So it seems that Riley, cute as he may be, will continue with his one step forward, two steps back...at least for a little while.
At his urology follow up at Sick Kids, they ran a new ultrasound on him with respect to his kidney reflux. That is fine. It is being well managed with the medication that he is on, so they are not concerned. We go for another follow up in 6 months, but for the moment, they are positive that he can stay on the medication until he is around potty training age, and will be fine. HOWEVER (there is always a however, it seems), during the course of the ultrasound, they discovered that he has kidney stones. Kidney stones! In a 10 month (or 7 month, depending on if you want to use corrected age) child!
They are guessing that he has developed renal stone disease, which I was diagnosed with about 4 years ago. They aren't sure how, though, since his body *technically* shouldn't have excess minerals and vitamins needed to create a single stone, let alone the many of them that they discovered.
So, in the course of this, they are hoping to use me as a guinea pig. I go for a follow up ultrasound on Wednesday to see if there are any "live" stones currently in my kidneys (which there should be, since there almost always is) and, from what was guessed by my family doctor, they will likely do a retrieval of one of my stones to find out the exact breakdown and hopefully be able to give both Riley and I something to break them down without having to wait for them to pass.
Fun, fun, fun.
At least I have my vacation to look forward to before having to deal with all this ickyness.
And I finally went and got myself a set of the puzzle boards from the dollar store across from us. I think I mentioned this before, but the place across from us has the 10 packs of the foam puzzle boards for $3-4 dollars. Now, I bought a set for Riley to play on, and just bought another set for myself, since they would be perfect for blocking (in fact, they sell in most places for $20-$25 as "blocking mats"). Yep, I'll take em for $3, thank you very much. And hope the cats will leave the blocking items alone.
ttfn
k
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Thursday, February 11, 2010
Wednesday, August 12, 2009
Oh Whoa
So, this morning we have our first of many specialist follow ups down at Sick Kids hospital. Fun fun fun. And what makes it more fun, you may be asking yourself, since the drive down to Toronto through horrible traffic for someone who hates downtown driving might not be enough for you? Well, there is the fact that right on our referral form it clearly states "please be prepared to wait at least 2 hours". Um? What? Why not just book me an appointment 2 hours later than the one that I have been given, and actually, I don't know, let me in at that time?
I suppose that would be too easy.
Anywho, we are off to the immunology clinic today. They want to check him out before we meet with the surgeon next week to make sure that the urachal sinus hasn't caused him any additional problems or been the cause of any additional problems. So I suppose it is a necessary evil.
This month is just going to be one of too much. I have that appointment today; Ammy's 6th birthday on Friday (6...when the hell did that happen???); her birthday party on Saturday; Monday is our meeting with the reception hall director and cook; Tuesday Tony is heading down to Buffalo for a prize pack thing that he won which includes him going to the Bills training camp for the day while I take Riley to his surgery clinic appointment; the following Monday is Ammy's annual physical with Riley's pediatric follow up on the Tuesday; that Friday the out-laws fly in; and, of course, the wedding on Saturday. Yeah, it's going to be a little busy.
There are still a thousand and one things that need to be done for the wedding which is, as you can see from the countdown, 16 days away...and I have no clue when I will be able to get to them all. I finally finished the favors, but still need the tags for them. I also still need to get the centrepieces and all the flowers. :S I think I should make a list.
Anywho, off to my waiting period. :)
ttfn
k.
I suppose that would be too easy.
Anywho, we are off to the immunology clinic today. They want to check him out before we meet with the surgeon next week to make sure that the urachal sinus hasn't caused him any additional problems or been the cause of any additional problems. So I suppose it is a necessary evil.
This month is just going to be one of too much. I have that appointment today; Ammy's 6th birthday on Friday (6...when the hell did that happen???); her birthday party on Saturday; Monday is our meeting with the reception hall director and cook; Tuesday Tony is heading down to Buffalo for a prize pack thing that he won which includes him going to the Bills training camp for the day while I take Riley to his surgery clinic appointment; the following Monday is Ammy's annual physical with Riley's pediatric follow up on the Tuesday; that Friday the out-laws fly in; and, of course, the wedding on Saturday. Yeah, it's going to be a little busy.
There are still a thousand and one things that need to be done for the wedding which is, as you can see from the countdown, 16 days away...and I have no clue when I will be able to get to them all. I finally finished the favors, but still need the tags for them. I also still need to get the centrepieces and all the flowers. :S I think I should make a list.
Anywho, off to my waiting period. :)
ttfn
k.
Thursday, July 9, 2009
Amazing What Occurs to You When You Can Actually Relax
For starters, just because, umlaut, umlaut, umlaut! (Sorry, this word got stuck in my head earlier today for no apparent reason. Just thought I would share. And for those of you who don't know what that is, check here.)
Second, now that the stress of when I will be getting my boy home is gone, I feel much relieved. I mean, I know without a shadow of a doubt that I was barely keeping it together there for a while. I don't shirk away from that one. But I was stressed. And come on...seriously, how many people do you know could sanely handle 14.5 weeks of having a child they couldn't hold when they wanted to, change when he needed it, feed on demand, smell and sniff and play and double check that there are 10 little fingers and 10 little toes? Right. There is your slice of perception for the day.
Our first cuddles with great-nanny (who, I might add, was tickled pink with getting to see him...we wouldn't allow people to force the game of "you come down to toronto at such and such a time so I can see the baby"):
And on that note, if we skip back 14.5 weeks:
This was my first glimpse of Riley (after the initial red, screaming thing that just fought his way into the world before being whisked away to be saran wrapped). Kinda terrifying. Kinda completely terrifying.
Then we were blue...and I mean that quite literally.
One of the first holds...
my boob is bigger than his head...and pretty much all of him (yes, this will scar him when he is older).
Finally looking human...with the exception of that horrible machine which I hope to never have to name again:
Rolling along nicely...
Behind bars:
Finally off the obnoxious machine:
Look...even he is cheering.
Chilling in our bouncy chair (this was on his due date...June 28, 2009):
And now...and 98 days old...
For those of you doing the math, Riley will be coming home on his 101 day of post-uterus living. :)
I'm heading in to the hospital today to give him some loving and cuddles, a bath, and to pick up the rest of his swag that is there (the bouncy chair, the clothes, the bathtub).
A part of me is still thinking this can't be real yet. I feel like a kid waiting for Christmas.
ttfn
k
Second, now that the stress of when I will be getting my boy home is gone, I feel much relieved. I mean, I know without a shadow of a doubt that I was barely keeping it together there for a while. I don't shirk away from that one. But I was stressed. And come on...seriously, how many people do you know could sanely handle 14.5 weeks of having a child they couldn't hold when they wanted to, change when he needed it, feed on demand, smell and sniff and play and double check that there are 10 little fingers and 10 little toes? Right. There is your slice of perception for the day.
Our first cuddles with great-nanny (who, I might add, was tickled pink with getting to see him...we wouldn't allow people to force the game of "you come down to toronto at such and such a time so I can see the baby"):
And on that note, if we skip back 14.5 weeks:
This was my first glimpse of Riley (after the initial red, screaming thing that just fought his way into the world before being whisked away to be saran wrapped). Kinda terrifying. Kinda completely terrifying.
Then we were blue...and I mean that quite literally.
One of the first holds...
my boob is bigger than his head...and pretty much all of him (yes, this will scar him when he is older).
Finally looking human...with the exception of that horrible machine which I hope to never have to name again:
Rolling along nicely...
Behind bars:
Finally off the obnoxious machine:
Look...even he is cheering.
Chilling in our bouncy chair (this was on his due date...June 28, 2009):
And now...and 98 days old...
For those of you doing the math, Riley will be coming home on his 101 day of post-uterus living. :)
I'm heading in to the hospital today to give him some loving and cuddles, a bath, and to pick up the rest of his swag that is there (the bouncy chair, the clothes, the bathtub).
A part of me is still thinking this can't be real yet. I feel like a kid waiting for Christmas.
ttfn
k
Wednesday, June 24, 2009
Please Sir, I Want Off This Ride
Well, it has been a rough ride, and still it is going. :( I hate that. Most of the people who we started our NICU journey with are home now. A few who we knew that had preterms after us are prepping to go home (the last of whom will be home this Saturday). We, however, can't even get moved closer to home.
Many of the friends we made while at the NICU have gone home now. The last of them left yesterday. Most of them were born after Riley (both gestational and actual). And still we are looking at July or August to get him home. And, as they have already discussed him coming home on oxygen, that is likely going to be the case. I hate this. I really and truly hate this. It is beyond frustrating and I hate that I feel like some hormonally charged, angst ridden teenager. It has been 12 weeks. Our due date is Sunday. And still we do not have a clue when our son is coming home.
Riley's breathing issues are getting better, slowly...very slowly. He is now down to low-flow 24/7. But that doesn't mean sweet jack at the moment, since he is still down in Toronto in the Annex, and still requiring enough oxygen that they haven't even bothered to discuss discharging him with us.
He makes these baby steps, that most of the preemies made weeks before him, gestationally speaking, and even though I get very excited about it because he is doing things better, or without intervention, to say the least, it is still a baby step that should have been taken weeks ago. Seriously, can I even call him a preemie anymore? I mean, he is past being "full term". He is over 8.5 lbs.
And I hate having to explain to people that yes, I did have a baby, but no, he is not home. Yes, I know I was due this month. No, I did not go full term. No, it is not a freaking vacation having a full term child who is not able to be home with us, so please stop making it seem like a dream that I don't have to wake up to screaming and dirty diapers several times over the course of the night.
I don't know when he started smiling. When did he learn this one? (I hate that I cannot just appreciate the smile, as my first thought AFTER "OMG, look how cute he is" was "I bet one of the nurses here was the first to see this miracle".)
I'm frustrated. Seriously frustrated. And, as before, there is not a damn thing that I can do about it. I can suck it up, drive down to Toronto to spend a few hours with him (because with another child at home, I don't have the luxury of spending 24/7 with him down there), come back home, clean and cook and go through the motions of everyday, ordinary life, pump, and cry myself to sleep; only to repeat it all over again the next day. Just like I have the last 85 days.
A part of me cannot stand going down to that hospital anymore. There is nothing wrong with the hospital itself. Don't think that in the least. This is not like my experience with Women's where I despised the place because of the people I was dealing with and the "care" I received. I just can't stand going down there anymore and knowing that I have to leave that part of my heart there every night. And as much as I don't want to do this anymore, as much as I cannot stand even thinking of heading down there again, I know that I will, because I cannot stand to not go down to see him and be with him.
This is the blanket I mentioned in my previous post. I am about 1/2 way done now, but have become so lackadaisical in continuing it, because it seems to have become a bit symbolic in the downward spiral pattern. That is how this is starting to feel...and that is, sadly, the only thing that I can think of whenever I pick it up. (Yes, great big fie on the friend who pointed that one out to me.)
I won't apologize for the sullenness of this post. (You read it and no one forced you.) I got set off this morning when I received yet another "they are sending my son home on Saturday...I am no where near ready. Are you guys?" text message. Yes, I am freaking ready. I am more than ready...yes, we have all our furniture and all the accoutrements that babies come with and likely will never need.
Bah!
Many of the friends we made while at the NICU have gone home now. The last of them left yesterday. Most of them were born after Riley (both gestational and actual). And still we are looking at July or August to get him home. And, as they have already discussed him coming home on oxygen, that is likely going to be the case. I hate this. I really and truly hate this. It is beyond frustrating and I hate that I feel like some hormonally charged, angst ridden teenager. It has been 12 weeks. Our due date is Sunday. And still we do not have a clue when our son is coming home.
Riley's breathing issues are getting better, slowly...very slowly. He is now down to low-flow 24/7. But that doesn't mean sweet jack at the moment, since he is still down in Toronto in the Annex, and still requiring enough oxygen that they haven't even bothered to discuss discharging him with us.
He makes these baby steps, that most of the preemies made weeks before him, gestationally speaking, and even though I get very excited about it because he is doing things better, or without intervention, to say the least, it is still a baby step that should have been taken weeks ago. Seriously, can I even call him a preemie anymore? I mean, he is past being "full term". He is over 8.5 lbs.
And I hate having to explain to people that yes, I did have a baby, but no, he is not home. Yes, I know I was due this month. No, I did not go full term. No, it is not a freaking vacation having a full term child who is not able to be home with us, so please stop making it seem like a dream that I don't have to wake up to screaming and dirty diapers several times over the course of the night.
I don't know when he started smiling. When did he learn this one? (I hate that I cannot just appreciate the smile, as my first thought AFTER "OMG, look how cute he is" was "I bet one of the nurses here was the first to see this miracle".)
I'm frustrated. Seriously frustrated. And, as before, there is not a damn thing that I can do about it. I can suck it up, drive down to Toronto to spend a few hours with him (because with another child at home, I don't have the luxury of spending 24/7 with him down there), come back home, clean and cook and go through the motions of everyday, ordinary life, pump, and cry myself to sleep; only to repeat it all over again the next day. Just like I have the last 85 days.
A part of me cannot stand going down to that hospital anymore. There is nothing wrong with the hospital itself. Don't think that in the least. This is not like my experience with Women's where I despised the place because of the people I was dealing with and the "care" I received. I just can't stand going down there anymore and knowing that I have to leave that part of my heart there every night. And as much as I don't want to do this anymore, as much as I cannot stand even thinking of heading down there again, I know that I will, because I cannot stand to not go down to see him and be with him.
This is the blanket I mentioned in my previous post. I am about 1/2 way done now, but have become so lackadaisical in continuing it, because it seems to have become a bit symbolic in the downward spiral pattern. That is how this is starting to feel...and that is, sadly, the only thing that I can think of whenever I pick it up. (Yes, great big fie on the friend who pointed that one out to me.)
I won't apologize for the sullenness of this post. (You read it and no one forced you.) I got set off this morning when I received yet another "they are sending my son home on Saturday...I am no where near ready. Are you guys?" text message. Yes, I am freaking ready. I am more than ready...yes, we have all our furniture and all the accoutrements that babies come with and likely will never need.
Bah!
Wednesday, May 6, 2009
Big Steps, Little Steps
Well, Riley is doing wonderful in the weight gaining department. As of last night, he was up to 3 pounds 14 ounces. His feeds are now up to 35 ml/3 hours. So very happy with that.
Since the infection that Riley went through a few weeks back, his breathing hasn't gotten back to what it was. It is a hard thing to see, especially since he was doing so well with that portion of his development during the first week and a bit of his life. But that damn infection just knocked him back so much. And I know that there is nothing that could have been done for it in any way, shape or form, but that doesn't mean that I don't hate it. Unfortunately, there is no one to rage and rant at for it. It is what it is. He went from being down to low flow to being back on bi-phasic CPAP (this means that it keeps his pressures, and in essence, if they aren't up to what the machine dictates, it gives him an extra breath). His pressures on the bi-phasic have been maxed (which is 10%/7%), and his oxygen has constantly been at 32% (room pressure, what we breath, is 21%). This has been a constant for the last 2 weeks. They have attempted to bring these numbers down, but to no avail. One nurse attempted to bring his oxygen down to 29%, to which he began spelling every 10 minutes. Not good. They had no choice but to bring it back up again. It is just hard, given that he has made virtually no progress as far as that is concerned.
Our primary nurse was in today, and I asked her about this - if the doctors would order another xray to see if there was something impeding his improvement of his lungs. We discussed that, and the fact that nothing has changed at all in the last 2 weeks, which was worrying me very much since the last change was just after the infection - dropping the oxygen from 42% to 32%. So she decided to dropped his pressures, despite the doctor having said that they didn't want to because of the number of spells he was having, purely because she thought he was ready, and she is the one that has to watch over him. He seemed to be doing good on the lower pressures. The numbers are still high (8%/5%), but at least we are finally seeing some movement.
We got the results of his second follow up ultrasound. He still has the grade two intercranial bleed, however it appears to be slightly smaller. They will do another follow up in two weeks time.
He also has his eye exam scheduled for Monday (it should have been last Monday, but someone forgot to put it on the list). His poor little eyes are all puffy still from the CPAP (the CPAP causes their eyes to swell, I would assume due to the pressure constantly being pushed into their sinus cavity along with the lungs). :(
They also requested a physio consult for him, which was performed today. Both Tony and I noticed a while ago that his left foot was sitting a little wonky. I know that it is normal for babies, especially preterms, to have much more flexibility in their extremities, but it has hit a point that it no longer seems normal, and with his spelling, they are not able to position him differently as often as they are with other babies, so he seems to have developed a preference to being frog legged. The physio therapist would like him moved more, even if it is just to his back with towels or blankets at his hips to bring them in a little more. She is also going to start coming in daily at 9 a.m. to work with his legs - doing stretching and such - so that they are no longer showing resistance to the movements.
In other news, it appears that I am a trend setter, but not necessarily in a good way. 4 weeks after I announced I was expecting at work, one of the girls who worked around the corner from my desk announced she was too...4 weeks from my due date (obvious to some, but not necessarily everyone). 2 weeks later, another one. Well, the one who was due 4 weeks after me gave birth last Friday to her son. He was 2 lbs 12 (great weight) and was born at 28 weeks 1. He is, so far, doing great. Got the very last bed space available in all of Ontario (they began shipping babies to Buffalo on Friday as they had no space in our NICUs). She is doing great (got to go see her son for the first time on Monday just past), despite the pain of the c-section. But, of course, they are now watching the one due 6 weeks after me like a hawk. Oddly, she was the one who told me about the other birth. I`ve told her already that she is not allowed to follow suit. That her son has to stay inside her until at least 37 weeks.
Anywho, that is really all. Still sitting around waiting for EI, as my file is still currently under review...there is a backlog, shockingly enough. Not sure when I will actually see anything, but at this moment in time, we have gone through most of our savings (and with our wedding being a few months off, that is not particularly a good thing) and have had to pull our daughter from school-daycare. Flip side to the saving money in that respect is that I can no longer go down to the hospital to spend my days with Riley, and have to find some way of being content with seeing him in the evenings and on the weekends. It is hard, and I spend much of the time calling up to them to see how he is, but, again, it is what it is.
Oh, and on knitting related news, I finally finished the socks for Tony...you know, the ones I started back in August of last year. :) Finally done. And I am almost finished the first of his guitarman socks. Feeling so productive some times. (I have found that I can balance the pumping bottles on my legs and work on socks without a problem - yeah, I am talented like that.)
ttfn
k
Since the infection that Riley went through a few weeks back, his breathing hasn't gotten back to what it was. It is a hard thing to see, especially since he was doing so well with that portion of his development during the first week and a bit of his life. But that damn infection just knocked him back so much. And I know that there is nothing that could have been done for it in any way, shape or form, but that doesn't mean that I don't hate it. Unfortunately, there is no one to rage and rant at for it. It is what it is. He went from being down to low flow to being back on bi-phasic CPAP (this means that it keeps his pressures, and in essence, if they aren't up to what the machine dictates, it gives him an extra breath). His pressures on the bi-phasic have been maxed (which is 10%/7%), and his oxygen has constantly been at 32% (room pressure, what we breath, is 21%). This has been a constant for the last 2 weeks. They have attempted to bring these numbers down, but to no avail. One nurse attempted to bring his oxygen down to 29%, to which he began spelling every 10 minutes. Not good. They had no choice but to bring it back up again. It is just hard, given that he has made virtually no progress as far as that is concerned.
Our primary nurse was in today, and I asked her about this - if the doctors would order another xray to see if there was something impeding his improvement of his lungs. We discussed that, and the fact that nothing has changed at all in the last 2 weeks, which was worrying me very much since the last change was just after the infection - dropping the oxygen from 42% to 32%. So she decided to dropped his pressures, despite the doctor having said that they didn't want to because of the number of spells he was having, purely because she thought he was ready, and she is the one that has to watch over him. He seemed to be doing good on the lower pressures. The numbers are still high (8%/5%), but at least we are finally seeing some movement.
We got the results of his second follow up ultrasound. He still has the grade two intercranial bleed, however it appears to be slightly smaller. They will do another follow up in two weeks time.
He also has his eye exam scheduled for Monday (it should have been last Monday, but someone forgot to put it on the list). His poor little eyes are all puffy still from the CPAP (the CPAP causes their eyes to swell, I would assume due to the pressure constantly being pushed into their sinus cavity along with the lungs). :(
They also requested a physio consult for him, which was performed today. Both Tony and I noticed a while ago that his left foot was sitting a little wonky. I know that it is normal for babies, especially preterms, to have much more flexibility in their extremities, but it has hit a point that it no longer seems normal, and with his spelling, they are not able to position him differently as often as they are with other babies, so he seems to have developed a preference to being frog legged. The physio therapist would like him moved more, even if it is just to his back with towels or blankets at his hips to bring them in a little more. She is also going to start coming in daily at 9 a.m. to work with his legs - doing stretching and such - so that they are no longer showing resistance to the movements.
In other news, it appears that I am a trend setter, but not necessarily in a good way. 4 weeks after I announced I was expecting at work, one of the girls who worked around the corner from my desk announced she was too...4 weeks from my due date (obvious to some, but not necessarily everyone). 2 weeks later, another one. Well, the one who was due 4 weeks after me gave birth last Friday to her son. He was 2 lbs 12 (great weight) and was born at 28 weeks 1. He is, so far, doing great. Got the very last bed space available in all of Ontario (they began shipping babies to Buffalo on Friday as they had no space in our NICUs). She is doing great (got to go see her son for the first time on Monday just past), despite the pain of the c-section. But, of course, they are now watching the one due 6 weeks after me like a hawk. Oddly, she was the one who told me about the other birth. I`ve told her already that she is not allowed to follow suit. That her son has to stay inside her until at least 37 weeks.
Anywho, that is really all. Still sitting around waiting for EI, as my file is still currently under review...there is a backlog, shockingly enough. Not sure when I will actually see anything, but at this moment in time, we have gone through most of our savings (and with our wedding being a few months off, that is not particularly a good thing) and have had to pull our daughter from school-daycare. Flip side to the saving money in that respect is that I can no longer go down to the hospital to spend my days with Riley, and have to find some way of being content with seeing him in the evenings and on the weekends. It is hard, and I spend much of the time calling up to them to see how he is, but, again, it is what it is.
Oh, and on knitting related news, I finally finished the socks for Tony...you know, the ones I started back in August of last year. :) Finally done. And I am almost finished the first of his guitarman socks. Feeling so productive some times. (I have found that I can balance the pumping bottles on my legs and work on socks without a problem - yeah, I am talented like that.)
ttfn
k
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