It occurred to me tonight that Nathan has never seen this blog, much read any of the stories. I'll make a mental note to make sure he does... one day... but for now this seems like a great time (albeit long overdue) to update everyone on his progress.
Nate has been doing very well as the years have progressed. He's far less dependent on medicine and supplemental calories than ever before. Last month we found out that he's lactose-intolerant, so we've had him taking Lactaid pills before dairy. Small discoveries like this have helped us adjust his diet to a point where he's steadily gaining weight.
He's been very active in sports and other activities. He played baseball for a few years and started playing soccer last year. This summer I started taking him to the driving range to hit golf balls; he loves the sport so we even got him his own set of clubs and he started taking lessons. In his second round on a real golf course he even got his first honest-to-goodness birdie!
Here's a short video I took from the driving range today. He's still building up distance but he has a pretty nice swing to work with.
Sunday, July 26, 2015
Sunday, August 9, 2009
Who is Nathan?
Nathan Daniel Dixon was born February 17, 2005. He's a handsome little boy with blonde hair and hazel eyes. He loves trucks, trains, and basically anything with wheels. He's the younger sibling of Alyssa Marie Dixon, his 5-year old sister. And up until the morning of Saturday, August 4 2007, he was very much like any other 2.5-year old boy who likes to run around and cause trouble.
Shortly after noon on Saturday, August 4th 2007, we (my wife Christa, our two kids and myself) headed out to run some errands. Not even 10 minutes later, the scariest event in my life began to unfold. This blog is the journal of my son's fight with the birth defect known as Intestinal Malrotation and the condition it can cause named Volvulus. Although the primary goal of these writings are to communicate the state of Nathan's recovery to his family and friends, I hope that others who are unfamiliar with this defect (as I was) will be better prepared to identify and react to the symptoms it presents.
Shortly after noon on Saturday, August 4th 2007, we (my wife Christa, our two kids and myself) headed out to run some errands. Not even 10 minutes later, the scariest event in my life began to unfold. This blog is the journal of my son's fight with the birth defect known as Intestinal Malrotation and the condition it can cause named Volvulus. Although the primary goal of these writings are to communicate the state of Nathan's recovery to his family and friends, I hope that others who are unfamiliar with this defect (as I was) will be better prepared to identify and react to the symptoms it presents.
Monday, March 16, 2009
One Year Later
From time to time I find myself in a conversation where the other party mentions a loved one being hospitalized. On the rare occasion that Nathan's experience comes up, I point listeners to this blog. Today was one of those times, and I noticed it's been almost a year since my last update.
Nathan is progressing slowly. He's doing well enough. We're very grateful to have him home. In fact, he's only been back (admitted) to the hospital twice, both times because of a vitamin deficiency. He's off his enteral feeds for up to 6 hours each day. He visits daycare during the mornings. This is more for the social aspect than because of our work schedules. Christa is still a stay-at-home nurse/mom, and she's doing a bangup job.
We would love to see Nathan permanently off TPN and IV, but we're still balancing his ability to digest with his needs to get back to some normalcy. He lacks any desire to eat when he's on TPN. We're hoping to increase his daily schedule to two boluses which would allow him to be "off tubes" for 8 hours a day.
The insurance nightmare I mentioned last year has been resolved. In hindsight (for me anyways), it seems like a distant memory. For months we were under a constant onslaught of insurance denials and collection calls from the hospital. We submitted appeals to each insurance company and to the Maryland Insurance Commission. Finally we began to see a breakthrough, and everything appears to be settled now. We're very grateful for everyone's support, and very relieved that we didn't have to go to court.
I don't know if anyone reads this blog anymore, but at least this post should serve as some sort of closure over the events I've detailed during our ordeal. The next time I direct someone to this link at least they'll be able to infer that we've come to some sort of satisfactory conclusion.
Nathan is progressing slowly. He's doing well enough. We're very grateful to have him home. In fact, he's only been back (admitted) to the hospital twice, both times because of a vitamin deficiency. He's off his enteral feeds for up to 6 hours each day. He visits daycare during the mornings. This is more for the social aspect than because of our work schedules. Christa is still a stay-at-home nurse/mom, and she's doing a bangup job.
We would love to see Nathan permanently off TPN and IV, but we're still balancing his ability to digest with his needs to get back to some normalcy. He lacks any desire to eat when he's on TPN. We're hoping to increase his daily schedule to two boluses which would allow him to be "off tubes" for 8 hours a day.
The insurance nightmare I mentioned last year has been resolved. In hindsight (for me anyways), it seems like a distant memory. For months we were under a constant onslaught of insurance denials and collection calls from the hospital. We submitted appeals to each insurance company and to the Maryland Insurance Commission. Finally we began to see a breakthrough, and everything appears to be settled now. We're very grateful for everyone's support, and very relieved that we didn't have to go to court.
I don't know if anyone reads this blog anymore, but at least this post should serve as some sort of closure over the events I've detailed during our ordeal. The next time I direct someone to this link at least they'll be able to infer that we've come to some sort of satisfactory conclusion.
Thursday, March 20, 2008
Looking for Help
Beyond everything else we've experienced, we now have the insurance company refusing over $300k in claims dating back to August. There was some confusion over our insurance cards when Nathan was first admitted to UMMC, and it wasn't until October that we were informed the wrong cards had been submitted. The claims have since been batted back and forth between UMMC and MAMSI, and now both sides are refusing blame and dumping the bills on us.
MAMSI has never denied that our son was covered for these procedures. They are refusing the claims solely on the basis that the hospital hadn't submitted the claims to them in a timely manner. The hospital is claiming that we never gave them the correct insurance information (we did after we were informed they had the incorrect cards... months later). We need some professional representation, this justifiably scares the hell out of us. We could lose everything we've worked so hard for over the years. It doesn't seem fair, given everything else we've had to endure.
Can anyone recommend a lawyer specializing in this field? We are in the metro Baltimore area, although any good firms in the MD/DC/VA area would be welcome. If you have my email, please send me a private message. Otherwise, a comment below would be fine.
Thanks,
Jason
MAMSI has never denied that our son was covered for these procedures. They are refusing the claims solely on the basis that the hospital hadn't submitted the claims to them in a timely manner. The hospital is claiming that we never gave them the correct insurance information (we did after we were informed they had the incorrect cards... months later). We need some professional representation, this justifiably scares the hell out of us. We could lose everything we've worked so hard for over the years. It doesn't seem fair, given everything else we've had to endure.
Can anyone recommend a lawyer specializing in this field? We are in the metro Baltimore area, although any good firms in the MD/DC/VA area would be welcome. If you have my email, please send me a private message. Otherwise, a comment below would be fine.
Thanks,
Jason
Sunday, February 17, 2008
Sunday Evening, 2/17/08
The last five days have been, as a whole, very good. It's so comforting to have Nathan back home, although Christa has her hands full playing the stay-at-home nurse. We had a couple unnerving nights with more allergic reactions. The second one was enough to have the nurse practitioner decide to take him off the multivitamin IV altogether. This has been a blessing in disguise. Now we "only" have three pumps to deal with.
Nathan has responded very well to being home, better than we ever expected. He seems to simultaneously be getting over the terrible twos. Coincidentally, his third birthday was today. Although we had to bypass any cake or ice cream, we had fun blowing out a candle (on a plate) and opening his gifts. Here are some pictures from the last few days. Note the haircut, his first in six months. Hardly looks like the same boy.
Nathan has responded very well to being home, better than we ever expected. He seems to simultaneously be getting over the terrible twos. Coincidentally, his third birthday was today. Although we had to bypass any cake or ice cream, we had fun blowing out a candle (on a plate) and opening his gifts. Here are some pictures from the last few days. Note the haircut, his first in six months. Hardly looks like the same boy.
Wednesday, February 13, 2008
Wednesday Afternoon, 2/13/08
Elvis has left the building.
Ok, so his name is actually Nathan, and the building is a hospital in Baltimore, MD. We left UMMC around 2pm with a trail of well-wishers and smiling nurses and doctors. He was excited to ride in the car and watch all of the traffic and scenery on his way home. The first hour at home he was running all over the house, reacquainting himself with all of the gadgets and crannies, particularly the ones that 3-year olds like to mess with (and parents want them to avoid). He's finally calmed down, watching Ice Age on the plasma ("ooh, daddy... big TV!") and hanging out on the couch.
Home Sweet Home.
Ok, so his name is actually Nathan, and the building is a hospital in Baltimore, MD. We left UMMC around 2pm with a trail of well-wishers and smiling nurses and doctors. He was excited to ride in the car and watch all of the traffic and scenery on his way home. The first hour at home he was running all over the house, reacquainting himself with all of the gadgets and crannies, particularly the ones that 3-year olds like to mess with (and parents want them to avoid). He's finally calmed down, watching Ice Age on the plasma ("ooh, daddy... big TV!") and hanging out on the couch.
Home Sweet Home.
Tuesday, February 12, 2008
Tuesday Evening, 2/12/08
It's been two weeks since my last post. As upset as I was then, it was nothing compared to last week when he was supposed to have been released on Friday. This time there was apparently miscommunication between the hospital and the home care service. Even though they had all of his details, they didn't know or understand that the numerous IVs had to be hung separately. When they finally acknowledged this, they refused to agree to provide us with the necessary equipment. Nathan is a unique case (as if we didn't know that) and they've never supported anyone with the amount of pumps that he would require.
The hospital worked on getting the number of pumps down from five to three, but their plans changed again yesterday when they determined Nathan really needed to get a constant feed of Octreotide. Regardless, the home care service has agreed to send us four pumps. It looks like we're going home tomorrow.
Everyone at the hospital has been talking about how much they're going to miss Nathan. I'd like to think we'll come back in a year and he can eat lunch at Donna's downstairs, or pick up a doughnut at Lexington Market a couple blocks away. I'm sure we have a long road ahead of us, but we've been through so much already. It's amazing to think back on everything Nathan has experienced over the last six months. I thought it would be interesting to try and enumerate some of it.
4 - Surgical procedures
7 - Centimeters of small intestine removed
33 - Percent of large intestine removed
9 - Hospital rooms
900 - Movies watched
2 - DVD players broken
6 - Allergic reactions
2 - Trips to the emergency room
20 - Lbs gained in weight
2 - Inches gained in height
1 - Bald patch
2160 - Dollars spent on parking
120 - Subway sandwiches
5 - Trips to Lexington Market
Not to sound cliche, but I'd be remiss if I didn't mention the countless nurses, doctors, dietitians, surgeons, members of child life, and general hospital staff that have made our stay at UMMC a positive experience. Nathan's case has not been without its share of challenges. While I'm obviously looking forward to going home, I won't forget everything that everyone has done for us. They've given us a chance for a happy ending to this story.
The hospital worked on getting the number of pumps down from five to three, but their plans changed again yesterday when they determined Nathan really needed to get a constant feed of Octreotide. Regardless, the home care service has agreed to send us four pumps. It looks like we're going home tomorrow.
Everyone at the hospital has been talking about how much they're going to miss Nathan. I'd like to think we'll come back in a year and he can eat lunch at Donna's downstairs, or pick up a doughnut at Lexington Market a couple blocks away. I'm sure we have a long road ahead of us, but we've been through so much already. It's amazing to think back on everything Nathan has experienced over the last six months. I thought it would be interesting to try and enumerate some of it.
4 - Surgical procedures
7 - Centimeters of small intestine removed
33 - Percent of large intestine removed
9 - Hospital rooms
900 - Movies watched
2 - DVD players broken
6 - Allergic reactions
2 - Trips to the emergency room
20 - Lbs gained in weight
2 - Inches gained in height
1 - Bald patch
2160 - Dollars spent on parking
120 - Subway sandwiches
5 - Trips to Lexington Market
Not to sound cliche, but I'd be remiss if I didn't mention the countless nurses, doctors, dietitians, surgeons, members of child life, and general hospital staff that have made our stay at UMMC a positive experience. Nathan's case has not been without its share of challenges. While I'm obviously looking forward to going home, I won't forget everything that everyone has done for us. They've given us a chance for a happy ending to this story.
Tuesday, January 29, 2008
Tuesday Evening, 1/29/08
These little battles are really wearing on me and Christa. The infection in Nathan's central line is bound to push back his release even farther. The chance of him leaving this week are virtually nil. Because of the delays caused by the wrong formula and the line infection, his formula was just restarted today. They also decided to push back the multivitamin cycling until tomorrow, not sure why.
I want to scream and curse and break something. I want to get more sleep. I want to stop being depressed and angry and sad. I want my family whole again.
I don't need prayers or gifts or well-wishing. I just need my son home.
I want to scream and curse and break something. I want to get more sleep. I want to stop being depressed and angry and sad. I want my family whole again.
I don't need prayers or gifts or well-wishing. I just need my son home.
Monday, January 28, 2008
Monday Evening, 1/28/08
Things are still moving forward, but as expected, there have been a couple a minor setbacks.
Last Thursday, the overnight nurse gave Nathan the wrong formula. They normally dilute the canned formula from 30 to 20 (I forget the unit details). In this case, she gave it to him straight from the can and he threw it up later. This caused them to stop his feeds for a couple days while things settled down. To be fair, the department that delivers the formula probably screwed up his order. But I still expect the nursing staff to catch something like this before it gets to him. We've had this type of problem on a few other occasions; it usually ends up with him in the ICU. Fortunately it was nothing too serious this time.
This weekend he developed a low-grade fever. They took blood tests which came back positive for an infection. They believe it it's in his central-line. They are giving him antibiotics to treat the infection, and it shouldn't cause him to miss his planned release date for this Friday.
On a more positive note, they finally stopped his Lovenox shots for the blood clots. This means he can come home without any shots (yay!). They will also begin an attempt at cycling his multivitamin drip starting tomorrow. The plan is to cut it back to 20 hours/day, then down to 16 hours/day if successful. The plan is to try and get him some time at home when he can be free of tubes. Hopefully he'll be able to absorb the multivitamin pills soon and discontinue the multivitamin IV altogether.
Last Thursday, the overnight nurse gave Nathan the wrong formula. They normally dilute the canned formula from 30 to 20 (I forget the unit details). In this case, she gave it to him straight from the can and he threw it up later. This caused them to stop his feeds for a couple days while things settled down. To be fair, the department that delivers the formula probably screwed up his order. But I still expect the nursing staff to catch something like this before it gets to him. We've had this type of problem on a few other occasions; it usually ends up with him in the ICU. Fortunately it was nothing too serious this time.
This weekend he developed a low-grade fever. They took blood tests which came back positive for an infection. They believe it it's in his central-line. They are giving him antibiotics to treat the infection, and it shouldn't cause him to miss his planned release date for this Friday.
On a more positive note, they finally stopped his Lovenox shots for the blood clots. This means he can come home without any shots (yay!). They will also begin an attempt at cycling his multivitamin drip starting tomorrow. The plan is to cut it back to 20 hours/day, then down to 16 hours/day if successful. The plan is to try and get him some time at home when he can be free of tubes. Hopefully he'll be able to absorb the multivitamin pills soon and discontinue the multivitamin IV altogether.
Wednesday, January 23, 2008
Wednesday Evening, 1/23/08
As is typical of late, I'm slow to post updates if things are on a smooth ebb. The staff has slowly increased Nathan's formula intake from the original 1mL/hour to the current rate of 8mL/hour. He has been receiving Octreotide to slow the digestive tract to ease the effects of diarrhea. Regardless, he has had to ordeal plenty of diaper rash. It's not dissimilar to the problems he had with the ostomy leaks, although it's certainly more manageable.
Anyways, on to the good news. It appears that he is absorbing the formula very well and they will be accelerating his rate of feeding. He has been incredibly active, making it difficult for me and Christa to keep up with him at times. At first it was just a matter of keeping up with his running pace. Now he's learned how to pedal his tricycle! He's been having a blast riding around the hospital wings on his Christmas gift. I guess it's a good problem to have, even though it freaks us out having to make sure his tubes don't get tangled up in the wheels.
And just when you thought it couldn't get better...
Nathan ate a potato chip and two cheetos today! I guess this means he'll be ready for Super Bowl festivities with his old man. Seriously, they let him eat a few items to see how he would handle the solid foods. They also gave him some ADEK vitamins (A, D, E and K) that previously passed through his system very quickly. The most recent news is that he seems to be absorbing it, which is really good to hear. There's also rumors going around that they might discontinue the multivitamin drip before he comes home (which should be very soon).
So, that's all I have for tonight. Hopefully I'll have more good news for tomorrow. Is that light I see at the end of the tunnel?
Anyways, on to the good news. It appears that he is absorbing the formula very well and they will be accelerating his rate of feeding. He has been incredibly active, making it difficult for me and Christa to keep up with him at times. At first it was just a matter of keeping up with his running pace. Now he's learned how to pedal his tricycle! He's been having a blast riding around the hospital wings on his Christmas gift. I guess it's a good problem to have, even though it freaks us out having to make sure his tubes don't get tangled up in the wheels.
And just when you thought it couldn't get better...
Nathan ate a potato chip and two cheetos today! I guess this means he'll be ready for Super Bowl festivities with his old man. Seriously, they let him eat a few items to see how he would handle the solid foods. They also gave him some ADEK vitamins (A, D, E and K) that previously passed through his system very quickly. The most recent news is that he seems to be absorbing it, which is really good to hear. There's also rumors going around that they might discontinue the multivitamin drip before he comes home (which should be very soon).
So, that's all I have for tonight. Hopefully I'll have more good news for tomorrow. Is that light I see at the end of the tunnel?
Friday, January 11, 2008
Friday, 1/11/2008
By popular demand, I'm taking time out of my busy schedule (yeah, right) to update the blog this morning. As in the past, I have little to mention when things are slowly improving. There have been no setbacks. They've given him some drugs to slow his system so as to allow time for the intestines to start absorbing. He is getting formula via the G-tube at a current rate of 4ml/hour. They have increased it 1ml/hour every 3 days, but I think that's about to change. The surgeon said last week that he would probably be going home in 2 weeks, but it seems they use a sliding window since the story hadn't changed yesterday.
Anyways, he's doing well. His spirits are fine and Christa is keeping him very active during the days. He enjoys going over to the play room and spending hours on the computer (like father, like son). Don't worry though, he's getting plenty of exercise walking the halls. They even went outside earlier this week and enjoyed the unseasonably warm weather. All in all, things are moving int he right direction.
Anyways, he's doing well. His spirits are fine and Christa is keeping him very active during the days. He enjoys going over to the play room and spending hours on the computer (like father, like son). Don't worry though, he's getting plenty of exercise walking the halls. They even went outside earlier this week and enjoyed the unseasonably warm weather. All in all, things are moving int he right direction.
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.
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