Wednesday, June 29, 2011

Liver details

Bronson has now been on the waiting list for a liver for just over 24 hours. Jon and I met with the transplant team today and, over 2.5 hours, we were given a lot of information. Bronson has two options... waiting for a liver from someone who has passed away, or, having a live donor. For Bronson to receive a liver from someone who has passed away it can be up to a two year wait. With a live donor the wait can be  a minimum of 3 days and up. We're going to explore the possibility of whether or not I would qualify to be a donor because I have the same blood type as Bronson but, because I gave birth only 7 weeks ago I might not be able to.

In our meeting we were told that the success rates for liver transplants are normally quite high, however, with Bronson's neuroblastoma it complicates things. Even though his neuroblastoma is currently under control it still plays a part in the recovery and how the body may or may not take to a new organ. With a liver transplant Bronson would be on medication for the rest of his life and small things, such as chicken pox, would be a huge concern and he would have to be hospitalized and monitored. Obviously, it's a huge surgery and has risks but it would also clear up the majority of his current problems almost immediately. I guess it's like trading one set of concerns for a new set.

Bronson's abdomen is even bigger today. Last night Bronson had to have a respiratory therapist come and assess him because his breathing was getting quite a bit more laboured. He had to have his oxygen turned up quite a bit in order for him to be able to breathe comfortably. Throughout the day he's remained on the same amount of O2 and hasn't needed any adjustments yet. If his breathing continues to get worse they will consider draining some fluid in his abdomen through a tap. But, that will have a high risk of infection which we don't need right now. If Bronson were to develop an infection he would have to be put on hold for the liver transplant until the infection cleared. So we really don't want any chances of infection!

I am still praying for Bronson's liver to start working... but, at the same time, I'm also praying for the right donor to be found. It's a weird place to be in... I don't want someone else's loved one to pass away but, I don't want Bronson to get worse and have other complications. So as we figure things out with a live donor I pray that Bronson will remain stable and will continue to hold his ground.

Tuesday, June 28, 2011

The waiting begins...

From the time Bronson was born his liver has not been working properly due to all the damage from the tumor, chemotherapy and radiation. We've been told for a couple of weeks that the GI team (the liver people) were "optimistic" that his liver would start working slowly. Day after day Jon and I have anxiously waited for the blood work to show the liver starting to improve. For a couple of weeks his liver wasn't getting better or worse - Bronson was holding his own. However, over the last week we've all of a sudden seen a low decline in the liver function. This morning our oncologist gave me the news.... Bronson needs a liver transplant. By late this afternoon Bronson's name was added to the waiting list for a liver as a priority 3 (1 is the lowest and 4 is the highest priority). Now we have to wait. It could be days, weeks, or months. They obviously need a smaller liver because he's so young and small but, if a liver from an adult becomes available they can split it and still use it. We're hoping that a liver becomes available quickly but, it's also hard to think that for Bronson to receive a transplant it means another family will have lost their little boy/girl.

I know I've mentioned in other posts that Bronson's cancer markers are much lower and almost in a normal range. Although he still has tumors and still has some cancer cells, his neuroblastoma is under control. In my opinion everything has worked out in a weird, but kind of perfect, way. Had his cancer not improved he, most likely, would not have qualified to be put on the transplant list. Obviously, a liver transplant is a big operation and it has associated risks and possible organ rejection but, if Bronson has fought this far, there's no reason for him not to make it through this next journey.  I believe that he will be healed... whether it's a miracle from God or with medical technology and doctors. One way or the other he will make it.

Bronson has been a trooper. Other than his liver, he is doing pretty good. Considering the size of his abdomen and the amount of fluid in it, his breathing is still the same and hasn't become worse. The last few days he's been drinking a little bit from a bottle. We're not pushing him with the bottle feeding though because we don't want him to work too hard and then have breathing trouble. So, he's been feeding a little bit from a bottle and then getting the remaining amount through his NG tube.  He is much more alert and awake these days and has the cutest little smile (even if it's from gas!) and expressions. He loves looking around at the toys and mobile I have in his crib. I can't believe that he's already seven weeks old!! 

Bronson still has a long way to go but at least we're that much closer to the end of this journey than what we were seven weeks ago. Please continue to keep Bronson in your prayers as we now begin our wait for a donor.

Monday, June 27, 2011

Life goes on


Life is a funny thing. Growing up most people dream of getting married to Mr. or Mrs. Right, having 2.3 kids, driving an SUV (because vans are what we think old, uncool parents drive...even though that's what most people end up driving and loving - I wouldn't trade my van for anything!), and we think that life will be perfect. We never think about how life changing events, disasters, illnesses, deaths or other situations will impact our lives. Everyone thinks that the "bad" things only happen to other people.  

Thinking back to only 5 years ago I had no idea what life would throw my way. But, I wouldn't change a thing. I believe that every situation we go through makes us that much stronger and wiser and will usually gives us a new outlook on life. Regardless of how we handle these situations life still moves on around us. 

When Bronson was born in May the grass was just turning green and the trees were just budding. I feel like I've missed an entire season because, for the last seven weeks, I've been inside at the hospital six days a week. I would love to know how much longer Bronson will be in the hospital for because, honestly, I'm exhausted! Looking back to seven weeks ago I don't know how I managed to leave the hospital only eight short hours after giving birth and then drive up to the hospital to see Bronson at Sick kids. In seven weeks I haven't stopped. Even though my world has been on hold everything and everyone around me has kept moving forward. In this short time our daughter, Kallie, has started walking and all of a sudden has a full mouth of teeth. Time is going by way to fast.
Yesterday Jon and I brought Kallie to see Bronson. It was only her second time seeing him (her first time was the day he was born) and since she's only sixteen months old she was more interested in trying to poke his eyes out and steal his soother! But we were able to get some cute pictures of them together... finally! I'll try and post some later on.

I really hope that this chapter of our lives, that consists of commuting to the hospital every day, is almost over. I would love to be able to enjoy a little bit of summer without having to rush out of the house every morning to try and catch my GO train. I want to be at home with both of my babies under the same roof. I know that day will come soon but I'm running out of patience! 

Saturday, June 25, 2011

Goodbye NICU!

As of yesterday, Friday, Bronson is officially out of the NICU!! Woohoo!! The NICU has a great team of health care professionals and it was sad to say goodbye but also great to move on! So, thank you NICU staff you've been wonderful! :)

Originally Bronson wasn't going to be moved until he was slowly weaned off his sedative but, he was down to s small dose and it was decided to stop it all together and see how he handled it. And, so far, he hasn't had any withdrawal symptoms or problems from being off of it.

Bronson is still having problems with his liver and we're still waiting for it to start functioning properly but, at least he's out of the NICU and one step closer to coming home!  I would love to have some sort of timeline as to whether we have to wait days, weeks, or months and this next week should bring answers.

Two days ago Bronson had some fluid accumulate in his stomach again but, so far, it hasn't caused any of the breathing problems like it did two weeks ago. Last time they did a tap to drain the fluid but because it's currently not causing any other problems they're going to leave it. A CT scan from earlier this week showed  that his liver and adrenal glands have shrunk a little bit more since the last scan was done - which is great news!  Bronson's still on a little bit of oxygen because of the pressure from the size of his liver but his need for oxygen is becoming less.

As I already mentioned, this coming week should give us some answers and hopefully some sort of timeline. Please continue to keep Bronson in your prayers for his liver to start functioning, because he still has a ways to go.

Tuesday, June 21, 2011

A very mellow yellow baby

Bronson is 6 weeks old today! I can't believe how fast time has gone by. Now that he's getting older I've noticed that he's more alert and awake throughout the day when I'm there. I love being able to watch him look around and check out his surroundings. He's starting to make the funniest expressions... even if it is gas, I think it's cute!

Today, I had him up in his bouncy chair for a little while. I turned on the vibrating seat for the first time and his eyes almost popped out of his head... he was NOT expecting that! But, he did end up liking it! I held him for just over two hours and he was so content in my arms. Besides his bronze coloured skin and his florescent yellow eyes, due to his high bilirubin levels, he is looking really good! I keep joking with the nurses that if they turned out the lights his eyes would glow... poor Bronson! The doctor told me today that even though his bilirubin levels are high and are causing him to be yellow they won't cause any long term damage/concerns. Bronson's liver function tests remain very high but, once again, they haven't gone up or down. He's still holding his own.

I got some clarification today as to why Bronson was switched from the normal GI team over to the GI transplant team. As of right now there are no plans for a liver transplant but, because it's the transplant team who would make the final decision for it to happen it's better for them to be following Bronson's case opposed to the normal GI team who, if a transplant was needed, would have to transfer him over to the transplant team anyways. Bronson had all of his transplant blood work done a week or two ago just to ensure that everything is in place in case they need it... But I'm still praying that his liver will start working and we won't have to worry about a transplant.

Today we were told that Bronson's status is no longer acute and he no longer needs to be in the NICU! He was supposed to be transferred up to a new floor tonight but, because he is still on some sedatives they felt more comfortable waiting for him to be totally off of them. So, as long as nothing else happens or changes, early next week he should be out of the NICU! Hearing that was the best news of the day... I love the staff in the NICU but I'm ready for Bronson to move on and eventually come home! :)

Monday, June 20, 2011

Short update

Another day and still no changes to Bronson's liver. His liver blood work was about the same today...still not worse and still not better. He was transferred from a normal GI team to the GI transplant team in case a liver transplant is needed. As of Thursday I was told that the GI team was "optimistic" that his liver would start improving and then today he was switched to the GI transplant - so I'm a little confused if they're still "optimistic" or if they're now seriously considering doing a transplant. I left the hospital just before all the doctors and their teams did their rounds so hopefully tomorrow I'll have some answers about that.

On the bright side I got to hold Bronson for almost 3 hours straight today! He was awake and looking around for almost the entire time too! He's such a little cutie and is looking so much better! Today I noticed that he has some stubble growing on top of his head - woohoo his hair is growing back slowly! :)

I just hope tomorrow I can get some answers!

Sunday, June 19, 2011

Father's Day

Father's Day might not have been how we imagined it to be with commuting to the hospital but, it was still a good day! It was Jon's turn to speak at church (he's a pastor if I haven't mentioned that) and he spoke a little bit about our journey with Bronson and, in my opinion, it was a pretty good message! :)

When we got to the hospital to see Bronson this afternoon he was relaxing in a swing and looked so peaceful and comfortable. His need for oxygen has been improving and I'm hoping that he'll be able to come off oxygen all together in the next few days... I hope that the doctors agree! In terms of feeding he is now up to the full amount that he should be at for his weight and was taken off of the TPN (IV nutrients) on Friday! He hasn't been real thrilled with the bottle feeding and has had some problems with the sucking so he is receiving almost all his breast milk through an NG tube... but at least he's tolerating the milk alright! For a while Bronson's liver blood work had plateaued but around Wednesday of this past week Bronson's liver blood work began getting worse. However, yesterday's and today's it remained in about the same range (up or down by 1 or 2). So, although today it wasn't any better, it also wasn't any worse. Which, depending on how you look at it, is a good thing. I'm really hoping that this is the week that his liver starts getting better. I know I say the same thing every week but it has to start getting better at some point.... and that point is this week!

"If you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you." 
- Matthew 17:20

Friday, June 17, 2011

The Liver is a stubborn organ

Jon and I took the day to relax (much needed!) and didn't go up to the hospital today but here's a brief update....

Bronson is doing really well in terms of his breathing (he's currently on the least of O2 since being born), feeding and kidney function. As of right now the main concern is still the liver. 

Last week Bronson's liver function blood work had plateaued and some of them had even started to get better. However, this week his liver blood work numbers have constantly been going up  and getting worse. As of yesterday the GI team said they were still optimistic that his liver would start improving... So that was good to hear... But that was yesterday and his numbers shot up a lot today. We still don't have any clear cut answers from the GI team as to why the liver isn't improving. I wish they could give us an exact number or cut off as to when they would seriously consider a different treatment or a transplant. But, they make their decisions on an individualized basis and right now they're saying wait. We really don't want things to go in the direction of a liver transplant though because an oncologist told us that on one case he had that was similar to Bronson's a transplant was needed and the baby didn't make it. So, we'd really like this liver to start working!

The pictures that I've taken of Bronson really show how much progress he's made... I posted some on my fb last night but for those who aren't on my fb, or don't have fb at all, I will try and remember to post some on here later on tonight. 

Wednesday, June 15, 2011

Woohoo!

We received some excellent news today! When Bronson was first diagnosed with neuroblastoma his cancer markers were around 240 and, as of last week, his markers are now in the mid 20's. We were told that, for the average person, these markers should be in the high teens to low 20's. So today I wanted to make sure I understood the numbers properly because, to me, I would assume that since his markers are in the mid 20's the majority of his cancer is gone. The oncologist told me that the tumors are still there but they are a lot smaller and the majority of them are dead tissue and will continue to shrink and dissolve as time goes on. So, yes, the cancer is mostly gone! In babies this kind of cancer can spontaneously disappear with no further implications, as far as cancer goes, in the future. So, in terms of cancer, Bronson is doing great!!!

However, the oncologist also said that, although the cancer is gone, the side effects and damage done by the cancer are still present. Which, we are aware of because of all the problems and concerns we continue to have with his liver. We really really really need this liver function to get a jump on things and start working. Once his liver is up and running then the jaundice/bilirubin levels should go back to normal, his lack of blood clotting should clear up, and the fluid in his abdomen should also go away.

Bronson was very comfortable and didn't appear to be in any pain today. He's been on the lowest amount of oxygen I think he's been on since he was only a couple of days old. His stomach measurement that was up to to 42 cm yesterday was down to 36 cm today! I was told that since he is doing better and isn't experiencing pain as he was earlier in the week, they are going to try to SLOWLY wean him off of the morphine and sedatives over the next week or so. At the beginning of last week he was almost off of them completely but, when he started to get worse they had to be put up to higher doses than what he was on originally.

So, all in all it was a very good day.... we just need this darn liver to start improving!!!!!

Tuesday, June 14, 2011

I hate the liver!

Bronson had a much better day today! First of all, I finally got to give him a bath! He's received lots of baths from the nurses but they always seem to do it at night when I'm not there, but, today it was my turn! It hasn't been that long since I've bathed a newborn, since my daughter is only 15.5 months old, but with all of the monitor lines, oxygen tubing, PICC and NG tube lines I was a little bit nervous that one of the lines would get caught or come out. I find it hard to move him around easily with everything attached to him but the nurses are accustomed to all of it and they just flip the babies around like it's nothing! 

Last night Bronson was actually calm and quiet and slept most of the night for the nurses - which is a huge improvement after the last couple of nights he's had. Bronson's breathing improved a lot overnight and this morning he was taken off of the CPAP and switched to nasal prongs with oxygen. He's been tolerating it all day with no problems! Woohoo! I hope we don't have to go back to the CPAP any time soon.

I'm getting frustrated with hearing different stories from different members of the health care team. Yesterday I was told that although Bronson's liver has very low function it's not in the range they would consider "failing". I know that "low functioning" is still not great but the fact that it's not "failing", in my opinion, is great news. However, his liver function tests continue to get worse and his conjugated bilirubin levels are almost as high as they were a couple of weeks ago. I believe that the normal level for conjugated bilirubin is supposed to be 0 or somewhere around there. Bronson's conjugated bilirubin levels were coming down and were as low as 210 (which is still VERY high) but today they're back up to 280. The bilirubin is broken down by the liver and then removed by the body (you poop it out!). So, along with the other blood work associated with liver function,  these levels are very high and show that the liver really isn't functioning properly or even close to how it should be. Bronson still has fluid build up in his abdomen (also associated with the liver function) but it appeared to be down  a little bit today according to his abdomen measurements. We're still praying for his liver to jump start and to get things functioning as they should be. Once his liver starts functioning as it should all of the other problems should clear up...I'm really starting to hate the liver! 

Also, I almost forgot to mention that Bronson got moved into a crib today which gives him a lot more room. Compared to almost all of the other babies around him, who are all preemies, he's getting to be so big! I think at the beginning of the week he was weighing somewhere around 8lbs 12oz and they think that this measurement is more of his true weight because he's lost almost all of the extra fluid he was holding onto for so long. 

I keep telling myself that we've come so far from where we were but, we also have a far ways to go.... One small victory at a time....One day at a time... We'll get there soon!

Monday, June 13, 2011

Five weeks later...

As I sit here and look at my little boy sleeping in my arms I can't help but think of how lucky we are to have him. Five weeks ago today we started this journey and had no idea what was in store for us. I'm sure that there have been many times we would have lost him if it wasn't for the quick decisions that had to be made by his doctors. I also know that God has brought us this far and will continue to bring us through this situation. 

Bronson looks so peaceful laying in my arms asleep. I haven't been able to hold him for a couple days and it's good to have him in my arms again. I often wonder what is going through his mind and if he gets scared or anxious whenever he sees a doctor or nurse coming towards him.  Sometimes when he looks at me it's as if his eyes are saying, "Help me, I want to go home". After going through everything that he has I hope he doesn't grow up being afraid of doctors or nurses because they really are wonderful here. 

I just had a doctor from GI come by and she told me that although he has low liver function it's not failing. Even though his liver function blood work is up somedays and down others he's been more or less holding his own, which is a good thing I was told. It shows that his liver isn't getting any worse than what it is... Now it just needs to get better! 

Bronson is having an alright day. He hasn't become any worse or better since the last update I posted yesterday. He's just enjoying a good cuddle from his mama today! :)

Sunday, June 12, 2011

It's a New Week

Today is Sunday which means it's the beginning of a new week. I am hoping and praying that this new week will come with good news and more good news. I want to be able to find out what has been causing all of Bronson's breathing problems, liver problems, and in the last two days all the pain that he has been having. 

For the last two nights Bronson has been awake crying, angry and inconsolable and has had to have his morphine and sedatives increased to help him calm down. It's hard to see him so uncomfortable and not know what is wrong and not be able to make him feel better. He's been able to sleep throughout the day but, from what the nurses tell me, the nights are a different story. 

From what I've been told, Bronson's breathing hasn't improved but hasn't become worse since Friday. His bilirubin levels, which have been VERY high and were starting to come down earlier last week, are now on the rise again. We have one very yellow baby and the only way to make these bilirubin levels come down is to treat the underlying cause - which brings us back to the ever present problem of his decreased liver function. 

I keep telling myself that we WILL receive good news this week and that Bronson will start improving. I honestly don't know how many more complications or infections I can stand to hear about. Bronson has showed us how much of a fighter he is and I know that he will continue to fight. I am on the sidelines, along with so many others, cheering him on and he WILL win!

"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Isaiah 40:31 

Friday, June 10, 2011

One Day @ a Time

I left the house 12.5 hours ago and just walked in the door and am exhausted! Just a quick update tonight for those wondering how Bronson's day was...

First of all, some good news! Bronson's markers that show the cancer levels have improved! They were in the 200's when he was first diagnosed and now they are in the 20's - with somewhere in the low 20's being "normal"! He still has the tumors but they can continue to shrink over time.

I mentioned in my post last night that Bronson had a partially collapsed lung and was having difficulty breathing and had to be put back on CPAP. This morning he had an x-ray done and it showed that his lung had re-inflated and there was no more collapse. However, he has continued to have breathing problems throughout the day and has been requiring a more oxygen. His abdomen is measuring a little bit bigger again and an ultrasound showed a "moderate" amount of fluid has accumulated again. The doctors aren't sure what is causing both of these problems but they are a MAJOR concern. It was thought that with the fluid drained yesterday the breathing would get better but, it's still getting worse. They are beginning to think that the breathing issues are a separate issue and not connected to everything else that is going on. I'm really praying that's not the case! There is still the chance that if his breathing continues to worsen over night he will be getting another breathing tube. There isn't any evidence of an infection yet but that still could be a possibility... and certainly don't need any more infections.

With all of the problems right now a liver biopsy would give the doctors an idea of how to continue treating him however, Bronson is not stable enough to have that procedure done. Let alone, be able to deal with all of the risks associated with it.

Bronson has been quite uncomfortable yesterday and today and has had to have his morphine and sedatives upped in dosage. I hate seeing him look so uncomfortable.

I know that we have excellent doctors, nurses and other staff at Sick Kids looking after us but please pray that they find out what is wrong with Bronson! I know that God is bigger and he can overcome all of these problems - so I continue to give it to Him!

Thursday, June 9, 2011

"Love you Forever"

This week has felt like a roller coaster. On Monday and Tuesday Bronson was content, comfortable, and things looked as though they were getting better but, then Wednesday came along. On Wednesday Bronson started to have some complications with fluid building in his abdomen and he was struggling to breathe due to the pressure. This morning Bronson had a tap done to drain the fluid from his abdomen. A total of 150ml was drained from his stomach and it was thought that this would alleviate the pressure in his abdomen and allow him to breathe much easier... not exactly what has happened. 

Little by little this afternoon Bronson has required more and more oxygen. All day we had no answers as to why his breathing was getting worse if the pressure in his abdomen was now gone. We just received word that an x-ray showed that his lung is partially collapsed. He has been put on CPAP for now to help with breathing but if he is still having problems and is uncomfortable he will be getting a breathing tube put in tonight. We're not supposed to be going in this direction... We're supposed to be moving forward and seeing lots of progress... Why do we have to go backwards?

Bronson's liver continues to be a problem. There are no specific answers right now as to what is causing the fluid in his stomach other than the answer we continue to hear - it's something wrong with liver function. One of the doctors told us today that at this point the main focus is not on the tumors or cancer but, instead, figuring out why Bronson's liver function is not up to par. There have been talks of Bronson having a liver biopsy for a while now and that is supposed to give us the answers we're looking for. However, he hasn't been stable enough to have the procedure done. Tomorrow morning the doctors are meeting to decide whether or not to go ahead with the biopsy.

When I got home tonight I couldn't help but look into Bronson's room and picture him laying peacefully in his crib. He should be at home with us instead, he's in the hospital laying in his little bed all by himself listening to the constant beep of monitors and of babies crying. I know that in time he will be home with us but that's not good enough to me... I want him home now. All I can think of is a line from a popular children's book because no matter where my baby is or what happens - my baby he'll be. 

"I'll love you forever, I'll like you for always, 
As long as I'm living my baby you'll be." 
      -  "Love you Forever" by Robert Munsch

Wednesday, June 8, 2011

Five steps backwards

After a few days of improvements and steps in the right direction I feel like today we made 5 steps backwards. When I called first thing this morning to check up on Bronson he was a little uncomfortable but that was it. Two hours later when we arrived at the hospital Bronson had very labored breathing and his stomach was very firm and measuring larger in size.

This evening a few of the doctors met and it was decided to have a drain put in and out if his stomach to get rid of all the excess fluid. This procedure is planned for tomorrow morning at 9am.

Bronson's breathing problems are directly related to the pressure from the fluid in his stomach and the fluid build up is caused by the low liver function. Draining the fluid is only a temporary fix for now until they figure out the cause. The team is not sure whether the liver problems are caused from a new infection, the radiation, tissue damage or from the tumor that is still there.

It's so frustrating seeing Bronson make progress and then have days like today where everything changes so quickly. I hate seeing him breathe so hard and look so uncomfortable. No mother likes to see her child in pain and not be able to do anything about it. I am praying that overnight he doesn't get worse and will not have to be intubated or have any other complications. I pray that tomorrow is a better day than today.

Quick update for now

Just a quick update for now until we know more...

Bronson is not having a great day. Overnight his stomach has become more firm and a bit more distended. He is having quite a difficult time breathing and may have to be intubated again. His blood work related to liver function is s little worse today as well. Please pray that this isn't anything serious and they figure out what's going on.

Tuesday, June 7, 2011

It's bottle time!

Initially when we were told that Bronson was being airlifted to Sick Kids I was worried about having to drive up there for possibly only 3 days. Here we are 4 weeks later and driving/commuting to Sick Kids has become a normal part of our routine. I would love for the commuting to stop and for Bronson to come home but considering all of the IV meds and care he still requires it might be quite a while before that happens. 

I spent yesterday at home with our daughter while my husband went up to see Bronson by himself. I missed seeing him but our daughter needs one on one time as well. Yesterday afternoon Jon told me that the Dr. wanted to try pushing Bronson a little more and wanted to see how Bronson would do drinking from a bottle! Up until last week he had only been receiving IV nutrients. Last week he was started on a very small amount of milk through his NG tube (along with his IV nutrients still) and has been tolerating it very well. Bronson was supposed to start with a bottle yesterday but there was a hold up with the staff but, in my opinion,  it worked out great because that means I can be the one to give him his first bottle today! 

Last week it was mentioned to us that if Bronson's liver didn't start picking up function he may need a liver transplant. Jon was talking with the doctors yesterday and at this point it's not something they're planning on because his liver is very very slowly picking up function. But, to make sure all the bases are covered they took blood work yesterday to get everything in order just in case a liver transplant is still needed. I'm believing it won't come to a transplant and his liver will pick up all of a sudden. Bronson has surprised us so many times already with improvements and so I'm hoping this will be the same case. 

As frustrating and as hard as it can be having a baby in the NICU fighting cancer I'm glad that we live close enough to be able to commute and see him everyday. I've heard of some families who are from other provinces or even other countries and I couldn't imagine how hard that would be so far away from people who support you such as family and friends. Although it takes me an average of 2 hours on transit to get to the hospital at least I can be there to hold him and see him accomplish milestones such as drinking his first bottle today! 

Sunday, June 5, 2011

Cuddle Time

I just spent an hour holding my baby - it was wonderful! Since last Tuesday we've had the opportunity to hold Bronson every time we've gone to see him! I love it!

There haven't been any huge changes to his health status from the last time I posted an update. He is doing great breathing with just nasal prongs and low flow oxygen, kidneys are still functioning up to par, and his WBC count is still up! We are still waiting for his bilirubin levels and blood clotting levels to improve but hopefully we will see that this week.

The past 3.5 weeks have felt like an entire year has gone by. It felt like we were waiting forever to start to see Bronson make some progress and then all of a sudden within a couple days we were getting a lot of good news. Right now, while we're waiting for Bronson's liver function to improve, it feels like forever again. But I'm praying that one day his liver will all of a sudden start functioning as it should, his blood work will be normal and his cancer will be gone. To the doctors and nurses it may look like Bronson has a long way to go but I know that with prayer and God on our side amazing things can happen!

Now that we've been able to hold Bronson I think the next step should be to bring him home!

Thursday, June 2, 2011

Short update..

Just a quick little post tonight...

When we got to the hospital this morning we were told that Bronson was being moved out of isolation and into a bigger room in the NICU with other babies! So that means Bronson's immune system is getting better or else he wouldn't have been moved out of isolation! His WBC count is now in the "normal" range.. on the low range of normal but thats ok!

This afternoon they were going to try and take the CPAP mask off and change him over to just oxygen through nasal prongs. That is a HUGE improvement from last week! So hopefully he will do ok with it, if not he'll just be changed back to CPAP for a little while more.

His liver function is still very low and he is still having problems with his blood clotting times taking much longer than normal, as well as his conjugated bilirubin level being too high. So please continue to pray that his liver function starts picking up and that his liver, lymph nodes and adrenal glands will continue to shrink and become cancer free.

Other than being a very yellow baby from the jaundice, he is looking much better! :)

Wednesday, June 1, 2011

One victory at a time

The past few days have been filled with some small steps in the right direction and some big steps in the right direction. As I wrote in a post earlier, I really don't care how big or little each step is just as long as it's going in the right direction. Jon and I get excited and celebrate every little victory we can!

Today we got some excellent news along with a few new concerns. First of all the exciting news...Bronson had a CT scan done and this afternoon we found out that his liver and adrenal glands have shrunk significantly! Hooray! Up until now the oncologist has been pretty certain that a second round of chemotherapy would be needed, but, we were told today that now they're not 100% sure if it will be needed! It's still up for discussion and debate among the doctors so we will see what happens! I'm certainly praying that it won't be needed!

This morning we were told that Bronson has had some problems with his blood clotting and conjugated bilirubin levels that have continued to go up. We were initially told that these two problems should improve as his liver shrunk because they are controlled/filtered by the liver. The doctors seem to be very concerned about both of these problems because, although the liver has shrunk, it's still not functioning as it should. So the doctors are wondering if there is another underlying problem causing this. We are praying this isn't the case. That's all we need is ANOTHER problem to face.

In the past week we have seen so many improvements. Bronson's breathing has made considerable progress, his kidney's are functioning much better, he's peeing tons, his WBC count has gone up, his infection is starting to improve, his blood pressure has got better and today we heard that both his liver and adrenal glands have shrunk. I won't lie, I got frustrated and a little discouraged hearing that now we have another problem with his liver function. But I had to remind myself just how many prayers have been answered this week. Things may still be critical for Bronson but we have seen him fight and win some battles. I have to remember that we are still in God's hands and fixing a liver is just a minor repair for him.

So please pray that Bronson's liver function will all of a sudden return to normal and that it will be just another thing that we can add to our list of victories!
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