Wednesday, August 29, 2007
Wednesday Morning, 8/29/07
They finally moved Nathan into his own room in another pediatric (non-ICU) wing. He's doing well, continuing to rid his body of the sedatives. The next week or so will probably be very boring (blog-wise). The coming days will focus on his continued healing and weaning, leading up to the surgery to "fix him back up". Alyssa will be going up this evening to visit him, hopefully he's alert and responsive.
Tuesday, August 28, 2007
Tuesday Morning, 8/28/07
Not much happened yesterday except for more gradual recovery. Nathan's procedure for the new tube went fine, but they gave him a couple doses of [some sedative I can't remember] and it had him fairly incapacitated. I went by for a few hours in the evening but he was asleep the whole time. No complaints, I managed to read 1/3 of the Snort Cookbook (Intrusion Detection stuff, for geeks only).
Christa went to the hospital early again this morning. I haven't heard much from her on updates, other than they expect Nathan to be moved to his own room in the ICM (ICU wing) sometime today. This will be nice, at it allows us to bring Alyssa in for visits.
Oh, and Christa sent me this picture from her phone. Does that smile just melt your heart or what?
Monday, August 27, 2007
Monday Morning, 8/27/07
I forgot to mention that a couple of really good things happened Saturday night / Sunday morning while I was at the hospital. First, Nathan's ostomy bag filled with gas a couple times. This suggests his small intestine is starting to work, and if so, is really good news. Second, he actually had a poop in his diaper. This does not mean he's digesting food, because, well, he isn't eating anything. In reality, it just means he's passed something that was already in there, pre-surgery. Nevertheless, it's still good to see that his bowel seems to be kicking into gear.
Christa spent most of Sunday with him at the hospital. He's still in the main ICU area (with the nurse's station), but they think he'll be moving into his own room sometime on Monday (maybe). He's doing well but still suffering withdrawals from the sedatives. This will last for quite some time, as we're expecting to take home medication in pill form to continue weaning him off his addiction.
One of the more difficult things to manage lately has been a diversity of information provided to us from the doctors and surgeons. Even among different physicians of the same team, we receive wildly varying recovery schedules and planned courses of treatment. One surgeon has told us that Nathan would be going home with an ostomy bag; an attending has said he would go back into surgery and be "whole" when he checks out; another attending said he'll be eating a couple weeks after he leaves; one surgeon said he'd be eating by Thanksgiving. We expect a range of opinions from the different staff members, but some of these predictions seem worlds apart.
They wheeled him down to Interventional Radiation this morning to insert a new tube near his arm. This will replace one he already has, making it easier to control his nutritional input. He should be getting back soon.
Christa spent most of Sunday with him at the hospital. He's still in the main ICU area (with the nurse's station), but they think he'll be moving into his own room sometime on Monday (maybe). He's doing well but still suffering withdrawals from the sedatives. This will last for quite some time, as we're expecting to take home medication in pill form to continue weaning him off his addiction.
One of the more difficult things to manage lately has been a diversity of information provided to us from the doctors and surgeons. Even among different physicians of the same team, we receive wildly varying recovery schedules and planned courses of treatment. One surgeon has told us that Nathan would be going home with an ostomy bag; an attending has said he would go back into surgery and be "whole" when he checks out; another attending said he'll be eating a couple weeks after he leaves; one surgeon said he'd be eating by Thanksgiving. We expect a range of opinions from the different staff members, but some of these predictions seem worlds apart.
They wheeled him down to Interventional Radiation this morning to insert a new tube near his arm. This will replace one he already has, making it easier to control his nutritional input. He should be getting back soon.
Saturday, August 25, 2007
Saturday Evening, 8/25/07
Nathan is finally getting some well-deserved rest. His regular schedule of chest "massages" to relieve the build-up of mucus in his lungs doesn't leave much time for sleep. I'll be staying overnight with him. I brought along my laptop, which turned out to be a really good idea. He's fallen asleep both times I've started to play Toy Story 2 for him.
Nite buddy.
Saturday Morning, 8/25/07
It's hard to believe Nathan has been in the hospital for three weeks. Although his recovery is a week behind where we hoped it would be, we're overjoyed that he's progressing smoothly now. Christa stayed with him all day yesterday and through the evening. She says he looks fantastic now; the swelling in his face is down and he looks just like the "old Nathan". His breathing is doing so well that they removed the mask and he's now breathing completely on his own. The surgical team is very pleased with his current state of recovery.
Jessica (our babysitter) is coming by today to watch over Alyssa so we can both go to visit him. I can't wait to see my little boy. I will probably stay the night with him tonight. The attending told Christa yesterday there's a chance that his sister will be able to visit him on Sunday. This tells me there's a decent chance he'll be moved to a regular room soon! I'm trying not to cry, I'm such a wuss. :)
Jessica (our babysitter) is coming by today to watch over Alyssa so we can both go to visit him. I can't wait to see my little boy. I will probably stay the night with him tonight. The attending told Christa yesterday there's a chance that his sister will be able to visit him on Sunday. This tells me there's a decent chance he'll be moved to a regular room soon! I'm trying not to cry, I'm such a wuss. :)
Friday, August 24, 2007
Friday Afternoon, 8/24/07
Christa has made it up to the hospital. Nathan is awake and groggy. She's been able to hold him in her lap outside of the bed.
Looks like someone needs a haircut. :)
Friday Morning, 8/24/07
Nathan is starting to resemble the little boy in the pictures taped to his hospital bed. His feet look and feel great, and most of the swelling in his neck is gone. Unfortunately, his tolerance to the sedatives is very noticeable. He was awake and alert for long stretches yesterday with Christa, and last night when I visited. She read from his books and he responded well. He became visibly frustrated and upset last night with all of the nurses doing their thing and me not being able to pick him up. They had to give him a new sedative (ketamine) to calm him down for the evening. I can't begin to describe how wrenching it is to see your child in that state of fear/anguish/frustration and not be able to do anything about it. I'm grateful that he won't remember most (if anything) of what he's been through.
We were surprised this morning when we called to check on his status and were informed that they were taking him off the ventilator early today. The tube was removed before 10am and he is doing fine. They still have a mask on him to provide oxygen if he needs it, but they say he's breathing great. Christa went to Alyssa's kindergarten orientation this morning, so she is getting into the hospital around noon. I'm looking forward to hearing back from her on his progress. I think the coming weeks are going to be difficult as Nathan comes to understand his situation, as well as the time it will take to ween him off the drugs. If all goes well (and I'm not basing this on anything but pure optimism), perhaps he will be home with us by next weekend.
We were surprised this morning when we called to check on his status and were informed that they were taking him off the ventilator early today. The tube was removed before 10am and he is doing fine. They still have a mask on him to provide oxygen if he needs it, but they say he's breathing great. Christa went to Alyssa's kindergarten orientation this morning, so she is getting into the hospital around noon. I'm looking forward to hearing back from her on his progress. I think the coming weeks are going to be difficult as Nathan comes to understand his situation, as well as the time it will take to ween him off the drugs. If all goes well (and I'm not basing this on anything but pure optimism), perhaps he will be home with us by next weekend.
Wednesday, August 22, 2007
Wednesday Evening, 8/22/07
I went to the hospital this evening. Nathan was downstairs getting a CT scan of his chest, abdomen and legs. They want to get a look at his bowels and possible blood clots in his legs. After he returned I noticed more improvements with his face, legs and feet. He's expelling more fluid than he's taking in, and at a good pace. However, the catheter in his abdomen continues to empty fluid at a surprising rate. We had expected it to taper off by Monday or Tuesday, but the rate is constant.
I spoke with one of the surgeons about the CT scan. There's nothing alarming from the scan, but he thinks the CT was a bad quality scan. I also had an opportunity to speak with the attending physician, who revealed that they also were expecting the fluid from Nathan's abdomen to taper off by now. There is some concern that the fluid is coming from a leak of his intestine. At the very least, he's still improving with regards to his adema, vitals and breathing. But at some point they'll need to determine what is causing this fluid and why it's not coming out of his ostomy instead. There's a chance he might have to go back into the operating room this week to get a visual of his bowels.
I have a nagging worry that there may be damage to Nathan's small intestine. If it's just a leak around the stoma, under the skin, that's probably something that can be easily repaired. My worst fear is that they find portions of the unhealthy intestine that never healed. It's hard to believe that anything in there could be really bad, given how well he's finally recovering. But this is why I've tried to keep an even keel; it's scary how quickly things can go from good to bad to worse (and back to good) in a matter of hours.
I spoke with one of the surgeons about the CT scan. There's nothing alarming from the scan, but he thinks the CT was a bad quality scan. I also had an opportunity to speak with the attending physician, who revealed that they also were expecting the fluid from Nathan's abdomen to taper off by now. There is some concern that the fluid is coming from a leak of his intestine. At the very least, he's still improving with regards to his adema, vitals and breathing. But at some point they'll need to determine what is causing this fluid and why it's not coming out of his ostomy instead. There's a chance he might have to go back into the operating room this week to get a visual of his bowels.
I have a nagging worry that there may be damage to Nathan's small intestine. If it's just a leak around the stoma, under the skin, that's probably something that can be easily repaired. My worst fear is that they find portions of the unhealthy intestine that never healed. It's hard to believe that anything in there could be really bad, given how well he's finally recovering. But this is why I've tried to keep an even keel; it's scary how quickly things can go from good to bad to worse (and back to good) in a matter of hours.
Wednesday Morning, 8/22/07
Nathan continues to make steady improvement in the PICU. His adema (swelling) has decreased quite a bit. His arms are skinny, his chest and abdomen are almost back to normal, and his legs are soft but chubby. His feet are still swollen and semi-firm, but we can see changes for the better. His urine output has been very good. He's excreting more than he is taking in through the IV, which means his body is passing the fluid in his "third space" efficiently.
Once they are able to get him off the ventilator, they will begin to ween him off sedatives. His body has built up a high tolerance to the drugs (morphine, ativan and methodone). I'm not sure how you manage to control a 2-year old in bed that's been asleep for 2 weeks, but the hospital must have experience with this. It's a little tougher with Nathan because he was on the sedatives a week longer than usual.
They started treating him every few hours for mucus accumulation in his lungs. The treatment is the use of a massager-like device that "thumps" his back in rapid succession. He doesn't hide his displeasure for the shaking, but he really needs it. I had my hands full keeping him occupied. Even with his eyes shut, his legs and arms were moving around a lot grabbing at the equipment hooked up to him. I'm sure he'll be fine, but it's unnerving. Considering where we all were a week ago, this is a good problem to have.
Once they are able to get him off the ventilator, they will begin to ween him off sedatives. His body has built up a high tolerance to the drugs (morphine, ativan and methodone). I'm not sure how you manage to control a 2-year old in bed that's been asleep for 2 weeks, but the hospital must have experience with this. It's a little tougher with Nathan because he was on the sedatives a week longer than usual.
They started treating him every few hours for mucus accumulation in his lungs. The treatment is the use of a massager-like device that "thumps" his back in rapid succession. He doesn't hide his displeasure for the shaking, but he really needs it. I had my hands full keeping him occupied. Even with his eyes shut, his legs and arms were moving around a lot grabbing at the equipment hooked up to him. I'm sure he'll be fine, but it's unnerving. Considering where we all were a week ago, this is a good problem to have.
Monday, August 20, 2007
Monday Morning, 8/20/07
We called the hospital early this morning and spoke to Nathan's nurse. She said he had an excellent night. His vitals are doing great. They were able to decrease his ventilator settings even more. They have now accumulated a grand total of 1500mL from his abdomen over the last 2 days.
The nurse also mentioned that the surgeon team was visiting him just then, and they were "tickled" at his progress. Yay!
The nurse also mentioned that the surgeon team was visiting him just then, and they were "tickled" at his progress. Yay!
Sunday, August 19, 2007
Sunday Morning, 8/19/07
I've been negligent in my posts the last few days, there has been a lot going on. Let's start with Thursday...
Thursday Evening, 8/16/07
My dad flew in from Colorado today. His flight arrived in Dulles, which is a really long way from UMMC in Baltimore (or our house in Westminster). Fortunately he asked for GPS in his rental car, per my recommendation. He met me at my office, grabbed a quick lunch, then we drove home to pick up Alyssa from daycare. After Christa came home around 6pm, I took him up to the hospital to see Nathan. My dad was visually upset by Nathan's condition. Nathan has begun to develop a redness in the skin around his chest and abdomen. The doctors and nurses aren't sure what it is, but think it might be cellulitis. They don't seem overly concerned about it, expecting that the antibiotics he's receiving will keep it in check. We talked with the nurse for a while to find out his latest updates, then we headed back home.
Friday Evening, 8/17/07
As usual, Christa spent the whole day at the hospital at his bedside. She's been keeping me updated whenever the staff provides her any new information or if Nathan's vitals or condition changes. My dad offered to babysit Alyssa, freeing me up to join Christa at the hospital. Once I arrived, she informed me that the doctors were planning on inserting a tube into Nathan's abdomen. The CT scan had revealed a large pocket of fluid that was likely causing a lot of the pressure on his belly and diaphragm. She had signed off on the procedure consent around 5pm, but the surgeons were tied up in another surgery, so we waited for them to arrive.
By 9pm, we were getting very impatient and finally learned that the surgeons would not be performing the procedure this evening. Fourty minutes later, the surgery intern stopped by and explained that they were concerned that Nathan's bowel was obstructing their path to the target area. There was a risk that any attempt to insert the catheter would puncture his intenstine and cause further complications. We understood their reasoning, but were very upset that a) none of the actual surgeons had stopped by to tell us personally, b) that Nathan would apparently be getting worse as the weekend wound on (they previously explained that they don't like to perform operations over the weekend due to reduced staff), and c) that the intern seemed to be blaming the PICU for the miscommunication. The PICU doctors and nurses have been awesome in feeding us information and answering our questions at all possible opportunities. Not that we have any less respect for the surgery staff than the PICU, but we'd rather not see anyone point fingers in this situation.
Tired, frustrated and depressed, we went home. Normally we might have stayed the night with Nathan, but we both really needed some space between us and the hospital staff.
Saturday Evening, 8/18/07
Today was a very good day.
The weather outside was absolutely perfect. The forecast was for sunny skies and eighty degrees, and Mother Nature certainly aimed to please. We called the hospital and received a fairly routine report; Nathan's vitals were fine, he broke his fever (again), but the swelling and redness were about the same. Since nothing was scheduled for the morning, we made plans to burn off some stress and anxiety: our babysitter (Miss Jessica, you're the best) came over to spend the morning with Alyssa; my dad and I enjoyed a perfect (weather-wise) round of golf at Wakefield Valley; and Christa enjoyed a long nap in her own bed.
Recharged, Christa and I planned to head over to the hospital around noon. Right as we were walking out the door, the hospital called us to let us know the doctors had changed their mind and wanted to perform the procedure today. However, the procedure was going to be handled by Interventional Radiology. This group is able to see inside Nathan's abdomen as they insert the catheter, resulting in a much lower risk to his bowels. We immediately gave them approval to move forward and headed out to the hospital.
They had already finished the procedure when we arrived. There was already a noticeable reduction in Nathan's belly size. Almost 350mL of dark brown fluid was contained in a collection bag attached to the new tube, and it the output was still flowing readily. We were very excited and hopefully that this might be what has been keeping Nathan from recovering.
By 7pm, the bag had collected upwards of 700mL of fluid from Nathan's abdomen. His chest and abdomen were much flatter, and we noticed creases in his arms and legs where previously the area was swollen and tight. Relieved and optimistic, we headed home to get some rest.
Sunday Morning, 8/19/07
Everyone woke up late this morning. I called the hospital to find out Nathan's status is still good. He has no fever, his vitals are very good (they've lowered his ventilator settings even more), and a total of 1000mL has now been extracted. Christa and I decided to split the day up at the hospital, so I headed in for the "morning shift". The redness in Nathan's chest seems to have faded a bit, although the color in his abdomen looks about the same. The swelling in his arms and legs has continued to decrease and his "boy parts" look better (but still very swollen and uncomfortable). I brought along a small iPod speaker system for playing Nathan's favorite music while he rests. That's all for now.
Thursday Evening, 8/16/07
My dad flew in from Colorado today. His flight arrived in Dulles, which is a really long way from UMMC in Baltimore (or our house in Westminster). Fortunately he asked for GPS in his rental car, per my recommendation. He met me at my office, grabbed a quick lunch, then we drove home to pick up Alyssa from daycare. After Christa came home around 6pm, I took him up to the hospital to see Nathan. My dad was visually upset by Nathan's condition. Nathan has begun to develop a redness in the skin around his chest and abdomen. The doctors and nurses aren't sure what it is, but think it might be cellulitis. They don't seem overly concerned about it, expecting that the antibiotics he's receiving will keep it in check. We talked with the nurse for a while to find out his latest updates, then we headed back home.
Friday Evening, 8/17/07
As usual, Christa spent the whole day at the hospital at his bedside. She's been keeping me updated whenever the staff provides her any new information or if Nathan's vitals or condition changes. My dad offered to babysit Alyssa, freeing me up to join Christa at the hospital. Once I arrived, she informed me that the doctors were planning on inserting a tube into Nathan's abdomen. The CT scan had revealed a large pocket of fluid that was likely causing a lot of the pressure on his belly and diaphragm. She had signed off on the procedure consent around 5pm, but the surgeons were tied up in another surgery, so we waited for them to arrive.
By 9pm, we were getting very impatient and finally learned that the surgeons would not be performing the procedure this evening. Fourty minutes later, the surgery intern stopped by and explained that they were concerned that Nathan's bowel was obstructing their path to the target area. There was a risk that any attempt to insert the catheter would puncture his intenstine and cause further complications. We understood their reasoning, but were very upset that a) none of the actual surgeons had stopped by to tell us personally, b) that Nathan would apparently be getting worse as the weekend wound on (they previously explained that they don't like to perform operations over the weekend due to reduced staff), and c) that the intern seemed to be blaming the PICU for the miscommunication. The PICU doctors and nurses have been awesome in feeding us information and answering our questions at all possible opportunities. Not that we have any less respect for the surgery staff than the PICU, but we'd rather not see anyone point fingers in this situation.
Tired, frustrated and depressed, we went home. Normally we might have stayed the night with Nathan, but we both really needed some space between us and the hospital staff.
Saturday Evening, 8/18/07
Today was a very good day.
The weather outside was absolutely perfect. The forecast was for sunny skies and eighty degrees, and Mother Nature certainly aimed to please. We called the hospital and received a fairly routine report; Nathan's vitals were fine, he broke his fever (again), but the swelling and redness were about the same. Since nothing was scheduled for the morning, we made plans to burn off some stress and anxiety: our babysitter (Miss Jessica, you're the best) came over to spend the morning with Alyssa; my dad and I enjoyed a perfect (weather-wise) round of golf at Wakefield Valley; and Christa enjoyed a long nap in her own bed.
Recharged, Christa and I planned to head over to the hospital around noon. Right as we were walking out the door, the hospital called us to let us know the doctors had changed their mind and wanted to perform the procedure today. However, the procedure was going to be handled by Interventional Radiology. This group is able to see inside Nathan's abdomen as they insert the catheter, resulting in a much lower risk to his bowels. We immediately gave them approval to move forward and headed out to the hospital.
They had already finished the procedure when we arrived. There was already a noticeable reduction in Nathan's belly size. Almost 350mL of dark brown fluid was contained in a collection bag attached to the new tube, and it the output was still flowing readily. We were very excited and hopefully that this might be what has been keeping Nathan from recovering.
By 7pm, the bag had collected upwards of 700mL of fluid from Nathan's abdomen. His chest and abdomen were much flatter, and we noticed creases in his arms and legs where previously the area was swollen and tight. Relieved and optimistic, we headed home to get some rest.
Sunday Morning, 8/19/07
Everyone woke up late this morning. I called the hospital to find out Nathan's status is still good. He has no fever, his vitals are very good (they've lowered his ventilator settings even more), and a total of 1000mL has now been extracted. Christa and I decided to split the day up at the hospital, so I headed in for the "morning shift". The redness in Nathan's chest seems to have faded a bit, although the color in his abdomen looks about the same. The swelling in his arms and legs has continued to decrease and his "boy parts" look better (but still very swollen and uncomfortable). I brought along a small iPod speaker system for playing Nathan's favorite music while he rests. That's all for now.
Thursday, August 16, 2007
Thursday Morning, 8/16/07
Christa spent most of Wednesday at the hospital again. She had a chance to speak with Dr. Alaish (the surgeon) who reiterated most of what we've already heard (patience, time, etc). They are planning to do a CT scan on Thursday to check for pockets of fluid. She called me with updates that afternoon; she thinks that the swelling in his face has gone down a bit, but not much else has changed.
I got around to the hospital last night around 8pm. At first glance I didn't notice much of a change at all. He's still very swollen throughout his body, but his vitals are good. I think Christa was right, his eyes seem a bit less puffy than before. He seems to be building up an immunity to the sedatives, so they're changing the frequency, strength and type of drugs in order to keep him comfortable.
I talked to him a lot more than usual. I feel bad that I haven't been able to spend as much time at the hospital since I'm back at work, and I want him to know I'm there and love him very much. The nurse says he can hear us. I just hope he's not in any pain (besides the discomfort from lying in bed for weeks).
Before I left, I squeezed his leg and noticed that it felt much softer than previously. It felt almost normal, where it used to be very tight and tender. The nurse said that's a good sign, that the fluid is passing from that area. I also noticed his "boy region" seemed a bit softer as well. It's still very enlarged, but I can definitely tell an improvement.
Baby steps.
I got around to the hospital last night around 8pm. At first glance I didn't notice much of a change at all. He's still very swollen throughout his body, but his vitals are good. I think Christa was right, his eyes seem a bit less puffy than before. He seems to be building up an immunity to the sedatives, so they're changing the frequency, strength and type of drugs in order to keep him comfortable.
I talked to him a lot more than usual. I feel bad that I haven't been able to spend as much time at the hospital since I'm back at work, and I want him to know I'm there and love him very much. The nurse says he can hear us. I just hope he's not in any pain (besides the discomfort from lying in bed for weeks).
Before I left, I squeezed his leg and noticed that it felt much softer than previously. It felt almost normal, where it used to be very tight and tender. The nurse said that's a good sign, that the fluid is passing from that area. I also noticed his "boy region" seemed a bit softer as well. It's still very enlarged, but I can definitely tell an improvement.
Baby steps.
Tuesday, August 14, 2007
Tuesday Afternoon, 8/14/07
They say that all good things come to those who wait. Easier said than done, especially when it's your child in a hospital bed. Yesterday was a little crazy; I wasn't able to focus on work, so I left around noon for the hospital. Nathan's condition hadn't improved, and the surgeons were getting more concerned about the adema. A cadre of surgeons made their rounds around 2:30pm, surrounding Nathan and discussing their options. The head of surgery stepped aside to explain that their preference is still to wait and monitor, rather than performing additional surgery to alleviate the swelling. They tried to insert a tube through Nathan's stoma, but that was unsuccessful. All in all, not much really happened given all the shuffling around.
We were expecting Dr. Alaish (who performed Nathan's surgery) to visit around 5pm. Both Christa and I wanted to be there to speak with him, but Alyssa also had her dance class at 5pm. I felt it was more important for Christa to speak with the surgeon, so I left around 3pm to pick up Alyssa.
Around 6:30pm, Christa called me on her mobile phone while driving home. The surgeon hadn't shown up, and the ICU staff expected he had been delayed and would likely not be able to make it by at all.
Not long after, the surgeon called me at home. He had indeed been delayed, but finally managed to get by to see Nathan. He said that Nathan's vitals were looking very good, particularly his CO2. He was also able to extract some fluid from Nathan's stoma and had attached an ostomy bag. He reiterated that his preference was to wait and monitor Nathan's progress for now.
The Good News
Christa and my mom went to the hospital this morning while I went to work. Christa called me around 10am to let me know that Nathan had a good evening and is showing signs of improvement. He's been passing quite a bit of fluid, both from his urine and through the ostomy. His fever is almost gone, and his numbers all look great. As of noon today, his abdomen measurement was around 57cm (versus 59cm yesterday), which really gives us reason to be optimistic. We're both very cautious to get too excited, since he could have a regression at any point. Still, it feels great to see Nathan start to make a recovery. Let's hope he continues to make steady progress through tonight and tomorrow.
We were expecting Dr. Alaish (who performed Nathan's surgery) to visit around 5pm. Both Christa and I wanted to be there to speak with him, but Alyssa also had her dance class at 5pm. I felt it was more important for Christa to speak with the surgeon, so I left around 3pm to pick up Alyssa.
Around 6:30pm, Christa called me on her mobile phone while driving home. The surgeon hadn't shown up, and the ICU staff expected he had been delayed and would likely not be able to make it by at all.
Not long after, the surgeon called me at home. He had indeed been delayed, but finally managed to get by to see Nathan. He said that Nathan's vitals were looking very good, particularly his CO2. He was also able to extract some fluid from Nathan's stoma and had attached an ostomy bag. He reiterated that his preference was to wait and monitor Nathan's progress for now.
The Good News
Christa and my mom went to the hospital this morning while I went to work. Christa called me around 10am to let me know that Nathan had a good evening and is showing signs of improvement. He's been passing quite a bit of fluid, both from his urine and through the ostomy. His fever is almost gone, and his numbers all look great. As of noon today, his abdomen measurement was around 57cm (versus 59cm yesterday), which really gives us reason to be optimistic. We're both very cautious to get too excited, since he could have a regression at any point. Still, it feels great to see Nathan start to make a recovery. Let's hope he continues to make steady progress through tonight and tomorrow.
Monday, August 13, 2007
Monday Morning, 8/13/07
Sunday was another day of sitting and hoping that Nathan would turn the corner on his recovery. His body still hasn't started to relieve the swelling as everyone had expected by now. He has continued with a low-grade fever (~101F) for the last few days, although the doctors say that all tests have returned no signs of infection. Unfortunately, his body's ability to combat the adema is in hiatus while it tries to fight some infection that doesn't seem to exist.
The doctors are considering their options for finding the "magic bullet" that will kick-start Nathan's system into recovery. Another surgery might be necessary to visually inspect his bowels and insert a catheter if there are any pockets of fluid that they're unable to detect via ultrasound/x-ray. Christa has been trying to meet with the attending surgeon as they make their rounds through the PICU. Hopefully she can hook up with them today to get more details on their imminent plans.
This past weekend hit us hard. We were all expecting Nathan to be headway into recovery. Waking up each morning and calling the PICU, only to hear the same story, is very trying. And yet, I'm hopeful that every tomorrow will be the day our little man turns that corner.
Thank you to everyone who has sent their prayers and wishes for Nathan's recovery. It means a lot to our entire family, especially Christa and myself. Our daughter, Alyssa, is having a great time with her Grandma Sherry who is visiting from Colorado. I'm hard on my mom sometimes, but she really came through for us in our time of need. Mom, if you're reading this, please know that I love you very much and will never be able to express how grateful I am for you being here right now.
P.S. You still get on my nerves. ;)
The doctors are considering their options for finding the "magic bullet" that will kick-start Nathan's system into recovery. Another surgery might be necessary to visually inspect his bowels and insert a catheter if there are any pockets of fluid that they're unable to detect via ultrasound/x-ray. Christa has been trying to meet with the attending surgeon as they make their rounds through the PICU. Hopefully she can hook up with them today to get more details on their imminent plans.
This past weekend hit us hard. We were all expecting Nathan to be headway into recovery. Waking up each morning and calling the PICU, only to hear the same story, is very trying. And yet, I'm hopeful that every tomorrow will be the day our little man turns that corner.
Thank you to everyone who has sent their prayers and wishes for Nathan's recovery. It means a lot to our entire family, especially Christa and myself. Our daughter, Alyssa, is having a great time with her Grandma Sherry who is visiting from Colorado. I'm hard on my mom sometimes, but she really came through for us in our time of need. Mom, if you're reading this, please know that I love you very much and will never be able to express how grateful I am for you being here right now.
P.S. You still get on my nerves. ;)
Sunday, August 12, 2007
Sunday Morning, 8/12/07
We crawled through Orioles/Red Sox traffic on our way to UMMC this morning. Nathan's CO2 is still high, even with the fluid drained around his other lung. The doctors feel that the adema (swelling of fluid) is putting pressure on his diaphragm, making it difficult for him to expel enough CO2. They said he is still passing enough urine, so the nurse gave Nathan some Lasix to help drain more fluid.
Seeing no improvement over the last few days is very disheartnening. It's not that I'm worried he's going to get worse, it's just that we hope every morning to see something tangible as a result of everyone's hard work and prayers. We know he's fighting very hard to get better and it's very frustrating, as parents, to feel so helpless. I had to come down to the waiting area for a bit to meditate alone and share my thoughts in the blog.
Seeing no improvement over the last few days is very disheartnening. It's not that I'm worried he's going to get worse, it's just that we hope every morning to see something tangible as a result of everyone's hard work and prayers. We know he's fighting very hard to get better and it's very frustrating, as parents, to feel so helpless. I had to come down to the waiting area for a bit to meditate alone and share my thoughts in the blog.
Friday, August 10, 2007
Saturday Evening, 8/11/07
I know there wasn't an update last night, but not much happened yesterday. That's what makes this so tough, the healing process is very slow and we're forced to become very patient. If you're a family member who we've been brief with, please understand that we will pass on information as soon as we have it. This is a painfully slow recovery period, and there's nothing we can do to make it happen faster; it's all up to the little guy lying in that hospital bed.
Today was very much like yesterday, in so far as the healing is still slow going. There was plenty of waiting and watching while doctors and nurses inspected his chest for signs of pressure. Around 6pm they rolled him out to perform a CT scan on his lungs. They finally returned after 7pm and confirmed that he had more fluid accumulated around his other lung, and they would be inserting a new tube to extract the fluid. Christa and I took a quiet walk around the hospital while the procedure was going on.
Another hour later, the tube was finished and extracting plenty of fluid. His CO2 was elevated; I asked the nurse and she confirmed that they were expecting it to go down as the fluid decreased. The chief attending pulled us aside to show us the CT scans. We could see the fluid taking up at least 50% of the left lung's capacity. This is the same problem he had earlier in the week with his right lung, we're optimistic the procedure will return noticeable results by tomorrow morning.
Today was very much like yesterday, in so far as the healing is still slow going. There was plenty of waiting and watching while doctors and nurses inspected his chest for signs of pressure. Around 6pm they rolled him out to perform a CT scan on his lungs. They finally returned after 7pm and confirmed that he had more fluid accumulated around his other lung, and they would be inserting a new tube to extract the fluid. Christa and I took a quiet walk around the hospital while the procedure was going on.
Another hour later, the tube was finished and extracting plenty of fluid. His CO2 was elevated; I asked the nurse and she confirmed that they were expecting it to go down as the fluid decreased. The chief attending pulled us aside to show us the CT scans. We could see the fluid taking up at least 50% of the left lung's capacity. This is the same problem he had earlier in the week with his right lung, we're optimistic the procedure will return noticeable results by tomorrow morning.
Friday Morning, 8/10/07
I called the hospital early this morning to catch his nurse before she left at the shift change. She said he had a "great night", although she mentioned that his blood pressure was a little high, so they put him on a different type of medicine. They also gave him some more morphine to help with pain, which they think is causing the increase in blood pressure and a bit of his heartbeat. Nevertheless, this sounds normal and nothing to be worried about.
I'm going to pick up his grandmother (my mom) from the airport this afternoon. I took a picture of Nathan last night with my iPhone to prepare her for his condition. I probably will take her straight home today, not sure when I'll be comfortable driving her up to the hospital to see him.
I'm going to pick up his grandmother (my mom) from the airport this afternoon. I took a picture of Nathan last night with my iPhone to prepare her for his condition. I probably will take her straight home today, not sure when I'll be comfortable driving her up to the hospital to see him.
Thursday, August 9, 2007
Thursday Evening, 8/9/07
I went to work this morning. My employer has been awesome about the whole situation, basically telling me to stay away and take care of my family. Under normal circumstances you might expect this sort of reaction, but consider that I've only been working there for a week!
Christa came home around the time I was leaving and went up to nap for a few hours. I called her at 11:30am to wake her up (per her instructions, against my better judgement) and she was already awake. By 1pm she was at the hospital again. She really needs to pace herself, but there's not much you can do to deter a dedicated mom. She called me shortly thereafter to let me know that Nathan is doing very well. His swelling is still going down. In fact, she said you can even see wrinkles on his neck. His vitals and breathing are both doing well.
We both headed home around 3:30-4pm, although I first ran by the daycare to pick up Alyssa. After eating dinner as a family (well, sorta), I headed back up to the hospital by myself. Thankfully the rain storms had subsided for a bit, making it an easy drive up to Baltimore. I arrived at UMMC around 9pm and headed up to the PICU.
I couldn't tell a noticeable difference in Nathan's swelling, although all of the staff seemed very pleased with his progress. His heart rate was steady at 170bpm, his blood pressure was doing great at 98/58, and his oxygen was at 100 (perfect!). Considering he was doing most of the breathing himself, these were all very good numbers. I noticed that his lipids were turned off, and his nurse explained this was because of a high triglycerides count. No big deal. At some point his blood pressure spiked up to 140/60; the nurse suspected this was due to pain, so they would probably give him more pain medication when his current dose of Tylenol wore off.
When I had the chance, I pulled aside the chief attendant, Suzanna. Christa and I both like her, she's very personable and really comes across as someone who can identify with our dilemma (indeed, she has a 2-year old). I wanted to know if Nathan has any major obstacles left; she said no, he's doing very well and "is going to be fine". He's going to need plenty of time to heal, but he's definitely on the road to recovery (YEEEEEHAAAWW!!!!). Needless to say, this really made my day. Doctors in an ICU generally won't give any sort of "guarantees" or commit themselves to a long-term prognosis. I don't know if I've ever been so happy and relieved as I was right then. I think I'll sleep good tonight.
Christa came home around the time I was leaving and went up to nap for a few hours. I called her at 11:30am to wake her up (per her instructions, against my better judgement) and she was already awake. By 1pm she was at the hospital again. She really needs to pace herself, but there's not much you can do to deter a dedicated mom. She called me shortly thereafter to let me know that Nathan is doing very well. His swelling is still going down. In fact, she said you can even see wrinkles on his neck. His vitals and breathing are both doing well.
We both headed home around 3:30-4pm, although I first ran by the daycare to pick up Alyssa. After eating dinner as a family (well, sorta), I headed back up to the hospital by myself. Thankfully the rain storms had subsided for a bit, making it an easy drive up to Baltimore. I arrived at UMMC around 9pm and headed up to the PICU.
I couldn't tell a noticeable difference in Nathan's swelling, although all of the staff seemed very pleased with his progress. His heart rate was steady at 170bpm, his blood pressure was doing great at 98/58, and his oxygen was at 100 (perfect!). Considering he was doing most of the breathing himself, these were all very good numbers. I noticed that his lipids were turned off, and his nurse explained this was because of a high triglycerides count. No big deal. At some point his blood pressure spiked up to 140/60; the nurse suspected this was due to pain, so they would probably give him more pain medication when his current dose of Tylenol wore off.
When I had the chance, I pulled aside the chief attendant, Suzanna. Christa and I both like her, she's very personable and really comes across as someone who can identify with our dilemma (indeed, she has a 2-year old). I wanted to know if Nathan has any major obstacles left; she said no, he's doing very well and "is going to be fine". He's going to need plenty of time to heal, but he's definitely on the road to recovery (YEEEEEHAAAWW!!!!). Needless to say, this really made my day. Doctors in an ICU generally won't give any sort of "guarantees" or commit themselves to a long-term prognosis. I don't know if I've ever been so happy and relieved as I was right then. I think I'll sleep good tonight.
Wednesday Evening, 8/8/07
I stayed at UMMC's waiting room last night. It was a rough night; one guy's snoring kept everyone awake for most of the night. I got about 3 hours of choppy sleep. When I went back into PICU around 5:30am, Nathan's heartbeat was back over 190 although the rest of his signs were ok. The ICU chief wanted to get him moved to a different breathing machine, an oscillator. The one he's been using emulates regular breathing, but it can be rough on a child. The oscillator operates much faster (up to 300 breaths/min), but with a much lower force. I was planning on leaving around 6am, but decided to hang around until they changed machines. I was getting pretty nervous as his oxygen level dipped into the 60's for a short period. The doctor was very quick to get him off the oscillator when she saw it was failing. I headed out around 6:30am expecting that they would be able to get it working before Christa arrived at the hospital.
Christa called me at home around 9:30am (I was taking a short nap, expecting to go into work before lunch) to let me know they were still having problems. There was some concern about the fluid around his lungs and were considering inserting a catheter to try draining some off. The staff was also a little concerned about swelling in his "boy parts", but this was not uncommon. Her tone had me worried, so I changed plans and decided to head back to the hospital.
I arrived at the hospital around noon. Not much went on for the next hour while they checked his tests and vitals. They were indeed planning on inserting the catheter around his lung but were waiting for the surgeon to finish up elsewhere. We decided to grab a quick bite downstairs. Near the end of lunch they called us for authorization to perform the procedure. We agreed and headed back to PICU to hear about it from the surgeon. He explained that they were going to insert a catheter in Nathan's "third space" to alleviate the fluid build-up around his lungs. This seemed to be limiting his capacity and also causing extra pressure to his lungs, keeping the oscillator from working properly (it exerts less force per stroke than the other breathing machine). The respirator expert (for lack of a better term) pulled us aside to explain what they were hoping to accomplish with this procedure. This guy was awesome; he's been doing this for 20 years and it really shows. He put us completely at ease and made us very comfortable about everything that was going on.
By this time it was 3pm and I needed to head out to pick Alyssa up from daycare (Christa is staying at the hospital overnight). Just as I was leaving, the surgeon walked over and let me know he was done and that it went great. They were optimistic that this would help alleviate the pressure around Nathan's lungs. After picking Alyssa up, I called Christa up for an update. The doctors had also decided to insert a catheter into Nathan's abdomen to try and relieve some of the fluid there as well as in his "boy parts". This was going well and they had already seen some fluid extracted. His blood gas readings and lungs are doing so well they've decided to keep him on the original breathing machine. This is pretty much all the news I have for today, but it seems things are taking a positive turn.
Christa called me at home around 9:30am (I was taking a short nap, expecting to go into work before lunch) to let me know they were still having problems. There was some concern about the fluid around his lungs and were considering inserting a catheter to try draining some off. The staff was also a little concerned about swelling in his "boy parts", but this was not uncommon. Her tone had me worried, so I changed plans and decided to head back to the hospital.
I arrived at the hospital around noon. Not much went on for the next hour while they checked his tests and vitals. They were indeed planning on inserting the catheter around his lung but were waiting for the surgeon to finish up elsewhere. We decided to grab a quick bite downstairs. Near the end of lunch they called us for authorization to perform the procedure. We agreed and headed back to PICU to hear about it from the surgeon. He explained that they were going to insert a catheter in Nathan's "third space" to alleviate the fluid build-up around his lungs. This seemed to be limiting his capacity and also causing extra pressure to his lungs, keeping the oscillator from working properly (it exerts less force per stroke than the other breathing machine). The respirator expert (for lack of a better term) pulled us aside to explain what they were hoping to accomplish with this procedure. This guy was awesome; he's been doing this for 20 years and it really shows. He put us completely at ease and made us very comfortable about everything that was going on.
By this time it was 3pm and I needed to head out to pick Alyssa up from daycare (Christa is staying at the hospital overnight). Just as I was leaving, the surgeon walked over and let me know he was done and that it went great. They were optimistic that this would help alleviate the pressure around Nathan's lungs. After picking Alyssa up, I called Christa up for an update. The doctors had also decided to insert a catheter into Nathan's abdomen to try and relieve some of the fluid there as well as in his "boy parts". This was going well and they had already seen some fluid extracted. His blood gas readings and lungs are doing so well they've decided to keep him on the original breathing machine. This is pretty much all the news I have for today, but it seems things are taking a positive turn.
Wednesday, August 8, 2007
Tuesday Evening, 8/7/07
Not much has gone on today, which I guess after yesterday morning is a good thing. They've changed some of his treatments (nutrients, breathing, etc) but his condition has mostly stayed the same. His heart rate was high when I came back in around 7:30pm tonight, which they attribute to the amounts of extra fluid his body is absorbing through diffusion. They've started him on Lasix to lower his heart rate, this seems to be helping a bit. The nurse reminded me that tonight will be the 72-hour point at which swelling generally peaks after a major surgery. Hopefully this means his situation will stabilize further and he'll start on the track to recovery. I'm staying the night in PICU and am hoping his condition is improved in the morning.
The Lasix is working well, but I understand a bit more about why they're cautious to use it. Although it helps manage his heart rate, it also results in increased urination. While this wouldn't normally be a bad thing, it does two things: 1) they cannot accurately measure his normal urination rate, and 2) it means he will take in more fluids. Because he is diffusing, he's not expelling liquids efficiently; that is, he's absorbing more than he should (which causes the swelling).
Regardless, everyone is agreement that giving him the Lasix was the right move. I'm crossing my fingers that his swelling is contained until the morning. If that happens, I'm cautiously optimistic that the worst is behind us.
The Lasix is working well, but I understand a bit more about why they're cautious to use it. Although it helps manage his heart rate, it also results in increased urination. While this wouldn't normally be a bad thing, it does two things: 1) they cannot accurately measure his normal urination rate, and 2) it means he will take in more fluids. Because he is diffusing, he's not expelling liquids efficiently; that is, he's absorbing more than he should (which causes the swelling).
Regardless, everyone is agreement that giving him the Lasix was the right move. I'm crossing my fingers that his swelling is contained until the morning. If that happens, I'm cautiously optimistic that the worst is behind us.
Tuesday, August 7, 2007
Monday Evening, 8/6/07
Monday morning started off well enough. Nathan was doing satisfactory, so Christa drove home for some rest (she only slept 2 hours in those crappy waiting room chairs). I dropped Alyssa off at daycare and went into the office. I had a vendor meeting for 1pm, so I planned to finish up and get back to the hospital as soon as possible. I was only at the office for an hour when Christa called; the hospital had called to ask for verbal authorization to take Nathan back into surgery. He was swelling up and there was a danger that his aorta would become blocked and/or his breathing would be affected. I ran up to Baltimore immediately. Fortunately, they had relieved the problem before I even arrived. His foley tube was blocked and wasn't allowing urine to pass. Replacing it with a larger tube allowed the urine to drain and his swelling subsided.
Nathan's condition hasn't changed over the last 9 hours or so. His entire body is mildly swollen, but will probably get worse before it gets better. This is typical for any major surgery. The focus is to maintain his vitals and ween him off the breathing apparatus as he becomes stronger. We've been told not to expect much improvement over the next few days. The main battle right now is keeping him stable and making sure his abdomen gets proper blood flow to keep the healing process in motion. If we're lucky no additional complications will surface, but that is always a possibility.
Nathan's condition hasn't changed over the last 9 hours or so. His entire body is mildly swollen, but will probably get worse before it gets better. This is typical for any major surgery. The focus is to maintain his vitals and ween him off the breathing apparatus as he becomes stronger. We've been told not to expect much improvement over the next few days. The main battle right now is keeping him stable and making sure his abdomen gets proper blood flow to keep the healing process in motion. If we're lucky no additional complications will surface, but that is always a possibility.
Monday, August 6, 2007
Sunday Evening, 8/5/07
Yesterday morning started great. Both kids woke up (Alyssa - 5, Nathan - 2) woke up and were in great moods. They both had breakfast, played around, watched TV, and had lunch around 11:30. Around noon, we all headed out for a few errands and shopping. As we pulled up to bank, Nathan started crying and screaming. He expressed that his stomach hurt, but didn't want anyone touching it. Christa held him while I went into the bank and noticed that he was sweating quite a bit but didn't have a fever. When I came out, he was no better and really didn't seem ok to continue with the activities so we headed home.
Over the next two hours, he became very pale. He was cold to the touch and clammy, but showed no signs of fever or vomiting. He tried to sleep but was unable to get comfortable, moving every few minutes. He drank a couple sippy cups of apple juice or water, but did not pass anything through his system. Around 3:30 we noticed his stomach was very pronounced. We thought it might be a gas bubble or possibly even appendicitis (unlikely without fever/vomiting), but I paged his pediatrician because of how large his stomach had become. After hearing his symptoms, he instructed us to take him to the ER.
We drove him to Carroll County Hospital around 4:30. His lips were very blue at this point, and he seemed to be going in and out of consciousness. He was immediately admitted and taken to the ER for tests. They inserted a tube into his stomach; over the course of an hour, 600mL of liquid was drained from his system. He began to regain some color, and they were able to stabilize his vitals, but it was obvious something else was going on. The immediate focus was on diabetes (no family history) or appendicitis, although they were covering all bases. They arranged for him to be transported via helicopter to the University of Maryland Medical Center (UMMC) in Baltimore where they have an experienced pediatric surgery unit. By 6:15pm the helicopter had arrived and the EMTs and UMMC nurse began preparing him for transport. He took off around 6:30pm with an estimated flight time of 12 minutes to UMMC.
[ Side note: our babysitter was able to come to the hospital and pick up Alyssa, and take her home for the evening. She's doing great. ]
We arrived at UMMC around 7:45pm. After making our way to the Pediatric ER, they informed us of the gruesome news. Xrays revealed something seriously wrong with Nathan's abdomen. There appeared to be some sort of blockage or damage to his intestines. The only thing they could do was take him into surgery immediately. We signed off the process and followed him to the pre-op OR area. His surgeon had already arrived, but they had to page the on-call anesthesiologist. She finally made it in around 9:20pm and they briefed us on the procedure. They expected it would take at least a couple hours, possibly more. At this point we weren't sure if we'd ever see him alive again, so it was very difficult for us. We made our way into the waiting area in the atrium while he proceeded into surgery.
[ Side note: this is a really beautiful hospital. It's incredible what they've done by wrapping an old hospital with new architecture. If you haven't seen it already, you should check it out. ]
The surgeon and an attending finally came out around 12:30am. It's a good thing I was asleep on a bench or I probably would have freaked at the sight of the 2nd person accompanying the surgeon. He explained to us that Nathan has a condition called Volvulus (http:// en.wikipedia.org/wiki/Volvulus). They had to remove 1/3 of his large intestine and a portion of his small intestine. There was a length of small intestine that was not healthy, but was also not dead. In these cases, they err on the side of caution, choosing to save the unhealthy portion, hoping it will resume blood flow and heal on its own. If it does not heal properly, he will not have enough digestive tract to digest his food properly. The intestine was detached from his bowel and terminated in a colostomy outside his stomach. This gives him a "window" into his healing process. By 2pm we both resigned to the waiting area and tried to get some rest.
Surprisingly, I slept lightly until 8am. We went in to check on Nathan and were surprised to see him semi-coherent. I had expected him to be completely "out of it" for at least 24 hours, so this was a shock to me and really when I started to break down. Fortunately, the section of unhealthy small intestine is healing properly and has good blood flow, so the things that NEED to happen right now, ARE happening. If all goes well, he will still need another surgery to reattach the intestine and close everything up. In a perfect scenario, it will still be a few weeks before he is released from the hospital.
I'm not sure how rare/common Volvulus is for infants, but it's categorized as a birth defect. There's no way to diagnose this until it actually happens, and it's not hereditary or something you can develop. You either have it, or you don't. Obviously, it's imperative to get someone in this condition to the proper care as quickly as possible. We were fortunate and/or lucky that a) we called his pediatrician in time, b) his pediatrician had us go to ER in time, c) CCHS ER had him stabilized and transported to UMMC in time, and d) UMMC was able to perform surgery successfully in time. He's a very strong little boy and I can't begin to describe how proud I am of him for hanging in there. He hasn't cried once since we arrived at the hospital. He's still very sick, but so far everything has gone in his favor.
Over the next two hours, he became very pale. He was cold to the touch and clammy, but showed no signs of fever or vomiting. He tried to sleep but was unable to get comfortable, moving every few minutes. He drank a couple sippy cups of apple juice or water, but did not pass anything through his system. Around 3:30 we noticed his stomach was very pronounced. We thought it might be a gas bubble or possibly even appendicitis (unlikely without fever/vomiting), but I paged his pediatrician because of how large his stomach had become. After hearing his symptoms, he instructed us to take him to the ER.
We drove him to Carroll County Hospital around 4:30. His lips were very blue at this point, and he seemed to be going in and out of consciousness. He was immediately admitted and taken to the ER for tests. They inserted a tube into his stomach; over the course of an hour, 600mL of liquid was drained from his system. He began to regain some color, and they were able to stabilize his vitals, but it was obvious something else was going on. The immediate focus was on diabetes (no family history) or appendicitis, although they were covering all bases. They arranged for him to be transported via helicopter to the University of Maryland Medical Center (UMMC) in Baltimore where they have an experienced pediatric surgery unit. By 6:15pm the helicopter had arrived and the EMTs and UMMC nurse began preparing him for transport. He took off around 6:30pm with an estimated flight time of 12 minutes to UMMC.
[ Side note: our babysitter was able to come to the hospital and pick up Alyssa, and take her home for the evening. She's doing great. ]
We arrived at UMMC around 7:45pm. After making our way to the Pediatric ER, they informed us of the gruesome news. Xrays revealed something seriously wrong with Nathan's abdomen. There appeared to be some sort of blockage or damage to his intestines. The only thing they could do was take him into surgery immediately. We signed off the process and followed him to the pre-op OR area. His surgeon had already arrived, but they had to page the on-call anesthesiologist. She finally made it in around 9:20pm and they briefed us on the procedure. They expected it would take at least a couple hours, possibly more. At this point we weren't sure if we'd ever see him alive again, so it was very difficult for us. We made our way into the waiting area in the atrium while he proceeded into surgery.
[ Side note: this is a really beautiful hospital. It's incredible what they've done by wrapping an old hospital with new architecture. If you haven't seen it already, you should check it out. ]
The surgeon and an attending finally came out around 12:30am. It's a good thing I was asleep on a bench or I probably would have freaked at the sight of the 2nd person accompanying the surgeon. He explained to us that Nathan has a condition called Volvulus (http:// en.wikipedia.org/wiki/Volvulus). They had to remove 1/3 of his large intestine and a portion of his small intestine. There was a length of small intestine that was not healthy, but was also not dead. In these cases, they err on the side of caution, choosing to save the unhealthy portion, hoping it will resume blood flow and heal on its own. If it does not heal properly, he will not have enough digestive tract to digest his food properly. The intestine was detached from his bowel and terminated in a colostomy outside his stomach. This gives him a "window" into his healing process. By 2pm we both resigned to the waiting area and tried to get some rest.
Surprisingly, I slept lightly until 8am. We went in to check on Nathan and were surprised to see him semi-coherent. I had expected him to be completely "out of it" for at least 24 hours, so this was a shock to me and really when I started to break down. Fortunately, the section of unhealthy small intestine is healing properly and has good blood flow, so the things that NEED to happen right now, ARE happening. If all goes well, he will still need another surgery to reattach the intestine and close everything up. In a perfect scenario, it will still be a few weeks before he is released from the hospital.
I'm not sure how rare/common Volvulus is for infants, but it's categorized as a birth defect. There's no way to diagnose this until it actually happens, and it's not hereditary or something you can develop. You either have it, or you don't. Obviously, it's imperative to get someone in this condition to the proper care as quickly as possible. We were fortunate and/or lucky that a) we called his pediatrician in time, b) his pediatrician had us go to ER in time, c) CCHS ER had him stabilized and transported to UMMC in time, and d) UMMC was able to perform surgery successfully in time. He's a very strong little boy and I can't begin to describe how proud I am of him for hanging in there. He hasn't cried once since we arrived at the hospital. He's still very sick, but so far everything has gone in his favor.
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