the ICU team arrives for their assessment. They actually say the right things. There's no indication that he needs to go to the ICU. He looks rather peaceful sleeping although it's still apparent that he's working hard. The icing, they agree that there's no need for an IV at this time. Have I mentioned that I LOVE THE ICU!!! The level of care and support there is above and beyond, and unfortunately it puts a huge shadow on the rest of the hospital.
They can only pass on their suggestions to the Emergency Department. While they are doing that another nurse comes in to attempt IV access. With my glacial Momma Bear stare I inform her that she can look for now. When she thinks that she's found something I let her know that I'm hoping the plan has changed and that there's no need for an IV at this time. He is tolerating feeds to remain hydrated and there's no sign of pneumonia requiring antibiotics, therefore no IV. I was ready for a fight and was happy when I didn't have to go into full force battle, they'd taken the ICU's advice and scrapped the IV.
Now the floor residents return to complete their assessment. Those fools thought they might be able to get a look in Caelan's ears while he was sleeping. It's 2 o'clock in the morning. He was so ticked that he was taking swipes at them in his sleep, and I let him. I was about to lose it. Then they tried between the two of them to hold him down and even asked the nurse for help restraining him when I had had enough. I asked if this really needed to be completed at 2 o'clock in the morning? I asked what difference a few hours would make if they could just wait until later in the day, a more reasonable time. "OH but Mom if he's brewing something that would be almost xx hours lost when we could have been fighting the infection..." I tried to get it through their heads that even if they'd tried twelve hours ago in the middle of the day when he was more "willing" it would have been next to impossible. How do they do it in clinic they ask... Well it often takes a team of us to hold him down and we risk him going blue on us while he breath holds and other times it just DOESN'T HAPPEN!!! But if it's so damn important to you, get the hell out of my way and get your hands off my sick exhausted child and make it quick! I got Caelan on my lap and am attempting to get him in a position where I can hold him still for their most necessary examination and they can't keep their hands off him. Oh Momma Bear is not pretty, take my word for it. HANDS OFF AND WAIT ONE MINUTE PLEASE!! NOW, when I say I'm ready you make it fast because you've only got seconds.
His ears and throat were both clear.
Now they want blood work. They can't take him to the floor without it.
I think they know they're pushing me over the edge.
We compromised on a cap gas... it's not a needle and drawing of blood but more of a prick and then they squeeze the blood out. Sorry if that's too much detail. I had more faith in that being a success with one jab than an actual attempt at taking blood.
It was. We even managed to keep Caelan mostly asleep on my lap while it was done shortly after 2:30 in the morning.
Around three o'clock we make the trip up to the floor. My sincerest apologies to the other children and their parents in our ward room who were disrupted by our arrival at such an awful time.
Bed is in sight, but not yet. Oh no, now you have to go through it all again!!
I was happy that they'd pulled some info from our last stay but given that it had been awhile they did have to confirm details. talk talk talk and all I want is sleep sleep sleep...
Caelan's nurse that night seemed to understand my frustration and her examination of Caelan was done as quickly, as carefully and as kindly as possible.
She won me over when she made my bed up for me as I was comforting Caelan to sleep and still answering questions.
We arrived at CHEO around one o'clock and went straight to the emergency department.
We probably waited about twenty minutes in triage for our initial assessment. Not long but it felt like a lifetime... Caelan, feeling unwell, wanted me to hold him, in addition to his suction machine, emergency kit and the back pack I had filled with clothes, food and entertainment necessary for a trip to the emergency room. Felt a bit like a pack mule.
Immediately upon that initial assessment Caelan starts to get agitated and upset. He's been here before he knows what's happening. He's nobody's fool. Well his O2 sats drop into the low 80s so off to resuscitation we go. Once calmed down his sats are a bit more acceptable in the mid to low 90s. I'm referring to his levels of oxygen saturation, we would love 100, we accept that his norm is more like 97-98. Under 91 is unacceptable and you're put on oxygen.
Now forgive me because I can't remember the order of things, but going for a chest X-ray to rule out pneumonia was pretty high on the priority list. He also received a ventolin treatment with atrovent added to try and open up his lungs to allow him to breathe easier. Unfortunately this treatment, often used with asthma patients, had little to no effect. They also ran a swab test on his secretions to check for bacterial infections or viruses there.
The X-rays came back and although there was some fluid in the lungs it was really minimal and no sign of pneumonia. So happy to hear this as it was a major concern. However the swab came back positive for RSV. Ugh. I knew it wasn't good. Heck he'd had shots every month over the cold and flu season for two years to protect him against RSV when he was an infant...
So what is RSV I ask... Well basically a really bad cold. Respiratory syncytial virus. Bottom line is that it's a virus so no antibiotics, only supportive treatments to help you breath. Oxygen, in combination with ventolin and or epinephrine nebulizers. No guarantee that any of these supportive treatments will help though. Obviously the oxygen does, but I have to tell you even on oxygen, Caelan is still having great difficulty breathing.
Shortly after getting the results we were moved from the resuscitation bay to an emergency "room"... Here Caelan got a dose of prednisone and he was given three ventolin treatments back to back. While this did increase his secretions and possibly clear him up the effects were very short lived and did nothing for his shallow rapid breathing and nasal flaring that had prompted me to be there in the first place. However they continued to give ventolin treatments every hour for the rest of the night. This was to treat a wheeze they could hear in his lungs. (I was asked repeatedly if he had asthma.) Since Caelan had required oxygen to keep his O2 sats in the acceptable range our entire visit, there was little chance of us getting home so it came as no surprise when we were told he was being admitted. The question was where? Was he going to the floor or the ICU?
Well it was a good long run but I'm sad to say that Caelan has been admitted to CHEO.
This illness progressed rather quickly and caught us off guard. Not that you're ever really prepared for a stay here.
Caelan showed some signs that he wasn't well on Monday, but nothing extreme. He required a little more suctioning at school and seemed a tired that evening. It was Monday though so we didn't really think much of it. It's only in retrospect that I recognize these as signs that something was brewing.
Tuesday I got a call from Caelan's school nurse. Caelan seemed to be a little out of sorts, more suctioning again and a runny nose. He was still participating, but definitely had a cold. Okay, as long as he's still participating I'm happy to have him at school. However a couple hours later things had become worse. He was done. Exhausted. Glassy eyed. No longer participating and wanting to come home. Ronan and I went to go pick him up. He was quieter than usual and most obviously fighting something.
We decided to run his overnight feeds at half speed, hoping that he would be able to tolerate it. He did. He was extremely quiet and snuggly Wednesday morning. He was also working very hard at breathing. Nasal flaring and shallow, rapid breathing. Not good. It looked like we needed to start making plans to head to CHEO...
Changing Ronan's diaper is like trying to change an alligator.
The instant that his back hits the change table he's flipping himself over onto his tummy and quickly getting on all fours. I'm not sure where he thinks he's going to go since there really isn't much room up there. Especially when I've got a death grip on at least one leg.
I think he's just expressing his intense desire for "independent thinking". If I lay him down he wants to sit up. Naturally.
The other day we had a bit of a messy change after a series of attempts at "independent thinking" on Ronan's part. This required a full change of clothes, not just the diaper.
While I tried to regain control all Ronan wanted to do was look out the window.
At least I have an idea as to where he thinks he's going to now...
Last week one of the wheels fell off the van. Nobody was hurt and we only caused some minor traffic delays while the van was stuck in the turning lane of a local main road during morning rush hour. We had the van towed to Damian's parents heated garage and we're very lucky that Damian and his dad were able to fix it in a day.
This week the pipe split on the exhaust. We were driving a very loud "nascar" van for a day. It's since been fixed
Afraid of what next week might bring.
Or maybe the brakes that were done two weeks ago count. Oh, I'm so happy to think that we might have already had a set of three and there isn't anything else to come!! Oh please let it be so!!
Now I can't remember how the conversation got started but we were discussing how Daddy has no idea whose clothes are whose when it comes to his girls. It's true. If he's folding laundry he's constantly asking whose pile the clothes should go into. More often than not, Caelan can help him out. If he's not asking, then I'm moving them from one pile to another or the girls are throwing them in each other's room because "it's not theirs!"
Please note this is not a complaint. I love that my husband will fold laundry. I'm just explaining how it is.
Anyway, I think Daddy said something along the lines that since their new pyjamas are the same it won't matter who he gives them too. I believe I spoke up and said the sizes were different... Here's the quick banter that ensued:
Darcy: Yah, because I'm smaller... Hopefully
Ry: and I'm taller
Damian and I, in unison: Hopefully
Darcy: It's just your long head that makes you taller
Ryland: To fit my big brain
Darcy: No your brain is up here (pointing to her forehead) and your forehead is actually quite small
Ryland: Nope my brain is so big it takes up my whole head!
Unfortunately it got worse.
I told Darcy that I thought she was wrong.
Ry had her Momma's big forehead and I apologized to her for it.
Then Daddy said something under his breath, but not quite. In fact, I think he was trying to say it but was already laughing so hard at his "funny" that the girls didn't quite catch what he said. Ry's a smart girl though and she figured it out while Daddy was still trying to breath through his fit of giggles and wipe his tears away... She wasn't impressed, but took the teasing in stride with a huge grin on her face.
Something along the lines of our foreheads being so big you could watch movies on them!
They were basically sugar cookies with marshmallows melted on top... I was a bit disappointed because my marshmallows didn't melt like I thought they should. They were still a huge hit and tasted great.
I think they look more like some oozing alien heads than snowmen. Maybe it's the green eyes...
I can't help but laugh when I look at them. I guess that's a good thing?!?!
I would highly recommend if you are going to make these to either refrigerate or freeze the oreo/cream cheese balls before trying to dip them in the white chocolate! I couldn't dip them as they were too soft and started to lose their shape so I just spooned the white chocolate on over top.
Over the years, we have taken many steps to make our home safe for them. All the outlets have covers on them, small toys that represent a choking hazard are stored safely on higher ground and cleaners are also kept out of reach.
My Dad was kind enough to install a door at the top of our basement stairs and even equipped it with a lock. We have those childproof door handles on a few select doors in our home. We keep one on the door that leads to the basement as a secondary precaution. We also have one on the door that leads to the bedroom hall. Not that there was danger down that hall, but there was a much adored sleeping baby that Mommy didn't want disturbed by his big brother who "just wanted to see him".
This may seem unrelated, but stay with me... It has happened before that our bathroom door has locked closed with nobody inside. In this situation I've used a kitchen utensil to turn the lock mechanism form the outside to regain access. The last time it happened Caelan was kind enough to go get a spoon for me.
The other night while I was doing dishes Caelan came and got a spoon out of the drawer in the kitchen... I knew that Damian had asked Caelan to get a facecloth for his bath and I was curious as to why Caelan thought he needed a spoon in the bathtub. I dried my hands to see what he was up to...
I'm not sure why he wrapped the spoon up in his facecloth. It was an afterthought following his initial attempt at unlocking the childproof handle with the spoon. It also gave me a chance to grab the camera so I'm grateful for whatever made him think that was the way to proceed.
I love the way that his mind thought this through... However, it also makes me a little nervous for what's in store for the future!