Wow. What a huge difference it makes to be out of a hospital. Brea has been eating better, drinking better, walking better, interacting better. It has made a big difference. Unfortunately we are back at the hospital the next two days (Monday for blood letting and Tuesday for echo, ekg, x-ray follow up). We are hoping to get a better idea of how the follow up in NYC will look at the Tuesday appointment. At this stage we are unsure exactly how long they want us to stay around the city.
Just a short update tonight. We will try and keep you informed as we learn more at the coming appointments.
Sunday, November 27, 2011
Saturday, November 26, 2011
Battered, bruised, broken and FREE!
As with every other day over the last couple of weeks, today has been an emotional roller coaster. It started with the wake up call from the blood lady (the lady who draws blood from Brea). Over the last couple of days this task has become progressively harder as Brea's little arms are an assortment of bruises and IV lines, making it hard to find a suitable vein to draw blood from. I found it very difficult today encouraging Brea and felt like I had nothing left to give. I had no words, all I could do was hold her hand, stroke her hair and place my face next to hers as they drew her blood (while she repeated over and over "it's not going to hurt").
When the nurse visited us a short while later, she had mixed news. The good news was that it was likely that Brea would be discharged today. The bad news was that they didn't get enough blood to test her INR (a measure of the thickness of the blood). This means they would have to draw more blood to know how to dose her warfarin in order to send us home. The repeat visit drained me of my already low reserves of encouragement. The nurses had to continually adjust the needle to make sure they collected enough blood.
More mixed news came later. The x-ray taken this morning looked great, but the INR level was below the range they want it in. The nurse told us that this meant we would be staying in another night. It would be an understatement to say that this news left us a little deflated. An hour later, the doctors came to tell us that we could actually go home (fortunately doctors overrule nurses), provided we come in on Monday to get more blood drawn to re-dose her warfarin.
Brea ended up getting discharged sometime between 3pm and 4pm (the time is a little hazy as we had accumulated so much stuff in the hospital room that we had to make a couple of trips). It was a strange feeling walking outside with all four of us at the same time. Since Brea went in for her surgery, there have only been a couple of times Bronwyn and I have left the hospital at the same time.
It was remarkable to see the difference in Brea solely from leaving the hospital. Before we left, she did not want to walk and was not talking near as much as she does at home. Within moments of getting back in the door here, she said "out of the stroller" and she walked over the sofa and climbed up on it.
Eleven days after the surgery it is amazing to see how battered and bruised Brea's body is. Her incision has healed remarkably in such a short time (as have her drainage holes). However, her thighs are completely wasted from the tape they used to hold the central and arterial lines in. As mentioned above, her arms are very bruised from numerous needles and IV lines. Her torso (aside from her incision) is covered in red marks and sticky residue from all of the monitoring equipment that they use in the hospital. She is definitely the bravest little girl I know.
It is probably no surprise that Bronwyn and I are both emotionally (and physically) exhausted. The clearest example of this was with visitors who would come to see Brea (we loved having you all and appreciate very much all of your kindness). I was so emotionally spent, I felt removed from reality and most of the time didn't know how to make conversation. In many ways, I think that Brea will recover from this surgery faster than her parents.
Once more, we just want to thank everyone who made this experience much easier than it could of been. This includes all of you who have been thinking and praying for us, as well as the many of you who have supplied us with meals, looked after Fleur, let us borrow toys/baby gear, or let us stay in your apartment. We will always be thankful for what you have given us.
Here are another couple of photos. One was taken last night of Brea and Fleur in Brea's bed. The second was taken tonight and is of Fleur helping Mum write emails on the ipad to let people know that we were out of hospital.
When the nurse visited us a short while later, she had mixed news. The good news was that it was likely that Brea would be discharged today. The bad news was that they didn't get enough blood to test her INR (a measure of the thickness of the blood). This means they would have to draw more blood to know how to dose her warfarin in order to send us home. The repeat visit drained me of my already low reserves of encouragement. The nurses had to continually adjust the needle to make sure they collected enough blood.
More mixed news came later. The x-ray taken this morning looked great, but the INR level was below the range they want it in. The nurse told us that this meant we would be staying in another night. It would be an understatement to say that this news left us a little deflated. An hour later, the doctors came to tell us that we could actually go home (fortunately doctors overrule nurses), provided we come in on Monday to get more blood drawn to re-dose her warfarin.
Brea ended up getting discharged sometime between 3pm and 4pm (the time is a little hazy as we had accumulated so much stuff in the hospital room that we had to make a couple of trips). It was a strange feeling walking outside with all four of us at the same time. Since Brea went in for her surgery, there have only been a couple of times Bronwyn and I have left the hospital at the same time.
It was remarkable to see the difference in Brea solely from leaving the hospital. Before we left, she did not want to walk and was not talking near as much as she does at home. Within moments of getting back in the door here, she said "out of the stroller" and she walked over the sofa and climbed up on it.
Eleven days after the surgery it is amazing to see how battered and bruised Brea's body is. Her incision has healed remarkably in such a short time (as have her drainage holes). However, her thighs are completely wasted from the tape they used to hold the central and arterial lines in. As mentioned above, her arms are very bruised from numerous needles and IV lines. Her torso (aside from her incision) is covered in red marks and sticky residue from all of the monitoring equipment that they use in the hospital. She is definitely the bravest little girl I know.
It is probably no surprise that Bronwyn and I are both emotionally (and physically) exhausted. The clearest example of this was with visitors who would come to see Brea (we loved having you all and appreciate very much all of your kindness). I was so emotionally spent, I felt removed from reality and most of the time didn't know how to make conversation. In many ways, I think that Brea will recover from this surgery faster than her parents.
Once more, we just want to thank everyone who made this experience much easier than it could of been. This includes all of you who have been thinking and praying for us, as well as the many of you who have supplied us with meals, looked after Fleur, let us borrow toys/baby gear, or let us stay in your apartment. We will always be thankful for what you have given us.
Here are another couple of photos. One was taken last night of Brea and Fleur in Brea's bed. The second was taken tonight and is of Fleur helping Mum write emails on the ipad to let people know that we were out of hospital.
Friday, November 25, 2011
One day closer
It appears as if Brea will be discharged tomorrow. Almost everything seems to be improving at this point. She has had two x-rays this morning, both of which the doctors were very happy with. She is also walking better. She still doesn't like it or want to do it, but at least she is complaining less and has even walked on her own a couple of times (we don't generally get any further than 10m in a go at the moment).
The big remaining challenge is her eating and drinking. We both thought she has been eating and drinking much better, but the nurse has just came in and told us that she is starting IV fluids as her chemistry appears a little dehydrated. So this is something that we will have to keep a pretty close eye on if we are discharged tomorrow.
Other than that there is not much in the way of news. Below are a few photos of Brea and Fleur. Most of them are happy photos except one which shows a fairly familiar face whenever someone wants to do anything to Brea.
The big remaining challenge is her eating and drinking. We both thought she has been eating and drinking much better, but the nurse has just came in and told us that she is starting IV fluids as her chemistry appears a little dehydrated. So this is something that we will have to keep a pretty close eye on if we are discharged tomorrow.
Other than that there is not much in the way of news. Below are a few photos of Brea and Fleur. Most of them are happy photos except one which shows a fairly familiar face whenever someone wants to do anything to Brea.
Thursday, November 24, 2011
Thanksgiving Day
We're another day closer to discharge and things are looking pretty good this morning. Brea got some good sleep last night - which is sometimes hard to come by in a hospital!
She had an x-ray this morning and it was clear :) So the fluid that gushed out last night was obviously a quick way to rid her lungs of the remaining fluid there.
They have also been cutting back Brea's oxygen and have just stopped it entirely this morning. So no more nasal canula and no more yucky tape on Brea's face.
We have been up and about this morning. Brea seems a bit fearful of getting out of bed so we took her for a walk around the unit in her stroller. Then we got her out to walk on her own but she was not happy about that. We encouraged her to walk a few metres from her stoller to a chair and then back again. This must have been quite tiring as she is back in bed and asleep now.
The Dr's have mentioned Saturday as a possible release date. Before then we have to make sure her warfarin dose is sorted out and we have her blood the right thickness. And we also have to get her eating and drinking. The Dr's are not too happy with her appetite or fluid intake. We've told them she's never been a big eater or drinker at home, but they're still not happy. She seems pretty bored of the hospital food, but we brought her in some Marmite this morning and she's eaten a big cracker covered with Marmite :)
A few of you have asked after Fleur. She is with us in NY. We have had amazing help babysitting her and bringing her back and forth so that Bronwyn can feed her (thanks to the Tyson family and the Ryness family) We are also very lucky as Fleur is a very relaxed baby and does not fuss much. Since Fleur cannot stay at the hospital overnight, her and Bronwyn head back to the apartment where we are staying a couple of blocks from the hospital. Bronwyn is also extremely thankful that Fleur has just figured out how to sleep for a looooong time :) The last three nights she has sleep for about 8-9 hours each night!!!
This thanksgiving we have much to be thankful for. If Brea had of been born in our generation she wouldn't have made it out of her first week. We are so thankful that the surgery was successful and that Brea appears to be making a good recovery. Yes, there have been a few bumps along the road, and will no doubt be plenty more, but it is good to see our little girl become more and more herself every day. We are also very thankful for our friends and family. You have helped to carry us through the last couple of weeks, some of you with your practical support, and many of you in prayer. Having to hand your child over to have open heart surgery is a lesson in how our children are not really our own. Instead they are precious gifts that we have the chance to raise (and hopefully teach them something). This thanksgiving we are most thankful that we have both of our precious gifts for another day.
She had an x-ray this morning and it was clear :) So the fluid that gushed out last night was obviously a quick way to rid her lungs of the remaining fluid there.
They have also been cutting back Brea's oxygen and have just stopped it entirely this morning. So no more nasal canula and no more yucky tape on Brea's face.
We have been up and about this morning. Brea seems a bit fearful of getting out of bed so we took her for a walk around the unit in her stroller. Then we got her out to walk on her own but she was not happy about that. We encouraged her to walk a few metres from her stoller to a chair and then back again. This must have been quite tiring as she is back in bed and asleep now.
The Dr's have mentioned Saturday as a possible release date. Before then we have to make sure her warfarin dose is sorted out and we have her blood the right thickness. And we also have to get her eating and drinking. The Dr's are not too happy with her appetite or fluid intake. We've told them she's never been a big eater or drinker at home, but they're still not happy. She seems pretty bored of the hospital food, but we brought her in some Marmite this morning and she's eaten a big cracker covered with Marmite :)
A few of you have asked after Fleur. She is with us in NY. We have had amazing help babysitting her and bringing her back and forth so that Bronwyn can feed her (thanks to the Tyson family and the Ryness family) We are also very lucky as Fleur is a very relaxed baby and does not fuss much. Since Fleur cannot stay at the hospital overnight, her and Bronwyn head back to the apartment where we are staying a couple of blocks from the hospital. Bronwyn is also extremely thankful that Fleur has just figured out how to sleep for a looooong time :) The last three nights she has sleep for about 8-9 hours each night!!!
This thanksgiving we have much to be thankful for. If Brea had of been born in our generation she wouldn't have made it out of her first week. We are so thankful that the surgery was successful and that Brea appears to be making a good recovery. Yes, there have been a few bumps along the road, and will no doubt be plenty more, but it is good to see our little girl become more and more herself every day. We are also very thankful for our friends and family. You have helped to carry us through the last couple of weeks, some of you with your practical support, and many of you in prayer. Having to hand your child over to have open heart surgery is a lesson in how our children are not really our own. Instead they are precious gifts that we have the chance to raise (and hopefully teach them something). This thanksgiving we are most thankful that we have both of our precious gifts for another day.
Wednesday, November 23, 2011
Leaky
About 5 minutes after the previous blog post, we sat Brea up to have a drink of apple juice. As she was drinking, Bronwyn exclaimed "you are peeing out of your diaper" (after our stint in hospital it looks like we are going to have a battle to re potty train Brea, but that is another topic entirely). After a few moments contemplation we realised that the fluid was actually gushing (no choice this time) from the spot where the drainage tube was coming out of the left lung. This drainage tube was removed a couple of days ago (the dressing was downgraded to a band-aid this morning) so it was a bit of a surprise. A cardiologist came and dressed it again and want us to keep Brea as still as possible (which is currently easy as she is sleeping). Someone from the surgery team will come and check on it in the morning. We are not really sure what the implications of this are, but thought some of you might appreciate knowing this.
Another day
In a relative sense, today was quite an uneventful day. Unfortunately, we are in a shared room and our neighbours provide an equal dose of entertainment and headaches. Between the snoring and the them all waking at 5am, there was not as much sleep to be had as we would have liked. There was also a good barney when the wife woke the father to help her with junior.....
Brea also woke at about 230am crying incessantly. She wouldn't talk to me or communicate in any way. Eventually the nurse came in and she ended up giving her some morphine that helped her sleep through the rest of the night.
Her last remaining drainage tube had not really drained anything so they removed that late in the morning. Unfortunately, the reason it stopped draining is because it was blocked. Once they took it out, a lot of fluid came oozing/gushing (you choose) out. A couple of hours later they took an x-ray to see if there was any fluid left in there. They were quite pleased that all of the fluid appeared to have come out. The removal of the final tube marks the point from which Brea has to remain on the fat-free diet for another two weeks.
This morning Brea also had her "discharge" echo. I think they were pretty happy with the pictures and her heart appears to be doing everything it should be doing.
There are a few things they want to clear up before they will let us break out. One of those is that there is still some fluid in the left lung. They want Brea up and moving around as much as possible to get her lungs opened up to get rid of this fluid. Unfortunately, Brea doesn't seem thrilled about the prospect. Every time we suggest a walk there is a period of "No, no NO!". We have managed to get her up 2-3 times and while not enjoying it, she seems to be doing quite well. If we could get to the point where she wants to get up and walk, I think we would make good progress on this front.
Another thing is the oxygen she is receiving. Fortunately, she is down to quite a low amount, so hopefully we can ween that off tomorrow.
The final thing is her fluid intake. They are wanting her to drink more, as they are a bit concerned she is not drinking enough. They had to give her IV fluids last night and I think they are going to give her more tonight. Brea has never really drunk a lot, so I am not sure how well we are going to do on that front.
All in all, it is quite positive. Hopefully, provided progress continues, we should be able to leave in the next day or three. They have warned us that they will be following up with us pretty closely, particularly with x-rays to make sure the fluid is draining.
Brea also woke at about 230am crying incessantly. She wouldn't talk to me or communicate in any way. Eventually the nurse came in and she ended up giving her some morphine that helped her sleep through the rest of the night.
Her last remaining drainage tube had not really drained anything so they removed that late in the morning. Unfortunately, the reason it stopped draining is because it was blocked. Once they took it out, a lot of fluid came oozing/gushing (you choose) out. A couple of hours later they took an x-ray to see if there was any fluid left in there. They were quite pleased that all of the fluid appeared to have come out. The removal of the final tube marks the point from which Brea has to remain on the fat-free diet for another two weeks.
This morning Brea also had her "discharge" echo. I think they were pretty happy with the pictures and her heart appears to be doing everything it should be doing.
There are a few things they want to clear up before they will let us break out. One of those is that there is still some fluid in the left lung. They want Brea up and moving around as much as possible to get her lungs opened up to get rid of this fluid. Unfortunately, Brea doesn't seem thrilled about the prospect. Every time we suggest a walk there is a period of "No, no NO!". We have managed to get her up 2-3 times and while not enjoying it, she seems to be doing quite well. If we could get to the point where she wants to get up and walk, I think we would make good progress on this front.
Another thing is the oxygen she is receiving. Fortunately, she is down to quite a low amount, so hopefully we can ween that off tomorrow.
The final thing is her fluid intake. They are wanting her to drink more, as they are a bit concerned she is not drinking enough. They had to give her IV fluids last night and I think they are going to give her more tonight. Brea has never really drunk a lot, so I am not sure how well we are going to do on that front.
All in all, it is quite positive. Hopefully, provided progress continues, we should be able to leave in the next day or three. They have warned us that they will be following up with us pretty closely, particularly with x-rays to make sure the fluid is draining.
Tuesday, November 22, 2011
We are out of the ICU
They ended up taking the two lines out of her groin at around 2:30pm. Brea did not like it. However, as we hoped, she has been much happier since they have come out. It wasn't long before she had a big cuddle with Mum before heading back to bed (Dad had a cuddle a couple of days ago which caused some problems with her lines). They are wanting to get Brea sitting up as much as possible as this opens up her lungs. The problem is that it tires Brea out, so it is a bit of a balancing act at the moment -- trying to get her moving without exhausting her.
It wasn't long after we got the lines out that we had confirmation we were getting the boot from the ICU. Initially our nurse thought we might stay there tonight because "we like you, and you never know what the next one coming in will be like", but obviously someone higher up didn't share his opinion. We ended up moving at about 5pm.
Just to show that we will complain about everything, we are a little worried about our move. While it is a major step in Brea's progress to move out of the ICU, we have found the care on the 6th floor somewhat lacking in the past. On one occasion after ringing the call button we had to wait 45 minutes for the nurse to arrive. On another occasion they forget to deliver us dinner. When we asked, it took them around 2 hours to ferret for some cheerios.
One bonus is that tonight they had an early thanksgiving meal (in both the ICU and down here on the 6th floor). We have a lot to be thankful for, even if we will (probably) spend thanksgiving day in the hospital.
It wasn't long after we got the lines out that we had confirmation we were getting the boot from the ICU. Initially our nurse thought we might stay there tonight because "we like you, and you never know what the next one coming in will be like", but obviously someone higher up didn't share his opinion. We ended up moving at about 5pm.
Just to show that we will complain about everything, we are a little worried about our move. While it is a major step in Brea's progress to move out of the ICU, we have found the care on the 6th floor somewhat lacking in the past. On one occasion after ringing the call button we had to wait 45 minutes for the nurse to arrive. On another occasion they forget to deliver us dinner. When we asked, it took them around 2 hours to ferret for some cheerios.
One bonus is that tonight they had an early thanksgiving meal (in both the ICU and down here on the 6th floor). We have a lot to be thankful for, even if we will (probably) spend thanksgiving day in the hospital.
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