Better late than never, here are the pics from Christmas eve I've been promising to post.
Monday, December 31, 2007
Monday Evening, 12/31/07
They moved Nathan back to the floor today. His NG tube was turned off, but it's staying in until tomorrow morning. He went walking with Christa around the pediatric wings. Besides some pain, he had a good day. The output in his diaper continues to increase, which of course means we need to start fighting diaper rash. Christa called on her way home to let me know he was comfortably sleeping when she left.
Better late than never, here are the pics from Christmas eve I've been promising to post.
Better late than never, here are the pics from Christmas eve I've been promising to post.
Saturday, December 29, 2007
Saturday Afternoon, 12/29/07
Nathan's recovery has been progressing smoothly since his surgery on Thursday. His heart rate was very high immediately afterwards (up to 184), but has lowered down to the 120's today. He has had "stuff" in his diaper a few times already, which is great news. He also has a NG tube which also extracts fluid from his stomach, but the output is much lower than when he had the blockage (also good news). They extabated him this morning and he is already talking a bit.
Thursday, December 27, 2007
Thursday Afternoon, 12/27/07
First, I've been meaning to update the blog with updates on Christmas. The pediatric surgery department arranged for a catered dinner from Ruth's Chris Steakhouse on Christmas Eve. They brought a couple of huge filets, a number of side dishes, some chicken strips and fries for Alyssa, a bottle of wine, and a couple desserts. The entire meal was incredible. There were also gifts for Nathan and Alyssa, including a new tricycle for Nathan. Everyone was so nice and really made Christmas a little more normal.
We spent all Christmas Day back here at the hospital. Grandma Linda flew up from Georgia just to spend the day with us. The kids had a great visit with her (and all their new toys, of course). It was super nice of her to fly up just for the day, it meant a lot to all of us.
Now for the real updates...
Nathan's surgery went on as scheduled today. Christa left the house early to get there before they wheeled him off to pre-op. I dropped Alyssa off at daycare around 8am and headed into the hospital. When I arrived they had already started the surgery so we hung out in the atrium. They were hoping to remove the blockage and avoid an ostomy if at all possible.
Around 2pm, the surgeon came up to meet us in the atrium. The surgery went fine, although they had to remove another clump of small intestine that, although it was alive, was continuing to stricture. This was the part of the same length of intestine from the first surgery that was unhealthy, but they were hoping would heal and become usable. He is left with approximately 100cm of small intestine, which should be enough for him if everything starts working again. This process is a very lengthy recovery; he could be on TPN for at least two more years. Fortunately, they didn't need to put in another ostomy. They replaced his G-tube with a larger version that fits the feeding apparatus. He will actually be draining through a NG tube until it (hopefully) starts passing through his bowel.
Anyways, that's all I have for now.
We spent all Christmas Day back here at the hospital. Grandma Linda flew up from Georgia just to spend the day with us. The kids had a great visit with her (and all their new toys, of course). It was super nice of her to fly up just for the day, it meant a lot to all of us.
Now for the real updates...
Nathan's surgery went on as scheduled today. Christa left the house early to get there before they wheeled him off to pre-op. I dropped Alyssa off at daycare around 8am and headed into the hospital. When I arrived they had already started the surgery so we hung out in the atrium. They were hoping to remove the blockage and avoid an ostomy if at all possible.
Around 2pm, the surgeon came up to meet us in the atrium. The surgery went fine, although they had to remove another clump of small intestine that, although it was alive, was continuing to stricture. This was the part of the same length of intestine from the first surgery that was unhealthy, but they were hoping would heal and become usable. He is left with approximately 100cm of small intestine, which should be enough for him if everything starts working again. This process is a very lengthy recovery; he could be on TPN for at least two more years. Fortunately, they didn't need to put in another ostomy. They replaced his G-tube with a larger version that fits the feeding apparatus. He will actually be draining through a NG tube until it (hopefully) starts passing through his bowel.
Anyways, that's all I have for now.
Sunday, December 23, 2007
Sunday Evening, 12/23/07
The lead-up to Christmas has been mostly uneventful. Nathan still experiences the occasional vomit, usually due to a kink in his G-tube. He'll be finished with all of his antibiotics tomorrow evening (the ones he started taking for the infection). Family and friends have been very gracious with gifts for Nathan, Alyssa, and even me and Christa. I'd love to thank everyone individually on here, but I don't think there's enough space in the blog. :)
Christa is going to drop Alyssa off at daycare in the morning and then head into the hospital with a couple bags full of gifts for Nathan and Alyssa. I have some holiday chores to take care of tomorrow, and then I'll pick up Alyssa and head into the hospital for Christmas Eve. We won't be spending the night, but we'll be going back in early Christmas morning.
Nathan is still scheduled for surgery on Thursday. There's an outside chance that the surgeon may have to reschedule due to personal reasons, but hopefully that won't happen. Nathan's pain has been manageable the last couple of days. He didn't need any medication today (typically morphine or toridol). I hope this trend continues.
Christa is going to drop Alyssa off at daycare in the morning and then head into the hospital with a couple bags full of gifts for Nathan and Alyssa. I have some holiday chores to take care of tomorrow, and then I'll pick up Alyssa and head into the hospital for Christmas Eve. We won't be spending the night, but we'll be going back in early Christmas morning.
Nathan is still scheduled for surgery on Thursday. There's an outside chance that the surgeon may have to reschedule due to personal reasons, but hopefully that won't happen. Nathan's pain has been manageable the last couple of days. He didn't need any medication today (typically morphine or toridol). I hope this trend continues.
Thursday, December 20, 2007
Thursday Evening, 12/20/07
The doctors now believe there is no fistula in Nathan's gut. Monday was chaotic, with the surgeon coming in and ordering emergency surgery. After the dust settled and more test results came back, they realized that it was not as urgent as they initially thought. They want to push the surgery back to give him more time to heal.
Since changing from morphine to Toridol, his pain has been under control. He's been very active and talkative, and his vocabulary has been increasing noticeably. While this sounds like an odd thing to note, he's been in the hospital during a stage of his life where vocabulary really starts to take off. Not being in his class surely has had an impact on his progress, but Christa has been taking every step to try and keep him moving along with other kids his age.
The surgeon has scheduled Nathan's fourth (that's 4th) surgery for next Thursday, two days after Christmas. They will be going in to remove the blockage and reattach everything again. There is a chance that they might need to leave an ostomy again, if his intestines are still dilated. Hopefully this will not be necessary. We won't know until the procedure is complete.
One of the nurse practitioners spilled the beans today. They've been planning a very nice surprise for me and Christa. Apparently they're going to order dinner for us on Christmas Eve from Ruth's Chris Steakhouse! I've never eaten there, but I've always heard great things about them. I don't think I've had steak since we went into the hospital, so this is a wonderful surprise. I only wish we could do something for all of the hospital staff, but our finances are really tight and there are so many wonderful people there. Oh, and a big "shout-out" to Lindsey, Nathan's favorite nurse. ;-)
I might have mentioned it before, but I ran into one of the PICU doctors today who made me think about this again. We're routinely asked how we (Christa and I) are doing. It's such a weird question to us, since the act of being here and doing everything we do is completely involuntary. The easiest way to describe what we feel is simply "we don't have a choice". But that phrase carries such a negative connotation; that's not what is intended. It's just that what we do, we do out of necessity. It's not like we think about it, we just do it. You don't have the luxury of making a choice to do any of this each day, you just do. I have a hard time believing this is a unique quality to us, since it would seem to be inherent in all parents. But based on some of the reactions we get and stories we here, I can't help but wonder. I suspect that some of it goes with the inner-city atmosphere. Who knows. All I know is that we just keep plugging away, hoping that today will be the day we have a breakthrough.
Since changing from morphine to Toridol, his pain has been under control. He's been very active and talkative, and his vocabulary has been increasing noticeably. While this sounds like an odd thing to note, he's been in the hospital during a stage of his life where vocabulary really starts to take off. Not being in his class surely has had an impact on his progress, but Christa has been taking every step to try and keep him moving along with other kids his age.
The surgeon has scheduled Nathan's fourth (that's 4th) surgery for next Thursday, two days after Christmas. They will be going in to remove the blockage and reattach everything again. There is a chance that they might need to leave an ostomy again, if his intestines are still dilated. Hopefully this will not be necessary. We won't know until the procedure is complete.
One of the nurse practitioners spilled the beans today. They've been planning a very nice surprise for me and Christa. Apparently they're going to order dinner for us on Christmas Eve from Ruth's Chris Steakhouse! I've never eaten there, but I've always heard great things about them. I don't think I've had steak since we went into the hospital, so this is a wonderful surprise. I only wish we could do something for all of the hospital staff, but our finances are really tight and there are so many wonderful people there. Oh, and a big "shout-out" to Lindsey, Nathan's favorite nurse. ;-)
I might have mentioned it before, but I ran into one of the PICU doctors today who made me think about this again. We're routinely asked how we (Christa and I) are doing. It's such a weird question to us, since the act of being here and doing everything we do is completely involuntary. The easiest way to describe what we feel is simply "we don't have a choice". But that phrase carries such a negative connotation; that's not what is intended. It's just that what we do, we do out of necessity. It's not like we think about it, we just do it. You don't have the luxury of making a choice to do any of this each day, you just do. I have a hard time believing this is a unique quality to us, since it would seem to be inherent in all parents. But based on some of the reactions we get and stories we here, I can't help but wonder. I suspect that some of it goes with the inner-city atmosphere. Who knows. All I know is that we just keep plugging away, hoping that today will be the day we have a breakthrough.
Monday, December 17, 2007
Monday Evening, 12/17/07
The past 4-5 days have been very difficult. Nathan has developed increasing pains in his belly. At first we all assumed it was a normal side-effect of the blockage, but the surgeon is starting to think it may be a fistula developing. He gets very acute pains every 15-30 minutes, enough to make him turn red in agony and sweat profusely. They went ahead and removed some of the staples remaining from the last surgery in case the fistula opens up a passage outside his body. Yes, I imagine this is as painful and gruesome as it sounds.
Originally the doctors came in this morning and decided to proceed with surgery today. After waiting for more scans and test results, however, they decided to wait off and see if the fistula develops. As weird as this sounds (to me, anyways), a fistula would actually relieve the pressure from the blockage, even if it required a makeshift ostomy. At least, this is how the doctor explains it.
Christa and I are having a hard time coming to grips with this. I can't fathom waiting another second longer without performing surgery, dilated intestine be damned. But I trust that the surgeon knows what he's talking about. Come to think of it, I never thought it was possible for anything like Volvulus to happen either.
Originally the doctors came in this morning and decided to proceed with surgery today. After waiting for more scans and test results, however, they decided to wait off and see if the fistula develops. As weird as this sounds (to me, anyways), a fistula would actually relieve the pressure from the blockage, even if it required a makeshift ostomy. At least, this is how the doctor explains it.
Christa and I are having a hard time coming to grips with this. I can't fathom waiting another second longer without performing surgery, dilated intestine be damned. But I trust that the surgeon knows what he's talking about. Come to think of it, I never thought it was possible for anything like Volvulus to happen either.
Wednesday, December 12, 2007
Wednesday Afternoon, 12/12/07
Expecting that they might perform the scan today, I joined Christa at the hospital. It's probably a good thing I did; it hasn't been a very good day. Nathan has vomited a few times already. We went down to radiology around 11:30am to see if there was any blockage. Indeed, there appears to be something blocking where his small and large intestines meet.
Nathan's doctor stopped by afterwards to discuss the results. There is a very slim possibility that the blockage is something that can be expelled by a specialized enema, but it's more likely another stricture of the intestine. The plan right now is first to try and get ahold of the liquid used for this particular time of enema. I don't remember the name of the product, but it has a quality that causes the body to send large amounts of fluid to the targeted area, flushing out the blockage.
Alternatively (and more likely), they will need to perform a colonoscopy to inspect the blockage. If it is a stricture, another surgery will be scheduled. That surgery could happen as soon as the week of, or week after, Christmas.
There are too many unknowns right now to try and predict what's going to happen, when it might happen, or how long the recovery will take. The enema is the first step. If the result is negative (or they can't get the product), then a colonoscopy will probably happen next week. Beyond that is anyone's guess.
Nathan's doctor stopped by afterwards to discuss the results. There is a very slim possibility that the blockage is something that can be expelled by a specialized enema, but it's more likely another stricture of the intestine. The plan right now is first to try and get ahold of the liquid used for this particular time of enema. I don't remember the name of the product, but it has a quality that causes the body to send large amounts of fluid to the targeted area, flushing out the blockage.
Alternatively (and more likely), they will need to perform a colonoscopy to inspect the blockage. If it is a stricture, another surgery will be scheduled. That surgery could happen as soon as the week of, or week after, Christmas.
There are too many unknowns right now to try and predict what's going to happen, when it might happen, or how long the recovery will take. The enema is the first step. If the result is negative (or they can't get the product), then a colonoscopy will probably happen next week. Beyond that is anyone's guess.
Tuesday, December 11, 2007
Tuesday Evening, 12/11/07
Nathan had a good day today, all things considered. He walked around the wing a lot with Christa. Santa also flew in for a visit and brought him a stuffed Shrek doll. He really got a kick out of the jolly fat man (Santa, not Dad).
The surgeon told Christa that they're going to do another contrast scan on Wednesday or Thursday. I have a bad feeling that this is going to reveal the finality of our situation. It's weird to think we're hoping for blockage, but at least that has a chance of being fixed.
If his intestines refuse to work, and he can't survive forever on TPN (I think most people can't), then a transplant will likely be his last chance. There are so few intestinal transplants done each year, it's hard to know what to expect. It's certainly not a rosy picture. At least we have one of the best pediatric transplant hospitals in the country, right here in Baltimore. I hope it isn't necessary.
The surgeon told Christa that they're going to do another contrast scan on Wednesday or Thursday. I have a bad feeling that this is going to reveal the finality of our situation. It's weird to think we're hoping for blockage, but at least that has a chance of being fixed.
If his intestines refuse to work, and he can't survive forever on TPN (I think most people can't), then a transplant will likely be his last chance. There are so few intestinal transplants done each year, it's hard to know what to expect. It's certainly not a rosy picture. At least we have one of the best pediatric transplant hospitals in the country, right here in Baltimore. I hope it isn't necessary.
Monday, December 10, 2007
Monday Evening, 12/10/07
The desensitization went as well as can be expected. Nathan, Christa, and the nurse worked until around midnight on Friday evening. The multivitamin bag was then hung separately, where it remains non-stop. He has responded very well to the vitamins. His intestines are still not working. The surgeon thinks it could be related to the vitamin deficiency, but we won't know until we give it more time.
Our nerves and patience are frayed. This has been a long tortuous ordeal which continues with no end in sight. I try to be strong, but I think the nurses and doctors can sense our mental and emotional exhaustion. It certainly doesn't appear as though Nathan will be home for Christmas. Yet another month/season/holiday come and gone. The only thing that really gives me strength is seeing his smile and enduring spirit every day.
I feel awkward when someone walks up and asks how he's doing. I really appreciate the thoughts and concerns, but I catch myself in a pause trying to formulate an answer. "How's he doing? Hmm. If I say 'good', then they'll think he's doing good. If I say 'bad', then it means he's taken a bad turn. How can I summarize that he's recovering from a vitamin deficiency, but his intestines aren't working, he has a mild infection, he was able to walk a few more steps today, but we're not expecting him home for the holidays... in three words or less?"
The thing is, you never quite know how folks will respond to the details and minutia of a four-month (plus) hospital stay. I've found that it helps to keep it brief, but sometimes it's just not possible. I usually end up stammering for a bit, "uh, well... he's sorta ok, but we're not sure... hmm, yeah, I guess he's not quite as bad as yesterday".
Life goes on.
Our nerves and patience are frayed. This has been a long tortuous ordeal which continues with no end in sight. I try to be strong, but I think the nurses and doctors can sense our mental and emotional exhaustion. It certainly doesn't appear as though Nathan will be home for Christmas. Yet another month/season/holiday come and gone. The only thing that really gives me strength is seeing his smile and enduring spirit every day.
I feel awkward when someone walks up and asks how he's doing. I really appreciate the thoughts and concerns, but I catch myself in a pause trying to formulate an answer. "How's he doing? Hmm. If I say 'good', then they'll think he's doing good. If I say 'bad', then it means he's taken a bad turn. How can I summarize that he's recovering from a vitamin deficiency, but his intestines aren't working, he has a mild infection, he was able to walk a few more steps today, but we're not expecting him home for the holidays... in three words or less?"
The thing is, you never quite know how folks will respond to the details and minutia of a four-month (plus) hospital stay. I've found that it helps to keep it brief, but sometimes it's just not possible. I usually end up stammering for a bit, "uh, well... he's sorta ok, but we're not sure... hmm, yeah, I guess he's not quite as bad as yesterday".
Life goes on.
Friday, December 7, 2007
Friday Evening, 12/08/07
I can tell when it's been too long since my last update. People have read the most recent entry and express their joy in hearing about Nathan's recovery. Unfortunately, things have not been going very well since then. His intestine is still not working as hoped. In addition, he's effectively depleted his vitamins and is in the "hibernation mode" again. They moved him to the ICU this evening for a blood transfusion and will be performing another series of desensitization shots. I know it's very painful for him, but it simply must be done for him to survive. The fact that they're doing this on a Friday night at the hospital, where they routinely "coast" through the weekends, emphasizes the necessity of this procedure. I think the plan is to keep his vitamins and TPN separate to avoid any repeats of the allergic reactions we saw after the last desensitization.
Updates to follow.
Updates to follow.
Subscribe to:
Posts (Atom)
