Sunday, July 31, 2011

Making Progress!

This morning when I called the hospital at 9am to check up to see how Bronson was doing the nurse said they had taken him off of the CPAP mask and he had been breathing on his own WITHOUT ANY O2 for an hour already! In 11 weeks this is only the second time he's EVER been without any breathing assistance or O2! The first time was over a month ago and he went for 5 hours without needing any O2. But, then his abdomen started getting larger due to the ascites from the liver failure and he has needed a lot of support ever since. So, you can imagine how excited Jon and I were to hear that he had already gone 1 hour without any assistance!

The main reason Bronson has needed breathing support and oxygen is because his abdomen has been HUGE. In the last four days it has gone down by 6cm... that's a huge decrease considering his size! It amazes me how fast things have started to improve in a short 8 days since his liver transplant!

Bronson hasn't had any low grade fevers since Friday, thankfully! The only thing that is a little worrisome at the moment is that yesterday when I was there he had a seizure... and apparently they thought they saw some seizure activity the day before but it was so short they weren't 100% sure... but after yesterday's episode I'm sure it was a seizure. They thought it could be caused by either his electrolytes being out of balance or his medications. When I googled one of his anti-rejection meds I found that there is a small chance of seizures being a side effect and I know that they have been adjusting the levels of this medication in order to get the correct dosage. So, I'm sure once they have it figured out he shouldn't have any more seizures.. and on the bright side, he hasn't had any since the one I saw yesterday morning.

Friday, July 29, 2011

Infections - Stay Away!

I forgot to mention in previous posts that although Bronson is improving he had a low grade fever two days ago and then twice again today. They took blood cultures and swabs the other day and from what I've been told have been negative. They retook them all again today so we're hoping everything comes back ok. The medications that he's now on make him very immunosuppressed and very prone to infections so he was started on antibiotics proactively. A temperature can also be a sign of organ rejection but, we're praying that's not the case because from what we're told his liver is doing so well.

Since Bronson's breathing tube and catheter were both removed yesterday that at least eliminates two easy areas for any infections to start. 

Happy One week, Liver!

Bronson's liver is one week old today and, I'm sure, every year we're going to be celebrating his liver's birthday on July 22!

Bronson is still needing the extra CPAP support to breathe and is occasionally still requiring some blood transfusions but, things are slowly going in the right direction! He's still only awake for short periods at a time (maybe 20 mins each time?) but he is also still receiving some sedation so that he doesn't try and pull his tubes out! But, considering in the past he has self extubated himself twice, pulled his catheter out with his toes once, and many many times pulled out his NG tube it makes sense to keep him a little sedated until the tubes are all out!

The day before Bronson's liver transplant, July 21, was our 4th Wedding Anniversary! It's been a wonderful 4 years and our little family that began with the two of us is now a family of four... although, if you count our dogs it's actually a family of six! God has blessed us in so many different ways and even though we've been through some tough times I wouldn't change a single thing! Now we just need our little boy home!

Thursday, July 28, 2011

Post-op Day #6

Bronson is doing great! He had his breathing tube taken out today and is now breathing with a CPAP mask on. The next step is to say goodbye to the CPAP and on to nasal prongs. Once he's off the CPAP for about 24 hours, and is stable, he'll be able to be moved out of the ICU and back to his old floor. 

His morphine was completely turned off this morning and he is starting to be more awake and look around. I still can't get over how white his eyeballs are! I love looking into those clear blue eyes of his. I haven't been able to hold him since his surgery but now that his breathing tube is out maybe I'll be able to tomorrow. Although with his incision I might have to wait a little longer... but I'm not 100% sure of that. 

Bronson's surgeon came by this morning and was very happy with everything! Almost all of his liver blood work is normal now! His abdomen is still VERY big but some of it is fluid and swelling and the other part is his liver. Apparently, his new liver is huge and takes up a lot of space making his abdomen look even bigger. I learned from the surgeon today that his new liver will actually shrink to fit him and then grow as he grows! The liver is such an amazing organ! 

Sarah Beth is doing great and was discharged from the hospital last night. She's still in some pain and uncomfortable but I'm sure she's just glad to be in her own bed! 

Tomorrow marks one week since Bronson's liver transplant and it's gone by so fast! Hopefully only 2-3 more weeks and he'll be home with us! :)

Tuesday, July 26, 2011

Post-op Day #4

I'm absolutely exhausted so just a quick little update tonight..

Bronson had a pretty good day. This afternoon they tried turning the ventilator settings off and changed it to CPAP and as far as I know he did ok with that. He's still intubated but if he does ok on the CPAP settings they might be able to take the breathing tube out tomorrow and put a regular CPAP mask on him or maybe go right to nasal prongs... we'll see how it goes tonight!

His incision looks nice and dry and no problems with it so far. His belly is still quite large with swelling and some ascites (fluid in his abdomen). The Dr. told me that some kids have some ascites for up to 3 months after transplant so I shouldn't worry about his right now. His drains are still draining well and his output has picked up quite a bit. They decreased his morphine infusion this afternoon so he should start to be a little more awake!

I saw Bronson's eyes open for the first time since surgery today and THEY WEREN'T YELLOW! His eyeballs are WHITE WHITE WHITE! I couldn't believe it! I think it's probably been 8 weeks since I last saw him with white eye balls! I was SO excited about that! :)

Sarah Beth came from Toronto General over to Sick Kids today to see Bronson for the first time since surgery. I got some pictures of her standing beside him. I know I  haven't posted any pics of him since he was about 6 weeks old... I'll really try and put some pictures up this week but my priorities are elsewhere for obvious reasons!

I'll try and write a better post tomorrow but I'm wiped and just want to lay down!

Monday, July 25, 2011

Post-Op Day #3 Update

Today marks week #11 that Bronson has been at Sick Kids. Now that he's received his liver transplant we're hoping that he'll be able to come home with us in about a month! I can't believe so much time has gone by already!

I'll start my update by first saying that the surgeons and other dr's are quite happy with how Bronson's new liver looks! His liver function blood work is getting better everyday and his bilirubin levels, which were in the 300's, are now down to 4 (they're supposed to be zero)! I can't get over how great his color is! He's been yellow for so long it's so great to see him look the color a normal baby should! 

Last night I received a call around 8pm from his surgeon telling me that he needed to go back into the OR because he had a lot of fluid building in his abdomen and nothing was coming out of his drain. He was given general anesthetic again, his incision reopened, 300ml of fluid drained and 2 new drains put in. His old drain had a clot in it so that's why it wasn't draining. His fluid output is still not as high as what they'd like it to be but at least it's better than yesterdays! 

Bronson is still in the ICU and will be until he's able to breathe without the ventilator and breathing tubes. I'm expecting him to be in here 1-2 more weeks. His breathing issues have been directly related to the pressure in his abdomen pushing up on his lungs so hopefully with new drains that are working his breathing will start improving. 

It's great hearing all the Dr's say how great the liver looks and how well he seems to be doing. I haven't seen him awake yet because they're keeping him sedated enough to keep comfortable and also so that he doesn't pull out his breathing tubes again! 

Yesterday I asked Bronson's surgeon how his old liver looked once it was out and she said it was mostly dead tissue. There was also very little evidence of any tumors left on his liver (because of the liver being mostly dead) so she was able to take a piece of his adrenal gland for biopsy. We have never been able to get a classification of his neuroblastoma so with this sample they should be able to. If the sample is a particular classification of neuroblastoma then he will most likely require more chemotherapy. But, I believe the chance of that is quite small. One week ago his cancer markers were still great and just a little above the normal range. So, his cancer is still "under control" as per his oncologist, or "gone" as per one of the liver Dr's... Which is great!!

Sarah Beth is having a much better day today. She's still in pain but not as intense as what it was. She got up and walked once around the unit yesterday and has been up twice today walking. From what I've heard she will be in the hospital until later on this week (thursday friday-ish?) and then be able to go home. 

So far this week is off to a good start!!

Saturday, July 23, 2011

Post-op Day #1

Post-op Day #1

Bronson pulled out his breathing tube this morning.... Again! That's the second time that he's done that now! They didn't want to re-intubate him if they didn't have to so they put a plastic box thing over his head with O2 flowing into it and for most of the day he was ok like that. At 9pm we got a call that his breathing had become quite laboured and they had to put the breathing tube back in. Hopefully it won't have to stay in too much longer!

 Bronson is starting to have some fluid build in his stomach again but, we were told that could happen after transplant..  with the possibility of him needing another abdominal tap. Currently there hasn't been any talk of a tap so with diuretics hopefully they can get him to start peeing the fluid out. I can't believe how quickly his color has improved! He's been yellow for so long it's nice to see him looking a normal color! 2 weeks ago his jaundice level (conjugated bilirubin) was 330 and today, just 12 hours after surgery, it was 34! It's supposed to be at 0 so it's almost normal!! I forgot to mention last night that the surgeon said his liver was already producing bile while they were closing him up! I'm so glad he has a new liver!

Sarah Beth is in a lot of pain today and has been battling a lot of nausea. She's pretty hopped up on morphine which makes her fall asleep half way through a conversation... It's actually quite funny because then 5 mins later she wakes up and continues talking and doesn't believe us that she fell asleep.  

That's pretty much it for the updates today! Please continue to pray for quick recoveries for the both of them and that no complications arise! 

Friday, July 22, 2011

Day of Liver Transplant - Updates

Today is the big day of the liver transplant. I will post updates of how Sarah Beth and Bronson are doing throughout the day. I'll just keep adding to this post instead of starting a new one each time. 

7:55am - Sarah Beth was wheeled into the OR. We won't have an update of how she's doing until 10-11am ish. 

8:50am - Bronson is hanging out in his bed waiting to be taken down to the OR. I was told he'd go down somewhere between 9-10am. 

10am - SB's surgery was officially started at 9am and everything is going as planned. 

10:30am - Bronson was taken into the OR to be prepped. They won't start opening him up until they hear from Toronto General that SB's liver piece has been cut. 

1:15pm - No updates yet for Bronson or SB. No updates is probably a good thing though because that should mean SB's liver is ok to use (there was still a 5% chance that once she was opened up they would find a problem and not be able to continue) and they should be getting ready to take Bronson's liver out. My parents are over at Toronto General waiting to hear about SB and Jon and I are at Sick Kids waiting. Thank goodness for texting between hospitals to hear how they're both doing!! 

3:00pm - Sick Kids OR called out to the waiting room and so far everything is going good with Bronson.  I heard that there was a delay due to an emergency elsewhere in the hospital so Bronson's surgery didn't start until 1p So he probably won't be out of surgery until 10-11pm tonight. I hope it's a little earlier than that though!

3:30pm - SB's surgery is completed. They are just doing an Xray and then closing her up and taking her to the recovery room. The dr said everything went as planned with no complications

5:00pm - Bronson is still in surgery but everything is "good". My aunt came by to visit which was a good distraction from thinking about  surgery. I just asked a volunteer to see if she could find out a time estimate
for me and all she said was that it's scheduled until 7pm. So I hope that's an accurate timeframe. I really
hope it doesn't go longer! 

7:55pm - A surgical nurse just came and told us that everything is still "good" and if we don't hear any updates in two hours to call into the OR. So, looks like we still have a long night...
10:15pm - the surgeon just came out to tell us Bronson is out of surgery and it went very well! If the liver piece was too big they would have had to leave the incision open and close it later but because of how big his abdomen was pre-surgery  it made room for the new liver and they were able to close the incision. There was also a chance that he would have to have his spleen removed and then be on penicillin for the rest of his life but they were able to leave it in! The  Toronto General told my parents that SB's liver was abnormally long and slender which made it a perfect size for Bronson. Also, the surgeon told me normally if a potential donor has had a tattoo within a year they won't use the liver. But, they did blood work 3 times and everything was ok and so they made an exception for SB. Bronson is in the process of being moved to the ICU and in an hour we'll be able to see him. We're so happy that everything went so well! 

My parents went to see SB around 8pm and she was awake, drowsy and VERY nauseous. However, she was with it enough to ask if she could put her finger up her nose. When asked why she wanted to do that she said because it was itchy! So, despite her nauseousness she's still herself! 

As of right now SB and Bronson have no complications and are doing alright after their big surgeries! I'll post another update tomorrow. 

Thursday, July 21, 2011

Transplant day is official!

Liver transplant day is officially tomorrow!! 100% set in stone...well as long as a trauma doesn't come in tomorrow morning at Toronto General or Sick Kids. 

The plan for the day:

6am - Sarah Beth (SB for short) at hospital and after getting prepped surgery will start. 

8-11am - somewhere in this time frame the surgeon will give the "ok" that SB's liver is good and the surgeons at SK will start getting Bronson ready and then start opening him up. 

12-3pm - depending on how fast or slow the surgeons go SB's liver piece will be brought over to Sick Kids OR and put it in Bronson. 

4ish pm - SB will be in the recovery room starting to wake up. 

6pm  - SB will be moved out of recovery and up to a floor. 

6pm - 10pm - Bronson's surgery will be over somewhere in this timeframe and then will be moved into the PICU (paediatric ICU). 

It's going to be a VERY long day... SB's surgery is about 4-6 hrs and Bronson's is 6-12 hours long. So please keep both of them in your prayers throughout the day tomorrow. I will start a post tomorrow and keep adding to it as we are told updates. 

Wednesday, July 20, 2011

Smiley Boy

Bronson has started smiling quite a bit lately! But, for some reason he only likes to smile at the nurses and the physiotherapist.. not me! BUT, this morning he had lots and lots of smiles for his mama! :) I tried getting some picture of him smiling today but every time I took out the camera he would start crying! I'm determined to capture a picture of a smile though and will keep on trying!

I'm trying to cherish every moment I get to hold this this week because when his transplant happens he'll be in the ICU for a couple of weeks and I know I won't be able to hold him until his breathing tube is taken out. So, I'm taking every chance I can to give him cuddles! :) 

Bronson had to have yet another abdominal tap done today and they drained another 700ml. There was still some fluid left over but if they were to drain it all then it could cause some major problems with his blood pressure and we don't need any extra problems. The taps are starting to be done more frequent which isn't a good thing. The ascites in his stomach will acculate more quickly after each tap is done and each time they tap him it puts him at a higher risk for infection. So, he really just needs a new liver!

We STILL haven't heard anything from Sick Kids in regards to his transplant happening this week. However, one of the nurses I was talking to yesterday told me I probably wouldn't hear about it until the day before..... thats tomorrow....... so I'd better hear about it!!! Earlier this week I was told that if it doesn't happen this week then for sure it wouldn't the week after because one of the surgeons they need isn't available... so... that would put it off until the first week of August! With the way his liver is right now and with the fast accumulation of fluid I don't know if he'll be able to wait that long. 

As soon as I hear something tomorrow about his transplant I'll post the information! 

Tuesday, July 19, 2011

The Unofficial Plan

Well my sister had her final appointments today and was given the official "ok" from Toronto General to be the liver donor. The Liver transplant team at Toronto General told her to arrive this coming Friday (July 22/11) at 6am for the surgery!! Woohoo!! :)

However, we still haven't heard a word about the transplant from the team at Sick Kids. But, if toronto general is telling my sister to arrive Friday for the surgery I'm assuming it's a go ahead because they wouldn't take a piece of her liver without doing Bronson's surgery the same day. My guess is that Sick Kids don't tell the parents until 1-2 days beforehand just in case the donor decides to change his/her mind. I'm sure they don't want parents to think everything is a go ahead and then have to cancel it the day before. BUT, it's kind of frustrating getting the information through my sister (although she technically isn't supposed to be giving us the info!) and not from the actual transplant team at Sick Kids. I prefer to know everything that's going on with Bronson's care, even if it means having it cancelled last minute... I just want to know!

Sooo... I'm sure tomorrow or Thursday Sick Kids will tell us about the transplant ...finally.. and I'll pretend to be surprised!!

Quick update

Just a short update on Bronson for now...

Bronson has been having a lot of ascites (fluid in his abdomen) build up because of the liver failure. Sunday afternoon he had yet another abdominal tap done to help and relieve some of the pressure off of his lungs. Through ultrasound, before the tap, the dr could see 1.5liters of fluid in his abdomen. During the tap they could only remove 680ml because his blood pressure started dropping. But, at least removing what they were able to has helped his breathing improve for now. 

For the last week he's been having a low grade fever on and off but all of the blood cultures and swabs they've taken keep coming back negative. He hasn't had any fever since Sunday so please pray that there isn't any infection and he remains stable. 

I'll try and post an update later with more details of what the plan is this week. 

Thank You!

Thank you so much to everyone who has contributed to our efforts of raising funds for our liver donor, Sarah Beth! Whether it was through a donation or just coming out to the park to show support...either way it was and is greatly appreciated! 

This past Sunday night was a huge success and we're planning on doing another benefit concert this coming Sunday July 25, 2011 6:30-8pm at Grass Park in Brooklin, ON. So come out and enjoy the great music and great people! 

We hope to see you there! 

Saturday, July 16, 2011

Help us Help our Liver Donor!

We are so excited to have my sister, Sarah Beth, be able to give a piece of her liver to our little Bronson in order to save his life. We will never be able to put into words how grateful and thankful we are for her. After she has the surgery she will be out of work and at home recovering for about 4-6 weeks. Sarah Beth's job is a contract position so if she doesn't work, she doesn't get paid. Also, after the surgery she was told that she will be on medications for a couple of weeks and with no benefits and not working for 4-6 weeks that might be difficult. So, we'd like to try and cover her monthly bills along with the cost of medications.

This Sunday July 17, 2011 at 6:30pm at Grass Park in Brooklin, ON we will be holding a fundraiser to help her out during the time she's off work. Sarah Beth has no idea we're doing this for her and we would like to try and keep it a surprise... although if she reads my blog she'll know about it but since it's her last "free" weekend before surgery she's away this weekend and I hope she'll be too busy laying on the beach and tanning to read this!

There will be live music, popcorn, great people and, if it's hot out, there's an ice cream store (Scoops) across the street! So come on out and help us help Sarah Beth!

Details:
Sunday July 17, 2011 at 6:30pm.
Located at Grass Park in Brooklin, Ontario. Just click the link if you need directions!

*** Updated
If anyone is unable to attend and would like to donate to this cause you can do so through a PayPal account and use the email address livertransplant@live.ca! Thank you for helping this cause! :)

Wednesday, July 13, 2011

How Much Fluid?!

I'm starting to get very excited about Bronson's transplant but also very nervous. I'm excited because the transplant is a new start for Bronson... his poor beat up liver that has been through so much is finally getting the boot and he's getting a new nice fresh liver! I'm nervous because of all the obvious complications that come along with any major surgery but, also because every time we think we've got through the worst of it, something else comes along and complicates things. It's gone from small breathing problems and a distended stomach to stage 4 cancer, to chemotherapy, to radiation, to kidney problems, to being septic, to being in isolation, to a partially collapsed lung, and now to a liver transplant. But, so far every one of these things listed I just listed have either cleared up completely, are currently under control (the cancer), or are related to the liver failure... so, in my opinion, there's no reason why the liver transplant can't be added on to the completed and under control list! I think that's a long enough list and we REALLY don't need anything added on to it. 

Bronson really needs this liver transplant sooner than later. Yesterday afternoon Bronson's abdominal girth went up to 46cm from the ascites (fluid in his abdomen) and his respirations went up to 90-110/min (caused by the pressure of the fluid pushing up on his lungs)... both are very high measurements. So he ended up having an abdominal tap last night and they drained a total of.....wait for it.... 700ml!! That's 2.9 cups of fluid! For a baby who only weighs approx. 9lbs thats a LOT of weight to be sitting on top of his stomach! Poor little guy! When I called to see how the tap went I didn't think I had heard the nurse properly when she said 700ml! 

Jon and I haven't received any information about the transplant from Sick Kids yet but my sister has! I think they must contact the donor first and give them the info just in case they start to change their mind... I guess there's no sense in telling the parents that the transplant is a go and then have the donor change their mind and have to tell the parents "sorry, it's cancelled!". So my sister, Sarah Beth (SB for short) was told that the Live Donor Coordinator contacted Sick Kids with a date of Aug. 3 for surgery but they said they needed the transplant sooner than that. So as of right now, according to what I've been told by my sister, the surgery is booked for next Friday July 22, 2011. I'm assuming Sick Kids will tell Jon and I more info and the date once SB meets with the surgeon  and gives her 100% consent. Sooooo  possibly in 9 short days Bronson could be having his transplant done! 

When the day for transplant does come this is how we've been told the day would happen:
6am - SB goes in to the hospital and they start prepping her etc.
8-9am ish - Her surgery would begin
11-12pm - SB's surgery should finish up
11-12pm - Bronson's surgery should begin

We've been told that Bronson's surgery can last anywhere from either 6-12 hours or 8-15 hours.... thats going to be a LOOONNG day of waiting nervously to hear how both SB and Bronson's surgery go. After SB's surgery she'll be in the hospital for approximately 7 days after and then have a recovery time of about 4 weeks. Bronson will be in the ICU until he a) has his breathing tube removed, and, b) is stable enough to be moved out of the ICU and up to a floor. We were told he could come home some where around 4 weeks after the surgery as long as there are no complications. 

Until Bronson receives the transplant I'm praying that he continues to remain stable and stay infection free. If he were to get an infection they would put the transplant on hold until he's healthy again... so, infections, stay away!!!!  

After 9 weeks of Bronson being at Sick Kids and with no time line what so ever, it's nice to have some sort of an idea of when he'll be able to come home... even though it might be another 4-6 weeks it's still some kind of time frame... and then a new chapter of living with a transplant will begin...

Tuesday, July 12, 2011

A Liver Donor!

Bronson has been having some difficulty breathing the last few days because of all pressure from the fluid that's re-accumulated in his stomach. He's most likely having an abdominal tap again today to drain some of the fluid. Once that's done he should be able to breath a lot easier. Over the weekend there was a bit of concern that he had an infection starting and they took blood cultures to confirm. It's almost been 48 hours and they're still negative... So that's a very good sign! (they don't officially say he's clear until the cultures have had 48 hours to grow anything). He just has to remain infection free and stable until his transplant is done.

As you know, after 3-4 weeks of waiting for Bronson's liver to start functioning it was decided that he needs a liver transplant and he was placed on the waiting list. In the meantime, we have been looking at our options to have a live donor be a match for him.

Last week my sister began the process of becoming a live donor for Bronson and had 16 vials of blood taken, an MRI, CT scan, and X-rays done. They told us they wouldn't know the final verdict of whether or not she was a match until after the weekend. After a very looonnngg weekend of waiting we found out today she's a match!!!! We officially have a live liver donor!! There are still a few small things that have to be done but if all goes according to plan the transplant could be done in the next 1-2 weeks (depending on available OR time).

Over the weekend I was trying to not let myself get too excited in case things didn't work out... but now I'm allowed to jump around if I want to! I can't express how thankful I am for what my sister is going to do for my little boy... She's saving his life.

As I write this on my iPhone my adorable little Bronson is sleeping peacefully in my arms and all I can think about is how blessed he is (and we are) to have his aunt be a match and be his liver donor. It's only 11am and we've already had great news today... I hope the rest of the day continues to be just as good! :)

Saturday, July 9, 2011

2 Months Old ALREADY!!!

My little baby is TWO months old today!! :) Happy 2 month old birthday Bronson!! The last 2 months have gone by so fast but at the same time soooo slow. I was really hoping by this time he'd be home... maybe I can hope for him to be home by 3 months old?? But, I have a feeling that Bronson will be more like 3.5 to 4 months old by the time he's ready to come home with us. I guess whatever it takes to get him healthy!

This week the nurses started a Bravery Bead Necklace for Bronson. There's a legend to show what each bead represents and every time he has a procedure or treatment done he gets a new bead added. When he's older he can look at the necklace and see just how many procedures he had done at such a young age. I think it's a great program they have for the kids because it's a way for them to tell others about their treatments. The above link has more information about the program.

I don't know if I mentioned it or not but at the beginning of last week Bronson was moved to yet another floor at Sick Kids. The floor he was moved to is WONDERFUL! Yesterday was the first time I was able to take him for a walk! Mind you, it was only a walk around the unit/floor he's on but I was able to show him off a little bit in the halls..which I haven't been able to do yet! :) I still miss the staff in the NICU but we're slowly starting to get to know the nurses and doctors on his new floor.

Bronson has had a pretty good week... not much has changed. He is still stable which is great for now! Every day I hope to see an improvement in his blood work but so far it's remaining the same. He's still breathing quite fast because of all the pressure his abdomen is putting on his lungs. His breathing is causing him to burn more calories than what he's getting in his feeds so they tried fortifying his feeds (adding formula to his breast milk to increase the calories) but that wasn't enough and so on top of that they've started him back on the TPN (IV nutrients) and lipids (fats). So hopefully this should help him to start gaining weight quickly.

Overall, Jon and I are handling everything pretty well. Obviously we have our rough days, but, for the most part we're doing alright. Since we're handling everything so well I sometimes get the impression that the social worker or nurses think we don't really understand everything that is going on with Bronson. I guess they want us to appear upset?! This week the social worker was asking me questions like, "how do you feel about the transplant" and, "how do you think Bronson's life will be after the transplant". I think I caught her a little off guard because when she asked me how his life would be after the transplant my response was, "Yes, a transplant is a life long thing but it's not like he's getting his genitals cut off. If that were the case then we'd have some issues"... LOL I don't think she'd received that answer before! :)

I'm looking forward to this coming week and hoping we make some progress with a live donor. Please continue to keep Bronson in your prayers as we go through the transplant process.

Sunday, July 3, 2011

Abdominal Tap

Here's a quick update on Bronson for now...

Over the past week Bronson's abdomen has been getting bigger because of the fluid accumulation from his liver not working properly. The increase in fluid was pushing up on his lungs causing mild breathing problems. Yesterday morning (saturday) he was really working to breathe and the dr's decided to do an abdominal tap to remove some of the fluid (he had this procedure done about 3 weeks ago as well). There was some worry about doing the tap because #1 it could introduce an infection and, #2 his blood clotting times weren't very good and could cause problems with bleeding. But last night, after receiving blood products to help his blood clotting, at 7:30pm he went down to have the procedure done. He had no problems with bleeding and they removed 250ml of fluid from his abdomen. The Dr. said there is still about 50ml left but if they removed it all Bronson could have had blood pressure problems because of the sudden total loss of fluid. Until he receives a new liver the fluid will, most likely, keep accumulating but they can do another tap if it's causing more problems. I talked to the nurse this morning and he's much more comfortable and his breathing is much better! So that's good for now! 



Friday, July 1, 2011

Organ Donation

Jon and I haven't been able to go up to see Bronson for two days now because we've both been sick but, Bronson is getting a lot of attention from the nurses on his floor... I guess he's already a lady's man! Bronson's abdomen has been measuring a little bit bigger everyday because of the fluid build up... which is due to the liver problems. Today his breathing became quite laboured and he had to have a chest xray to make sure everything was ok. His oxygen was turned up a little bit and the nurse told me he's been doing alright since then.

Even though he's been placed on the waiting list for a liver I'm still believing that there's time for his liver to start improving. I know it might seem impossible for that to happen but once again, with God nothing is impossible. This Canada Day long weekend doesn't really help for getting the process for a live donor started but at least Bronson is still in a stable condition right now. Once we find a live donor we were told that things could move along pretty quickly. Throughout the process of finding a live donor Bronson's name will stay on the waiting list with the Trillium Gift of Lift Network (they handle all of the organ waiting lists in ontario) until his transplant is officially completed. That way if a liver were to become available through the organization he would receive that one instead of the live donor's.

We learned this week that Canada has some of the lowest statistics of organ donations. I became an organ donor two years ago and I think that everyone should really think about becoming one... Because of the long wait times for transplants, we were told that most people try and find a live donor so that the process is a lot faster. It's sad to think that a lot of people who, either don't qualify or who can't find a live donor end up dying waiting on the list for a transplant.

Being in the situation we are right now organ donation is all of a sudden very important to me. In Ontario it is very easy to become an organ donor and you can go to www.beadonor.ca to find out more information on how to register... all you need is an Ontario Health Care Number. By becoming a donor now you could, one day, potentially save up to eight lives... that's a lot of lives!
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