- As we were leaving the pediatrician appointment, Ryan was over tired and unhappy to be strapped into his car seat. We were waiting for the elevator and he was wailing. There was a woman waiting with us, so we had Ryan covered up with his 'germ barrier' blanket. We all went into the elevator and Ryan continued to voice his frustration. When we got out of the elevator, the woman said, "wow, he's got a good set of lungs." Definitely a quote for the record books. She has no idea the irony behind what she said. We'll take it as a good sign though - the kid who didn't have enough air reserve to even cry for a second can now wail like the big boys ;-)
Wednesday, February 27, 2013
Feb. 27. Forgotten detail
With all the 'broken finger' commotion, I forgot a significant detail in the last post...
Tuesday, February 26, 2013
Feb 26
It was definitely one of those days today. I feel like I've been composing this post in my head all day.... I guess I should start with 48 hours ago on Sunday afternoon I took Sadie to my parent's for her usual Sunday 'date' because we have no 'help' on Sundays, she'll often spend some time there so Scott and I can regroup and focus on Ryan. Since the poor girl doesn't get anywhere close to the recommended amount of physical/gross motor play, we decided that a game of chase around the big circle of my parent's house would be a good idea. It was. Until she tripped and fell half way through our first lap. No big deal, just a hurt pinky finger. Or so we thought. Later that night it was quite swollen so I gave her advil and convinced her to put some ice on it. Next day it was still pretty swollen and obviously sore, so I called our family doc to see if we could get in. They had a cancellation so we rushed over (sacrificed my shower and all!). It's hard to put into words how Sadie behaved at the doctor's. She was brave and terrified, nervous, polite, and tough. Now - this was Sadie's first 'injury' so I knew that how we handle this one will pretty much shape how she'll react to injuries. We tried not to make a big deal about it - it's just a sore pinky right? Well when you're 3 and have never been hurt before, you start asking questions. "Why did I hurt my finger?" Because we were running and you fell down. "Why was I running?" Because we were playing chase. "Why were we playing chase?" Because exercise is good for both of us and Grandma and Grampy have lots more space than we have to run. "Next time I will run slow." You don't have to run slow, you just have to be careful. *I have answered these questions, or have redirected her away from asking these questions countless times over the last few days.* Now back to the story. The doctor couldn't tell if it was just jammed or if there was a fracture so she was going to send us for xrays. Sadie piped up and told her that 'it's not a crack!' The doctor looked at me shocked and asked how she knew about that kind of thing. Well - I believe Madeline (from the story book) fell and cracked her head one day. Fair enough. So down we went to the xray clinic. They had purple chairs and a hideous lovely dried flower arrangement, so Sadie thought it was awesome. I told her that they were going to take pictures of her bones and that Ryan has had a billion x rays so it's easy as pie. She was great- stayed super still and even looked at her bones (which weren't purple). They were going to call us that afternoon or this morning if there was anything broken. No news was good news so we went on with our days.
Speaking of re-taping, we've become experts on medical tape in this house because of the constant battle to get Ryan's tube and prongs to stay put. Sadie told me today that when we do his tapes it makes her be bad. It is a very unpleasant process to do the tapes. We have to swaddle him tight and the 'assistant' has to hold his head still while I do the re-taping. He SCREAMS constantly. Like the very loud, very pissed off scream. Usually Sadie is playing in her room and was never too effected by it. The other day she came in and started touching the prepared tapes and then yelled something like, "BE QUIET." I explained that it doesn't hurt him to have the tapes done, he just doesn't like to be held down. It's better to have him cry a little so that his tapes are good rather than letting his tapes be loose and have his tubes come off. She seemed to get it and agreed that next time we do the tapes, she'll watch a video in my room on the computer. Oh this little 3 year old has seen more than her fair share of drama, poor thing.
***To be continued***
I finally booked Ryan in for a check up today with the beloved pediatrician. It was a 9:45 appointment, so naturally, waiting for an HOUR is expected. Not. Usually they take him right in being that oh, ya know, he's on oxygen and is VERY prone to respiratory infections. Today however, I guess they were just a little too busy, so 'luckily' they let us wait in a closet office. This normally wouldn't be a huge deal, other than the fact that he was TIRED and was very fussy and basically did the I'm tired but can't sleep wail for the entire hour. We saw the good doctor eventually (right after I told the nurse we were about to leave). He was full of no news, no help, and nothing to say. I had questions about his brain injury and whether or not we should be following up with anyone about it. So he measured his head circumference (which was fine). What about watching for signs of CP? Again, a roundabout non-answer. What about his digestion and the fact that he relies on a laxative to poop, could there be an underlying issue that we're missing? The response: As long as he's pooping, he can be on the lax forever. Great. THANK YOU. Then he asks me how I'm doing. So obviously I start crying because whenever a healthcare professional asks me how are you doing, the tears just come. Doesn't help that this was just a super shitty appointment and I was frustrated to the point of tears of fury. (P.S. The day started with a 4 am wakeup from the nurse saying Sadie was screaming for me to take her to pee). He gave me the old "you have to take care of yourself, do yoga, meditate" speal - easier said than done my man... and gave me the number of someone to call. I KNOW I have to work on myself, and I'm trying - but it's hard. If it's not a pulled tube, it's a busted toilet pipe, or broken finger, or something else or something else.
Which leads me to the continuation. After this lovely morning, it was time for our walk - I got the kids out yesterday in our awesome stroller so we were determined to do it again today before we get snowed in again. We made it about 4 minutes away from the house when my cell rang and it was Sadie's doc's office saying that the finger was indeed fractured and I needed to bring her in asap to get a splint. FML (pardon my french). We turned around and headed home. Poor tired Ryan fell victim to the jiggling of the stroller but got short changed on his nap that he desperately needed. I convinced Sadie that a splint is no big deal and that the rule about getting a splint means that you get to watch phone videos while you're getting it and ice cream afterwards (we ended up swapping ice cream for a dress up magnet dolly in the end). She was pretty awesome, especially when after the doctor was finished explaining to the nurse about where to tape the splint, she said something about going to get a new smaller splint from a pharmacy. Sadie yelled, " No! I'm using Hello Kitty Bandaids!" We all had a good chuckle. Anyway, she's settled in fine with the splint - already using her hand more. It'll stay on for 7 days (but can come off for baths and re-taping).
Speaking of re-taping, we've become experts on medical tape in this house because of the constant battle to get Ryan's tube and prongs to stay put. Sadie told me today that when we do his tapes it makes her be bad. It is a very unpleasant process to do the tapes. We have to swaddle him tight and the 'assistant' has to hold his head still while I do the re-taping. He SCREAMS constantly. Like the very loud, very pissed off scream. Usually Sadie is playing in her room and was never too effected by it. The other day she came in and started touching the prepared tapes and then yelled something like, "BE QUIET." I explained that it doesn't hurt him to have the tapes done, he just doesn't like to be held down. It's better to have him cry a little so that his tapes are good rather than letting his tapes be loose and have his tubes come off. She seemed to get it and agreed that next time we do the tapes, she'll watch a video in my room on the computer. Oh this little 3 year old has seen more than her fair share of drama, poor thing.
So ya, that ice I mentioned the other day has a few more cracks in it today... luckily it's a cold night so it'll stay in tact for another day or so.....
 |
| Lets end on a cute note. And show off our wicked tape job. |
Tuesday, February 19, 2013
Feb. 19
Family day weekend ended with an unexpected and unwelcome twist. Ryan was enjoying his formula in his sippy cup when he took a 'too big' gulp. He started to gag (like a cat having a hair ball). We knew what was coming so we got the cloth ready to catch.... unfortunately, his feeding tube came up. AGAIN. Last time, we blamed the thicker banana 'smoothie' he was having, this time it was straight formula. It's funny how calm we were. My mom had no idea what had happened. I pulled the rest of the tube out of his nose, continued to let him have more of his formula because I knew it'd be a long time until he'd be able to eat again. We ate supper, packed up everything and headed down to Sick Kids, which is the plan for days when our 'regular' clinic isn't open. Last time we went down to get the tube reinserted, we were there and back in 3 hours... piece of cake, right? Wrong. It was PACKED. Because it was a long weekend, all the walk-in clinics were closed so everybody and their sick brother were at Sick Kids. I tried to play all my cards (baby on oxygen, hasn't eaten since 5 pm, chronic lung disease...) Usually at first mention of any one of these things, we get put right into a room. Not this time. Even writing about this is making me feel anxious and tense. If you know much about how we are with Ryan, you'll know that we do not wait in waiting rooms whenever possible. When we arrive at appointments, we always ask to be put into a room to wait. Not only to save him from exposure, but also to allow him to get out of his car seat, which he really shouldn't sit in for more than an hour at a time. Sick Kids is usually quite accommodating when they can be. So, a nice nurse finally took us into the triage room. I had come prepared with pre-cut tapes and a spare tube. Usually the nurses there are aces at getting them in the first time. Usually. We got bumped into the 'resus' room. The nurse said we'd have a roommate. I immediately hesitated and asked to ensure that the roommate wasn't having respiratory issues (writing this now, I should've known that a kid in the resus room would most definitely be having respiratory issues). She assured us it was 'ok' and that we'll be in and out. "the room is big, so you'll be fine." I have a lot of faith in Sick Kids, so in we went. I got all the supplies ready for the nurse. She attempted the insertion but we didn't get the proper checks afterwards so we pulled it out. Meanwhile, a resident doctor came in to talk to the roommate's parents. We obviously overheard them because all that was between us was a curtain. We heard the words, "there is a bit of pneumonia." I'm not sure how loud my voice was, or how many swear words I used, but basically it was probably something along the lines of, "why the #*@* would they put us in a room with a kid with pneumonia!!?" We grabbed our nurse (who, incidentally had been working with this kid as well as doing Ryan's insertion) and asked to be moved immediately. We were shuffled over to another room... maybe a trauma room that was luckily empty except for someone working on a computer who kept coughing and sneezing. I believe this is where I lost it. More. For the life of me I cannot understand why on earth they would put someone like Ryan in jeopardy like this. In their defense, the nurse was trying to get us out in a timely manner... however, at the risk of pneumonia and who knows what else... I don't know if the 'risk' was worth it**. Word got out that I was 'very' upset, so the charge nurse and the staff physician came in to apologize and tell me that next time I should tell the person that we are always careful to protect Ryan from respiratory illness. Really??!! I DID!!! They were nice and apologetic, and admitted that it was a mistake that hopefully will not be made again. Now we watch and wait to see if Ryan starts showing any signs of infection. As a side note, the tube insertion was no walk in the park either... poor guy. I can't even imagine how it makes him feel.
**Explanation: children with chronic lung disease are very prone to severe infection (specifically for the first 2 years of life). A stuffy nose to someone can easily turn into pneumonia or worse for these guys... hence our neurotic behaviour around germ.**
In hindsight, I wonder if there is anything we could've done differently. We could have waited to get the tube done in the morning, but that would mean that most likely Ryan wouldn't eat anything for more than 12 hours, which would run the risk of dehydration. We'd have to drive downtown in rush hour to potentially a much busier ER. We could have gone to North York to get it done, but since we haven't been there yet for a tube insertion we figured we'd play it safe with Sick Kids who were totally awesome last time. I know that 'these things happen' in hospitals, but it doesn't make it any easier when 'these things happen' to your kid. We work tirelessly to protect him and it's working. To have something as avoidable as this potentially cause a major setback was just too much to think about. This incident got me thinking a lot about how I handle situations like this, and yes, there is room for improvement but I don't know how to improve it. I feel like I'm on very thin ice and with all these bumps/incidents/events that keep happening, I don't know when the ice is going to break. The reason that it hasn't yet is because of all the people who keep everything else together while I focus on keeping myself together. This happened when the house flooded. My mom and Martine just cleaned and cleaned while I took care of the kids and tried to not explode. Last night at Sick Kids, Scott just tried to stay calm. All the literature says that I should be taking time to myself - meditating, doing yoga, going for walks, making plans with friends. I invite these authors over (if they're healthy) to spend a day in our house and see how easy those things are to do. I'm lucky - I do get to the gym a couple times a week, and I do get time to myself when I'm pumping or the kids are asleep - but I still don't feel calm or relaxed ever. One of the charge nurses told me about her niece who was born at 23 weeks and is now13 years old. She said that her sister 'took a breath' when the daughter turned 2. So, August 13, 2014 (Ryan's 2 year corrected birthday) is set as my day to breathe. Until then I'll just try to keep my ice in tact.
**Explanation: children with chronic lung disease are very prone to severe infection (specifically for the first 2 years of life). A stuffy nose to someone can easily turn into pneumonia or worse for these guys... hence our neurotic behaviour around germ.**
In hindsight, I wonder if there is anything we could've done differently. We could have waited to get the tube done in the morning, but that would mean that most likely Ryan wouldn't eat anything for more than 12 hours, which would run the risk of dehydration. We'd have to drive downtown in rush hour to potentially a much busier ER. We could have gone to North York to get it done, but since we haven't been there yet for a tube insertion we figured we'd play it safe with Sick Kids who were totally awesome last time. I know that 'these things happen' in hospitals, but it doesn't make it any easier when 'these things happen' to your kid. We work tirelessly to protect him and it's working. To have something as avoidable as this potentially cause a major setback was just too much to think about. This incident got me thinking a lot about how I handle situations like this, and yes, there is room for improvement but I don't know how to improve it. I feel like I'm on very thin ice and with all these bumps/incidents/events that keep happening, I don't know when the ice is going to break. The reason that it hasn't yet is because of all the people who keep everything else together while I focus on keeping myself together. This happened when the house flooded. My mom and Martine just cleaned and cleaned while I took care of the kids and tried to not explode. Last night at Sick Kids, Scott just tried to stay calm. All the literature says that I should be taking time to myself - meditating, doing yoga, going for walks, making plans with friends. I invite these authors over (if they're healthy) to spend a day in our house and see how easy those things are to do. I'm lucky - I do get to the gym a couple times a week, and I do get time to myself when I'm pumping or the kids are asleep - but I still don't feel calm or relaxed ever. One of the charge nurses told me about her niece who was born at 23 weeks and is now13 years old. She said that her sister 'took a breath' when the daughter turned 2. So, August 13, 2014 (Ryan's 2 year corrected birthday) is set as my day to breathe. Until then I'll just try to keep my ice in tact.
Wednesday, February 13, 2013
Feb.13 - 6 months corrected
Seems like an appropriate day for a post. Sadly, no picture today... busy days lately. Ryan reached a significant milestone yesterday. He rolled from his tummy to his back! His nurse was so excited that she sent me a text while I was at gymnastics with Sadie. I didn't see him do it, but he did it 3 times yesterday so it may not be a fluke. I've been feeling like he wasn't progressing with tummy time, but in typical Ryan form, he gets me worried then pulls through.
Yes - you read it correctly - I took Sadie to gymnastics. I was NERVOUS! She hasn't been around big groups of kids since last June when she finished her gymnastics classes. She enjoyed the class, but said she'd like to try ballet next time. I enjoyed watching her, but can't say I felt too comfortable sitting around the viewing area with the other moms. I felt out of place and anxious. I literally did not say 2 words to anyone. I felt like the shy kid I was in highschool. They were talking about their houses, kids, traveling, 'nanny issues', and oggling (is that a word!?) over a mom with a brand new baby (a gorgeous mom of 4 yes 4 gorgeous children). Yep. That's me over in the corner listening to every word, but not participating in the conversation. All these moms knew eachother, so that was one of the main reasons I didn't pipe up, but at the same time, in the back of my mind I didn't want to get into the 'small talk' of what's going on in our lives. As soon as I say our son was born at 24 weeks, it's the same questions, followed by an "I know somebody who had their baby early and he was fine." Usually the "I know someone" stories are about someone born at 30+ weeks. One day I'll be more comfortable with it, but for now I don't mind living in my silent bubble and surrounding myself with people who 'get it'.
Another update is that I called Sick Kids to check how the process is going for Ryan's g-tube and apparently he has been triaged, and he's the next outpatient on the list to receive a date. I don't know when we'll get the date, but at least it's good to know he is next. In the back of my mind I hope he 'pulls a Ryan' and starts taking his bottles well enough so that he doesn't need the surgery afterall... a girl can dream right.
I'm starting back with my 'sweat therapy'... aka my gym membership. I could tell my body and brain was missing my regular workouts, especially after this week when Ryan decided to go on a bit of a sleep strike (possibly a growth spurt, teething,... um being a baby...). Had a good interval training class tonight, which I hope can become a regular occurrence.
One 'problem' we've been having lately is that Ryan laughs too much... odd problem to have, I know. But when he's having a tube feed, we're often face to face with him, and he needs a lot of entertainment to pass the time (a feed takes almost an hour). So, we start by making him smile, however, apparently we are all quite funny looking and he starts laughing. The problem is that laughing makes him puke. Puking is bad because it can cause fluid to get into his lungs. Our issue now, is to entertain without allowing him to laugh too much - up to half an hour after his feed. How fair is that. His laugh is awesome btw.
One final tidbit is about our drive to North York today. A nurse comes with me and she sits with Ryan in the back seat to keep an eye on his sats and tubes, and to keep him entertained. His oxygen alarm kept ringing off so while I was driving I was telling her things to look at (his tubing, the wires, his toe where the sensor is, and to listen to see if the tank was leaking). She looked at all the stuff but he was still alarming. I pulled over to take a look myself and found that the tank wasn't even on. Big fat oops for both of us. The best part of the story is that we were driving for a good 5-7 minutes and even though the alarm was sounding, his numbers weren't terribly low, and he was still pink and happy. That's a good sign that the ol' lungs are improving.
That's all for now. Upcoming 'events' include a possible outing to a friend's house for dinner on Saturday, and I might do a training session at Mt. Sinai to become a parent buddy (to help other families from the NICU).
Happy Valentine's Day tomorrow!
Yes - you read it correctly - I took Sadie to gymnastics. I was NERVOUS! She hasn't been around big groups of kids since last June when she finished her gymnastics classes. She enjoyed the class, but said she'd like to try ballet next time. I enjoyed watching her, but can't say I felt too comfortable sitting around the viewing area with the other moms. I felt out of place and anxious. I literally did not say 2 words to anyone. I felt like the shy kid I was in highschool. They were talking about their houses, kids, traveling, 'nanny issues', and oggling (is that a word!?) over a mom with a brand new baby (a gorgeous mom of 4 yes 4 gorgeous children). Yep. That's me over in the corner listening to every word, but not participating in the conversation. All these moms knew eachother, so that was one of the main reasons I didn't pipe up, but at the same time, in the back of my mind I didn't want to get into the 'small talk' of what's going on in our lives. As soon as I say our son was born at 24 weeks, it's the same questions, followed by an "I know somebody who had their baby early and he was fine." Usually the "I know someone" stories are about someone born at 30+ weeks. One day I'll be more comfortable with it, but for now I don't mind living in my silent bubble and surrounding myself with people who 'get it'.
Another update is that I called Sick Kids to check how the process is going for Ryan's g-tube and apparently he has been triaged, and he's the next outpatient on the list to receive a date. I don't know when we'll get the date, but at least it's good to know he is next. In the back of my mind I hope he 'pulls a Ryan' and starts taking his bottles well enough so that he doesn't need the surgery afterall... a girl can dream right.
I'm starting back with my 'sweat therapy'... aka my gym membership. I could tell my body and brain was missing my regular workouts, especially after this week when Ryan decided to go on a bit of a sleep strike (possibly a growth spurt, teething,... um being a baby...). Had a good interval training class tonight, which I hope can become a regular occurrence.
One 'problem' we've been having lately is that Ryan laughs too much... odd problem to have, I know. But when he's having a tube feed, we're often face to face with him, and he needs a lot of entertainment to pass the time (a feed takes almost an hour). So, we start by making him smile, however, apparently we are all quite funny looking and he starts laughing. The problem is that laughing makes him puke. Puking is bad because it can cause fluid to get into his lungs. Our issue now, is to entertain without allowing him to laugh too much - up to half an hour after his feed. How fair is that. His laugh is awesome btw.
One final tidbit is about our drive to North York today. A nurse comes with me and she sits with Ryan in the back seat to keep an eye on his sats and tubes, and to keep him entertained. His oxygen alarm kept ringing off so while I was driving I was telling her things to look at (his tubing, the wires, his toe where the sensor is, and to listen to see if the tank was leaking). She looked at all the stuff but he was still alarming. I pulled over to take a look myself and found that the tank wasn't even on. Big fat oops for both of us. The best part of the story is that we were driving for a good 5-7 minutes and even though the alarm was sounding, his numbers weren't terribly low, and he was still pink and happy. That's a good sign that the ol' lungs are improving.
That's all for now. Upcoming 'events' include a possible outing to a friend's house for dinner on Saturday, and I might do a training session at Mt. Sinai to become a parent buddy (to help other families from the NICU).
Happy Valentine's Day tomorrow!
Sunday, February 10, 2013
Feb. 10 - Happy Bubbles
I saw that my last post was Feb. 1, and it was a rather optimistic, happy post. Well, 2 hours after I hit 'publish', Ryan pulled his feeding tube out. That was Friday night, so all our regular 'clinics' to go get the tube replaced would be closed for the weekend. That meant an early morning trip to Sick Kids Emerge. Sadie and I had planned on going to visit my big sis in Guelph... didn't happen. Luckily, not many people go to Sick Kids at 8 am on a Saturday morning, and we were there and back in 3 hours, which NEVER happens, not even with a scheduled appointment. The moral of the story?? It's always the same old chiches... expect the unexpected, life is a roller coaster, when there's an up there's a down... Which is actually a good lead up to my next point.
It was my "birthday week" as my family affectionately refers to it, so there were some 'loosely made' plans. Our family get together on Sunday was actually quite successful as far as having 'company' (my sister and parents). Kids were happy and everyone eventually got to eat. Tuesday Scott and I had a lunch date. Wednesday (my real birthday) was actually great (minus some news from our ENT appointment which I will get to shortly). I made it to spin class, ran out quickly to one of my favourite stores in Aurora, had a pancake lunch with mom, Martine, and Sadie, then headed down to Sick Kids for ENT. The appointment was at 4 pm, which would have put us smack dab in the middle of rush hour to get home so we made our first 'dinner date' with Ryan in tow. We went over to see our old NICU nurse/Ryan's fariy godmother at her new condo. It was the perfect place to go with him because she knows him well and just 'gets it' and also because by the time we were done dinner, there was no traffic and we flew home and he went straight to bed.
I guess I should write about our ENT appointment because one day I'll look back and remember that it was my 34th birthday when the doctor told me that Ryan will most likely need hearing aids and possibly cochlear implants. His hearing has been a big question mark since we were in the hospital. I've written a bit about it, but not much a) because it's stressful and b) because there are no concrete answers as to what is going on. There was talk of a diagnosis of auditory neuropathy, which I think I explained in a previous post. The ENT doctor seems to think that it might not be the case. He 'thinks' Ryan might just have a more 'classic' hearing loss. The 'good' thing about that is - with classic hearing loss, it can usually be corrected with hearing aids or cochlear implants, whereas if it was ANSD, hearing aids don't often work. So - right now, we are to continue with our AV therapy (which is actually working) - If Ryan hears a sound, he is starting to look toward it. We will have regular hearing tests that will look for behavioural responses (i.e. him looking toward a sound). Once he reliably cooperates on these kinds of tests, the audiologist will be able to narrow down which sounds he can hear, and at what level, so that she can try out a hearing aid.
I took this news surprisingly well. It hurts my heart to know that this will cause him a lot of frustration throughout his life, but in a way, I'm glad that there is something that can be done to help him. The thing that keeps me going is the fact that he is still smiling and laughing - that means he's still 'enjoying' life. Back in the hospital when we were debating on continuing treatment or not, one of our main concerns was 'will he be able to experience happiness and enjoyment'. So far so good. Unfortunately it's hard to capture the moments on camera because, as with most babies I've met - as soon as they see the camera they stop doing what they're doing and stare blankly at it.
This post is long, but it's been 10 days, so too bad ;-). We've had some ups and downs with our 'nursing staff' this week - I won't get into the nitty gritty because it's not worth the time - but the bottom line is that good homecare nursing is hard to find. I've found myself in a manager's position. I am training and managing the nurses more than the company they work for. There are 4, sometimes 5 nurses coming to care for Ryan -myself, Martine, and Scott as well. That's a lot of cooks in the kitchen. I'm working on finding ways to effectively communicate with everyone, and am trying to learn to be 'boss' and 'mom'. It's HARD! Especially when things happen after 3 hrs of sleep... there's no 'boss', just a really tired and grumpy mom. I feel I shouldn't have to spend so much time dealing with the nursing stuff issues - and I've made that point clear to the supervisor, so hopefully things will change soon. My efforts need to be focused on the kids, the house, and occasionally myself (gasp!). All negativity aside, we are SUPER FORTUNATE to have help provided by CCAC because without it I don't even want to think about how we'd be dealing... I should just shut my mouth right now.
The title of my post is 'happy bubbles' because every time I am happy about something, the my mind always starts thinking about how the happy bubble is going to burst. Often it's in the form of a tube being pulled, bad weather causing a get together to be cancelled, illness, nurses not showing up, etc. I'm not one of those glass half full people and I probably never will be, but our journey with Ryan is teaching me more of how to roll with the punches. I still revert to my cry about it- sulk for a while - then move on pattern, but I find that I'm doing it a little less *stop laughing mom* and am (fingers crossed) starting slowly to develop a bit more of a roll-with it attitude. My mom tries to remind me that whatever will be will be.... sometimes it's easier said than done, but at least we try.
It was my "birthday week" as my family affectionately refers to it, so there were some 'loosely made' plans. Our family get together on Sunday was actually quite successful as far as having 'company' (my sister and parents). Kids were happy and everyone eventually got to eat. Tuesday Scott and I had a lunch date. Wednesday (my real birthday) was actually great (minus some news from our ENT appointment which I will get to shortly). I made it to spin class, ran out quickly to one of my favourite stores in Aurora, had a pancake lunch with mom, Martine, and Sadie, then headed down to Sick Kids for ENT. The appointment was at 4 pm, which would have put us smack dab in the middle of rush hour to get home so we made our first 'dinner date' with Ryan in tow. We went over to see our old NICU nurse/Ryan's fariy godmother at her new condo. It was the perfect place to go with him because she knows him well and just 'gets it' and also because by the time we were done dinner, there was no traffic and we flew home and he went straight to bed.
I guess I should write about our ENT appointment because one day I'll look back and remember that it was my 34th birthday when the doctor told me that Ryan will most likely need hearing aids and possibly cochlear implants. His hearing has been a big question mark since we were in the hospital. I've written a bit about it, but not much a) because it's stressful and b) because there are no concrete answers as to what is going on. There was talk of a diagnosis of auditory neuropathy, which I think I explained in a previous post. The ENT doctor seems to think that it might not be the case. He 'thinks' Ryan might just have a more 'classic' hearing loss. The 'good' thing about that is - with classic hearing loss, it can usually be corrected with hearing aids or cochlear implants, whereas if it was ANSD, hearing aids don't often work. So - right now, we are to continue with our AV therapy (which is actually working) - If Ryan hears a sound, he is starting to look toward it. We will have regular hearing tests that will look for behavioural responses (i.e. him looking toward a sound). Once he reliably cooperates on these kinds of tests, the audiologist will be able to narrow down which sounds he can hear, and at what level, so that she can try out a hearing aid.
I took this news surprisingly well. It hurts my heart to know that this will cause him a lot of frustration throughout his life, but in a way, I'm glad that there is something that can be done to help him. The thing that keeps me going is the fact that he is still smiling and laughing - that means he's still 'enjoying' life. Back in the hospital when we were debating on continuing treatment or not, one of our main concerns was 'will he be able to experience happiness and enjoyment'. So far so good. Unfortunately it's hard to capture the moments on camera because, as with most babies I've met - as soon as they see the camera they stop doing what they're doing and stare blankly at it.
This post is long, but it's been 10 days, so too bad ;-). We've had some ups and downs with our 'nursing staff' this week - I won't get into the nitty gritty because it's not worth the time - but the bottom line is that good homecare nursing is hard to find. I've found myself in a manager's position. I am training and managing the nurses more than the company they work for. There are 4, sometimes 5 nurses coming to care for Ryan -myself, Martine, and Scott as well. That's a lot of cooks in the kitchen. I'm working on finding ways to effectively communicate with everyone, and am trying to learn to be 'boss' and 'mom'. It's HARD! Especially when things happen after 3 hrs of sleep... there's no 'boss', just a really tired and grumpy mom. I feel I shouldn't have to spend so much time dealing with the nursing stuff issues - and I've made that point clear to the supervisor, so hopefully things will change soon. My efforts need to be focused on the kids, the house, and occasionally myself (gasp!). All negativity aside, we are SUPER FORTUNATE to have help provided by CCAC because without it I don't even want to think about how we'd be dealing... I should just shut my mouth right now.
The title of my post is 'happy bubbles' because every time I am happy about something, the my mind always starts thinking about how the happy bubble is going to burst. Often it's in the form of a tube being pulled, bad weather causing a get together to be cancelled, illness, nurses not showing up, etc. I'm not one of those glass half full people and I probably never will be, but our journey with Ryan is teaching me more of how to roll with the punches. I still revert to my cry about it- sulk for a while - then move on pattern, but I find that I'm doing it a little less *stop laughing mom* and am (fingers crossed) starting slowly to develop a bit more of a roll-with it attitude. My mom tries to remind me that whatever will be will be.... sometimes it's easier said than done, but at least we try.
Friday, February 1, 2013
Ready to Roll
Thanks to a kind-hearted and VERY generous *anonymous* donor... We are....
mobile!! After tonnes of researching what will suit our needs, I picked up this bad boy today. My vision: Sadie can have 'quiet time' in the stroller while Ryan can have a nap, she can walk when she wants and rest when she wants, we can cruise the neighbourhood, everyone gets fresh air, we have 'family time' together, and we remain germ-free. I hope that a) mother nature cooperates with my vision, and b) everyone stays healthy in order for this dream to become reality. Sadie was super excited about it, and as you can see by Ryan's face, he's cool with it too.
In other news - we had Ryan's hearing tested again, and unfortunately it yielded the same result as the first time. I still have a hard time understanding what it all means, but I will try to explain. They put little earphones in Ryan's ears while he was sleeping. They send sounds through the earphones and look for brain activity when the sound is produced. Both times he has had this test, his right ear has shown no activity at the maximum setting of the machine. The left ear showed a little activity, but not as much. So my first thought was that it means Ryan can't hear. Fortunately, that's not the case. It means "nobody knows". It points to the diagnosis of Auditory Neuropathy. Some kids with this disorder have perfect hearing, but their brainwaves are interrupted by (something). When we answered the questionnaire about his response to sounds, his curve was plotted in the low-normal range. We think he can hear something - we just don't know what. That's why, every week we go to AV therapy. Auditory Verbal therapy. Basically, we're training him to look at an object that produces sounds. With preemie babies like Ryan they often hear so many sounds in the NICU (ventilator, alarms, voices, etc.) that they never have a chance to learn to focus on specific sounds. Now that he's home, he needs to start learning to do so. Next steps? Continue with AV therapy, continue to 'work' on things at home, and have monthly tests to see if he is making any progress.
I've been actually feeling quite lucky lately, despite the disappointing hearing news and a few other usual medical frustrations. Firstly because of the 'gift' we received this week, but also I feel lucky that we have kept Ryan healthy for so long, and that he is actually making progress in terms of his oxygen requirement going down. I feel good about our decision to not send Sadie to JK. We will find her some programs and (hopefully) lots of playdates with our healthy friends. Whenever I read someone's post about stomach flu, I get a pit in my stomach worrying about what would happen if it made its way into our house - so I feel lucky that *so far* it hasn't... Hopefully I didn't just jinx myself! It's also my 'birthday week' as my family calls it. It will be nice to have some family and friend time - although I haven't really thought about anything for myself which is a big change - usually there's a trip out for a manicure, or new clothes, but this year I'd rather the money be spent on our extra help. I am oh so thankful for our nanny who helps us get through every day. The kids love her too.
Thanks to everyone who continues to follow along with us - here are some bonus pics.
In other news - we had Ryan's hearing tested again, and unfortunately it yielded the same result as the first time. I still have a hard time understanding what it all means, but I will try to explain. They put little earphones in Ryan's ears while he was sleeping. They send sounds through the earphones and look for brain activity when the sound is produced. Both times he has had this test, his right ear has shown no activity at the maximum setting of the machine. The left ear showed a little activity, but not as much. So my first thought was that it means Ryan can't hear. Fortunately, that's not the case. It means "nobody knows". It points to the diagnosis of Auditory Neuropathy. Some kids with this disorder have perfect hearing, but their brainwaves are interrupted by (something). When we answered the questionnaire about his response to sounds, his curve was plotted in the low-normal range. We think he can hear something - we just don't know what. That's why, every week we go to AV therapy. Auditory Verbal therapy. Basically, we're training him to look at an object that produces sounds. With preemie babies like Ryan they often hear so many sounds in the NICU (ventilator, alarms, voices, etc.) that they never have a chance to learn to focus on specific sounds. Now that he's home, he needs to start learning to do so. Next steps? Continue with AV therapy, continue to 'work' on things at home, and have monthly tests to see if he is making any progress.
I've been actually feeling quite lucky lately, despite the disappointing hearing news and a few other usual medical frustrations. Firstly because of the 'gift' we received this week, but also I feel lucky that we have kept Ryan healthy for so long, and that he is actually making progress in terms of his oxygen requirement going down. I feel good about our decision to not send Sadie to JK. We will find her some programs and (hopefully) lots of playdates with our healthy friends. Whenever I read someone's post about stomach flu, I get a pit in my stomach worrying about what would happen if it made its way into our house - so I feel lucky that *so far* it hasn't... Hopefully I didn't just jinx myself! It's also my 'birthday week' as my family calls it. It will be nice to have some family and friend time - although I haven't really thought about anything for myself which is a big change - usually there's a trip out for a manicure, or new clothes, but this year I'd rather the money be spent on our extra help. I am oh so thankful for our nanny who helps us get through every day. The kids love her too.
Thanks to everyone who continues to follow along with us - here are some bonus pics.
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| Big blue eyes and spiky hair |
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| Sitting! (for about 2 seconds!... but still!) |
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| This is what happens when I'm alone for an hour with both kids. Testing out the weight limits of an Ikea crib. |
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