I'll just give a quick update. We missed posting yesterday because we missed Payton. With the roads being so busy from the long weekend we didn't make it in (though I did venture out onto the highway twice to try but turned around due to the sheer volume).
Alas, it was a nice chance to enjoy some of the warm weather and hang with Livy and Dwayne at Alice Lake (where it looks like Livy may be a bit of a water bug like her mom - no fear of the water means I have to get back to teaching her how to swim).
I wasn't sure how fast Radiology would be able to take Payton to place her PICC and remove her NJ tube and was surprised this morning to find out it could happen as early as 10 am today (which it did).
I wheeled her down the hall again with the help of the medical team (hopefully for the last time) and said a quick goodbye.
They said the proceedure would take an hour and for once they were wrong not because it took too long but because it took less time than expected - YAY!! I think this means we're making progress right??
Her PICC is bleeding a bit more than they like to see but they are keeping a close eye on it. Otherwise Payton's face has no more tubes and for that I'm incredibly happy.
I think its safe to say that she has her daddy's (and sister's) eyes, her mommy's nose and maybe the mailman's mouth (because I'm not sure where that came from).
They are also planning to re-start oral stimulation again using a bit of milk in a bottle nipple.
Today I couldn't be happier with her (though admittedly I'll be much happier when she's home).
Now all we need to do is get her feeding up to full feeds and we can finally ditch this place (the hospital that is).
Tuesday, September 6, 2011
Sunday, September 4, 2011
A Good Day All Around
Its been a good day all around. While we didn't spend that much time at the hospital today we did get to see Payton and we left her in good hands with our favourite nurse - Allison.
She continues to progress slowly and well with her feeds and is up to 5ml/hr today. Her incision looked great (we got a quick peek at it as they unstuffed the wound to let it heal more open assuming the chance of it closing and creating another abcess is gone. The wound will heal 'open' so we assume Payton will have a bit of a divet in her belly for a while.
The rest of the day was Legendary with Dwayne, Livy and I hitting the Aquarium to visit with Dwayne's old roommates from his Victoria days and their two children.
We then tackled and conquered the Grouse Grind but with evening plans for dinner in the works we ran out of Beer and Nacho time. Its almost enough of a reason to return to do it again but it knocked the snot out of me so I may need a bit more of a 'base' before doing it again.
Dwayne and Livy left me in their dust and even when Dwayne let Livy walk most of the last 1/4 "all by self" I still couldn't keep up. I think in the end my climb time was about an hour and 5 minutes which is a realization in itself of how out of shape I am in...I think my fastest is 48 minutes so I have a bit of work to do.
We then joined friends for dinner and spent the evening relaxing and letting Livy burn up some more energy.
In the end it was a good day and we fear it may be one of our last "summer" days and so we're very grateful that we had a chance to soak it all in.
On another note, we learned today that there is a CDH baby in the BC Children's NICU who is struggling. He/she has been there for 2 weeks now and we want to keep the little one in our thoughts as they tough out the hardest part - lung stability.
She continues to progress slowly and well with her feeds and is up to 5ml/hr today. Her incision looked great (we got a quick peek at it as they unstuffed the wound to let it heal more open assuming the chance of it closing and creating another abcess is gone. The wound will heal 'open' so we assume Payton will have a bit of a divet in her belly for a while.
The rest of the day was Legendary with Dwayne, Livy and I hitting the Aquarium to visit with Dwayne's old roommates from his Victoria days and their two children.
We then tackled and conquered the Grouse Grind but with evening plans for dinner in the works we ran out of Beer and Nacho time. Its almost enough of a reason to return to do it again but it knocked the snot out of me so I may need a bit more of a 'base' before doing it again.
Dwayne and Livy left me in their dust and even when Dwayne let Livy walk most of the last 1/4 "all by self" I still couldn't keep up. I think in the end my climb time was about an hour and 5 minutes which is a realization in itself of how out of shape I am in...I think my fastest is 48 minutes so I have a bit of work to do.
We then joined friends for dinner and spent the evening relaxing and letting Livy burn up some more energy.
In the end it was a good day and we fear it may be one of our last "summer" days and so we're very grateful that we had a chance to soak it all in.
On another note, we learned today that there is a CDH baby in the BC Children's NICU who is struggling. He/she has been there for 2 weeks now and we want to keep the little one in our thoughts as they tough out the hardest part - lung stability.
Saturday, September 3, 2011
The Trend Continues
Payton continues to have another good day.
She's slowly (and I mean slowly) increasing her feeds and is currently at 3ml/hr of continuous feeds. She continues to poop and we're happy that it means her digestive system is moving properly.
Dwayne and I went in today to see her though we opted to keep it a short visit (aka no cuddle time) since we have Livy in tow.
As it was we spent about 2 hours at the hospital so that we could be there for her incision bandage changing.
Today Dwayne took the helm since he's missed so much and calmed her while they changed the wound packing. From what he said its looking really good and she didn't cry too much (about as much as she does with a diaper change).
I'm hopeful that any pain she has with the wound will start to get much better starting tomorrow (day 4 after opening it up).
We didn't get the blood cultures back to determine if she's once again a candidate for her PICC line and GJ contrast test but since its the long weekend we don't expect anything until at least Tuesday (likely Wednesday).
By then we hope to be close to half feeds though if they continue to increase her feeds at 1ml/hr per 24 hours then we'll only be on 6ml/hr. Hopefully she continues to hold steady with her output so that they start to increase the frequency of increases.
Otherwise she's doing very well and while visiting today I got to see her wide awake. Today was the 1st time ever she looked like a real baby. Kicking and waving her arms just like a baby is expected to do (albiet with a few wires and tubes). It reminded me of how much she's been through and how proud I am of her and her achievements.
On another note, Dwayne and I have noticed how difficult this entire process has been on us and between lack of sleep, juggling work, hospital time, Livy time and the few other events thrown in there we've negleted to do much for 'us' time. So we've made a concerted effort to be an 'us' for a while. We have stepped back and begun doing things we always loved to do but life hasn't left much time for.
We've hiked the chief a couple of times now (with Livy but she slows Dwayne down so I have a hope in h3ll of catching up - no luck so far but I'll rebound quick I promise) and we're looking forward to do some activities that we used to do many years ago.
This weekend may even see us enjoying a beer and plate of nachos on top of the Grouse Grind (as many of you know this is the starting point of where Dwayne and I met though courtesy of Dwayne the beer was free). I think Dwayne may forgo the flippies while hiking this time but who knows, maybe nostalgia will prevail.
As always, Livy continues to keep a smile on our face through this all and I have a video in the making that I want to get up...I just need to find a little bit of time in all this chaos :).
She's slowly (and I mean slowly) increasing her feeds and is currently at 3ml/hr of continuous feeds. She continues to poop and we're happy that it means her digestive system is moving properly.
Dwayne and I went in today to see her though we opted to keep it a short visit (aka no cuddle time) since we have Livy in tow.
As it was we spent about 2 hours at the hospital so that we could be there for her incision bandage changing.
Today Dwayne took the helm since he's missed so much and calmed her while they changed the wound packing. From what he said its looking really good and she didn't cry too much (about as much as she does with a diaper change).
I'm hopeful that any pain she has with the wound will start to get much better starting tomorrow (day 4 after opening it up).
We didn't get the blood cultures back to determine if she's once again a candidate for her PICC line and GJ contrast test but since its the long weekend we don't expect anything until at least Tuesday (likely Wednesday).
By then we hope to be close to half feeds though if they continue to increase her feeds at 1ml/hr per 24 hours then we'll only be on 6ml/hr. Hopefully she continues to hold steady with her output so that they start to increase the frequency of increases.
Otherwise she's doing very well and while visiting today I got to see her wide awake. Today was the 1st time ever she looked like a real baby. Kicking and waving her arms just like a baby is expected to do (albiet with a few wires and tubes). It reminded me of how much she's been through and how proud I am of her and her achievements.
On another note, Dwayne and I have noticed how difficult this entire process has been on us and between lack of sleep, juggling work, hospital time, Livy time and the few other events thrown in there we've negleted to do much for 'us' time. So we've made a concerted effort to be an 'us' for a while. We have stepped back and begun doing things we always loved to do but life hasn't left much time for.
We've hiked the chief a couple of times now (with Livy but she slows Dwayne down so I have a hope in h3ll of catching up - no luck so far but I'll rebound quick I promise) and we're looking forward to do some activities that we used to do many years ago.
This weekend may even see us enjoying a beer and plate of nachos on top of the Grouse Grind (as many of you know this is the starting point of where Dwayne and I met though courtesy of Dwayne the beer was free). I think Dwayne may forgo the flippies while hiking this time but who knows, maybe nostalgia will prevail.
As always, Livy continues to keep a smile on our face through this all and I have a video in the making that I want to get up...I just need to find a little bit of time in all this chaos :).
Friday, September 2, 2011
The Road to Recovery Starts Today
What a difference today was from yesterday.
Payton has been sleeping almost constantly. She's so calm that the nurses almost get worried and come by to check on her. She's had very little Tylenol (unlike yesterday) and has been sleeping like a baby should.
Today we arrived for cuddles and she essentially slept through all the handling.
We were there for rounds and Payton's doing very well especially in lieu of what her last few days have been.
Her stomach (G-tube) drainage has been very good and in 12 hours was only 7 ml (down from 35ml the previous 12 hrs. It did go up in the afternoon but because of the fussyness during the wound packing and other stuff (to follow).
Surgery was by and they sort of checked the incision (left the bandages on for the nurse to change) and they have approved increase in feeds. She's only on an extra 1 ml/hr (for the next 24 hours) but we'll take any progress we can get.
Then the NICU team came by for rounds. There were no issues and they were glad to hear of increased feeds and the low stomach drainage.
Payton's two IV's continue to hold so her IV feed/meds have been split between the two making a replacement less likely (hopefully they will hold till her PICC is placed).
We were also there for the dressing removal (where they also removed the gauze they stuffed into the wound yesterday). They cleaned and restuffed gauze into the wound. The purpose is to keep it open so that it doesn't close shut thereby traping more bacteria and possibly causing another abcess. Its not pretty and it'll leave a good sized scar.
I did take a picture of it but Dwayne and I decided not to share. Its a particularily nasty picture and I only took it for Payton...so she can see (if she chooses) how strong she was and how much she accomplished for when she's older. We recognized that so many pictures of Payton are not great ones (despite this being her life right now) and we thought that it was time since she's doing so good, to not share something not so nice looking.
I did take another photo (close up) for the doctors/nurses so they have a comparison picture (they were looking but couldn't find the camera to take one while it was exposed). So tomorrow they'll have today's photo to see if there's any improvement or not.
We still haven't gotten her ECHO results but I'm going to assume its because there was nothing to report. So for now, we're assuming (and treating her like) Payton no longer has any signs of pulminary hypertension.
As mentioned earlier, her drainage was great for the first 12 hours of the day. During the cleaning of her incision Payton hardly moved...she did squirm a bit but no crying and she was so easy to handle (shows how much that abcess hurt).
Later before we left we changed her very full diaper (she blew it out with poop) so we're happy to report that her bowels are working well. She had a huge diaper!!
We hope that continues on with the increased feeds and is positive enough to urge the surgeons on to letting her feed more in quickly intervals. But again, I'll take forward motion, however small, as long as we have the worst behind us.
Payton has been sleeping almost constantly. She's so calm that the nurses almost get worried and come by to check on her. She's had very little Tylenol (unlike yesterday) and has been sleeping like a baby should.
Today we arrived for cuddles and she essentially slept through all the handling.
We were there for rounds and Payton's doing very well especially in lieu of what her last few days have been.
Her stomach (G-tube) drainage has been very good and in 12 hours was only 7 ml (down from 35ml the previous 12 hrs. It did go up in the afternoon but because of the fussyness during the wound packing and other stuff (to follow).
Surgery was by and they sort of checked the incision (left the bandages on for the nurse to change) and they have approved increase in feeds. She's only on an extra 1 ml/hr (for the next 24 hours) but we'll take any progress we can get.
Then the NICU team came by for rounds. There were no issues and they were glad to hear of increased feeds and the low stomach drainage.
Payton's two IV's continue to hold so her IV feed/meds have been split between the two making a replacement less likely (hopefully they will hold till her PICC is placed).
We were also there for the dressing removal (where they also removed the gauze they stuffed into the wound yesterday). They cleaned and restuffed gauze into the wound. The purpose is to keep it open so that it doesn't close shut thereby traping more bacteria and possibly causing another abcess. Its not pretty and it'll leave a good sized scar.
I did take a picture of it but Dwayne and I decided not to share. Its a particularily nasty picture and I only took it for Payton...so she can see (if she chooses) how strong she was and how much she accomplished for when she's older. We recognized that so many pictures of Payton are not great ones (despite this being her life right now) and we thought that it was time since she's doing so good, to not share something not so nice looking.
I did take another photo (close up) for the doctors/nurses so they have a comparison picture (they were looking but couldn't find the camera to take one while it was exposed). So tomorrow they'll have today's photo to see if there's any improvement or not.
We still haven't gotten her ECHO results but I'm going to assume its because there was nothing to report. So for now, we're assuming (and treating her like) Payton no longer has any signs of pulminary hypertension.
As mentioned earlier, her drainage was great for the first 12 hours of the day. During the cleaning of her incision Payton hardly moved...she did squirm a bit but no crying and she was so easy to handle (shows how much that abcess hurt).
Later before we left we changed her very full diaper (she blew it out with poop) so we're happy to report that her bowels are working well. She had a huge diaper!!
We hope that continues on with the increased feeds and is positive enough to urge the surgeons on to letting her feed more in quickly intervals. But again, I'll take forward motion, however small, as long as we have the worst behind us.
We gave Blood!! Today - In honour of Payton - Our Hero!!
Yes, these fine folks have bragging rights today!!
What a wonderful email to come home to today after the long drive (made even longer because of the long weekend) from the NICU.
I can only recognize three people in these pictures:
- In the purple shirt my Auntie Beverly (Payton’s Great Aunt).
- In the blue jacket/black shirt with curly hair my Aunt Laurie (Payton’s Great Aunt).
And
- A photo of Payton :)
I’m guessing that the remaining crew are from their place of work and even though we have never met, we are eternally thankful for your effort and generosity.
Subscribe to:
Posts (Atom)