Sunday, February 7, 2010
long day
Within 12 hours, we went from good news to the bottom of the ladder again back up to a sigh of relief. Its amazing how many ups and downs one can have when it comes to your child.
Good news we began with- there is no significant fluid build up in his lungs and he is peeing more. More pee means less coming out of his chest, which is taking all his nutrients. We are on the right path says the doctor.
Then my parents came down, Mom made cookies again to sweeten the staff up towards Liam, it definitely works.
Bad news mid day-We had noticed a pretty bad bruise on his right arm last week and during the surgery, they used his right wrist for something called the art line, which draws blood from the artery without having to poke him every time. It was actually a godsend since they check labs several times a day. It ended up coming out yesterday, it was quite bloody and I about crumbled when I saw all of the blood all over him. Since it came out, we noticed from the elbow to his fingers were mostly bruised. And his ring and pinkie finger are completely dark. The concern is there might be a cut off of blood to his hand. In addition to all of this, the CPAP on his nose created such a nasal breakdown, it looks like the entire front of his nose has been cut. Its just one freaking thing after another.
They called the plastics fellow, who is from plastic surgery, to take a look. He tells us " I don't think he will lose his hand". Really, is that the bedside manner they teach you? They are going to follow it, ultrasound his arm tomorrow to see if he has any clots causing issues in there. Its just another thing to add on top of it all. With his nose, if it doesn't heal correctly, we may need to do a skin graft about 6 months from now. Seriously, little man is just getting the crap kicked out of him. But the funny thing is, he is being an angel, looking around, showing us a lot of personality.
More bad news which turned out okay- the doctors are getting concerned that the heart isn't the cause of the fluid, which is the main issue he faces right now. The good news is that his heart function looks great, two open heart surgeries later. So of course, we are now at the point of losing it because our son is draining out everything they have given him and they don't know what the cause is. And the doctor we feel best with admitted he is now concerned. So he calls our surgeon who says we just need more time and he thinks it is the original pleural effusions still draining from before his second surgery. That is good news to us and the best news we have had today. If this is something else, it would be heartbreaking. We want this to be treatable and not a big guessing game. As it is, we are going to be here for sometime, in ICU and that's hard enough.
Its been one of those days where we sit here questioning everything, the why of the situation particularly. Less about why us but why Liam, he is so little, pure and just a beautiful little baby. What can be learned through this, there has to be a reason why Liam was chosen. I can't wait to see him grow up and learn why, but these kinds of days are challenging my faith, everything I've always believed in.
Good news we began with- there is no significant fluid build up in his lungs and he is peeing more. More pee means less coming out of his chest, which is taking all his nutrients. We are on the right path says the doctor.
Then my parents came down, Mom made cookies again to sweeten the staff up towards Liam, it definitely works.
Bad news mid day-We had noticed a pretty bad bruise on his right arm last week and during the surgery, they used his right wrist for something called the art line, which draws blood from the artery without having to poke him every time. It was actually a godsend since they check labs several times a day. It ended up coming out yesterday, it was quite bloody and I about crumbled when I saw all of the blood all over him. Since it came out, we noticed from the elbow to his fingers were mostly bruised. And his ring and pinkie finger are completely dark. The concern is there might be a cut off of blood to his hand. In addition to all of this, the CPAP on his nose created such a nasal breakdown, it looks like the entire front of his nose has been cut. Its just one freaking thing after another.
They called the plastics fellow, who is from plastic surgery, to take a look. He tells us " I don't think he will lose his hand". Really, is that the bedside manner they teach you? They are going to follow it, ultrasound his arm tomorrow to see if he has any clots causing issues in there. Its just another thing to add on top of it all. With his nose, if it doesn't heal correctly, we may need to do a skin graft about 6 months from now. Seriously, little man is just getting the crap kicked out of him. But the funny thing is, he is being an angel, looking around, showing us a lot of personality.
More bad news which turned out okay- the doctors are getting concerned that the heart isn't the cause of the fluid, which is the main issue he faces right now. The good news is that his heart function looks great, two open heart surgeries later. So of course, we are now at the point of losing it because our son is draining out everything they have given him and they don't know what the cause is. And the doctor we feel best with admitted he is now concerned. So he calls our surgeon who says we just need more time and he thinks it is the original pleural effusions still draining from before his second surgery. That is good news to us and the best news we have had today. If this is something else, it would be heartbreaking. We want this to be treatable and not a big guessing game. As it is, we are going to be here for sometime, in ICU and that's hard enough.
Its been one of those days where we sit here questioning everything, the why of the situation particularly. Less about why us but why Liam, he is so little, pure and just a beautiful little baby. What can be learned through this, there has to be a reason why Liam was chosen. I can't wait to see him grow up and learn why, but these kinds of days are challenging my faith, everything I've always believed in.
Saturday, February 6, 2010
Snowy Saturday
Liam and Glo-worm have developed a weird ET like relationship. It calms him immediately and he can just stare all day at Glo-worm.
Not much to update- his chest xrays this morning looked better than yesterday which is a positive sign. Doctors think we will be here still for a while until he starts to slow up on drainage, which definitely hasn't happened yet, he is draining 600-800ml a day. I'm getting more anxious to actually hold him and feel his skin against mine, and from the looks of it, he is too. Its hard to get the stares, cries and then, the sigh of defeat from the little man. He has a line that feeds directly into the right atrium and as long as he has that, we can't hold him.
He isn't on much right now in terms of meds compared to last week when we didn't know what was happening to him. Liam has developed some small clots so they have him on Heparin to help thin it out. Because of his chest drainage, he is losing proteins, platelets, etc so they are trying to replace those as they come out but other than just plain IV fluids and some Valium for discomfort, he looks better than he did before the second surgery, which gives us hope. At that time, he had 4 IVs and about 12 different meds going in. We are on one IV and one main line now.
We are starting to climb the walls in the are we ever going to leave sense. Its so hard to watch him, losing weight, not the same personality or spunk as he had when we first came. He is definitely going to need to start eating to get back to his chubby wubby status. Hopefully the doctors will let him start feeding sometime over the next few days, he hasn't had a bottle since last Monday. I prefer my baby with little baby fat rolls! Thanks to all for the prayers..we asked the chaplains here to visit with us as well and we will take the love and thoughts from all.
Thursday, February 4, 2010
Post Op #2
Liam ended up going down to surgery yesterday first with Dr. Spray. We rolled him down in his bed at 7:30am and I asked the doctor if we could at least kiss his head, since we couldn't hold him this time. My parents kissed him, then Alex and I was allowed to hold his head and kiss him. As soon as I did and whispered a few encouraging words, he began crying so hard and tears were just everywhere, between Liam and his parents and grandparents. It about broke my heart. I snuck his teddy bear in and told the doctor Patton would be watching.
We met with Dr. Spray until about 8:15am and he explained what he thought happened. Where the patch was, basically in the corner of the four chambers, instead of blood flowing across the small hole they left, which is absolutely routine, it was going into the upper chambers instead. He wouldn't know until he went in and saw the heart, but would tell us when he was done.
Our group headed to a lounge area and waited. Our nurse came down at 9:15am and told us that they were already in the chest, which was good news because the surgeons had concern with going through fresh tissue so shortly after the last surgery (they usually wait at least 2 months..this was 2 weeks to the day that they had to go back in). They could see the patch and were about to put him on bypass. A few minutes later, Alex's parents arrived.
We weren't expecting another update to about 10:15 when the nurse came back in about 9:40am and said they were done with the repair and just about to take him off the bypass machine. By 10:30am, we were in the consult room waiting for Dr. Spray. He got there about 10:45a, and basically the original patch had the hole as we know but when the heart expanded, it went from 2 mm to almost 5 mm, tearing across. This was causing the exuberant amount of blood flow into his heart and out into his chest cavity. Poor little man. They reinforced his patch with a particular type of stich and he was on the bypass for only 20 minutes. Dr. Spray was very happy with how surgery went.
It took some time for us to see him but he was out of it most of the day. We had a celebratory lunch at Chipotle, yay, no cafeteria food. Both of our sister's came down in the afternoon to see the little guy. Both sets of parents and Alex's sister headed back while Alex, Heather and I just hung out. I even got Heather to do her homework. Success.
He was awake last night around 9 and just was worming around, dancing, trying to move but he was so sedated I don't think he realized he couldn't move very well. Heather and I went back to the Ronald McDonald House around 10 and played Are you Smarter than a 5th Grader and we are not. Oh well.
Overnight, Liam's temp dropped a little bit so he had a warmer for a little while and the doctor decided to leave the breathing tube in to later this afternoon, allowing him to rest a little bit and take some drugs to fight any anti flammatory issues from having a breathing tube. Heather and I are hanging out in the ICU with the patient, Daddy is working out, showering, getting some normal sense of life back. The doctors are letting Liam take it easy and doing a much slower return to normal, which is perfectly fine with us. Thanks again for all the prayers..just need to get through a solid week or 10 days of good recovery, and then I will breathe again.
We met with Dr. Spray until about 8:15am and he explained what he thought happened. Where the patch was, basically in the corner of the four chambers, instead of blood flowing across the small hole they left, which is absolutely routine, it was going into the upper chambers instead. He wouldn't know until he went in and saw the heart, but would tell us when he was done.
Our group headed to a lounge area and waited. Our nurse came down at 9:15am and told us that they were already in the chest, which was good news because the surgeons had concern with going through fresh tissue so shortly after the last surgery (they usually wait at least 2 months..this was 2 weeks to the day that they had to go back in). They could see the patch and were about to put him on bypass. A few minutes later, Alex's parents arrived.
We weren't expecting another update to about 10:15 when the nurse came back in about 9:40am and said they were done with the repair and just about to take him off the bypass machine. By 10:30am, we were in the consult room waiting for Dr. Spray. He got there about 10:45a, and basically the original patch had the hole as we know but when the heart expanded, it went from 2 mm to almost 5 mm, tearing across. This was causing the exuberant amount of blood flow into his heart and out into his chest cavity. Poor little man. They reinforced his patch with a particular type of stich and he was on the bypass for only 20 minutes. Dr. Spray was very happy with how surgery went.
It took some time for us to see him but he was out of it most of the day. We had a celebratory lunch at Chipotle, yay, no cafeteria food. Both of our sister's came down in the afternoon to see the little guy. Both sets of parents and Alex's sister headed back while Alex, Heather and I just hung out. I even got Heather to do her homework. Success.
He was awake last night around 9 and just was worming around, dancing, trying to move but he was so sedated I don't think he realized he couldn't move very well. Heather and I went back to the Ronald McDonald House around 10 and played Are you Smarter than a 5th Grader and we are not. Oh well.
Overnight, Liam's temp dropped a little bit so he had a warmer for a little while and the doctor decided to leave the breathing tube in to later this afternoon, allowing him to rest a little bit and take some drugs to fight any anti flammatory issues from having a breathing tube. Heather and I are hanging out in the ICU with the patient, Daddy is working out, showering, getting some normal sense of life back. The doctors are letting Liam take it easy and doing a much slower return to normal, which is perfectly fine with us. Thanks again for all the prayers..just need to get through a solid week or 10 days of good recovery, and then I will breathe again.
Tuesday, February 2, 2010
Tomorrow
We will be second tomorrow morning for the surgery, first one is slotted at 7 so Liam will probably go around 10am.
We got to see a video of yesterday's procedure showing us the issue today. When they inject the left side of his heart with dye, the right side should not light up at all or minimally. About half, if not more, lights up, meaning that hole is not tolerable and a stitch may have come loose due to the pressures. This extra blood flow causes all the pressures to rise, which is forcing the lymphnodes to leak and the extra blood is then flooding his lungs- before the surgery, he had 80% flow, and should have 100% now. He is at 400% of blood flow which is why his little body cannot get rid of the fluid or breathe well. All is expected to really instantaneously slow down with this surgery.
We got to see a video of yesterday's procedure showing us the issue today. When they inject the left side of his heart with dye, the right side should not light up at all or minimally. About half, if not more, lights up, meaning that hole is not tolerable and a stitch may have come loose due to the pressures. This extra blood flow causes all the pressures to rise, which is forcing the lymphnodes to leak and the extra blood is then flooding his lungs- before the surgery, he had 80% flow, and should have 100% now. He is at 400% of blood flow which is why his little body cannot get rid of the fluid or breathe well. All is expected to really instantaneously slow down with this surgery.
Monday, February 1, 2010
OHS #2
This is not a post we thought we would be writing. The cath showed that the small residual hole they left behind which typically balances out the two chambers has gotten bigger, most likely the patch tore because his pressures were too high. Those pressures are still too high and is causing all the fluid issues and everything else we have seen since Wednesday.
They called our surgeon who is traveling and he thinks Liam is stable to wait until he returns on Wednesday so he can do another open heart surgery to fix the tear. He knows where everything is, why things were done a certain way, etc If something changes between now and then, one of his colleagues will operate immediately.
While this seems like a set back, it is an answer, something we haven't had in almost a week as we have watched our son get worse without cause or knowledge to effectively treat it. Without this procedure, the worst would happen. The risk of not doing the surgery outweighs the risk of the current day to day care. We are both pretty calm and almost excited to see our little guy be himself hopefully by the end of the week. I dread handing him over again but he needs this surgery and I want him to thrive.
Thank God they found the issue and were able to point to something directly and say this needs to be fixed. We were told that would likely not happen. The power of prayer is on our side and that will help us all get through this chapter. Thankfully, only Alex and I will remember this time.
They called our surgeon who is traveling and he thinks Liam is stable to wait until he returns on Wednesday so he can do another open heart surgery to fix the tear. He knows where everything is, why things were done a certain way, etc If something changes between now and then, one of his colleagues will operate immediately.
While this seems like a set back, it is an answer, something we haven't had in almost a week as we have watched our son get worse without cause or knowledge to effectively treat it. Without this procedure, the worst would happen. The risk of not doing the surgery outweighs the risk of the current day to day care. We are both pretty calm and almost excited to see our little guy be himself hopefully by the end of the week. I dread handing him over again but he needs this surgery and I want him to thrive.
Thank God they found the issue and were able to point to something directly and say this needs to be fixed. We were told that would likely not happen. The power of prayer is on our side and that will help us all get through this chapter. Thankfully, only Alex and I will remember this time.
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