I do a good job at ignoring the sadness but sometimes it comes on hard. I'm a freaking mess tonight. I can't stop looking at pictures and videos and thinking about all the good times we've had with Nathan. This trip was supposed to be no more than 2 weeks and it's turned into 2 months with no end in sight. I haven't seen Nathan smile since February 14th at 7AM, right before he went into surgery. I usually do a really good job of separating myself from the reality of what's happening. I can talk about all of his problems in great detail without any trouble (as I'm sure you all know by now). But when I start watching old videos and looking at pictures of him it hits home hard. A couple of weeks ago when they were shocking him I literally begged God to take him home that day if he wasn't meant to live through all of this. I can deal with a lot of suffering for ourselves and Nathan if I know he's going to be OK in the end. He didn't die that day so I can only assume he's meant to live and we just need to keep having faith.
I believe so strongly that nothing but good is going to come out of this situation. I truly believe that heart babies can change the world. All of this will make myself and Jessica better people in the end I think. I've always struggled with having empathy for other people and this seems to be changing that. In the past couple of months Jessica has gotten involved on a lot of different heart mom forums and she does an amazing job at giving advice to other parents that are in our situation. She'll wake up in the middle of the night to answer calls from scared parents she doesn't even know, just to listen to them. She's amazing really, I just don't know how she cares for other people as much as she does. And then there's that High School Class "Nathan's fan club" in room 710. They put together an amazing banner and that awesome karate bear and sent them to us. We don't know these kids, but somehow we matter to them. Then we decided to start this blog and it turns out around 400 different people from all over the world are reading it every day. I hope this blog is encouraging people and helping other heart parents. And of coarse there was the heart walk last year that you all made possible. We had the biggest team in AZ and raised the most money for heart disease charities. None of this would have ever happened if it wasn't for Nathan. I can only imagine the great things he'll do in the future.
Aaron
Monday, April 14, 2014
Getting that dreaded call at 1AM
Jessica called me this morning just before 1AM. Nathan was deep trouble. His HR skyrocketed into the 200's again for no reason and during the emergency he had suddenly clotted off his only IV line. They had no access to give him any meds. Jessica said he looked bad, the worst he's ever looked, blue all over. Nathan doesn't have many areas they can put an IV anymore, he has clotted off everywhere you would normally put one. Emergently they put an IV in his bone. The NICU team was then able to place an IV in his scalp as well and gave him some narcotics and sedation meds to knock him out. Then they shocked him. I heard all of this over the phone, him crying, all of the beeps and doctors working, it felt like I was there. Shocking him worked the first time thankfully, it brought his HR back down where it had been all day.
The priority for the day will be to get the IV out of his bone and into a vein. They'll do an ultra-sound of his arms and legs and find a place they can put it. I'm assuming going down to the OR is out until we can figure out what happened and why. The doctors have no idea why he's doing this and it came out of nowhere. The plan had originally been to pull the pacer out yesterday but they delayed it until today for whatever reason. I'm glad they did because I'd like it in there as a backup device in case something like this happens again. It's spring, and on top of that it's the week of Easter. Spring brings renewal, everything heals and comes back to life this time of year. What's going to happen this week? It's not in any of our hands at this point. I'm hoping and praying for Nathan to come back to us.
Aaron
The priority for the day will be to get the IV out of his bone and into a vein. They'll do an ultra-sound of his arms and legs and find a place they can put it. I'm assuming going down to the OR is out until we can figure out what happened and why. The doctors have no idea why he's doing this and it came out of nowhere. The plan had originally been to pull the pacer out yesterday but they delayed it until today for whatever reason. I'm glad they did because I'd like it in there as a backup device in case something like this happens again. It's spring, and on top of that it's the week of Easter. Spring brings renewal, everything heals and comes back to life this time of year. What's going to happen this week? It's not in any of our hands at this point. I'm hoping and praying for Nathan to come back to us.
Aaron
Friday, April 11, 2014
Back to the OR
The latest and greatest...Nathan will be headed back to the OR. As sad as it is to say, these are becoming familiar words. I'm almost to the point of becoming numb to the sting of all of the bad things that Nathan is enduring.
I requested a care conference today. This is basically when all of the different medical divisions that are seeing to Nathan's care (e.g., cardiologists, surgeons, intensivists, social workers, etc.) come together to have a powwow to discuss the next plan of action. The deciding factor was that Nathan's pacemaker needs to come out. They feel that no amount of antibiotics can guarantee that the infection that lurks on the pacemaker can 100% be killed. Thus, it needs to be taken out. The question that remained was, do we need to put a temporary pacemaker in?
The answer is, we don't know. So, they decided to turn his pacemaker off today to see what he could do on his own. They will introduce some new meds to see if that can help the heart rate stay higher. When they turned it off he was maintaining in the 90s. Which is super amazing. However, the downfall is that he spiked a fever today; yes, he has a cold or the flu, because why not?! The fever could be what led to a higher heart rate. So, no one knows if he can sustain a good rate without a pacemaker. Only time will tell. Pending this information, we will go to the OR early next week. The silver lining is that maybe, just maybe his heart is in such a good place right now that it may not need a pacemaker ever again (I'm not holding my breath for this conclusion).
There are so many unknowns at this point. I do know that we are all at our wits end trying to figure out the puzzle that is Nathan. I'm so tired of seeing him suffer and be miserable. I'm tired of not knowing what challenge I'll face with the coming day. There has got to be a limit to how many hardships we'll be weighed down with. For the time being, we will face this new ordeal head on and with no fear. At this point, the time that I will be able to come back home is unknown. I guess we'll just take it one day at a time...slow and steady wins the race, right?
I requested a care conference today. This is basically when all of the different medical divisions that are seeing to Nathan's care (e.g., cardiologists, surgeons, intensivists, social workers, etc.) come together to have a powwow to discuss the next plan of action. The deciding factor was that Nathan's pacemaker needs to come out. They feel that no amount of antibiotics can guarantee that the infection that lurks on the pacemaker can 100% be killed. Thus, it needs to be taken out. The question that remained was, do we need to put a temporary pacemaker in?
The answer is, we don't know. So, they decided to turn his pacemaker off today to see what he could do on his own. They will introduce some new meds to see if that can help the heart rate stay higher. When they turned it off he was maintaining in the 90s. Which is super amazing. However, the downfall is that he spiked a fever today; yes, he has a cold or the flu, because why not?! The fever could be what led to a higher heart rate. So, no one knows if he can sustain a good rate without a pacemaker. Only time will tell. Pending this information, we will go to the OR early next week. The silver lining is that maybe, just maybe his heart is in such a good place right now that it may not need a pacemaker ever again (I'm not holding my breath for this conclusion).
There are so many unknowns at this point. I do know that we are all at our wits end trying to figure out the puzzle that is Nathan. I'm so tired of seeing him suffer and be miserable. I'm tired of not knowing what challenge I'll face with the coming day. There has got to be a limit to how many hardships we'll be weighed down with. For the time being, we will face this new ordeal head on and with no fear. At this point, the time that I will be able to come back home is unknown. I guess we'll just take it one day at a time...slow and steady wins the race, right?
Wednesday, April 2, 2014
Butterflies, rainbows and magical heart fairies
Things are going good. Really good! Too good! People keep coming in the room asking when the other shoe is going to drop. What they've failed to realize is that there is no other shoe. The person wearing the shoes is an amputee and has only one foot :) .
48 hours ago we sent Nathan in for his 5th major heart surgery to replace his pulmonary valve for the second time. After surgery things were immediately 100% better. His heart shrank in size because it's now pumping blood correctly. All of the pressures in each chamber of the heart are perfect. Exactly 1 day later they decided to close his chest and put the pacemaker in. We thought this was highly optimistic because it usually takes a couple of days for the swelling to go down before you can close the chest. He did awesome with the procedure. Now 24 hours after having his chest closed they wanted to switch out the tube they were using to help him breathe to a less invasive tube. They figured since they were taking the tube out anyway they might as well give him a shot to breathe on his own. It was kind of a long shot since he just had a major procedure done yesterday. Well guess what, he's extubated and doing great!
Not sure what to say other than God is good and Dr. Dearani was put on this earth to fix broken hearts. After all of the wild heart rates and shocking over the weekend Jessica and I were both completely sad and starting to give up hope. On Saturday I prayed that Nathan either get better immediately or be taken from us. I can deal with a lot of suffering if I know the end result is going to be good for Nathan but what I can't deal with is him suffering and suffering and then dying. Thinking of him being shocked makes me sick to my stomach. I either wanted it to end quickly or for things to start looking up. Well, prayers answered because he's pulled a 180 and looks better than ever.
I know we have a long way to go and probably some more bumps ahead but for now everything is butterflies, rainbows, and magical heart fairies.
Aaron
48 hours ago we sent Nathan in for his 5th major heart surgery to replace his pulmonary valve for the second time. After surgery things were immediately 100% better. His heart shrank in size because it's now pumping blood correctly. All of the pressures in each chamber of the heart are perfect. Exactly 1 day later they decided to close his chest and put the pacemaker in. We thought this was highly optimistic because it usually takes a couple of days for the swelling to go down before you can close the chest. He did awesome with the procedure. Now 24 hours after having his chest closed they wanted to switch out the tube they were using to help him breathe to a less invasive tube. They figured since they were taking the tube out anyway they might as well give him a shot to breathe on his own. It was kind of a long shot since he just had a major procedure done yesterday. Well guess what, he's extubated and doing great!
Not sure what to say other than God is good and Dr. Dearani was put on this earth to fix broken hearts. After all of the wild heart rates and shocking over the weekend Jessica and I were both completely sad and starting to give up hope. On Saturday I prayed that Nathan either get better immediately or be taken from us. I can deal with a lot of suffering if I know the end result is going to be good for Nathan but what I can't deal with is him suffering and suffering and then dying. Thinking of him being shocked makes me sick to my stomach. I either wanted it to end quickly or for things to start looking up. Well, prayers answered because he's pulled a 180 and looks better than ever.
I know we have a long way to go and probably some more bumps ahead but for now everything is butterflies, rainbows, and magical heart fairies.
Aaron
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