Lukas Willem Bierema Ebell

Lukas' Story: December 1-15, 2002 | Lukas' Fund Home Page

November 15 - November 30, 2002
December 1 - 15, 2002
December 16 - 26, 2002

12/1/2002

When we arrived, the nurse had us wait in the hallway. Through the doors, we could see 5 people standing around Lukas, working intently. I guess three good days in a row was too much to hope for. Nothing terrible, but a bit of a setback this morning. The cardiothoracic surgeons stopped by and pulled out the chest tube. Unfortunately, they didn't first ask the neonatologists, who wanted to leave it in for a few more days due to the healing pneumothorax. Within minutes air started to reaccumulate in the space between the lung and pleura (the membrane covering the lung) and the neonatologists had to insert a new chest tube. This one is in a better position, and Lukas responded well. He probably lost a few hours of progress, though, and we hate for him to go through these procedures. Although the doctors numb the area and give pain medication, it is still no fun regardless of your size.

The other issue is his digestive system. There is a tiny tube that goes through the nose and into the stomach. It has a little bit of suction on it, to suck up any fluid or bile. Overnight, that tube got plugged, and fluid built up in his stomach, duodenum, and small intestines. When they discovered the plugged tube this morning, they replaced it, and immediately got a large amount of greenish liquid out. That is good - it means that his liver is producing bile and that it is getting into the duodenum. The bad news is that it was unable to make it's way down the digestive tract and out into the stool. It appears that there is a plug or blockage of some kind near the end of the small intestine, just before the large intesting begins. There are a number of possibilities, including meconium (fetal stool) that has become thickened and formed a plug, barium from the upper GI study that has hardened, or both. The slow function of his bowel, with only very slow contractions of the muscle in the wall of the bowel, is probably contributing as well. We are going to put some little suppositories in his little rectum to try and get things moving a bit. If that doesn't work, they will do use an enema with some liquid contrast material (Gastrograffin) to try and loosen or dissolve the plug. If that doesn't work (remember, many if's here...) surgery may be required to remove the plug or even a small section of bowel if it has been damaged.

Dr. Sola, the neonatologist, Dr. Biddle, the pediatrics resident, and Dr. Gow, the pediatric surgeon all spent time quite a bit of time with us today explaining what was happening. In my role as worried parent who happens to be a physician, I am especially appreciative of the outstanding communications skills that these physicians have displayed toward us. We are not easy parents to deal with, with more questions and an expectation for more detailed explanations than the average parent in the NICU. However, they have not been put off, and have actually seemed to enjoy the interactions with us. This we appreciate very much. A new team comes on board tomorrow, and we hope they are just as good at both the medical (tech) and personal (touch) skills of being a physician. We also appreciate the great care from the nurses and respiratory therapists - there is basically a nurse and an RT camped at Lukas' bedside round the clock, managing the minute-to-minute changes in blood pressure, oxygen saturation, pCO2 (carbon dioxide levels), and temperature. Very hard work, and it is so reassuring to us to know they are close by.

Finally, our friend Allison (see photo above), is a scientific illustrator, and made a pair of drawings to explain what a patent ductus arteriosus is, and how it is fixed. I love the Valentine heart (non-anatomically correct) attached to his little blood vessels!


Patent Ductus Arteriosus	PDA after ligation by the surgeons

12/2/2

Lukas had a quiet night, but was still requiring a fair bit of oxygen this morning. The x-ray helped us understand why - the atelectasis had returned in his right lung. With the air passages collapsed in part of the right lung, he only had about half of his lung available for oxygen exchange. The physicians made some changes in his position and ventilator settings to help reinflate the lung, and by the end of the day the FIO2 (percentage of air flowing into his lungs that was oxygen) was down to about 25% from 50%. That's good - a little progress in the right direction.

We also had progress at the other end, first a little "schmeer" of stool, then a nice healthy little bowel movement. We're so proud! ;-) This is also good news, since it suggests that his bowel may be starting to move a bit and that the obstruction maybe resolving. His bilirubin is also down further. All good. They are still following him closely, and we met the new surgeons (they change every week). Hopefully this means it is less likely that he will require some sort of surgery. He had another follow-up cranial (head) ultrasound, and the initial report was that it looked OK, but we're awaiting the official report. They also noticed that Lukas is hypothyroid - this means that the thyroid gland is underactive. In infants, this can lead to constipation, slow growth, and elevated bilirubin, all of which he has. If not treated within a month or two of birth, it can lead to brain damage, so we are happy that he got his first dose of medication today, within 2.5 weeks of his premature birth.

Laura got a visit from her colleagues Janet Truluck and Juanita Johnson-Bailey today, who whisked her away for a genuine Southern lunch at Marymac's, an Atlanta tradition. I saw patients this afternoon, and it was good to see our staff at the office and do something productive for a change! I also stopped by our house to say hello to Ken and Diane, who are housesitting and will be visiting us tomorrow. His new neonatologist is Dr. Theresa Gauthier (gowtee-ay), and she's terrific. Very down-to-earth, she communicates well with us, is very experienced, and is obviously very up-to-date. Being a good physician means knowing the best evidence, and then having the wisdom and experience to apply it appropriately to the patient in front of you. She has these skills.

12/3/2

Today was less encouraging. Lukas's heart and lung function was stable, but his belly was more distended this morning. He got a couple of enemas today, one with warm saline (salt water) and one with Mucomyst, to help get things going. The latter helps break down sticky fluid, and resulted in a small BM later in the day. However, we suspect that this won't be enough, and that he will require a further enema with gastrograffin (a contrast material) under fluoroscopy. Fluoroscopy is where you get a "moving x-ray image", so the doctor's can carefully monitor the injection of contrast to avoid damaging his tiny and delicate bowels. This will probably occur later tomorrow; the radiologist comes to Grady from Eggleston Hospital, we are told. Because they can monitor things under fluoro, they can be a bit more aggressive and hopefully have a better chance of clearing any obstruction. If not successful, I suspect our little guy will have surgery to follow, perhaps later tomorrow or Thursday.

Lukas also had an increase in bands in his blood count. These are immature forms of white blood cells. While it could just be his bone marrow starting to crank up, it could also indicate infection. He has been off the most powerful antibiotics on the planet for a whole 48 hours now, so I guess it's time to go back on, eh? His bilirubin also edged up again today, which could be a sign of infection. Likely sources of infection are his lines (IV, arterial, chest tube) so those were cultured. If cultures don't grow anything and he looks OK after 2 days, they'll stop the antibiotics again.

Ken and Diane visited today, brought some goodies (OK, everyone, we officially have enough snack food now!), and Diane cut Laura's hair. We lunched on Thai food in Virginia Highland - beautiful day today, sunny and 60's. We are now at 5 Thai restaurants, and each has been excellent.

12/4/2

Last night I dreamt that Lukas had hydrocephalus (enlarged ventricules with fluid in them in the brain, that can lead to brain damage). He doesn't, but I had to keep reminding myself every time I worke uup that his cranial ultrasound was normal. I asked Dr. Gauthier, the neonatologist, about the official reading on his cranial ultrasound of 2 days ago, and it was read as normal. That is great - the minior changes seen at Days 1 and 4 appear to have resolved.

I returned to the bedside after a short break, and found that he was breathing at a rate of 100 breaths per minute. While the ventilator was going at 45 bpm, he was adding another 55. Try breathing at a rate of three times every two seconds for a while and you'll see how it feels. This high rate was new, and it was clear that something was bothering.him. I called for his physician, who found that the site of the first chest tube was leaking greenish fluid. This is probably green because of bil tinging it, but it could also be a sign of infection. The thoracic surgeons put a suture in to close the leak, hopefully taking care of that problem.

Lukas went down to the radiology department today. This is quite a production - he was switched to a new ventilator, put in the same sort of portable incubator that he had been on coming from Athens, and took the elevator down accompanied by a large entourage. He tolerated the study very well, with no loss of oxygen levels (desaturation) despite being put on a table out of the incubator, lying on his belly and side, and lots of manipulation. He's a tough little guy, my son is. He is now back upstairs and doing fine, although his belly is still big. As it turns out, the obstruction appears to be in the terminal ilium, which is the last part of the small bowel, just before the colon. The colon looks OK, and had a little meconium in it. The bad news is that he will require surgery to correct this, probably tomorrow. Two major surgeries in his first 3 weeks of life, before ever weighing 2 pounds. That's a lot to bear. Think good thoughts, everyone.

12/5/2

Lukas is in surgery as I write these words. We met the surgeon, Dr. Barbara Pettit, who is Chief of Pediatric Surgery here at Grady. We were very impressed with her, both her confidence and her skill in explaining what she thinks is probably happening. Laura and I are waiting now - it should take about an hour. Lukas is doing OK otherwise, but the surgeon warned us that he is almost certainly going to look and do worse over the next two or three days before he starts getting better. This is terrifying, there is no other way to put it. Laura and I have both been nauseated all morning out of fear.

Auguste Rodin, the sculptor who created "The Thinker", said: "Patience is also a form of action." After over 2 hours of waiting, when the surgery was supposed to take only an hour, we have to remember that. They finally brought our Lukas back after 2 1/2 hours. He did well, and his little belly is much smaller. Here is what happened:

1. They make a large (for him) incision across the abdomen, below the bellybutton.
2. They inspected his intestines, and found that there was an area of narrowing (stenosis) near the end of the jejunum. The small intestines consist of the duodenum, then jejunum, and then ilium. Beyond that stenosis, the ilium was very small, as was the colon. That is probably because they were never really used, since use causes them to stretch to normal size.
3. They removed the stenotic section of small intestine (a very short length) and sent it to the pathologist for examination. One possibility, although relatively unlikely, is that Lukas has Hirschsprung's Disease, a congenital lack of nerves in the colon. This would require further surgical correction, but kids generally do pretty well afterwards, just have 3 or 4 BMs instead of 1 or 2 per day.
4. They also found a plug of meconium, and then a large plug of barium and stool. These were removed through the opening in the bowel made by the surgeon. One concern has been that Lukas has cystic fibrosis, since that can cause these meconium plugs. The surgeon and neonatologist think this is unlikely, but tests are pending.
5. The surgeon took the two open ends of bowel and attached them to the abdominal wall, creating two small stomas (openings) in the skin (see diagram at right). He will stool through the one that empties his proximal bowel; the other is connected to the distal segment of bowel. (Proximal means closer to the beginning of a structure, in this case closer to the mouth, and distal means further from the beginning) The good news is that they can start using his bowel pretty quickly, hopefully within a few days. Then, when he weights 4 1/2 pounds, they will reconnect the ends of bowel assuming that he doesn't have Hirschsprung's.

6. His liver looked a little inflamed and nodular. This is probably just because he has been sick and has not been able to use the bowel, being sustained instead by nutrients in an IV. This will hopefully improve over time and progress to full recovery of liver function.
7. The incision was closed; the stomas are in the suture line. The incision was covered with gauze and his belly was wrapped with stretchy gauze to keep it in place (no tape). There is a handwritten note on the dressing that says "Good luck Lukas!". ;-)

Dr. Pettit and the intern, Dr. Andrew Bullock (of Athens!) did a great job of walking us through the surgery and explaining what had happened. They were gracious enough to pose for a photo, despite having just spent nearly three hours in an operating room kept at 88 degrees fahrenheit to keep our boy Lukas comfy.

It is going to be a rough few days for our son Lukas. We are very hopeful that he doesn't have any serious underlying problem like CF or Hirschsprung's - it's bad enough to have been born too early and too small. Fortunately, there is no known association between CF or Hirschsprung's and IUGR or oligohydramnios, his two original problems. The latter were probably related to a placental problem. That in turn could have led to a lack of blood flow to part of the bowel, leading to the stenosis, leading to the obstruction, and then leading to the liver problems. I'm a big believer in Occam's Razor, as are Lukas' doctors, which is why we think two rare things at once (i.e. CF plus IUGR/oligohydramnios) is so unlikely. Occam was a Greek philolsopher who said that given two possible explanations, the simplest is the most likely to be correct. Lukas having CF or Hirschsprung's on top of IUGR and oligohydramnios and placental insufficiency would be like lightning striking twice in the same spot on successive days. It can happen, but it is incredibly unlikely, since these illnesses are not more common in kids with IUGR.

So...keep thinking those good thoughts, keep your fingers and toes crossed, and wish Lukas well as he works on recovering. Key goals over the next few days will include improvement in liver function, ability to use his gut, stabilization of his fluid requirements, improvement in blood pressure and heart rate, reduction in ventilator settings, and avoidance of infection. Long list for a little guy.

12/6/2

Lukas had a rough night, and kept his nurse Kelly busy trying to keep his blood pressure up, heart rate down, and oxygen saturation in a healthy range. When we came in this morning, his mean arterial pressure was only about 26 or 27; it should be in the 30's for his size. Keeping it even that high was requiring 18 mcg/kg/minute ("18 mikes") of dopamine. Dopamine is a pressor, so named because it keeps blood pressure up. However, it can do bad things, and ithe less of it the better. Fortunately, by this afternoon (as I write this entry) his blood pressure is running closer to 35, and he is down to only 10 mcg/kg/minute of dopamine. Good day so far for Lukas! He also got his chest tube out, properly this time, and tolerated the procedure well. Since he was peeing around his catheter (i.e. urine was leaking out around it) that tube was removed as well. All good - it's nice to see more Lukas and less tubes as time goes by. He still has the ventilator tube, arterial line, central IV line, oxygen sensor, heart sensors, and a peripheral IV. But progress is progress.

Diane and Kenny, Laura's brother and sister, stopped by again to visit. We discovered a fantastic Cuban/Spanish restaurant called La Fonda Latina - a big helping of paella for $8 made Mark a happy boy at lunchtime. Our friend George will have to go there next time he is in Atlanta.

Allison is at it again...below are some sketches that further illustrate Lukas' surgery and planned recovery to normal bowel function. Thanks, Allison! He's becoming our illustrated little man.


The problem	The solution	The final repair

Lukas is getting terrific care from his nurses here at the Grady NICU. While I have worked with nurses for many years, in a way we operate in parallel universes. With our hospitalized patients, we physicians swoop in once or twice a day, write some order, and leave. The nurses provide the care and manage the myriad hour by hour and minute by minute changes in the patient's condition, and make sure that what needs to happen. All too often us medicos do not properly appreciate the nurse's contribution or level of skill. Boy, are we wrong. Sitting here for 12 hours a day, I have received an education in NICU nursing, and am incredibly impressed by what I see them do for Lukas. At left are his nurses for today, Marie and Danali...thanks, guys!

12/7/2

We received a phone call at about 8 AM this morning at our hotel that caused us a moment of terror - as far as we knew, the only ones that have this number are the nurses at the hospital, so they can call us if there is something wrong with Lukas. Fortunately, it was someone else, and Lukas was fine. The best way to reach us is with email, since every time the phone rings these days we panic. Plus, we just don’t have the energy to take a lot of calls. Despite our limited internet access, we generally respond to emails within 24 hours. We truly appreciate every good thought and gesture, and hope you will understand our request.

Lukas continues to recover well after surgery. He was down to 6 'mikes' on the dopamine, and lower settings on the respirator. His labs were OK, and he was starting to get green stuff out of the stoma, which is what you want it to do. The goal over the next day or two is to get him off the dopamine. Then, we can start to give him small amounts of breast milk. Over the next week or so we will be looking for him to continue to require less support from the ventilator (a process called 'weaning'), see his bilirubin go down, see him successfully use his gut with small amounts of breast milk, and avoid infection. We also have some important test results pending, so I'm sure it will be a busy week for everyone. Beyond that, we hope to see him get off the ventilator in 2 to 3 weeks, and get back to Athens by Christmas. Of course, that means the Athens NICU, not our home. The best we can hope for is getting Lukas home sometime in the first quarter of 2003. And of course, all of these 'ifs' depend on continued progress and no major setbacks.

Laura and I took advantage of the good day to dash back to Athens for laundry and reminding our dogs who we are. Islay is growing quickly, and is now (pretty much) housetrained, thanks to the Bierema family. Laura's brother Ken is doing some projects around the house, which we appreciate very much. The garden shed that we started building a couple of months ago is now done, and the next step is to renovate the garage into a guest room/play room/exercise room.

12/8/2

Lukas had a quiet night, maintaining his blood pressure and oxygenation, and putting lots of liquid out through his stoma. His tummy was more swollen yesterday afternoon, which is expected after surgery. This is called 3rd spacing (the first two spaces are intracellular, i.e. fluid in cells, and intravascular, i.e. fluid in blood vessels) and happens post-operatively for a variety of reasons. If anything, he had somewhat less than expected, and should get rid of this fluid over the next few days.

Our little guy was quite active this morning, opening his eyes and looking at us, responding to our voice (or at least appearing to), wrinkling his brow in annoyance when he was being weighed, and moving his arms and legs. They are decreasing the amount of morphine, since too much morphine suppresses his drive to breathe and also lowers his blood pressure. The result was good - he is now completely off the dopamine that was being used to keep his blood pressure up, and his last blood gas was quite good. The blood gas measures pH (acidity/alkalinity), carbon dioxide (CO2) level, oxygen (O2) level, and bicarbonate. Good blood gasses allow us to turn down his ventilator settings a bit, then check another gas in an hour or so to see how he tolerated it. If the follow-up blood gas is good, then these become his new settings till the next attempt at weaning. It is a slow process, but remember, patience is also a form of action.

12/9/2

Lukas had another quiet night, and a good day. They are manipulating the ventilator settings in an effort to get him to do more of the effort of breathing. Basically, when he makes an effort, the ventilator kicks in and delivers a good sized breath. If he poops out, there is a "back-up" setting to make sure he gets enough breaths. He has been relying on the ventilator to breathe for him, so he has to build up those chest wall muscles and exercise his diaphragm so he can do the work of breathing without needing a ventilator. This will take time - sort of like training for a marathon, as Dr. Gauthier puts it.

The surgeon stopped by - Dr. Ricketts took over for Dr. Pettit today. He was pleased with his progress, and we are hoping to see him use that newly unobstructed gut soon. Labs looked good today too, especially the bilirubin which dropped to its lowest level ever of 4.4 total and about 3 direct. It had been as high as 15, with a direct bilirubin of over 10, just a week ago. Hopefully this is good news for his little liver. Other tests are still pending.

He is still a tiny little boy...while his weight is about 900 grams now, it is unclear how much is Lukas and how much is extra fluid. He is definitely more active, waving his arms and opening his beautiful blue eyes to look around. Below are some photos of Lukas, including a close-up, and a picture of one of his favorite nurses, Katherine (see 11/25/2 note above). What a heartbreaker! Another one of his nurses, Monika, called in on her day off to see how he was doing. We appreciate her thoughtfulness.

Many people ask how we are holding up. Laura and I are doing quite well, actually. While we both knew deep down inside that we married the right person, it is nice to have it confirmed under these trying circumstances. We are also deeply appreciative of all the people that have sacrificed and pitched in to help us be here at Lukas' bedside, especially our parents Ken and Phyllis Bierema and Herbert and Hildegard Ebell; Laura's brother and sister Ken and Diane; the faculty and staff at the University of Georgia's Department of Adult Education who have covered much of Laura's work; and the staff at my clinic who have helped me not feel guilty about missing afternoons of patient care.

12/10/2

One of the earliest concerns raised by the neonatologist in Athens was that Lukas may have a chromosomal abnormality of some kind. Most commonly, this involves a missing part of a chromosome, an extra chromosome ("trisomy"), or a translocation where some material from one chromosome ends up in the wrong place. This was a concern because chromosomal defects are a fairly common cause of severe IUGR, and also because his eyes were very slightly downsloping initially, and his ears were a tad low. These abnormalities are a common feature in dozens of chromosomal problems. The first couple of attempts to grow his cells in the lab (a necessary part of chromosomal analysis) failed, but fortunately the third time was the charm. Best of all, Lukas is swimming in the deep end of the genetic pool - he is a normal, healthy, boring, XY chromosomally normal little boy. Whew! This has been hanging over our heads for 4 weeks, and it is an amazing relief to hear this. Other tests for CF and Hirschsprung's are still pending, but it's great to get this one back as normal.

As Lukas has gotten older (he'll be 4 weeks on Thursday) his face has filled out a little bit, making his eyes less slanted and his ears a bit higher. We're both confident that he will be a particularly good looking little boy - as long as he got Laura's looks. He certainly got my temperamant!

We are making some progress weaning today, with the volume of air pushed into his lungs decreased from 4 ml to 3 ml over the past 24 hours. To give you an idea, a teaspoon is 5 ml. The rate is down from 55 to 50 over the past 3 days, and the percent oxygen going in is hovering between 25% and 32%, depending on how he is feeling (room air is 21% oxygen). The physical therapist spent quite a bit of time with us and Lukas today, instructing his team how to position him to protect his little hips. Babies in the uterus are cuddled up in the well known fetal position, but in the NICU Lukas has spent a lot of time splayed out like a frog on the dissecting table (sorry for the analogy, but you get the idea). While we have been moving him from side to side, it is still quite different from his position in utero. To assist in this process, I ordered a few batches of teeny-tiny little diapers, each about the size of a sanitary napkin. Grady doesn't stock ones this small, and the concern is that the larger diapers are pushing his hips out of position, which could lead to problems down the road.

In a related effort to keep him good-looking, I also ordered some little gel-filled pillows. They will cushion his head, and prevent the "flathead preemie" syndrome that can happen in these tiny ones. He has spent much of today on his tummy, with his head turned to the side, as a way to help his breathing even more. Good to see another side of our son today. He is tolerating it very well - I have been watching him work hard, getting his oxygen saturation up above 95%, then poop out a bit, his oxygen saturation dropping below 85%, which triggers an automatic reflex to get him to work harder on his breathing. As my track coach Mr. McCauley used to say, "No pain, no gain", and "The only place that success comes before work is in the dictionary". This applies to Lukas breathing training regimen, I think.

12/11/2

Today was quiet. While this is good (nothing bad happened) it is also frustrating, as there was essentially no action on the intestinal front. To give the little guy some credit, he did come down a bit on his ventilator settings, from 50 to 45 breaths per minute of back-up rate, and from 3 to 2.7 ml tidal volume. That's definitely the right direction. If it wasn't for his still swollen tummy, he'd be getting close to coming off the ventilator. That's because his big tummy is pushing up against his chest, and increasing the work it takes to expand his little chest.

Regarding his tummy, we are still waiting for his bowel to start moving. Preemie bowels are notoriously finicky, often taking quite a while to start moving in the right direction, and especially when the intestines were subjected to surgery. Part of the surgery involved pulling his intestines out of his body and "running them", i.e. squeezing them to get the collected stool and barium out. This is very traumatic, and it isn't unusual (apparently) for it to take one or even two weeks for things to start moving. Very frustrating. Plus, as I write this it is 5:45 pm, and the surgeon hasn't been by yet. I suspect they may not come by at all today, which is annoying. The neonatologists have seen and examined Lukas several times, so he is getting attention, but it would be nice to have the surgeon stop by.

We had some sad news yesterday. Laura's aunt Sharon (her father's younger sister) died suddenly yesterday morning. Sharon was a very sweet and thoughtful woman, and our hearts go out to her husband Bob and daughter Cynthia as they struggle with their unexpected loss. Her death was totally unexpected, which makes it even more difficult for everyone.

Laura's father Ken, who was driving down to Georgia to take over on dogsitting duty, had to turn around halfway through Indiana, and her brother is on his way back to Michigan for the funeral and a wedding. Our friends Allison and Gene have graciously "adopted" our puppy Islay for the time being, and our housesitter Tanya is watching Max and Kudzu, our older goldens. We hope to (maybe, fingers crossed) spend Saturday evening in Athens. We'll see how things go.

One other good thing - my quest is over. After searching about 15 Thai restaurants nationwide, including 6 here in Atlanta in the past 3 weeks, I have finally found the perfect Thai fried rice. My alltime favorite is that dish (Kao Pad Prik, chicken, medium up hot on their menu) at Siam Spicy in Detroit, where I ate weekly (at least) for 4 years. Now, finally, a dish just as good. King and I Thai Restaurant, on Peachtree near Monroe, at the back of a little strip mall. Now I just have to convince Laura to eat there every night. ;-)

12/12/2

Below is a picture of Lukas with his various wires and tubes labeled...as you can see, he is pretty well tied down. While he moves his arms and hands back and forth and looks around at us, he of course can't roll over or lift his head yet, and relies on his nurses to position him. Below, he is lying on his tummy; those are his mother's hands comforting him. Preemies seem to like gentle, firm pressure rather than stroking or rubbing. I apologize for the blur, but the room lights are dim and we don't want to use a flash that might harm his eyes. The incubator is open now - it is a cylinder, and the top half rotates around to expose our little guy. There is a warming lamp above, especially helpful when the incubator is open. When closed, a formfitting blanket is draped over it to provide protection from light and some additional sound protection.

Today was fairly quiet, after a rough start. Because we were in the noisiest part of the unit, and the administration is apparently incapable of enforcing any rules about keeping the area quiet, our son had to move to a different and quieter section across the hall. This is a bit of an ordeal, with a respiratory therapist and two nurses working on him the whole way, using a bag to help him breathe while the ventilator was unplugged. You think they would invent a battery pack that could last 5 minutes for the transfer. Anyway, after a few hours of requiring higher oxygen levels, he was back down to room air or a little bit over room air by the early afternoon. He also pulled his "Anderson," a thin tube in his stomach, out of his mouth. Tired of it, I guess. Feisty - that's my son! It will be replaced with a smaller tube that is more comfortable, and hopefully this will be adequate to drain any fluid that builds up in his stomach. Not much came out of the old tube today, which is good. Hopefully his digestive juices are starting to move in the right direction. He also blew a little gas out into the stoma bag - no father was ever happier that his kid farted in public. ;-)

This evening, they dropped his rate on the ventilator from 45 to 40, which is good. I thought that might be a bit much, and sure enough his CO2 rose a tad, and they had to back off a bit and set the rate at 43. This is still better than he started, so he continues to make progress.

12/13/2

Today is Friday the 13th, and it has been an up and down day. The surgeon and neonatologist are both increasingly concerned that Lukas is losing protein out of his gut and into the ostomy bag, instead of hanging onto it like he's supposed to. His protein level in the blood is very low, leading to the swelling in his abdominal cavity and elsewhere, which is in turn making everything else worse. The pediatric pathologist from Emory University looked at the sections of tissue from Lukas' small bowel, and said it looked normal except for some edema (swelling, usually caused by inflammation). He saw normal nerve ganglia, meaning that Lukas doesn't appear to have Hirschsprung Disease, and he said the mucosa (lining) does not look like that seen with cystic fibrosis. So far so good - those two diseases appear very unlikely now. Apparently the neonatologist was more concerned that we had thought about CF, and she was visibly relieved.

However, it doesn't explain why Lukas continues to lose protein through his gut, which is known as a "protein-wasting enteropathy". These can be caused by changes at the molecular level in how the gut moves chemicals into and out of the bloodstream, and the gut lining may even look normal under the microscope. Sometimes this kind of enteropathy can occur after surgery, particularly in kids who are premature and sick (like Lukas). However, it can sometimes be a sign of a very serious inborn problem with how the gut functions. While Lukas' small bowel is showing signs of moving in the right direction, that mechanical function moving food and waste in the right direction is only part of the gut's function. The more critical part is absorbing nutrients from food and excreting waste products into the stool, and this isn't functioning properly, since he is pouring protein out into the stool. We hope that it is something that will correct itself, and should know more over the next few days.

Dr. Gauthier spent quite a bit of time today following up on Lukas' test results, and helping us understand them. She gave each of us a hug, and we know that she is doing her best to help Lukas do just as well as he possibly can.

12/14/2

Lukas had a quiet night, and his ventilator settings continue to improve. His gut is working in a mechanical sense (moving gas and liquid in the right direction), but is still pouring out watery (serous) fluid. Our hope is that he will eventually start putting out something that looks a bit more well-formed - not exactly stool, but not runny clear liquid either. As the attending physician today said (it is Dr. Cornish, "like Cornish hen", he told us), Lukas has the world's worst case of diarrhea. Until that resolves, we can't use his gut to give him nutrition. They are increasing the protein and lipids in his intravenous fluids, with the hope that the protein and lipids stay in the blood vessels, and in doing so draw the extra water out of his gut, into the blood vessel, and out through the kidneys. If his urine output goes up over the next couple of days, we'll know it's working. If, on the other hand, his blood vessels are leaking protein, then the ascites (fluid in the abdominal cavity) and urine output will not improve, or might even get worse. It is (yet another) waiting game, with Lukas calling the shots. Dr. Cornish spent quite a bit of time talking to us, which was much appreciated.

We are going to spend tonight at home, and return in the morning. It will give us time to do laundry, and attend a couple of Christmas parties that are scheduled for this evening. The attending physician today said that he had seen a couple of cases that were in some ways similar to Lukas where it took months for the gut to recover, but once it did, the kids were fine. It is hard to fathom being here for months, but if we have to, we have to. Laura and I have done a lot of bike touring on our own, just packing up the bikes and panniers, flying to a country, buying some maps, and riding. We've done it in the US, Canada, England, Ireland, Scotland, Netherlands, Belgium, and Germany. During those tours, some lasting up to 5 weeks, we have come up with a variety of "lessons learned". They include:

Balance is important
Rain stops
It is what it is, and we'll ride over it
Keep your mouth shut
Pack light
Keep lines of communication open
There will be good days and bad days

Today, I'll talk about the first lesson: Balance is important. In 1995, we flew to Shannon, Ireland, and after a long night on the plane, and a couple of hours putting the bikes together, attaching the racks, and strapping on the panniers (saddlebags) we were finally ready to go. We wobbled off, and immediately got lost. Laura's bags weren't well balanced, and while making a tight U-turn in a subdivision near the airport, Laura tipped over. She broke the rear-view mirror, scraped her hands, and bruised her ego. We spent a little while shifting her gear around, and with a better balanced load, she never fell again. Balance is important in life, too, and during this time we have tried to spend a little time each day exercising, reading, eating a good meal, and drinking a glass of wine. It is hard not to feel guilty, enjoying something while Lukas suffers, but we have to remind ourselves that flagellating ourselves won't make him suffer any less. Balance is important, and we will continue to seek it.

Tomorrow, I'll talk about the next lesson. Until then, look at this nice clear, sharp photo of our son Lukas. His eyes were closed, so I felt comfortable using the flash. There is quite a bit of swelling around his eyelids (caused by the low protein) but his eyes are a beautiful blue when open. He even smiled a bit for us yesterday, which is hard for us to imagine, given his situation. His fingers are long and graceful and very beautiful.

12/15/2

We had a very nice trip back to Athens. Our friends Phil and Carolyn Holmes had a lovely Christmas party, and we had a chance to see some good friends. Later in the evening we joined Laura's faculty for their Holiday party, which included a white elephant gift exchange. I actually got something I wanted - a book by John Feinstein called "A Good Walk Spoiled", about life on the PGA tour. Sometimes one man's trash is another man's treasure. After a quiet morning with some good coffee in real mugs and the NY Times (both of which we love but have largely had to do without), we drove back to Atlanta and Grady Hospital.

It was good to see Lukas again, but also hard to see him; his little tummy is still incredibly swollen, and is totally out of proportion to his very delicate head, chest, arms, and legs. His scrotum is somewhere between the size of a golf ball and tennis ball, which is of course hugely swollen for him. It is swollen because there is a direct connection between the abdominal cavity to the scrotum, through which the testicles descend during development. This is called a hydrocele, and in his case, with the ascites (extra fluid in the abdominal cavity) it is the mother of all hydroceles. We have a hard time looking when they remove the diaper. Yesterday they began giving Lukas some albumin, and it appears to be staying inside the blood vessels, which is good. His serum albumin level went from 1.8 to 2.7, which is quite a jump. His urine output is also good, which we hope will eventually help get fluid out of the abdominal cavity. However, he is still pouring a large amount of fluid out into his ostomy bag. There was a little blood in the ostomy output last night, but that appears to have stopped. So, for now we hope that his ostomy output slows and becomes more formed, that his urine output increases, and that his abdomen and scrotum become less swollen. At best, this will take days, at worst weeks or never.

Lesson #2 from our bike tours was: Rain stops. Our longest tour was 5 weeks through Ireland, Scotland, Belgium, and the Netherlands, and was a wet affair. Every single photo taken of us on that tour shows us in our yellow GoreTex rain gear, usually uppers and lowers. But one thing we kept reminding ourselves during this trip was that rain does eventually stop, even if it takes longer than you'd like. There is a similar but much more cynical aphorism in medicine, that all bleeding stops. Unfortunately, it sometimes stops because the patient dies. But it does stop. We want the very best for our son Lukas, and want the fluid accumulation to stop, the protein loss to stop, the lung injury to stop, and his suffering to stop. We know it will, but also realize that it may not stop in a way that leaves him with us. Over the next few weeks, we will try to remember that this won't go on forever, and that for now we have to do everything we can to make him feel loved, and feel as comfortable as possible while he tries to recover.