It's been 25 days since my last update. I've been a busy people neglecting my blog. I keep thinking about everything that I want to post on here but never get around to doing so which makes me a bad blogger.
So in a run down, life has settled back down into a wonderful web of normal. Husby is busy filling wood orders before the colder weather sets in, Tink is busy doing all kinds of things toddler, R2D2 has slowly resigned himself to the fact schools starts soon and Dinky is just... Dinky.
Our new neurologist is amazing. We had a video conference at our local hospital about 2ish weeks ago and it was discussed and decided to try a different medication while a slight increase on another one that he's already on. But the one drawback was that this new medication isn't available in Canada. Which means that it's not easily accessible. So our Neuro had to write up a special request form for Pharmacare and then had to fill something out for Health Canada so that they would release it to us for Dinky. It took a few days and then 5 days for the medication to come from BCCH pharmacy to our house.
He's also not gaining weight well again so I've started reading about purees and Gtubes because there has to be something else out there other than just formula that he can be taking so that his tummy has something else in it. Our dietician at BCCH has referred us to someone local so that we can go talk with them to see whether or not we're optimizing his calories.
School starts in 11 days! I have a hard time believing that R2D2 will be going into grade 3. Time seems to be quickly slipping away from me as it feels like yesterday that he was proudly going into kindergarten.
With the cooler weather on the horizon it means Christmas shopping is well under way. Dinky's Christmas gift is almost complete and both Husby and I have decided on the larger gifts for the two older kids. Nieces and nephews are well on the way to being finished. I've squirreled away Husby's gift. Trying to figure out what to do for my parents for Christmas while at the same time trying to make sure that their holiday is a really good one. This year has been all kinds of tough for my family all around. Christmas will be done at our house this year and I'm VERY excited for it! Maybe we'll even decorate the house!
I love the holiday. Good food, good family, food times and good memories.
Sunday, 30 August 2015
Wednesday, 5 August 2015
Surgeries, PICU, birthdays and beyond.
I've been meaning to update this thing for the last couple of weeks but just haven't found the time to get serious about writing. Because let's face it sometimes it's easier being lazy. I will just do this post up really quickly and try to cram as much information into it as possible so that I can move on with my blogging life and not be muddled by all these confusing dates and things that have happened.
When I last posted I was talking about vascular rings and G-Tubes.
June 24th: Dinky went in for his vascular ring surgery. It was maybe 2 hours start to finish. He had an epidural to help with pain management. He handed surgery like a champ! The nurse explained to me what the blake was for and what to look for. A blake is a chest draining tube. It's some doodad that is inserted into the surgical space I suppose to drain out any extra fluid? But because Dinky had recently gotten over a cold we were told to watch out and look for chyle. A milky like substance which means they nicked some lymphnodes during surgery. And wouldn't you know about midnight when the nurse was cleaning and draining his line the clear fluid was starting to take on a thicker not so clear colour any more.
June 25th: Woke up to Dinky having an almost full collection balloon thing on the base of his blake full of, well pretty much milk (at least that's what it looked like). Monogen was started. Now Monogen is a low-fat formula which helps with the whole leaking chyle thing. Don't ask me how it works because I'm not a doctor! The surgeon that worked on Dinky the day before came in, took one look at the blake and went "Oh now THAT is being fixed!". Meaning another surgery for the silly boy. You little monkey head! Husby and the big kids arrived! It was so wonderful to see them as it had been a long almost 3 weeks away from home and I was getting all kinds of lonely and home sick for my family. We had a good visit and then he took the kids to the Ronald McDonald House with plans for coming back later for another visit before bed.
Now this is where things are getting a bit muddled.
About 6:30 PM Dinky started having some slight SAT problems. We weren't sure if it was the probe acting up so that was replaced. The nurse left and then she came back 2 minutes later because his O2 had dropped. We did some position changes and that seemed to help for a minute or two and then he started dropping again so the nurse gave Dinky some blow-by oxygen and went out to call the floor nurse to see what she recommended. Both nurses walked in and Dinky started turning a dusky colour. Immediate bagging happened. The floor nurse ripped the call bell from the wall and yelled out CODE BLUE! (Words I NEVER want to hear again). And within a few heart beats the whole room was flooded with doctors and nurses. They sedated him and gave him a lot of deep suctioning to drain his stomach of whatever contents were in there. So the sedation happened and so did on site intubation. Doctors from all kinds of teams showed up. CTU, PICU, Neuro, Caridology all jammed up into one small room. Not to mention a bunch of nurses running around and fetching things. Blood work was done and before I knew what was happening they were bringing Dinky down to PICU. Somewhere in that time I managed to text Husby and told him to NOT come back to the hospital and that things were not the greatest. I explained what happened (as far as I remember) and what they knew which turns out to be a whole lot of nothing.
Dinky was intubated for about 4 hours before he was extubated and breathing on his own.
June 26th: Rounds happened at about 8 AM and there were all these heads of teams and residents standing around Dinky's bed in PICU and they were all coming up with and throwing out all kinds of things that could have happened. The epidural COULD have shifted and paralyzed his lungs. He COULD have seized and that caused him to vomit which in turn caused him to stop breathing. And if THAT happened it was probably reflux that was the trigger for it. He COULD Have just had too many different medications in his system which caused things to shut down. But when it all came down to it no one knew what the hell happened and the official call for it was a Post-Op Episode. Thanks for that one guys! Dinky went back into the OR to have a look-see to sew up and burn off all leaking lymph nodes. And wouldn't you know he was able to get his G-Tube at the same time! From my understanding is they don't like working on two different parts during the same surgery but I pushed hard for the tube to happen at the same time as having up put him under a THIRD time wasn't really a good option for me. So this surgery took a bit longer. About 3.5-4 hours start to finish. Another night in PICU. Nothing more to note other than I missed a dinner at RMDH with the family. That was kind of sucky.
June 27th: Recovery day in PICU. Husby texted and asked if we should do the Aquarium with the kids that day. The nurse in PICU was all for that so off we went. Now I personally don't know what kind of idiots we actually were that day but WHO THE HECK GOES TO THE AQUARIUM ON A SATURDAY!? It was SO BUSY. Kids had fun though and it was really nice spending some time as a family out of a hospital setting.
June 28th: We were moved out of PICU and back upstairs. Lovely! I think this is the day that R2D2 flew off to the Island to hang out with his cousins and great gramma for a few weeks.
June 29th - 31st: Lots of teaching about the G-Tube and people running around trying to set up and find funding for the Monogen which generally isn't covered by the At Home Program (a program that helps people with medical things) And there was NO WAY we could afford the $52 (or was it $54?) a SMALL can of this formula. SO I was taught how to do the G-Tube stuff by our day time nurses because the G-Tube nurse never bothered showing up. The hospital gave me supplies to get us home.
July 1st: We were discharged to RMDH! Woohoo! We had to come back on the 4th for a follow-up with the cardiac surgeon and for another chest x-ray.
July 2nd: We just drove around and did random things around the city. Took Tink to Go Bananas at a mall and let her play around for a while.
July 3rd: Dinky developed a slight fever and decided he would puke. A lot. So I brought him into Emerg and handed the nurse at the desk his discharge summary which was a lot easier than trying to explain everything that happened. Registered him and wouldn't you know we were brought back into a room right away. Blah, blah, blah. Did a chest x-ray and gave him pedialyte. Cardiac nurse came down and was followed by the surgeon. He as very pleased with the chest x-ray and his nurse removed the stitches where his blake had been. We were given the all clear to go home.
July 4th: Headed home.
Really nothing of note happened when we got home. House cleaning, learning to live life again inside the house rather than hospital stuff. Ped visits, visits with his therapy team.
We travelled back to Vancouver without Tink. We had some follow-up appointments that needed to be done and we were bringing R2D2 back with us. Let me tell you, being an outpatient is the way to go! We met with a new department, Metabolics. I got a good feeling from this department. Blood work needed to be done as well as a urine sample. The next day was Cardiology. An Echo and ECG were done. His heart is great! We don't need to see them again!! Friday was eyes. Ugh. I won't get into that whole gong show. Because it was a mess. Needless to say Dinky now has glasses because his eyes still cross at times AND he's far sighted. We went and picked out glasses, did a quick Ikea trip and went to the airport to pick up R2D2. Home the next day! We stopped at Hell's Gate Airtram and did that.
We stopped off in PG and did a bunch of shopping. Back to school stuff for R2D2 for not only supplies but new clothes as well. Who says children are allowed to grow so fast?!
We got home and let life resume back into its daily norm. Dinky's birthday happened. Nothing big but a friend did make him this wonderful cake! My mum and great gramma (yes, you read that right my great gramma which means my kids great-great-gramma), Husby's parents and brother came to dinner for Dinky's birthday. It was a good day.
I guess we're caught up now on everything that's happened.
Here are a few things that I have learned:
-G-Tubes equal a LOT of puke. Lots. I mean LOOOOOOOOOOOOOOOTS.
- BCCH Nurses are world class top notch people.
- You can find new friends in the strangest of places.
- Family is really the only thing that is important.
- Don't sweat the small things.
- I'm really quite surprised I'm not an alcoholic.
When I last posted I was talking about vascular rings and G-Tubes.
June 24th: Dinky went in for his vascular ring surgery. It was maybe 2 hours start to finish. He had an epidural to help with pain management. He handed surgery like a champ! The nurse explained to me what the blake was for and what to look for. A blake is a chest draining tube. It's some doodad that is inserted into the surgical space I suppose to drain out any extra fluid? But because Dinky had recently gotten over a cold we were told to watch out and look for chyle. A milky like substance which means they nicked some lymphnodes during surgery. And wouldn't you know about midnight when the nurse was cleaning and draining his line the clear fluid was starting to take on a thicker not so clear colour any more.
June 25th: Woke up to Dinky having an almost full collection balloon thing on the base of his blake full of, well pretty much milk (at least that's what it looked like). Monogen was started. Now Monogen is a low-fat formula which helps with the whole leaking chyle thing. Don't ask me how it works because I'm not a doctor! The surgeon that worked on Dinky the day before came in, took one look at the blake and went "Oh now THAT is being fixed!". Meaning another surgery for the silly boy. You little monkey head! Husby and the big kids arrived! It was so wonderful to see them as it had been a long almost 3 weeks away from home and I was getting all kinds of lonely and home sick for my family. We had a good visit and then he took the kids to the Ronald McDonald House with plans for coming back later for another visit before bed.
Now this is where things are getting a bit muddled.
About 6:30 PM Dinky started having some slight SAT problems. We weren't sure if it was the probe acting up so that was replaced. The nurse left and then she came back 2 minutes later because his O2 had dropped. We did some position changes and that seemed to help for a minute or two and then he started dropping again so the nurse gave Dinky some blow-by oxygen and went out to call the floor nurse to see what she recommended. Both nurses walked in and Dinky started turning a dusky colour. Immediate bagging happened. The floor nurse ripped the call bell from the wall and yelled out CODE BLUE! (Words I NEVER want to hear again). And within a few heart beats the whole room was flooded with doctors and nurses. They sedated him and gave him a lot of deep suctioning to drain his stomach of whatever contents were in there. So the sedation happened and so did on site intubation. Doctors from all kinds of teams showed up. CTU, PICU, Neuro, Caridology all jammed up into one small room. Not to mention a bunch of nurses running around and fetching things. Blood work was done and before I knew what was happening they were bringing Dinky down to PICU. Somewhere in that time I managed to text Husby and told him to NOT come back to the hospital and that things were not the greatest. I explained what happened (as far as I remember) and what they knew which turns out to be a whole lot of nothing.
Dinky was intubated for about 4 hours before he was extubated and breathing on his own.
June 26th: Rounds happened at about 8 AM and there were all these heads of teams and residents standing around Dinky's bed in PICU and they were all coming up with and throwing out all kinds of things that could have happened. The epidural COULD have shifted and paralyzed his lungs. He COULD have seized and that caused him to vomit which in turn caused him to stop breathing. And if THAT happened it was probably reflux that was the trigger for it. He COULD Have just had too many different medications in his system which caused things to shut down. But when it all came down to it no one knew what the hell happened and the official call for it was a Post-Op Episode. Thanks for that one guys! Dinky went back into the OR to have a look-see to sew up and burn off all leaking lymph nodes. And wouldn't you know he was able to get his G-Tube at the same time! From my understanding is they don't like working on two different parts during the same surgery but I pushed hard for the tube to happen at the same time as having up put him under a THIRD time wasn't really a good option for me. So this surgery took a bit longer. About 3.5-4 hours start to finish. Another night in PICU. Nothing more to note other than I missed a dinner at RMDH with the family. That was kind of sucky.
June 27th: Recovery day in PICU. Husby texted and asked if we should do the Aquarium with the kids that day. The nurse in PICU was all for that so off we went. Now I personally don't know what kind of idiots we actually were that day but WHO THE HECK GOES TO THE AQUARIUM ON A SATURDAY!? It was SO BUSY. Kids had fun though and it was really nice spending some time as a family out of a hospital setting.
June 28th: We were moved out of PICU and back upstairs. Lovely! I think this is the day that R2D2 flew off to the Island to hang out with his cousins and great gramma for a few weeks.
June 29th - 31st: Lots of teaching about the G-Tube and people running around trying to set up and find funding for the Monogen which generally isn't covered by the At Home Program (a program that helps people with medical things) And there was NO WAY we could afford the $52 (or was it $54?) a SMALL can of this formula. SO I was taught how to do the G-Tube stuff by our day time nurses because the G-Tube nurse never bothered showing up. The hospital gave me supplies to get us home.
July 1st: We were discharged to RMDH! Woohoo! We had to come back on the 4th for a follow-up with the cardiac surgeon and for another chest x-ray.
July 2nd: We just drove around and did random things around the city. Took Tink to Go Bananas at a mall and let her play around for a while.
July 3rd: Dinky developed a slight fever and decided he would puke. A lot. So I brought him into Emerg and handed the nurse at the desk his discharge summary which was a lot easier than trying to explain everything that happened. Registered him and wouldn't you know we were brought back into a room right away. Blah, blah, blah. Did a chest x-ray and gave him pedialyte. Cardiac nurse came down and was followed by the surgeon. He as very pleased with the chest x-ray and his nurse removed the stitches where his blake had been. We were given the all clear to go home.
July 4th: Headed home.
Really nothing of note happened when we got home. House cleaning, learning to live life again inside the house rather than hospital stuff. Ped visits, visits with his therapy team.
We travelled back to Vancouver without Tink. We had some follow-up appointments that needed to be done and we were bringing R2D2 back with us. Let me tell you, being an outpatient is the way to go! We met with a new department, Metabolics. I got a good feeling from this department. Blood work needed to be done as well as a urine sample. The next day was Cardiology. An Echo and ECG were done. His heart is great! We don't need to see them again!! Friday was eyes. Ugh. I won't get into that whole gong show. Because it was a mess. Needless to say Dinky now has glasses because his eyes still cross at times AND he's far sighted. We went and picked out glasses, did a quick Ikea trip and went to the airport to pick up R2D2. Home the next day! We stopped at Hell's Gate Airtram and did that.
We stopped off in PG and did a bunch of shopping. Back to school stuff for R2D2 for not only supplies but new clothes as well. Who says children are allowed to grow so fast?!
We got home and let life resume back into its daily norm. Dinky's birthday happened. Nothing big but a friend did make him this wonderful cake! My mum and great gramma (yes, you read that right my great gramma which means my kids great-great-gramma), Husby's parents and brother came to dinner for Dinky's birthday. It was a good day.
I guess we're caught up now on everything that's happened.
Here are a few things that I have learned:
-G-Tubes equal a LOT of puke. Lots. I mean LOOOOOOOOOOOOOOOTS.
- BCCH Nurses are world class top notch people.
- You can find new friends in the strangest of places.
- Family is really the only thing that is important.
- Don't sweat the small things.
- I'm really quite surprised I'm not an alcoholic.
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