Photos for the month of February can be found here: http://www.fototime.com/inv/EE60D2A5BB74502

• Lyle had his most recent eye examination today. It is quite horrible to watch but he is remarkably calm about it all. Paloma dilated his eyes an hour before the appointment (one drop of Cyclomidril in each eye, wait five minutes, repeat, wait five minutes, repeat). Dr Gonzalez donned an impressive piece of head gear which made him look like one of the Star Trek borgs. Lyle fussed a bit when Dr G pried his eyes open but a quick application of the pacifier soothed him enough for the examination to proceed. Dr G was very pleased with the result. The ROP is resolving nicely. He felt that one more examination in two weeks should be all that's needed. We are very pleased too.

• Paloma's sister Barbara stopped by around 9:00 p.m. tonight. Just in time for Lyle's feeding. Barbara has been giving Paloma tips on bottle feeding. Lyle is still somewhat less than enthusiastic when it's time to eat. He will nurse for a short time and then lose interest. We let him take as much as wants by mouth and then give him the rest by NG tube. I wish he didn't need this somewhat unnatural intervention but whenever we discuss the problem we agree that it is better for him to get the calories he needs than not. If we stopped using the NG tube to feed him he might nurse better (being more hungry) but he might also start losing weight and he just can't afford that.
• Barbara demonstrated her bottle feeding technique. Before she left she said (casually) that Lyle's head felt very hot on her arm. I got Lyle's thermometer and checked his temperature. It was 37.5 C (99.5 F). This is warm for Lyle (who usually runs about 36.6 C) but is not considered out of the ordinary in a baby. However, after Barbara left Lyle vomited up most of his meal. I always feel somewhat uncertain in this kind of situation. There are a lot of reasons why he could have thrown up: too much food, didn't like the taste of the medications in it, etc. We decided to let him rest. We will feed him again at midnight and see what happens. After being initially upset and crying, he calmed down and fell asleep.
• His midnight feeding was a repeat of his nine o'clock feeding. He took in all the milk and then vomited it out again later. His temperature is about 37.7 C. Again he calmed down after throwing up and fell asleep. This time he removed his NG tube while flailing around. We decided not to agitate him any further by re-inserting it.

• Lyle woke us up around 1:30 a.m. He was crying. I took him out of his bassinet and while I was holding him he tried to throw up again. He didn't have much left inside his belly and what came out is very thick. His temperature was still around 37.7 C (99.9 F). This is a borderline fever. His pediatrician told us that we should call the office before taking Lyle to the Emergency Room since they would just have to call him anyhow once Lyle was admitted. His group always has a doctor on call. He also told us not to give Lyle Tylenol before calling with a problem since that medication can mask symptoms which might help tell them what is going on with him.
• We called Dr Moler's office around 1:45 and were told that the triage nurse would call us back shortly. We waited anxiously by the phone. Half an hour later we still hadn't been called. Paloma was getting angry. If they don't call soon I'm giving him some Tylenol, she said. I called the office again and explained that the triage nurse hasn't called us yet. The operator says she will page her again and that if we haven't been called in fifteen minutes to call her back.
• Fifteen minutes later I called the doctor's office again and told the operator that we still hadn't been contacted. She said she will page the nurse again. I vetoed that idea. I told her that it had been 45 minutes since our first call and that we're very worried and wasn't there someone else we can talk to. She said that she would page the on-call pediatrician (who happens to be Dr Moler tonight). Almost immediately Dr Moler called us back. It was about 2:30 a.m. now. We told him what's been going on with Lyle. He said that there is a lot of intestinal flu going around. It seems like most of the children in his practice have it. Of course, he points out, it is hard to diagnose the problem over the phone. He suggested that we start feeding Lyle Pedialyte, just to get some fluid and calories into him. He thought we should with 15 ml, wait fifteen or twenty minutes and then give him the same again. Wait a while longer and if he keeps it down then try a bit more. If Lyle is still ill in the morning we need to call his office and have him seen by one of the doctors there.
• After I got off the phone with Dr Moler the triage nurse finally called. I thanked her (much to Paloma's disgust, she thinks I'm too polite) and explain that we've already talked with Dr Moler.
• It was 3:00 a.m. when I finally got out the door to get to Safeway to buy some Pedialyte. After wandering about in a rather dazed fashion I finally found the baby product aisle and bought two large bottles of the stuff. One grape flavoured, the other orange.
• We already know that Lyle likes the taste of the grape flavoured Tylenol so we decided to try him with the grape flavoured Pedialyte. He took 15 ml with gratifying speed and efficiency. Fifteen minutes later he still hadn't vomited so we give him some more. He sucks the bottle dry. If only he was this good with his regular feeding. In all he took about 60 ml (perhaps two ounces) over the space of an hour. When he fell asleep we decided to leave him be.
• When he woke up at 5:00 a.m. his temperature was much higher: 38.1 C (about 100.6 F). This was worrisome. We gave him some more Pedialyte and some Tylenol too. Shortly thereafter he threw it all up. We will definitely have to take him on to the doctor's office later this morning. After he calms down Paloma gave him a bit more Tylenol. Eventually we all fell asleep.
• It was about 9:30 when we woke up. Lyle's temperature was 36.6 C, much more normal for him. He seemed quite chipper in fact. We made an appointment to see Dr Takahashi, one of Dr Moler's colleagues, at 11:50 a.m. Lyle took more Pedialyte and held it all down.
• Lyle's temperature was a bit higher in Dr Takahashi's office. They take his temperature rectally rather than in the armpit (which is how we learnt to do it when Lyle was in the NICU). Given that he had a temperature and was vomiting she decided to have some blood work done and so sent us over to Dominican Hospital. She also felt that we shouldn't be giving Lyle Tylenol orally. She wanted us to keep all unnecessary medications out of his belly. She suggested that we get some Acetaminophen suppositories. She wanted us to give Lyle 15 ml of Pedialyte, wait an hour, give him 15 ml more. Wait another hour and then double the amount.
• The phlebotomists at Dominican have difficulty tapping any of Lyle's veins. The first one failed and called in the backup who manages to get the needed blood. We returned home and spend an uneasy afternoon watching TV and Lyle and trying not to worry about the results of the blood tests. I called Dr Takahashi's office around 4:00 to see if there have been any results. The operator took a message and said that Dr T will call us back.
• She called a few minutes later and said that Lyle's white blood cell count is elevated. It's about 23,000. Normal is around 10,000. An elevated count is a sign that the body is fighting something and she thinks it might be a bacterial infection. She asked us to come to her office around 6:00 since she wanted to look at him again before having him admitted to hospital.
• Unfortunately, vomiting and fever could also be a sign that Lyle's shunt is infected and so Dr Takahashi feels that it would be best to admit Lyle and start running more tests. She called around and spoke with Dr Huhn (the neurosurgeon who installed Lyle's shunt) who agreed that Lyle should be in hospital. She then tried to find someone locally who could tap Lyle's shunt so they can start culturing his CSF. It turns out that there is a new neurosurgeon at Dominican, Dr Harper, who can draw the fluid. He agreed to meet us there.
• Dr Takahashi decided to get a sample of Lyle's urine so the lab could start looking at it right away. She retracted his foreskin and painted the head of his penis with Betadine. He didn't like this at all and fought vigorously while crying as loud as he could. She pushed in the catheter, collected a urine sample and then removed it. He kicked and cried the whole time. Dr T said that if she hadn't seen the results of his blood tests she wouldn't think he was sick. He just looks so good and his response to an unpleasant procedure is so healthy.
• We drove straight from Dr Takahashi's office to Dominican and began the admitting procedure. I guess it was about 7:00 p.m. at this point. Lyle hasn't had anything to eat in quite a while and he's a little peevish. It doesn't help that all sorts of paperwork has to be done before he'll get anything to eat. We asked his nurse to get him some of the grape flavoured Pedialyte since he seems to like it so much. She agreed. Then he had to have a CAT scan and some x-rays. We went with him to radiology. Paloma got the unenviable job of trying to comfort Lyle while he was strapped into the CAT scan machine. He hated it and screamed at the top of his lungs for the duration. Paloma had to crouch over him and hold his chin so that his head didn't move around too much. You know, there's something uniquely unsettling about seeing the inside of your child's head. We've known all along that his ventricles are enlarged but since he behaves so normally we don't really think about it a lot. Seeing the enlargement makes me worry all over again about his future development. Will his brain be normal? Will he have a full and happy life? We are determined that he will get whatever help and support he needs. Will that be enough?
• Then they took him into the x-ray room for more pictures. Again he needed to be held down and again he hated it. The worst was a mediaeval torture device (whose name currently escapes me, something to do with pigs I think). It looked like a small version of an iron maiden, made out of wood and plastic rather than metal. It had a little bicycle seat which Lyle has to sit on. I had to hold his hands above his head while they wrapped him tightly in a plastic (or maybe Plexiglas) cylinder. He was almost inconsolable after this treatment. The x-ray tech apologised to us but that didn't really help Lyle.
• Then it was back to his room where Lyle finally got something to eat and we met Dr Harper. He's very nice: a recent graduate in neurosurgery who handles pediatric and adult cases in Santa Cruz County. After Lyle has been soothed somewhat by some more Pedialyte Dr H got ready to tap Lyle's shunt. It's a pretty simple procedure. Apparently the material of the shunt is a kind of self-healing plastic which is designed to close up after a needle has passed into it and been removed. It was over quite quickly. He scrubbed Lyle's head with more Betadine and then used a very small needle to draw off a few cc's of cerebrospinal fluid. He was somewhat concerned by it's colour. It has a yellowish tinge which could be an indication of a problem. He said that initial results will be back in half an hour or thereabouts.
• Since there are signs of bacterial infection in Lyle the doctors decided to insert an IV catheter so that they can start giving him antibiotics. One of the nurses from Dominican's NICU came over to try her luck. She didn't have any. Lyle screamed and kicked as she was fishing around inside his wrist for a vein. It looked painful and Lyle didn't like it one little bit. Another nurse tried. She didn't do any better. Lyle was very upset. Then we heard that Dr Ismail, Dominican's neonatologist, was coming in so they decided to leave the job to him.
• It is good to see Dr Ismail again. He was a great help and comfort when Lyle was born. I just wish we were seeing him again under different circumstances. We've talked about taking Lyle by Dominican at some point to say hello. He was impressed with how big and robust Lyle has become. Unfortunately, Dr I had no better luck getting a catheter in than any of his nurses did. Poor Lyle doesn't get a moment's rest. As soon as he failed at one site he started probing around at another. Lyle cried the whole time. Not even his pacifier could soothe him. As he was searching for a vein in Lyle's foot a preliminary result comes back from the lab. The glucose level in his CSF was low. Meaning that something is using it up. Meaning that there's probably a bacteria growing in there. Dr Ismail finally gave up on the catheter and Lyle got a chance to calm down. Then more results arrived. There are Gram positive rods growing in his CSF (Gram positive bacteria will shown up under a microscope when a special stain (a Gram stain!) is applied to them, this means that they don't actually have to grow a culture for a couple days before knowing what is there, if anything). Now it was clear. Lyle will have to be transferred to Packard Children's Hospital. His nurse came back with an intramuscular dose of antibiotic to get Lyle started.
• This is not the news we wanted to hear.
• It is the unexpected kindnesses that hurt the most. I was fine coping with this bad news until one of the nurses asked if we'd had dinner and said that we must be hungry. She offered to get us a sandwich or two and asked what kind of drinks we'd like with them. I couldn't answer. Her thoughtfulness destroyed my composure. I couldn't answer through my tears. Dr Takahashi told her to just bring a selection. Then they left us alone while they went to arrange transport.
• Around 11:30 they told us that the infant transport team was just returning to Packard Children's Hospital and were expected to be there within twenty minutes. They would then turn around and come and get Lyle. They thought the team would be here around 1:30. Paloma and I discussed the situation and decided that we would stay here in Santa Cruz and sleep at home tonight before going up to the hospital Sunday afternoon. It was a hard decision to make but we felt that it was best to be rested since we have no idea how long or grueling this hospital stay will prove to be.

• The transport team arrived about 1:45 a.m. We were pretty much basket cases at this point having not had much sleep Friday night either. The plan was to take Lyle from Dominican to the Operating Room at Packard Children's Hospital where his shunt will be removed and an external drain installed. More damned operations. After this one Lyle will be taken to the Pediatric Intensive Care Unit (PICU). Each surgery carries the risk of more infections. I talk with the neurosurgery resident on the phone while he explains their thinking. If the shunt remains in his head it is unlikely that they will be able to clear the infection. Bacteria can hide inside the tubing away from the antibiotics. It's best to remove the mechanical stuff and then let Lyle's body fight the infection with the help of the medications. Once the infection has cleared they will install a new shunt. Of course there is no guarantee that this kind of thing won't happen again. I have a sudden vision of our future with Lyle: a few healthy months followed by an extended stay in the hospital.
• The transport team strapped Lyle into the gurney. He didn't like it one little bit. He cried and cried. We heard him crying as they wheeled him out to the ambulance. Then we drove home. Is this callous? It sure felt so at the time. As I got onto Highway One I saw the ambulance in the distance. I tried to catch up with it but they were too far ahead. They took the Highway 17 exit just as I passed them.
• We pottered around at home for a while before going to bed. The house felt very empty.
• We slept quite late. A phone call to the PICU informs us that Lyle is doing well and is resting comfortably. We had some brunch and then headed up to the hospital. The drive still feels familiar.
• The cultures grown from Lyle's urine and CSF by Dominican have now reached the point where the organisms growing in Lyle can be identified. There now appear to be two bacteria in his CSF. One of them is called Klebsiella. They're still not clear on the other. It's the Gram positive one. Could be either staphylococcus or streptococcus. Lyle's urine is growing Klebsiella too so there is a possibility that the infection started in his urine and then (somehow) migrated through his blood to his CSF. Dr Roberts, the PICU resident (who we first met when she was rotating through the NICU) thought that Lyle might have a condition where his urine backs up allowing bacteria to get into his blood. Once his infection has cleared there is a test which can be used to see if this is the case. Running the test now would just give another chance for bacteria to infect the poor little guy. I should add that Klebsiella is of the enterobacter family and so is commonly found in urine and feces which adds some credence to this theory.
• At one point in the afternoon we made a quick trip to the NICU to see if any of "our" nurses are on duty. They are. It was very comforting to see their familiar friendly faces. Everyone was very concerned about Lyle. Karen, one of Lyle's primary care nurses, just had to see him right away. The word spread that Lyle is in the PICU. At various times that afternoon groups of NICU nurses congregated at Lyle's bedside. Just seeing these wonderful people again lifts my spirits. All his visitors are amazed at how big and healthy Lyle has become.
• In fact, he was doing so well that his nurse was bored. She just had Lyle to look after and he's definitely not a critical case. Mid-afternoon they decided to move him from a private room into a multi-bed room where he can share a nurse. You know, he looks great. He's not in any obvious pain. He's looking around with great interest and he seems quite happy, all things considered. The only hard part for me, the doting father, to look at is the external drain. It's a tube that goes into a nasty looking wound on his head. It's set up so that if the pressure of CSF in his head exceeds 10 cm of water some will be drained off. It is collected in a transparent tube at his bedside and measured at regular intervals.
• Fortunately, we are old hands at the hospital stay scenario. We brought books to read aloud to each other. I have decided to read Susan Cooper's The Dark is Rising cycle to Paloma. We really felt a loss when we finished Philip Pullman's His Dark Materials series. The characters there were so richly drawn that they felt like friends. Their absence from our lives was hard to accept. We wanted more. Susan Cooper's books have a similar feel to me. I started reading Over Sea, Under Stone this afternoon. It's been years since I read these books. I hope they stand up to the test of time.
• We stayed with Lyle until about 8:30 and then returned home. I plan on going in to work Monday morning and then leaving around noon so we can visit Lyle again. I send out a bulk email informing our friends and family of Lyle's latest setback.

• I woke up feeling just awful. My head was splitting in two. I quickly revised my plans about work and went back to bed. We slept late.
• One of my friends responded to last night's email with the news that Highway 17 had been closed at the summit because of snow. I think this is the second time in my ten plus years living in California that the snow line has been so low. I think they said it was at four hundred feet overnight. The CHP were stopping anyone without chains from driving between Santa Cruz and San Jose.
• We left around one o'clock. Sure enough there was snow at the summit. Paloma suggested that we stop and take some pictures since we did have the digital camera with us. It sounded like a good idea to me so we pulled off at the summit and tried to find a nice place to stop and take some pictures. We found a neat looking old building covered in snow. I took a picture of it and then a picture of Paloma by our car. Then Paloma decided she wanted a picture of me by the old building so I walked across the road. At that point I spotted a car coming so I stepped off the road onto the shoulder and sank up to my ankles in slush. Paloma never did get her picture. As soon as the car had passed I jumped out, ran back across the road, hopped into the car and peeled off my shoes and socks. After Paloma had stopped laughing she agreed that we should go home so that I could change. Fortunately we were only a few miles away so we didn't lose too much time.
• It was after three o'clock when we finally made it to the PICU. We got there just in time. His nurse was just about to call us. Lyle is doing so well that he is being transferred out of Intensive Care into the Pediatric Surgery Ward. We watched them pack him up and then went along as they took him up to the third floor where he has a private room. It's quite a nice room too. There is a bathroom with a shower, a TV with an attached VCR and a foldout bed that, in theory, we could both sleep on. In practice, Lyle has to have his vital signs checked every hour or two to make sure that his neurological function is still good. They take his temperature and blood pressure and shine a light into his eyes. We may stay over at some point but for now we will rely on the nurses to make sure that he gets fed and changed and played with as needed.
• We are so used to the continuous attention granted in the NICU that this new ward feels somewhat haphazard. Each nurse has four patients and they are scattered about the floor. If she happens to be walking past when Lyle is crying then he will get attention. If not then he could be ignored for half an hour or more. This makes it very hard for us to leave but we finally do around 8:30. Sleep is the better part of parenting.

• A very frustrating day. We left a message at Dr Sectish's office requesting a conference with him or one of his residents. He is one of the pediatricians looking after Lyle. We heard nothing all day. We raised some of our concerns with Lyle's nurses when we arrived at the hospital in the evening and they promised to relay them to the medical team. We haven't talked to a doctor since Sunday afternoon. Mostly we just want to make sure that Lyle's other medical issues are not lost in the sound and fury of treating his more immediate problems.
• Lyle himself looks great. His eyes bug out of his head with interest. He smiles at us. He is just about the cutest baby in the world. Everyone says so. We hang out with him, read to each other and watch the music videos on the LPCH music channel (lovely orchestral music accompanying images of waterfalls and mountains and so on).

• We arranged to be at the hospital around 4:00 today. His nurse will page the medical team when we arrive and someone will come and talk with us about Lyle's progress. As we arrive we meet Dr Bill Rhine leaving. He was one of our favourite pediatricians when Lyle was in the NICU. He hadn't heard that Lyle was back in hospital. He comes up to Lyle's room with us to take a look at him. He's sorry that Lyle had to be readmitted. It's good to see Dr R despite the grim circumstances. A familiar and friendly face goes a long way to cheering us up.
• Dr Sectish arrives shortly after Dr Rhine has left. He apologised most profusely for not talking with us yesterday. He had to cover for one of his colleagues who was called away on an emergency. Dr Sati Agarwal accompanies Dr Sectish. She was a resident in the NICU when Lyle was there and is now a resident in pediatric surgery and so gets to look after him again. The continuity is good. She was the one who wrote up Lyle's discharge summary and so she is well aware of all Lyle's issues. We feel reassured.
• We learnt that Lyle has been started on yet another antibiotic. The cultures of Lyle's cerebrospinal fluid are now showing four different organisms and one of them is not really susceptible to either Vancomycin or Cefotaxime so they have added Gentomycin to the mix. The neurosurgery team is particularly concerned about the bacteria that have been found. Several of them are of the Enterobacter family which raises some concern that a pocket of infection in Lyle's abdominal cavity has seeded his shunt. The plan is to have an ultrasound study of his belly done on Thursday to look for little pockets of infection. Such a pocket could survive even in the presence of antibiotics since it can be largely closed off from the blood stream. If found, a pocket of infection would have to be removed since it's ongoing presence would compromise any future shunt.
• As we were talking with Dr Sectish and Dr Agarwal the Infectious Diseases team arrived. One of our biggest concerns surrounding an extended course of antibiotics is that Lyle not get another yeast infection (which can take hold when the normal bacterial flora is killed off by the antibiotics). Dr Gutierrez said that she is well aware of Lyle's history and they will be monitoring him closely to make sure that he doesn't have another round of candidemia. We also pointed out that Lyle has some hearing impairment and that we're worried that a long course of the -mycin antibiotics could exacerbate the problem. Unfortunately, their drug choices are somewhat limited by the resistances of the organisms that Lyle is growing. Dr Sectish says that ototoxicity in the -mycin drugs is associated with loading doses (large doses given at one time to boost antibacterial activity) and long courses. Lyle's course will be long since they want his CSF to be sterile before they reinstall a shunt but they will carefully control the dose to keep it at a therapeutic, not loading, level. Dr Sectish also says that they can have hearing tests administered to Lyle during his stay at LPCH. I guess that's one advantage of a full service gas station.
• Almost as soon as the ID team left the neurosurgery team descended on us. We have gone from a paucity of doctors to a surfeit. Famine or feast. Still, we are learning that, appearances to the contrary, over the last couple of days a lot of very smart people are thinking hard about our son and doing their best to help him get better. The neurosurgeons want Lyle's CSF to be sterile for at least seven days before they operate on him again. A sample will be taken today for culture. They will continue to take samples until he is clear of infection.
• Dr Roberts told us on Sunday that Lyle may have a case of urinary reflux which could have caused the infection to move from his bladder to his blood and then to his shunt. What happens with this condition is that when he pees some urine actually goes backwards from the bladder to the kidneys. An ultrasound showed that one of the ducts connecting his bladder to his kidneys was enlarged and that could be a sign of this condition. Once Lyle is clear of infection they will perform a test which can confirm the condition. They put a dye into his bladder and then watch what happens when he pees. If the dye appears in his kidneys then there's a problem. Fortunately this condition can correct itself with time. The treatment is a maintenance dose of antibiotics so that if reflux occurs there is no organism in the urine to contaminate the kidneys.
• Dr Sectish is a very pleasant and sympathetic man (our experiences at LPCH have been really inspiring: the doctors and nurses there are wonderful, caring people). He knows that we are worried about this kind of problem happening in the future. Of course no one can guarantee that Lyle's shunt will stay infection free but he said they will do what they can to give him the best chance possible. He has personally known of shunts that operated trouble-free for ten or more years. It is not impossible. He says that with babies like Lyle the first year can be hell as they struggle with the issues of prematurity but then, he said, things just start working properly. Lyle is almost six months old and he has spent all but six weeks of his life in hospital. Oh well, we do what we have to do.
• We are also happy to learn that Lyle's other medical issues are not being ignored. Dr Agarwal had Lyle's bilirubin tested and it is completely in the normal range. He doesn't need to be restarted on Actigall. She will supervise the tapering off of Lyle's other medication (Aldactazide and potassium chloride) while making sure that his lungs stay clear of excess fluid and his heart doesn't develop any murmurs. She also said that she will try to have Dr Gaynon take a look at Lyle's eyes on Friday when he does his pass through the NICU. Dr Sectish also said they would have an occupational therapist work with Lyle to help him with his feeding issues. Finally, since Lyle will likely be in hospital until early March they will make sure that he gets his next dose of the Synagis vaccine when it is due on the 27th. All in all we feel cautiously encouraged. Lyle has medical issues, but they are being taken care of. Nothing is slipping through the cracks.
• With the exception of a visit by a group of very large furry beings the rest of the evening was uneventful. You can see photos here: http://www.fototime.com/inv/EE60D2A5BB74502.

• Paloma arranged with Michelle, Lyle's occupational therapist, to meet in his room at 3:00 p.m. so that we could get some bottle-feeding tips. When we arrived the ultrasound tech was doing the study on his belly. Lyle wasn't vastly impressed by the whole process but at least it was quick and painless. The tech is not allowed to diagnose so she couldn't tell us what she'd seen. We'll have to wait until tomorrow to get the news. Apparently a fifth organism has grown out of the sample of Lyle's CSF taken on Sunday and they are hoping that the ultrasound will reveal a source for it in his belly. Pam (or was it Becky?), one Lyle's nurses today, tells us that they aren't going to change Lyle's medications as a result of this latest discovery. He is adequately covered for all the beasts growing in his brain.
• Michelle apparently worked with Lyle when he was in the NICU but I don't think we've met her before. She says that Lyle's suck is more of a chew. She figures he gets about 50% of the milk he could get if his jaw made more of a sucking motion. She showed us how to regulate the flow of milk into the nipple by tilting the bottle forward and backward. Whenever his eyes bug out she decreases the amount of milk he's getting. I worry about the air he takes in using this technique but Michelle says that it's not very much air and that we can always draw it off with the NG tube. She was able to improve his suck by holding his chin up with a couple of fingers. She encourages us to only feed him as much as he will comfortably take, have a definite start and stop time (perhaps twenty minutes total) and not make feeding into a battleground. It's supposed to be fun and pleasurable. If that means that he gets a lot of his calories through the NG tube then so be it. Unfortunately Lyle won't be getting breast fed any time soon. He is on complete bed rest until after the external ventricular drain is removed.
• The neurosurgeons are very faithful about stopping by Lyle's bed. They continue to be pleased with his progress. Neurologically he seems to be functioning just fine. Both his eyes respond appropriately when they flash a light in them.
• We tried to use some of Michelle's suggestions during Lyle's six o'clock feeding but he still takes less milk than usual by mouth. I think he's just tired. And maybe I don't quite have the same authority over him that she did. He seems to know that I am a softy and will let him get away with under-performing.
• Around 7:00 p.m. we notice that he has become quite fussy. He kicks his little legs around and won't be comforted by the pacifier. Paloma thought he was hurting. She looked at his legs and notices that the one with the IV catheter looks kind of swollen and the skin feels very tight. Particularly when compared with his other leg. We called his nurses in to look at him. When they finally got the tape taken off we can see that his right foot is much larger than the left one. The vein with the catheter in it has collapsed and all the fluid they've given him over the previous hour has gone into the tissues of his foot. They remove the catheter. My poor little boy. After the trauma on Sunday when no one could find a vein we'd hate for him to be savaged yet again. Still, he has to get the antibiotics. Pam and Becky decided to leave it for the next shift to deal with.
• Gracie looked at the veins on Lyle's left leg and thinks that there is a nice one she can probably get. We decide to leave before she tries to stick him. At least then we can pretend that it was straightforward and painless.
• I think Lyle is doing well. All the nurses say he is a very easy baby. He cries when he's hungry or hurt but is easily soothed. Almost everyone who sees him comments on how cute he is. He seems to be tolerating the bed rest quite well. It's hard on us not to be able to pick him up. Gracie said the same thing, whenever he cries she wants to pick him up and comfort him. It's only for a couple more weeks so I guess we can stand it.

• We just couldn't pass up the chance to meet some of our favourite comic book authors. There was a signing this afternoon at Atlantis Fantasy World featuring Mike Kunkel (author of Herobear and the Kid), Jason Lethcoe (author of Birthday Boy and Zoom's Academy for the Super Gifted) and Terry Moore (author of Strangers in Paradise). We have been big fans of Herobear and the Kid since issue one and even ordered a small stuffed Herobear which arrived in our mailbox on the same day as Lyle was born last summer. Mike and I have been corresponding about Lyle off and on ever since so it was a real pleasure to finally meet him. We wish him every success with Herobear. It's a lovely story told with grace and wit. We got Mike to sign a couple of Herobear posters for Lyle. They will have a prominent place in the décor of Lyle's bedroom (once we are organised enough to actually start decorating it). Terry Moore very kindly did a drawing of Katchoo for Paloma. That's her favourite character in the series.
• Lyle is doing really well. He looks good and seems to become even more interactive every day. He smiles when he sees us (or anybody to be honest but we like to think that he reserves his special smiles for his parents).
• Lyle's medications have been changed again (despite Dr Gutierrez's assurance that the three medications he's on are giving him adequate coverage). They have dropped the Cefotaxime and the Gentomycin and replaced them with Meropenem. This is a drug used in situations where highly resistant bacteria are suspected. Lyle has been on it before and has tolerated it well. For those who are interested here is the list of bacteria growing in Lyle's cerebrospinal fluid: Klebsiella pneumoniae (two strains), Enterobacter cloacae, coag-negative Staphylococcus and anaerobic Gram positive Cocci. Not a very appetizing collection, eh? There are entirely too many things that should grow in the gut not the brain.

• We picked up some of the frozen milk we'd been storing with Dave and Krissen today (a big thank-you to them for providing us with freezer space for the last four months). Paloma's milk production has been tapering off over the last month and so we decided that we should get some of the older milk for Lyle while he's in hospital. We still have enough frozen milk to last Lyle for another six months or so. Paloma is trying to ramp up her production again by pumping more often. Of course, while he's on bed rest Lyle won't be able to nurse so the frozen stuff becomes even more important.
• All the nurses are being very good about giving Lyle the bottle before they use the NG tube. Typically he takes between 15 and 20 ml of milk from the bottle before losing interest. I got him to take 30 ml (almost an ounce!) for his six o'clock feeding. Unfortunately, consistency is not his strong suit. He only took 8 ml at 9 o'clock.
• Nothing much else happened today. Lyle was very happy so we took a lot of pictures in hopes of catching him smiling. You can see the results here: http://www.fototime.com/inv/EE60D2A5BB74502. He definitely smiled more when he didn't have the camera pointing at him. Honest.

• We arrived at Lyle's room shortly after four o'clock to find him the focus of much frenzied activity and speculation. He looked fine to me. He was more or less sleeping but Dr Dembner, one of his neurosurgeons, and several nurses were gathered at the bedside looking at Lyle's extra-ventricular drainage system. Mary, one of his day nurses, explained that earlier this afternoon Lyle had become increasingly agitated for no apparent reason. He had been crying and was generally inconsolable. While thrashing about he had, apparently, dislodged the IV catheter in his right wrist. They had tried to save it but eventually decided that it leaking too much to keep.
• During all this excitement Mary noticed that there wasn't very much fluid coming out of the EVD. Normally when he cries the flow increases dramatically. She called the neurosurgery team who sent Dr Dembner over. There are several reasons why the fluid could stop flowing. Some of them benign, some less so. One of the more serious possibilities was that the drainage catheter had been moved by Lyle's thrashing so that it was no longer placed properly in his ventricle. Fixing this could entail an emergency trip to Operating Room. This was not the news we wanted to hear on arriving at Lyle's bedside.
• Dr D tried to get the drain working again by injecting some fluid into the catheter tube in an attempt to get the siphoning action going again. When this failed he decided that Lyle needed a CAT scan in order to verify the placement of the catheter in his brain. Somehow the neurosurgery team has the pull to make this kind of thing happen. He called down to radiology and the next thing we knew we were wheeling Lyle's bed through the corridors of the hospital.
• Mary met us there with a dose of Chloral Hydrate in case Lyle wouldn't settle on his own. Good pictures require a fairly still patient. Asking Lyle to stay still on his own is generally fruitless. We tried but even his favourite pacifier wouldn't put him to sleep. Mary administered the chloral and, eventually Lyle calmed enough for the process to continue. Pictures of Lyle in the CAT scan machine can be found here: http://www.fototime.com/inv/EE60D2A5BB74502.
• We watched over Dr Dembner's shoulder as he read the images. The ventricle in which the drain was placed was comparatively fluid free (the other ventricle showed up quite clearly). Dr D's theory is that all the fluid had drained out and so Lyle's brain was pressing on the end of the tube slowing the flow of fluid. While we took Lyle back to his room he to himself off to talk with Dr Huhn.
• Unfortunately, Lyle still needed his antibiotics and so once again we had to watch while Aimee, another of the nurses there, tried to find a good vein. She said that she was on a roll with starting IV's so she felt pretty confident that she'd be able to get one into Lyle. She tried twice and didn't get lucky. She claimed that Lyle's veins don't run straight and so while she could get the needle into the vein she couldn't thread it in far enough to get a good placement. She gave up and they called the NICU to see if one of the nurses there could have better luck. We were just as glad to see Lyle get break. He is very good about the whole process but does get upset when the needle goes in. It's hard for us. We help hold him and then comfort him when they give him a break. If I could take the IV for him I'd do it a hundred times over.
• Eventually the NICU nurses arrived. It was Andrew and Teresita, both very familiar faces. They were surprised to see Lyle and sorry that he was back in hospital again. Andrew fished around a bit but didn't manage to find a usable vein. Teresita got it right the first time. She found a vein in his left wrist that couldn't even be seen from the surface and threaded the needle in on her first attempt. Significantly, Lyle barely fussed as she was doing it. I want her to do all his catheters from now on. She's very good.
• As we were sitting in Lyle's room worrying about this latest development Christine, her boyfriend Mark and his daughter Ali came by to visit. They had been in the neighbourhood and decided that Lyle needed a visitor. We'd heard of Mark but not had the chance to meet him yet. It was great to have visitors. They probably heard more of our fears than they really wanted.
• While they were visiting Dr Dembner reappeared. He had been discussing the situation with Dr Huhn and they decided that as long as the EVD catheter was not blocked they didn't really care how much fluid was dripping out of it. Dr D demonstrated that the catheter was open by taking the drain off its stand and holding it below Lyle's bed. Sure enough the siphon action caused fluid to drip into the storage container. The EVD is designed to drain off fluid once the pressure has reached a certain point. Before this it was set to drain when the pressure reached 10 cm of H₂O. Dr D set it to drain when it reached 5 cm. He emphasized that as long as the catheter wasn't blocked they would be happy with whatever drainage they got. No emergency surgery was needed.
• Feeling somewhat reassured we were able to enjoy our visitors much more. Mark's daughter was a delight. Very self-assured and smart. I'm always impressed when I meet kids who are comfortable talking to adults.
• Dr Agarwal came by to update us with the latest news on Lyle's treatment and then we had to tell her all about what had been going on that afternoon. Oh well, at least she's still in the loop. I explained to Dr A our desire to have a good understanding of where the infection had originated and a solid fix for the problem. My fear is that Dr Huhn will decide that the infection came from Lyle's belly and so he is no longer a candidate for a ventriculoperitoneal shunt. The other alternative is a ventriculoatrial shunt where the excess cerebrospinal fluid is dumped into one of the atriums of the heart. Dr H told us before that this was a much less desirable setup but I just have a feeling…
• Karen, his NICU primary nurse, stopped by to visit as well. She encouraged us to take care of ourselves even if that meant leaving Lyle in hospital alone (with the exception of the 24 hour nursing care of course). She pointed out that if something like this happens when he's three or four we won't want to leave him alone in the hospital since he won't want to be left alone. We hope that he won't need frequent hospitalisation but his life so far makes us think that we will be very familiar with hospital routine before he's grown.
• We spent the rest of the evening watching Lyle sleep. The Choral Hydrate and the stress of getting a new IV catheter wiped him out. We didn't even try to wake him for his feedings. We put his milk down his NG tube. He was starting to wake up when we left just after 10:00 p.m. (which, of course, makes it that much harder to go home).
• Monday, the 19^th
• Lyle was his usual happy self today. I told Mary that we wanted no unpleasant surprises and she was sympathetic to that sentiment. We brought some toys for Lyle given him by his as yet unborn friend, Rachel. He particularly liked the mirror and seemed quite happy to stare at himself for hours on end. We played with him a lot since he was awake and alert (unlike yesterday). He certainly seems none the worse for wear. Each day he is more interactive. He smiles more spontaneously (although he does seem to recognise the camera and become more reserved in its presence).
• Michele, the occupational therapist, saw Lyle earlier today and said that he is a changed baby. His suck has improved immensely. She was very impressed. It looks to me like he is doing better, however he still loses interest after taking half an ounce or so. But every little helps. We would love it if he could be weaned from the NG tube before he comes home.
• It seems that Lyle's weight has been in a holding pattern since he entered hospital. He was 4.2 kg when he was admitted and he is still 4.2 kg. We asked his nurse if she would have a nutritionist look in on him and see if there's anything that can be done to get him gaining weight again. Perhaps we'll find out more tomorrow.
• In the early evening Mary received a call from Dr Dembner. He and Dr Huhn had discussed Lyle's situation further and decided to make another change. They wanted her to set the EVD to drain when the pressure in Lyle's skull reaches 15 cm of H2O. The nurses will be monitoring Lyle's neurological functioning very carefully. The danger signs are vomiting, irritability and "sunset" eyes (wide open, crossed and pointing down). Although no-one wants to say anything definite yet Paloma and I think this could be a sign that Lyle may not need another shunt. Perhaps the normal mechanisms for relieving CSF pressure in his brain have started working properly and that's why the EVD stopped draining yesterday. We would be delighted if this were the case but we're trying not to get too excited by the possibility.

Morning...

• As of about nine o'clock Lyle was still doing fine. He gave no signs of being distressed over night. We're hoping that Dr Huhn will call sometime today and talk to Paloma about what's going on.

Evening…

• Well, we finally got to talk to Dr Huhn. He was with the rest of his team today when they made their rounds. He feels quite strongly that Lyle's infection began in his belly (probably as some bacteria leftover from his necrotizing enterocolitis). As a result he feels that when Lyle gets his new shunt it will be one of the less desirable ventriculoatrial type. The advantage of this type for Lyle is that infection in his belly shouldn't cause another cerebrospinal fluid infection. The disadvantage, as I understand it so far, is that any infection in his CSF, regardless of origin, could quickly spread through his entire system since the infected fluid would be fed directly into Lyle's heart.
• I asked Dr H if there was any chance that Lyle might not need a shunt at all. He felt it was unlikely but that stranger things have happened. My impression is that he didn't want to snatch that hope away from us by laughing in my face but that if it's up to him (which, of course, it is) a new shunt will be installed.
• I guess it's best to have one's expectations set properly up front. I had almost convinced myself that Lyle wouldn't need another shunt. I guess it's good to have a more realistic view of the future.
• You know, it is very hard to not get bogged down in all the details of Lyle's medical problems. Especially since his problems are now front and centre as a result of his hospitalisation. I have to make a mental effort to remember all the good things about my sweet baby. It didn't help me much when I read a posting on the Web yesterday by a parent whose baby had undergone six shunt revisions in seventeen months. She was quite proud that the last operation only required two days in hospital. An extreme case or a vision of our future with Lyle?
• Disturbingly, Dr Huhn never referred to Lyle by name. It was always "the baby this" or "the baby that". Professional detachment? Bad bedside manner? You decide.
• The nutritionist did stop by to review Lyle's case and she had a couple recommendations. Lyle's volume could be increased to 72 ml every three hours (up from 65 ml every three hours). Otherwise, she felt that he could get more calories per ounce by increasing the amount of Nutramigen mixed into the milk. His nurse said that breast milk is nominally 20 calories per ounce. We've been adding half a teaspoon of formula per ounce which raises it to 24 calories. She thought that three quarters of a teaspoon might help. This would give Lyle 27 calories per ounce. The change has to be reviewed by a pediatrician (everything that goes into or onto a baby has to have a doctor's order) but should happen tomorrow. The risk is that Lyle could spit up more than he does currently. I guess the risk is worth it if Lyle starts gaining weight. As one of his nurses pointed out, being in hospital and fighting an infection takes a lot of energy. All the more reason to give him a little boost.
• We just reached the point in Anne of Green Gables where Matthew dies. It's very sad.

• There's nothing much to report today. Lyle looks good and is, as always, happy to see us (although, truth be told, he seems equally happy to see the guy who delivers dinner).
• We chatted briefly with Dr Bates, yet another member of the neurosurgery team who also looked after Lyle when he was in the NICU. We were dismayed to learn that the sample of CSF taken last Wednesday has grown out Klebsiella and Enterobacter. This means his course of antibiotics will likely be four weeks rather than three. They took another sample yesterday and so far it has been clean for a day. The glucose level of his CSF is still low (which would be consistent with organisms still growing there). They are also concerned that Lyle's CSF is xanthochromic (meaning it has a yellowish tinge) but I'm not exactly clear on what that signifies. The good news is that his white blood cell count is closer to normal.
• When the neurosurgery team did its rounds later in the evening one of the residents commented on how alert and interested Lyle was in all that he saw around him. He said this was a very good sign. He said that Lyle is obviously very intelligent and that we are lucky to have him. It was nice to get a non-clinical opinion.
• The pediatricians are still pushing for a central line, probably a Broviac again. Sometimes they tell us Friday and others they say Monday. I hate to think of Lyle having another operation but the end result would be much easier on him. Medications could be given and blood taken through the same line. This would save his poor heels from being stuck over and over again. If they delay any longer the question will be moot. He's already almost half-way through his course of antibiotics (more than half-way if we take Dr Huhn's estimate of three weeks on antibiotics).
• By taking turns and letting him take his time we managed to get Lyle to drink almost an ounce of milk for his six o'clock feed. I stuck my fingers under his chin and helped him get a tight seal around the nipple. That seems to work really well. He doesn't seem to get as overwhelmed when he finds milk in his mouth either.

• Every evening since Lyle has been in the 3E ward we've had someone from the LPCH Family Resource Centre stop by to ask us if we need any books or movies to help pass the time. Every evening we've declined their kind offer but tonight we decided to borrow movie. One of the volunteers dropped off a list of movies and on looking through it there were several that we were able to agree on. While Paloma was feeding Lyle I went to the Resource Centre to see what I could get. After an initial miss (Inspector Gadget had already been loaned out) I settled on The Hunchback of Notre Dame (the Disney version from a couple years ago). Neither Paloma nor I had seen it and it sounded light enough to be tolerable. We enjoyed it despite the interruptions.
• The neurosurgery team descended on us again tonight, right after the kitchen had delivered Paloma's BFM meal (that's short for Breast Feeding Mother although it sounds like it should mean something much worse... I'll let your imagination run wild). Dr Dembner took a look at the plate and ventured the opinion that Lyle was perhaps a bit too young for a turkey dinner. I think he wanted it for himself. The team had nothing new to add. Treatment is going well. Carry on. A visit from the neurosurgeon's is really quite a production. Five or six interns and residents crowd into Lyle's room. Someone asks us how things are going. We say, aren't you supposed to tell us that? And the next thing we know they're gone. It's a surreal parody of a doctor's visit with Dr X played by your favourite Marx brother. They've come and gone before we know what has hit us.
• Later Dr Agarwal stopped by to give us an update. There seems to be a certain lack of communication between the various groups looking after Lyle. We tell Dr A all the things we've heard over the past few days and she either confirms or denies them. In particular she was surprised to hear that the neurosurgeons thought that the sample of Lyle's CSF taken on the 14th was growing stuff. According to what she'd seen in the LPCH computer that sample was still sterile. She promised to look into the situation and find out the truth.
• We talked with her a bit about the ventriculoatrial shunt and expressed our concerns about the procedure. She said that she had never heard of the procedure before we'd mentioned it to her and that she needed to do some research on it. Ultimately, she said, it was our decision as to what procedures were performed on our little boy. While true this is not especially comforting. What if we make the wrong the choice? I suppose the doctors are there to act as expert advisors. They inform us of the risks and benefits, they make recommendations. But then they leave the final decision up to us. I think we have reached the point where we have almost enough knowledge to be truly dangerous. we have a superficial familiarity with the jargon and access to the massed resources of the Web (the world's largest collection of half-truths and damned lies). Be afraid!
• After doing a bit of research Dr A came back to tell us that she was almost certain that the sample from the 14th was still negative. It looked to her as though the Stanford hospital computer had only received word of Lyle's infection on the 15th and so were attributing it to the sample taken on the 14th rather than the one taken on the 11th. She promised to check into it further and get the problem fixed. When things like this happen we really feel a part of the team taking care of Lyle. Without us the erroneous results might've stood and affected Lyle's treatment plan.
• We headed home feeling a bit more optimistic. Perhaps Lyle won't have to have a 28 day course of antibiotics after all. Although, as Dr A pointed out, if a child without a shunt had presented with just one of the bacteria that Lyle was growing he would've instantly earned a 21 day course. The Infectious Diseases department may put their collective foot down and insist upon the longer treatment. I don't think we would discourage that even though it would mean Lyle couldn't come home until the middle of March.
• It was pissing down rain last night on the drive home. As we neared the summit on Highway 17 I went to pass a Salvation Army truck only to have vast amounts of thick water thrown up by it's tires wash over my windshield. Hmmm..., I thought as Paloma napped, that looks very slushy. Then I clued in. It was slush. The rain had turned to snow and there was fresh white stuff by the side of the road. Suddenly, as we rounded the bend, traffic was slowed almost to a standstill. A CHP car was making it's way up the slow lane, lights flashing, signaling everyone to move to the fast lane. Then we saw the accident. One car was completely off the road. It seemed to be snuggled into a tree. Just past it another car lay on its roof. A couple hugging each other stood right next to it ignoring the curious looks from the cars slowly passing by. It was very sobering. Traffic was very heavy from the summit back to Santa Cruz. We passed one guy in a brand new car driving 20 miles per hour. Obviously he was feeling a bit uneasy about the driving conditions.

• One of the general pediatric surgery team doctors stopped by to look Lyle over prior to his surgery on Monday. This is not the installation of a new shunt but is, instead, a minor operation to put in a central line. It seems they will be going with a Hickmann this time rather than a Broviac. The two types of line are very similar. Almost like different brand names for the same product. Mostly I think he wanted to make sure that Paloma and I signed the consent form for the procedure. I was recalcitrant. How could I sign for the procedure in good faith when we don't really know what the treatment plan is? If Lyle is only going to get three weeks of antibiotics (as suggested earlier this week by Dr Huhn) then he's two thirds of the way there. Is there any point in installing a central line for a single week? If he still has two more weeks of antibiotics then the line makes sense. Obviously this one operation could spare Lyle a lot of smaller insults: antibiotics can be administered through one port on the Hickmann, blood taken from the other. No more heel sticks. No more fishing around for a vein when his current IV stops working.
• The doctor knew nothing about Lyle's treatment plan. He said his team had been called in as consultants and that we should talk to someone on the general pediatric team overseeing Lyle's treatment. Easier said than done. In a vaguely ominous fashion the doctor pointed out that not having the consent signed by Sunday could delay Lyle's operation. In retaliation for the thinly veiled threat I made him wash his hands before letting him examine Lyle. He looked vaguely peeved, as though I was implying something bad about his bathroom hygiene.
• Other than that little bit of excitement Lyle looks really good. He's fun to talk to and fun to play with.
• When we got home Paloma read me the last chapter or two of Anne of Green Gables. I think I liked Anne best when she was a gabby little girl whose inner life was always on display. As she got older and more reserved I found her much less interesting. The first three quarters of the book had me smiling whenever she talked. The last quarter was okay but not nearly as much fun.

• Nothing new to report. We spent the evening with our boy. He's doing well.
• Rico, the night nurse, brought the operation consent form for us to sign. We're assuming (since no-one has told us otherwise) that Lyle is to get two more weeks of antibiotics. That was the most recent recommendation from the Infectious Diseases team and everyone is treating Dr Huhn's statement as erroneous since he's not the expert in these types of infection. We signed most meekly.
• I finished reading Over Sea, Under Stone to Paloma and Lyle. Tomorrow we'll start The Dark is Rising.

• We've gone long enough without talking to a doctor about Lyle's care. Paloma had Bonnie, his nurse again this afternoon, page a doctor as soon as we arrived.
• We found Petie, one of the nurse's assistants, flirting with Lyle. She was really in there just to take his vital signs but had been distracted by his winning personality. He is so cute. He was smiling at her and making all sorts of wordless sounds. After we'd washed our hands, Paloma joined in and just did her usual motherly check to make sure that Lyle was okay. She quickly noticed that the arm with the IV was looking puffy. This is an almost sure sign that the IV is not working properly and is sending fluid into his tissues rather than into his veins. Bonnie and Petie checked it out by trying to flush the line. Bonnie hooked up a syringe with saline in it to the IV port. As she tried to push fluid through the line I saw it squirt out from underneath the dressing onto his bed. Sadly, I was the only one who saw that. Maybe it was my imagination. At any rate, they decided to pull the catheter rather than take a chance with it malfunctioning. Bonnie then tried unsuccessfully to insert a new catheter. Twice. Lyle screamed the whole time. It was very distressing since we tried to stay by him and hold him and comfort him while all this is going on. It is disturbing that the last couple of IV failures have been discovered by Paloma and not by his nurses.
• After Bonnie's failure she called down to the PICU to see if there was someone there who'd give it a try. I didn't catch her name when she arrived but she was good. She found a nice vein and threaded the catheter in on the first try. Lyle cried but much less than when Bonnie was fishing around inside his leg with the needle. I should point out that Bonnie actually got the last catheter in (on Thursday I think) without any difficulty. One nurse told us that it was more luck than skill. Sometimes you look good and sometimes you don't. Bonnie was very apologetic for having traumatized our little boy.
• Apparently the neurosurgeons wanted Lyle to have another (routine) CAT scan, just to make sure that nothing inside his head has changed more than they think it should. Lyle was on call for the procedure when we got to his bedside. The only downside to this was that he had to be NPO (nothing by mouth, i.e. no food) prior to the scan since they wanted to sedate him with more Chloral Hydrate. I guess it works better on an empty stomach. Poor Lyle. As his six o'clock feeding came and went he got noticeably crankier. That being said, he did allow his parents to soothe him and he did eventually fall asleep (bless his patient little heart). Paloma was really angry with this. He will have to be NPO for eight hours before his operation tomorrow. It seems cruel to do this to him today.
• One of the pediatric team residents, Dr Lai (I think that was her name), eventually showed up in Lyle's room as I was reading the first chapter of The Dark is Rising to Paloma and the sleeping Lyle. She had wanted to review his chart before talking with us since she was not actually following Lyle's case.
• We really need to get more frequent updates. The nurses never seem to have current information. Either that or they never think that the information they do have is worth passing on. I'm not sure which. Dr Lai told us all sorts of things that had been going on without our knowledge. It seems that the doctors were concerned that Lyle's respiration rate had been increasing. Not all the time but he'd had enough episodes of rapid breathing that they felt it worth checking to see if he had any of the viruses currently making the rounds. They'd taken some nasal swabs a couple days ago. They check for five or six common viruses and Lyle had none of them. Of course there are thousands of other viruses so the negative results don't really mean much. At least he doesn't have RSV. That's the baby killer.
• Dr L also told us that Lyle still isn't gaining weight as fast as they would like. A nutritionist has been called in and will be doing an evaluation of Lyle's calorie intake over the next couple of days. There are other additives that can go into his breast milk to help bulk him up. I wondered if they could just increase the amount of milk he was getting. They're giving him 65 ml's every three hours. This is the same amount that he was receiving when he came home from the NICU in January. He's a couple pounds heavier now. Unfortunately, the big worry is his fluid balance. He gets a certain amount of fluid through his IV every day. That and his feeds place certain demands on his kidneys. Too much fluid taken in each day could translate into an increase in pressure in his cerebrospinal fluid. Or the extra fluid could end up make his lungs soggy again. If he was at home we'd just feed him more but managing his food in the presence of a life threatening bacterial infection is much more complicated than that.
• She thought that the CSF sample taken on the 14th had shown growth and had a very fuzzy memory of Dr Agarwal claiming otherwise during rounds last week. Dr L suggested we have Dr A paged tomorrow evening since she was actively following Lyle's case and would, hopefully, have more accurate information about him. We'll give that a try. It seems like we have to be more proactive to get the information that we need to understand Lyle's situation.
• We were getting ready to leave around 8:00 when Karen and Kas came by to visit. Karen and her family had been to Disneyland last week and she brought Lyle a hat with his name on it. It's very cool but he probably won't be able to wear until the external drain has been removed. We reminisced about the good old days in the NICU when we always knew what was happening and never had to worry about failing IV's. The NICU nurses always caught the failure before us and fixed them while we weren't there.
• The radiology team still hadn't called for Lyle when we left. Patrick, the night nurse, said they weren't responding to his pages but that he would continue harassing them until they took care of Lyle.
• We watched some of the shows we'd videotaped last week. Finding the time to view them has been somewhat difficult since I'm either working or in Lyle's room. Why, you may wonder, don't you watch them in Lyle's room? It has a VCR after all. Yes it does but the sound is crappy and the interruptions really degrade the viewing experience. I actually prefer reading aloud or being read to. Interruptions don't seem to matter so much.
• We called before going to bed and learnt that Lyle had gone for the CAT scan around 9:30. He was back in his room and sleeping peacefully, after being fed on his return.

• Lyle's surgery was scheduled for 2:00 p.m. and it went off exactly as planned. He was taken down to the Operating Room at 1:30. When I called at 3:45 he was in the Recovery Room and Megan, his nurse today, was just waiting for him to be brought back to his room. By the time we arrived it was almost as if he'd never been gone.
• He was sleeping when we got there. Megan told us that he'd been really upset when he first got back. He was obviously hungry but he was so out of sorts that he wouldn't take anything from the bottle. As soon as she put some milk down the NG tube, around 4:30, he calmed right down and went to sleep. When he did wake up for us he seemed very groggy. He was not his usual smiley self. His eyelids seemed very heavy. He also looked a bit puffy to me. He was on IV fluids all morning and they usually give a bolus of fluids in the OR to keep his blood pressure up. The extra fluid manifests as edema in his soft tissue. This should pass in a day or two. He is still getting a diuretic (Aldactazide) to keep his lungs dry. When we mentioned Lyle's historical tendency to collect fluid in his lungs Megan listened to them and said they sounded clear.
• Megan paged the neurosurgery and general pediatrics team to have someone come and talk to us about yesterday's CAT scan and to find out how Lyle was doing in general. Dr Bates and Dr Agarwal duly arrived, one after the other, to give us the update.
• Dr Bates is the neurosurgery resident. He said that the CAT scan looked good. Lyle's ventricles are smaller although there are still signs of hydrocephalus. He felt that Lyle would need to have another shunt installed although he deferred that call to Dr Huhn. The plan, according to Dr B, is to reinstall the shunt around day 21 of antibiotic treatment (i.e. early next week) and continue treatment until day 28. The placement of the external ventricular drain catheter is still good so there are currently no worries about emergency surgery to correct that. We left a message on Dr Huhn's answering machine asking him or his nurse practitioner to call us tomorrow and explain their current thinking on Lyle's situation.
• Dr Agarwal, from the general pediatric team, confirmed that there was no growth from the sample of CSF taken on the 14th. This won't affect the duration of Lyle's treatment. She continues to wean Lyle from his other medication. She stopped the potassium chloride today and plans to check his blood chemistry tomorrow. He really shouldn't need the extra KCl since it was other diuretic (Lasix), which caused the potassium deficit. Unfortunately, Dr A is only on service until Friday. Then we will have to break in a brand new resident.
• Following Megan's plan for getting Lyle back on his feeding schedule we gave Lyle some more milk at 7:00. He took some from the bottle and then I gavaged the rest. While doing so I noticed him licking his lips and looking a bit uncomfortable. In the past he has done this before throwing up. Foolishly I ignore the signals and continued with the feed. Half an hour later he vomited up everything. Poor little guy. It looked like all the milk from his 4:30 feed and his 7:00 feed came back up. He seemed much happier though after Paloma had him all cleaned up. He even smiled at us before falling asleep. Gracie thought that he probably still had some anesthetic in his system making him feel a bit punk. She decided to watch him closely and try to feed him again later. Gracie didn't want to give him an anti-nausea drug since that could affect his consciousness and confuse the neurological checks they perform every hour or so.
• The good news after all this Sturm und Drang is that the Hickmann was properly placed and can now be used for administering antibiotics and drawing blood. The cranky IV was still in his hand when we left but they promised to remove it as soon as possible. That's one less thing to worry about.

• Almost as soon as we arrived at Lyle's bedside DR Bates from the neurosurgery team appeared asking us about Lyle's hernia. I just looked at him blankly. Paloma clued in almost right away that he was talking about Lyle's belly. I don't know if you, my faithful readers, remember but just before Lyle was released from the NICU we were informed that Lyle had an abdominal hernia and that it wasn't something serious but that he would probably never be able to do sit-ups. I'd forgotten. Dr B took a look at Lyle's belly and it is not evenly rounded like a normal baby's. In one place it looks like he has a little pouch under the skin. The question has been referred to the pediatric surgery team on the grounds that if something needs doing now is the time to do something. Paloma and I just looked at each other and felt sick about it. The problem with being in hospital is that you do have all these doctors examining every little thing. Sometimes it seems that they find new problems just so you'll think they're doing their job.
• Paloma was upset to find another bandage on Lyle's heel. We'd thought that the Hickmann would mean that he didn't need any more sticks for blood work. Teri explained that the phlebotomist hadn't been aware of the central line and had drawn blood from Lyle's heel before Teri could tell her of the change. Oh man, let's all get on the same page, okay?
• We borrowed the videotape of George of the Jungle to watch but didn't really get a chance to see it what with one interruption after another. Maybe tomorrow. The Resource Centre allows you to keep their tapes out overnight.
• Once again Lyle stopped producing cerebrospinal fluid from his drain. Teri, his nurse, looked at it tried to verify that the catheter was not blocked by taking the drain receptacle off its stand and holding it below the bed. Stubbornly, no fluid came out. She called the neurosurgery team to see if they could check it out. The resident who appeared was rather taciturn, parsimonious with his words. He rather curtly asked us to leave while he flushed the line. I'm not going to hurt her [sic], he said. Him, I said but he didn't seem to hear me. We've watched and helped while nurses tried to insert IV's. What was this guy doing that he felt we shouldn't see? That we wouldn't be able to handle? My guess is that he just didn't like having people watching him work.
• We waited outside and peered through the curtain at him as he did his thing. To amuse ourselves we took turns using the measuring ourselves with the gadget attached to the wall. It turns out the Paloma is 63 and 1/8 inches tall while I am 74 and 7/8 inches (almost an inch taller than I've been telling people all my adult life).
• True to his word, the neurosurgeon didn't even make Lyle cry. He did flush all the blood out the catheter leading to the fluid receptacle. The fluid he left in there was disturbingly red. Whenever we ask, the neurosurgeons say that small clots of blood in the catheter are perfectly normal. They are due to irritation caused by movement of the catheter in Lyle's brain. I remain less than reassured. The resident went off and talked to Dr Huhn. They decided to leave the drain in place and watch Lyle some more. He will get another CAT scan tomorrow morning to make sure that the catheter is still placed correctly and to see how his ventricles look.
• Before we left I placed another call to Dr Huhn's office since we hadn't heard from all day. I tried to be polite and yet get across the point that despite all the visits from residents we still didn't have a really good idea as to the treatment plan. When we got home we found a message on our answering machine from Dr H explaining the treatment plan as of 6:45 (about an hour before the latest excitement over the non-draining drain). The mixed messages are somewhat frustrating. The treatment plan changes on an hourly basis. I think Paloma finds this frustrating. On thinking about it I decided that I liked it better if they respond to events as they change rather than stubbornly sticking to the original plan.

• For various reasons not entirely relevant to Lyle's story we arrived at his bedside around noon today to find him awake and happy. Teri, sporting a small ashen cross on her forehead in honour of Ash Wednesday (that's the day after Mardi Gras, right?), said that he'd been a very good boy this morning. He'd been relaxed and had kept still for his CAT scan without needing more Chloral Hydrate. He is keeping all his milk down and the Hickmann is working just fine. Teri made the lab tech use it for his blood draw today.
• We gave him his noon feed. He is taking between 20 and 25 ml by mouth now. His suck definitely seems more efficient but he just loses interest after a while. We try to respect his decision. Of course he still needs food so we use his NG tube. He then slept for most of the afternoon.
• Trish Murphy, Dr Huhn's nurse practitioner, came by to draw off some CSF for some more lab work. She was great. We had all these questions that she was able to answer completely. She's Dr H's right hand and knew all the details of Lyle's case. We mentioned that the residents weren't particularly forthcoming. She said that was because they didn't know anything. Hmm... I guess that makes sense.
• Anyhow, I'll try to distill down the information that Trish gave us. The big question right now is whether Lyle actually needs a shunt or not. Lyle's hydrocephalus was caused by the intraventricular hemorrhage he suffered shortly after birth. The blood in his brain clotted in the normal pathways for CSF drainage. Blood is also an irritant to the sensitive tissues of the brain and caused a certain amount of scarring to the tissues that normally absorb CSF. This prevents them from doing their job. However, this type of hydrocephalus is one of the few from which people, and especially babies, can recover. In a baby those tissues are still growing and can, in theory at least, recover most of their functionality over time. In most people however, once the shunt is installed it is assumed to be working and needed. Their brain could have recovered completely and you'd never know because no neurosurgeon would subject a healthy patient to an operation to remove the shunt solely for the purpose of determining whether it is needed or not. The happy side effect of Lyle's infection is that he does now have the external drain and so they can watch his CSF output very carefully to see if it still warrants a shunt. Trish said that a shunt-dependent baby would drain off something like 10 ml's of CSF per hour. Sometimes Lyle only produces that much over an eight-hour period.
• There is still some debate over the course of action. Lyle will get a full 28-day treatment with antibiotics no matter what. He will be done with that on the 11th of March. At some point (before or after the 11th is not clear) they want to challenge Lyle and see how he behaves. They will either remove the catheter (a simple procedure which Trish could do at Lyle's bedside) or they will clamp it off for a day or two. His neurological function will be examined very closely during this testing period. If he is shunt-dependent they will install the device on the 14th. He will be kept for observation another couple of days and likely released to us on the 17th or 18th. If he does not need the shunt then he could be released even earlier. Perhaps on the 14th. Reading between the lines, Trish seemed quite optimistic that Lyle would not need the shunt.
• Lyle, big-hearted baby that he is, held Trish's finger as she was draining CSF from his catheter for the next round of tests for microbial organisms. He smiled up at her in a most endearing fashion. He likes everyone.
• There are, of course, some other quirks. If Lyle does need the shunt then they would probably send him home with his Hickmann still in place. Then if he were to develop an infection it could be treated with IV antibiotics without the need for more IV catheters. The valve of the Hickmann would be "hep locked" (meaning that it would be filled with heparin, an anticoagulant that would prevent it from being closed by a blood clot). Trish said that we would be trained in caring for the Hickmann before they sent him home. Paloma figured that it wouldn't need much maintenance: make sure it doesn't get wet, change the dressing once a week or so, that kind of thing. If he doesn't need the shunt then they would remove the Hickmann before he was sent home.
• Dr Huhn actually made an appearance later this afternoon. He was much less sanguine than Trish on Lyle's need for a shunt. He still seems set on installing one. Well... I should say, "on having one installed." He himself will be in Cuba (smoking cigars with his buddy Fidel?) on the 14th. The actual surgery would be performed by one of his colleagues. Dr H confirmed that he would not, at this time, consider another peritoneal catheter. Instead they would insert the catheter into Lyle's heart. This is what they did for the original shunt operations 50 years ago. The heart can handle the volume of fluid output by the shunt. The extra fluid is simply eliminated from the blood stream by the kidneys. This operation has more long term risks associated with it. There is a slight chance of damage to the heart from the catheter. Infections of the CSF can become serious blood infections and vice versa. Also, unlike the situation with the VP shunt they cannot put an extra coil or two of catheter into the heart to allow for growth. As a result, VA shunts need to be revised more often than VP shunts. The good news is that if Lyle's VA shunt needs revision in a couple years they can re-evaluate and perhaps change back to a VP shunt at that time. This is especially likely if he hasn't had any infection in his peritoneal cavity during that time.
• I asked Dr Huhn if the tests for a leaky intestine or urinary reflex were negative would he consider a VP shunt now. He said no. The florae of the CSF infection were all intestinal. The most likely source was the belly. He felt we were very lucky to have caught the infection as early as we did. Lyle never really got as sick as was very possible. He didn't want to risk another such infection. Once bitten twice shy as the saying goes.
• My feeling is that Dr Huhn is trying to set our expectations properly. If we expect the VA shunt and he decides it isn't necessary then we will be very happy. If we expect no shunt and he has to install one then we get hit with a huge disappointment. I think this is fine. I'm just happy that they are looking at all the possibilities.
• Later this afternoon Trish returned with pictures from Lyle's latest CAT scan. She showed us his ventricles looking nicely decompressed. The catheter placement looks okay. Not the best but still in a ventricle and hence good enough for now. Paloma pointed out that Lyle's head was lop-sided. The right side being somewhat flatter than the left. She said that was due to his preference for looking to his right. If that preference were allowed to continue unchecked the asymmetry would just get worse. For now she felt that he should be encouraged to sleep on his left.
• Trish also told us that Dr Moss of the pediatric surgery team had looked at Lyle's hernia and said that he absolutely did not want to perform any sort of repairs on it. Such repairs would only be cosmetic. Lyle doesn't need another operation. (I was going to say he needs another operation as much as he needs a hole in the head when I realised that he already has a hole in his head... so much for that pithy saying.) Paloma and I breathed a sigh of relief.
• Through all this we managed to watch both George of the Jungle (I laughed a lot and enjoyed it immensely) and The Princess Bride (I still think the book is better but the movie is quite wonderful). Lyle slept through the afternoon. In fact, he slept through most of his three o'clock feeding and managed to drink almost 20 ml's despite that. We left him around 7:00 p.m.; just in time to catch the tail end of the evening commute traffic.
• We have been watching a show called Ground Force on BBC America. The premise is simple: one member of a couple tricks the other into being away for two days. Then the Ground Force team comes in and transforms the back yard in some unexpected way. The editing is not quite as crisp as it is on Changing Rooms and the host seems a bit too pleased with himself but it is fun to watch the transformation from weeds to turf. After watching an episode yesterday Paloma and I agreed that it might be fun to work on our garden a bit. We've been concentrating on the inside of our house so much that the yard has been a bit neglected. 

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