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.

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 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.

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.

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.

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.

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.

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.

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.

Friday Evening, 12/08/07

I can tell when it's been too long since my last update. People have read the most recent entry and express their joy in hearing about Nathan's recovery. Unfortunately, things have not been going very well since then. His intestine is still not working as hoped. In addition, he's effectively depleted his vitamins and is in the "hibernation mode" again. They moved him to the ICU this evening for a blood transfusion and will be performing another series of desensitization shots. I know it's very painful for him, but it simply must be done for him to survive. The fact that they're doing this on a Friday night at the hospital, where they routinely "coast" through the weekends, emphasizes the necessity of this procedure. I think the plan is to keep his vitamins and TPN separate to avoid any repeats of the allergic reactions we saw after the last desensitization.

Updates to follow.

Tuesday Evening, 11/27/07

Nathan's recovery has been slow and steady. He moved from the ICU to a room in the IMC, and has since been moved to a "regular" room on the pediatric floor. The nurses are back to flirting with him, and he's just as ornery as usual. They turned off his fentanol drip a few days ago, giving him morphine as needed. His pain levels seem to be higher than the last surgery, but he also had a lot more work done to him this time around.

It is so nice not having to worry about ostomy bags anymore. His skin is in good shape, even the incision is healing well. I don't know if he'll be home for Christmas, but at least we can imagine closure in the not-too-distant future.

Friday Afternoon, 11/23/07

Nathan's recovery has been pretty smooth so far. They extabated him last night. He experienced some swelling and discomfort in his throat from the breathing tube, which is normal. They've had him on a nebulizer to help with this. Other than that, everything else is fine. It's awesome not having to deal with the ostomy bag changings or leaks.

Tuesday Post-Op, 11/20/07

The surgeon finally came up around 20 minutes ago. It was a very long surgery but the results were positive. They ended up reconnecting his intestines in 4 different spots, with some additional minor repairs and cleanup of scar tissue. Nathan will remain on the breathing tube for a couple days, a G tube for feeding, a catheter in his abdomen in case of leaking, and the broviac (central line) he already had, for nutrition and fluids. The incision was stapled up due to the possibility for infection, with the stomas left open and packed (with gauze) to allow them to heal properly.

Christa and I are in the waiting room now, waiting for them to get him situated in the PICU. We'll be heading home once we have a chance to go in and see him. We're hoping to have him home by Christmas, but there's no guarantees. As usual, I'll try to post updates over the next few days as he comes out of sedation and is extabated.

Tuesday Op-Update, 11/20/07

We've gotten a few small updates from the hospital staff. A couple hours ago one of the nurses called my cell to let me know that the surgeon incised Nathan around 1:40pm and that he was stable. About 30 minutes ago, the anesthesiologist stopped by to let us know that they had to leave the breathing tube in Nathan, but that everything else was proceeding fine and he was stable. A few minutes ago, a doctor came by and told us that Nathan was doing well. The good news is that it's official; he won't require an ostomy going forward (there was still a small possibility). It also sounds like they had to remove very little of his remaining intestines and that things look positive for a full recovery. He also said that Nathan would still be in surgery for another 3 hours, so we've got a ways to go yet.

Tuesday Pre-Op, 11/20/07

We just got back to Nathan's room after taking him to the pre-operating rooms. It was very uneventful, he was in a good mood. The anesthesiologist did her job very quickly, and off he went. The surgeon told us to expect it will take 6-8 hours. They're probably going to reconnect up to 3 sections and insert a G tube (used to feed directly to the stomach). In a best-case scenario, he could come out of surgery without the breathing tube, but I wouldn't expect it.

Going to grab some lunch, gonna be a long day.

Monday Evening, 11/19/07

It's been a while since I updated the blog, but the story has been the same. A leaking ostomy bag here, an allergic reaction there, and a very long wait until his next surgery. Wash, rinse, repeat. Finally, we've reached the eve of his last surgery (we hope). Nathan will be going back into the operating room tomorrow to have his intestines reattached and his ostomy removed. With the stomas and ostomy gone, his skin can begin to heal. And with an intact intestine, hopefully he can start to absorb his multivitamins.

For what it's worth, his spirits have remained high. He wants to walk and play whenever his condition will allow. The only thing holding him back has been the bag. He is very chatty with the staff and enjoys spending time with his sister playing games and watching movies. He's even been known to run after her (more of a fast shuffle) when he gets really excited. Everyone in the pediatric hospital is very familiar with Nathan and completely adore him. His chubby little cheeks (due to the extra IV fluids) and long, scruffy hair just add to his appeal. It's amazing what he's been through, and I hope this next procedure starts us down the path to his full recovery.

I will try to update the blog tomorrow as the surgery happens, but there probably won't be any news until after they're done.

Tuesday Evening, 11/6/07

Nathan had another reaction to something last night. They think it's some sort of preservative in the vitamins, but there's not sure. I spent the day at the hospital today to check in on him and to speak with his doctors. He had a very good day, but it looks like he's not coming home for quite some time.

They're going to move him back to the ICU for a day to start some desensitization training (sounds like something George Bush authorized in private). The allergists think they can build up his immunity to the allergens in the vitamins. With his surgery coming up in two weeks, and these repeated allergic reactions, they simply don't feel comfortable sending him home. Adding it up, that means another two weeks waiting for surgery and another (minimum of) two weeks for post-operation recovery. This means that Nathan will be home at the earliest after four months of hospital stay.

That's all I have to say for now.

Thursday Morning, 11/1/2007

Just a quick update to get everyone up to speed. I'll try to post more details this evening.

Nathan was released last Friday and went home with us. He was very lethargic all weekend. By Monday they recommended we bring him back to the ER at UMMS. His blood pressure was very low, heart rate was very high, and he just wanted to sleep. They admitted him and moved him up to the PICU, after taking a quick CT scan of his brain (everything appeared normal). They immediately drew labs and began to cultivate his cultures. He also began taking dopamine and norepinephrine for his blood pressure, and was put on the breathing tube late Tuesday as a precaution.

The doctors and surgeons were perplexed by his condition. He didn't have a fever, but showed the symptoms of an infection. After much research, his surgeon came back with the possibility that he's depleted of vitamins. Because of his allergic reaction after the 2nd surgery, they had discontinued multivitamins in his TPN. In its place, the nutritionist suggested vitamins by mouth. In hindsight, he's been unable to absorb most anything taken orally, so he's basically been living off of vitamin stores for the last month or so. Apparently he finally ran out and his body went into a "low gear", so to speak.

They immediately began him on thiamine and other vitamins yesterday morning and it showed very quick results. As of last night, he was extibated (removed the breathing tube) and had all fluids removed except his general IV. We watched Toy Story 2 together until he fell asleep.

I called the hospital this morning and he is doing great. They are going to remove his foley and arterial lines soon, and he's being moved to a room in the IMC (step down from the ICU, step up from the regular wings). Christa is on her way now, and I'll be going in tomorrow night to see him. I'd love to see him released tomorrow, but I suspect it may be as late as Monday. I don't think they'll release him on the weekend, and they will probably be hesitant to do it as quickly as tomorrow.

Heading Home!

Details to follow soon...

Tuesday Evening, 10/16/07

The last few days have slowly gotten better. They've managed to get an ostomy bag to stay and his skin has gotten much better. He went into the PICU yesterday while they started him on lipids again. They wanted to keep an eye on him in case he had a reaction. Everything went fine, and he's starting to cycle the times he's hooked up to TPN and lipids. Last night he was unplugged for 4 hours, tonight he's off for 6 hours. They expect him to have 8 hours off each day by the time he comes home. They've also put him on Zantac again, which has helped his stomach.

Now that he's feeling better, we've been able to get Nathan up and walking again. He's probably spending more time walking than he is sitting or lying down. He's getting around quite well. His favorite activity is to walk out to the atrium, take the glass elevator down to the ground floor, and throw coins in the water fountain. He also got to see Bailey, a friendly Dalmation that the owner brings out to the pediatric unit once in a while. He was a little shy, but went up with me to pet the dog and feed him a treat. One of the ladies from Child Life took a polaroid of him with the Bailey. Child Life is a department in the hospital that helps tend to the more personal and emotional aspects of the kids and their families. They're very nice people and have always been very helpful and caring.

The doctors told Christa today that they're shooting to have him home by next Tuesday. We were hoping for this week, but I think the whole safflower oil episode put the kibosh on those plans. We'll just be very thankful to have him home.

Saturday Morning, 10/13/07

I forgot to mention last night that due to Nathan's vomiting, they re-inserted a NG tube to help pull the stuff out of his stomach. Apparently this has been helping; they said he had a very peaceful night last night, and the bag didn't leak at all. We're hoping they can remove the NG tube today. Alyssa and Christa are headed over after cheerleading practice this morning. I'll be heading over this afternoon and will stay until bedtime.

Friday Evening, 10/12/2007

The last few days have been frustrating (par for the course). Because Nathan had a reaction to some of his treatments, they discontinued lipids a while back. Unfortunately, the lipids are his only source of fats, so he hasn't been putting on any weight. They think they've isolated his reaction down to multivitamins in the original TPN, so they're going to try starting him on lipids again on Monday.

In the meantime, they got creative with replacements. One of the allergists came back with the idea of putting him on safflower oil. Not as a drip, but to be taken orally as well as topically. Yes, you read that right, they wanted to rub him down with safflower oil, expecting that some of it would absorb into his skin.

Uh...

Yeah, the idea was as stupid/bad/ridiculous as it sounds. I hate to beat up on the doctor since I know she meant well, but the whole thing borders on quackery. The oil they had Nathan swallow has made him sick for the last couple of days. He's been throwing up every hour, mostly saliva with a small amount of oil. On top of that, the oil on his skin made it even more difficult for the ostomy bag to adhere, as if we weren't having enough problems with it.

We're getting anxious with the theoretical goal of Nathan's departure from the hospital coming up next week. His surgeon has been on vacation for a week and was supposed to return on Thursday, but we haven't seen or heard from him. It just feels like everyone is disconnected. I know he's still getting great care, but it's very frustrating. Especially when we're supposedly so close to taking him home.

Tuesday Morning, 10/9/2007

This whole experience has seemingly twisted the fabric of time and space. Nathan has been in the hospital for 2 months, but it feels like 10 years. We used to look forward to weekends with our little family. Now weekends just mean a lean hospital staff and long hours of enduring. Our boy is slowly getting better, but it's taking a heavy toll on the rest of us.

Like I said, he's doing well. Regardless, they've had a real problem with his ostomy bags. His stomas are arranged in such a way that small, child-sized bags won't fit, and adult bags are simply too large to adhere to his skin properly. Yesterday alone, I think they had to replace his bag four times. This is having a very bad effect, where either the adhesives pull his skin when the bags are removed, or the acidic bile eats away at his skin the rest of the time. Amazingly, he continues with high spirits. He's miserable when they're working on the bags, often times they have to hold him still. As a parent, it's very painful to watch.

We just want to come home. And yet, the ostomy bag problems loom large on the horizon. My reservoir of hope and patience is running low. I hope he's smiling when I visit tonight.

Friday Evening, 10/5/2007

Nathan has walked the hallways twice today without any assistance. Christa took him down the B wing from his room, through the lobby, into the C wing and back. I arrived while they were gone; it was quite a surprise to see him walking back in, holding nothing but a leash attached to a rolling dinosaur toy. It really tuckered him out though, he fell asleep on my lap for a couple hours afterwards.

I took him back out for more walking this evening, through the A and C wings. He did great and got plenty of attention from the nurses. We're back in the room again watching Kiki's Delivery Service. I also emptied his ostomy bag and gave him a Lovenox shot tonight. Now nobody (Christa) can accuse me of never having done either. ;-)

One item of disappointment... they've been giving Nathan small amounts of formula, but his body hasn't been processing much, if any. He's passing basically everything he's taking in, which means he's going to have to rely on TPN for his nutrition. We were really hoping he'd be able to drink more formula, but it's not looking like it's going to happen. The surgeon stopped in today and mentioned that worst case, they would do his next surgery on November 20. But that's only if they must perform surgery early... they would rather hold off longer to let his intestines heal as much as possible.

The holiday seasons are going to be difficult this year. Oh well, gotta keep on keepin' on.

Thursday Morning, 10/4/2007

The allergist stopped by yesterday to test Nathan for allergies related to his hives/swelling last week. Nothing showed any reaction except for histamines (the test control substance). There is a chance that the Zantac in his TPNs are affecting the test results, but they feel comfortable substituting safflower oil for his lipids. They're going to start it soon, no schedule yet.

Christa has been working with Nathan to slowly build up his strength and maneuverability. He's able to walk short distances on his own, and has been getting plenty of "exercise". We expect he'll be home in a couple weeks, but nothing is certain yet. He still needs to start absorbing more nuitrition and put on some weight.

I grabbed a few pictures with my iPhone over the last week. Enjoy.

Tuesday Morning, 10/2/2007

Sorry for the lack of updates recently. If you've been following closely, you probably know this means things are moving forward in a positive manner, slowly. Updates are much more frequent when there is bad news and I need to get stuff off my chest.

I started a new project at a customer site last week, where I have no access to the Internet. This means that I have less time to post blog entries, since I'm at work all day and with Nathan in the evening. I appreciate your patience while I try to bring you more news on his recovery.

In short, not much has changed over the last week. He's walking with assistance and generally in a good mood. His favorite movie seems to be Kiki's Delivery Service. If you like other movies by Miyazaki (Spirited Away, Princess Mononoke, Howl's Moving Castle), you'll definitely like this one. The plot is less heavy than some of his other stories, and is more of a young child's anime. Even though it seems like a girl's movie (about a young witch finding her purpose), it's really good for all ages, boy or girl.

The doctors are hoping Nathan can be home in a couple weeks. No promises, it all depends on Nathan. Gotta run.

Wednesday Morning, 9/26/07

It's amazing what a difference a couple of days can make. Last weekend was a little depressing. Nathan was having problems with his ostomy bag. The nurses were having a hard time getting anything to fit him properly, which resulted in leaks and was causing his skin to get irritated. On top of that, he was spitting up quite a bit, which was also irritating his throat and skin. They don't have anyone on staff for the weekends that specializes in ostomies for kids, so we had to wait for Monday.

They still had some difficulties getting an ostomy bag fitting well, even through Tuesday, but it seems to be better now. He isn't leaking much, and they're making sure to empty it more frequently. His intestines seem to be working great after this surgery. His weaning schedule is almost done, and his spirits have been up (probably since I haven't been around to hassle him). Christa has been working with the physical therapist, and they've been able to get Nathan standing up and walking around with assistance. She plans to take him for a walk down the hall today.

They're going to try and replace his pic line today. He'll be going down to the Radiology department for the procedure. If that doesn't work, he might have to go to the Operating Room. We're optimistic that everything will go fine in Radiology, but this experience has taught us that bad things often follow good times, so we're patient.

Some very cool news from yesterday. Christa IM'd me (instant message) around 3:30 in the afternoon to ask me if I've ever heard of "Bryan Roberts". Admittedly, I'm not near the MLB fan that I used to be, but I've been to an Orioles game this year and drive right by Camden Yards every time I go to the hospital. So I knew immediately that she was talking about the O's 2nd baseman, Brian Roberts (who happens to be having another good year at the plate). It turns out that Brian stopped by the hospital to see the kids in the Children's Hospital. He visited Nathan, bringing a t-shirt, autograph, an O's cap, and a toy car. Nathan's really too young to know who he is, but I hear that Brian was able to get a smile out of him. According to Christa, Brian had heart surgery when he was five years old. I don't know if he does this because a) he's a great guy, b) he can sympathize with the kids due to his own past, or c) the O's marketing department made him. Either way, it made my day. I'm not an O's fan, but I'll never forget this gesture. If Brian or anyone from the O's staff ever gets to read this, please know that this is a wonderful thing you do... not just for the kids, but for the parents too. Thank you very much for the time that Brian got to spend with our son.

And here I am, wiping away the tears. I'm such a wuss. :)

Sunday Morning, 9/23/07

The last few days have been mostly uneventful. Nathan has continued to recover slowly. His stomas are working great; the one leading from his stomach is passing his fluids perfectly, while the one leading to the closed end isn't really doing anything, but has a very healthy color. He's been vomiting clear liquid (no bile) the last couple of days. This is normal, but makes him uncomfortable. That, along with the hourly vitals checks, mean he doesn't get much good sleep.

I said that it's been uneventful, but that's not completely true. Yesterday was a little weird. His pic(?) line came out yesterday. This is the line that they use for his TPN and lipids, as well as for drawing blood. They don't have anyone available over the weekend to replace it, so they had to insert an IV in his other arm. A pediatric specialist will be available tomorrow to fix him up with a new pic line.

We had our own version of the Jerry Springer show yesterday afternoon. The parents of the child next door were fighting, and they actually had to call up hospital security to escort them out. The child was due to be released anyways, so it's not like they were in danger.

Anyways, things are proceeding slowly. We have no updates on a timetable for his release or the next surgery. I'm hanging out today while Christa takes Alyssa to some sort of butterfly event. Seriously. All I know is that they're releasing butterflies or something. I'm sure it's a great time... if you're a girl. :)

Boys day out at the hospital...

Thursday Morning, 9/20/07

Christa arrived at the hospital early this morning. Nathan's swelling has not increased since yesterday. He had a minor fever last night which was relieved with Tylenol. They are still planning to extubate him sometime this morning. The surgeon visited already and commented on how great Nathan looks and how well he's doing. They're going to put an ostomy bag over the two stomas today.

That's all for now...

Wednesday Evening, 9/19/07

The nurses are focused on controlling Nathan's pain levels today. He seems to be doing well, although I noticed some swelling in his face and neck by early afternoon. The rest of his body looks fine, and his stomas appear healthy. I left around 3:30pm to pick up Alyssa from daycare. Shortly thereafter, Christa emailed me to let me know that his stoma is doing very well. The one attached to the section coming from his stomach is already leaking fluid. This is a very good sign that things are starting to work properly.

P.S. I added a post below with an image from yesterday (pre-surgery).

Wednesday Morning, 9/19/07

Nathan is surprisingly alert this morning. He's lying in bed right now eyes partly open, holding Christa's hands and watching a movie on her laptop. He even waved to me once, and is mouthing words and able to respond with nodding and shaking his head. I wouldn't normally want to expose him to this much stimuli this soon after surgery, but watching movies tends to make him sleepy. His vitals are good, with a moderately high heart rate. Everything else looks good, including his breathing. There's a chance he will be extubated (have the breathing tube removed) sometime tomorrow. Within a few days after that (or sooner), he could be back to one of the regular wings.

It's hard to assimilate that Nathan really is in better shape than yesterday morning, when he was sitting up playing with toys and chatting. But really, he is. The surgeon did a lot of work to repair "adhesions" (scar tissue, I think) and jumbled-up intestines. It was a lot more work than any of us expected still needed to be done, but we're looking at it pragmatically; we're just grateful that they were able to get it all repaired (sans reconnection).

There are going to be quite a few adjustments for our family in the near future. We're pulling Nathan out of daycare; they've been holding his spot at a reduced tuitiion rate for the last 6 weeks. I think they're going to continue to hold his spot through his security deposit, but we won't have to pay his weekly discounted rate. Alyssa will still be there, so hopefully they'll be back together at daycare before too long.

All in all, I'm not too depressed. We're not where we hoped to be, but it could definitely be worse. It helps to keep an even keel throughout this experience. I took some pictures of Nathan when he was playing on the mat yesterday morning. I'll try to put something up this afternoon as time permits.

Tuesday Evening, 9/18/07

Timeline:
11:30am - Nathan moves to surgery pre-op area
12:30pm - Moved to operating room
2:00pm - Surgery begins
7:30pm - Surgery finishes, Nathan is moved to PICU

Details:
The surgeon came out to talk with us shortly after finishing up. He wasn't able to reattach Nathan's bowels, but that was really a best-case scenario. There was quite a bit of scar tissue on Nathan's intestines, including a large jumble of bowel that needed to be unwrapped and inspected. A small hole was found and repaired near the area where his abdomen catheter was inserted. Small portions of dead intestine were removed at the ostomy and somewhere around 65cm down from his stomach. Both ends of the intestine at this split were finished off with new ostomies (yes, two of them).

Summary:
This was neither a best- nor worst-case scenario. Nathan has enough healthy intestine that he can live a healthy, normal life if he fully recovers. He will have another surgery to remove the ostomies and reconnect everything. There's no timetable on his recovery right now, but it's going to take a while. He's going to be on the TPN and lipids for months to come. They are hoping to get him on some nutrition before long for his intestines and to counter the effects of TPN on his kidneys.

That's about all I have for this evening. I'll add more updates in the days to come as I have time to reflect on anything.

Tuesday Afternoon, 9/18/07

A quick picture of Nathan taken with my phone. This was Tuesday morning before the surgery.

Christa is sitting behind him, one of the physical therapists is to the right.

Tuesday Morning 9/18/07

Today is the big day. We've been impatient waiting for this, and now that it's arrived I'm very nervous. Last night I could feel my defensive mechanisms kick in; I start to prepare for the worst, so that if anything goes wrong I'm ready for it. I even woke to a bad dream this morning... the hospital had called to tell me the surgeon had just died. It seemed so real.

Nathan had another great day yesterday. He was able to stand up by himself in the bed for almost 20 minutes. He's very active now, and he'll need that strength for this surgery. Christa said he had a lot of visitors from the hospital all day... doctors, surgeons, nurses... seemingly everyone that has cared for him during his stay. He has really touched a lot of people's lives. I feel very fortunate that he's been cared for so well. I've seen some bad hospitals before; it's nice to see what a really good hospital is capable of.

The operation is expected to start around 1pm and last anywhere from 2 to 8 hours. I guess it just depends on what they find and can get accomplished. They seem to be optimistic that any blockage can be easily removed and that his ostomy can be reversed (i.e., put his intestines back together). There is a concern about his lungs. It's very important that Nathan is able to function without the breathing tube after his surgery. He was on it way too long after his last surgery, and they want to avoid any further possible damage to his lungs.

If all goes well, I should be reporting late tonight that the surgery went well and he will be going home in a week or so. I don't want to get ahead of myself, so I ask for everyone to please follow the blog and keep phone calls to a minimum. Please do not call our cell phones or the house. We'll update the blog and contact our close family once we have information back from the surgery team.

Everyone buckle in, here we go.

Monday Morning, 9/17/07

Nathan had a good weekend. A couple times he was able to stand in his bed, holding onto the guards (it's basically a large crib). He was very active, getting up on his knees at times. His surgery is tomorrow at 1pm. We don't know what will get done, other than the initial exploratory attempts. We're hopeful that the surgeons are able to reconnect everything so he could be going home soon.

Wednesday Evening, 9/12/07

Thanks to everyone who has been so patient throughout this ordeal. I should have updated the blog sooner, but it's been exhausting keeping up with work and trips to the hospital. I should also mention that Christa has really been a trooper all along. She's been getting up early every morning, getting Alyssa ready and taking her to daycare, and then driving to the hospital and helping get Nathan stronger each day. I know it's important for me to keep a paycheck coming in (especially since it's the only one we have right now), but without her support I don't know what we'd all do.

Nathan's surgery was pushed back another week. It is tentatively scheduled for next Tuesday. The surgeon wants Nathan as strong as possible before he goes back into the OR. I think this will help him towards a faster recovery next time around.

His progress has been slow and steady. He has started to kneel up on his own, and has also started to try and stand. He isn't able to put much weight on his lower legs, but this will come in time. The physical therapist is trying to get Nathan to kneel, then crawl, then walk. He's doing great, but it takes a lot of will and determination (Christa) to get him doing the right things sometimes.

Friday Morning, 9/7/07

Nathan was lethargic on Wednesday. I don't recall if it was a weaning day for him, so I'm not sure if it was due to overexertion on Tuesday or something related to the sedatives. Either way, he slept most of the day and wasn't very interested in therapy or other activities. I came to visit him that evening and he slept the entire time.

Yesterday was a little better. He did his therapy, which now includes playing with toys on a small table. This allows him to stand and play, while giving him something to hold onto. He's had a minor fever off-and-on for a couple days. They took X-rays of his stomach to get a better look at his internals and to help prepare for the upcoming surgery. It sounds like they're planning on taking him into surgery next Tuesday.

We're still waiting on the official results of the "upper GI" X-ray from his surgeon(s). The initial feedback we've received from other doctors is that his intestines and chest look good. I was with him for a few hours last night. He was very warm, peaking with a fever of 102.7. They gave him tylenol, which brought his fever down to 100 degrees before I left for the evening.

There was a bit of good news yesterday. A fairly significant amount of fluid came out of his stoma. This suggests that his intestines are starting to function properly. I don't want to get too optimistic, at least not until the surgery is performed and they have a real idea of where his recovery stands. The fluid itself was very different than the green coming out of his NG tube or the catheter in his abdomen. This stuff had a mocha coloring to it. I mentioned to his nurse that it looked like coffee with creamer. I think I've ruined coffee for her.

Tuesday Morning, 9/4/07

My apologies for the long lapse in new posts. I'd grown weary of the daily updates, particularly with very little changes in Nathan's situation. Today is his one month "anniversary" in the hospital. Acknowledgment of this brings a heavy sense of frustration and sadness, yet there is optimism that this can't last forever.

There has been continued gradual improvement in Nathan's condition over the last week. His voice has completely returned and he's now able to sit up on his own. He usually takes a daily wagon ride over to one of the other wings, although I've yet to see this first-hand. Alyssa has visited him a few times, she's been very good to him. We brought him balloons last week which really made him smile.

We don't have a firm date on when Nathan's next surgery will be. His surgeons have prepared us to expect that it might be little more than exploratory, depending on what they find. They suspect there is some blockage caused by scar tissue. Ideally, they would be able to remove the blockage and reconnect his bowels the way nature intended. Nobody will know until they get in there and examine.

That's all for now. I'll try to keep up the frequency of updates this week. I hope everyone enjoyed their vacation weekend.

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 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 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.

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. :)

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.

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.

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.

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!

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 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.

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.

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. ;)

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.

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.

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.

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.

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.

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.

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.

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.