Pictures for the month of March can be found by clicking on the camera icon .

• We said goodbye to Swati Agarwal this evening. She has completed her rotation through pediatric surgery and will be moving on to other things. She has been really good about keeping us informed of changes. It's too bad she has to move on. The continuity of care that she provided Lyle (she knew him briefly in the NICU before he was discharged) was quite reassuring. She made sure that his non-infection issues didn't get lost.
• Lyle is so cool. Everyone comments on how sweet he is. Given his history he would have every right to be a cranky baby: he gets stuck with needles all the time, people in oddly fitting uniforms wake him in the middle of the night to shine a light in his eyes, he can never get anyone to pick him up no matter how pitiful he looks while asking and so on. But he isn't. He is remarkably mellow.
• We're still trying to get the results of yesterday's hearing test. We have asked all the nurses. They say they will check his chart but something goes awry after they leave the room. So far no one has been able to tell us anything. We'll keep asking.

• Lyle continues to do well.
• The big excitement today was that he got the next installment of the Synagis vaccine. This will, with luck, protect him from the dreaded RSV for another month. Once he gets home he will probably need one more booster to get him through the RSV season. There was a baby a couple rooms over with RSV. When we learnt this we made very sure that everyone who touched Lyle washed his or her hands. Having that baby on the same floor as Lyle made us very nervous. Apparently there were a lot of cases of RSV this year. It can be deadly for the little ones, especially those like Lyle who have mild chronic lung disease.
• We watched Inspector Gadget tonight. The Resource Centre was open when I went to heat up my dinner and so I took the opportunity to grab a videotape. It was quite amusing. Most of the tapes we've chosen so far have been comedies. We don't want to expose Lyle to too much violence before his first birthday. I'm actually finding all the family-oriented fare somewhat stressful. My personal guideline for rating movies goes like this: explosions = good. From that point of view Inspector Gadget worked out just fine.

• When we talked with Lyle's nurse this morning we told her that we still hadn't heard the results of the hearing test performed last Wednesday. She said that she would have a doctor paged when we arrived so we could get an update. True to her word she paged him and he arrived in Lyle's room shortly after we did. His name is Mauricio Mejia, MD this evening. He's the new resident following Lyle's case, our contact on the General Pediatric team. He was very pleasant and quite well informed. All good things from our point of view.
• Apparently, the hearing test on Wednesday confirmed the previous results: he has fluid behind his eardrums (which is not quite the same as being "wet behind the ears"). A follow-up test will be performed next week. We mentioned that Lyle would have to miss his scheduled appointment with an Ear, Nose, and Throat specialist in Santa Cruz due to this hospitalisation. Dr M said that he would arrange to have a pediatric ENT see Lyle before he was released. This would be perfect. The ENT in Santa Cruz is not a pediatric specialist and would, most probably, have referred Lyle to someone at Packard Children's Hospital anyhow. We might as well get this examination over with now.
• The enforced bed rest rule has been followed very strictly. I was surprised to learn that Lyle had not actually been weighed since the 18th of February. He weighed 4.2 kg back then. They finally decided to take the risk and weigh him again this morning after his sponge bath. He's now a whopping 4.7 kg! That's about 10 lb. 5 oz. for the metrically challenged among my readers. This tells us that he is getting enough calories every day. He still seems to get hungry between scheduled meal times. Whenever we're there and he's fussy we give him a little bit of extra milk. That seems to soothe him. He is also getting better about taking his food PO. He will now take about half of his meal by mouth before losing interest.

• Lyle has loads of girl friends. Every time we meet a new nurse it is almost guaranteed that she will say something like, "oh, he smiled at me and I just fell in love with him." I think he gets a lot of extra interest as a result of his winning personality. He is, after all, the cutest baby in the whole wide world. So there! Pbbbbbbt!
• We watched Tarzan tonight. It was quite exciting. Lyle was on the edge of his bed through the whole thing. Still, it was hard to watch it and not be reminded of similar scenes in George of the Jungle that were played for laughs rather than pathos.

• Once again I have nothing exciting to report.
• Lyle was awake when we got to his room. One of the volunteers was there talking with him. He was his usual charming self, adding yet another girlfriend to his stable. She said she would check on with him when she returned next Monday.
• We talked to him and played with him and the evening passed easily enough. He was awake from when we got there until about 8:00. He was sleeping peacefully when we left. It was funny to see how quickly he crashed. One minute he was bright-eyed and interested in everything we did. The next his eyelids were droopy. A minute or two later and he was completely sacked out. It's somewhat easier to leave when he's sleeping. We can pretend that he sleeps until we arrive the next day and so doesn't miss us.
• I have to say that this hospital stay is nothing like our NICU experience. Then it seemed that there was new bad news every day. We used to dread walking into the NICU. Each day now seems much more benign. Lyle is more robust. Yes, it's hard to see him with medical hardware attached but he will heal and he probably won't remember any of this. It's his poor, long-suffering parents who will carry the emotional scars to their grave. Give us your pity (bills would be appreciated but we will accept coin).

• When Paloma or I call the hospital in the morning we always ask if anything new is planned for Lyle or if anything of interest has happened. When we get to the hospital in the evening we always ask how his day has been or if there have been any changes in his treatment plan. Almost invariably we're told that he had a good day (or a cranky day or a bored day) and that's it. Sometimes it feels like we're the last to hear anything because none of his nurses actually know what is going on.
• Despite having said goodbye, Dr Agarwal has not abandoned us. She stopped by this evening to see how we were doing. She was able to tell us that Lyle's Aldactazide had been discontinued today and that he was being watched closely to ensure that his lungs didn't get all junky. Also, they (uh... the nutritionist I guess) decided to increase Lyle's meals from 65 ml's to 75 ml's of formula-enhanced milk every three hours. At least we can get the updates from someone.
• When Lyle was in the NICU the nurses all sat in on doctor's rounds and so had a pretty clear picture of the state of Lyle's health and were, generally, willing and able to give us a complete report. We're trying to keep on top of Lyle's current medical situation but it's frustrating to not be told anything despite our repeated questions.
• We watched Babe: Pig in the City this evening while Paloma looked after Lyle and I worked on our income taxes for last year. I don't feel that I saw enough of the movie to pass judgment on it. The animal characters were interesting. Some of the scenes were quite disturbing (like the one where the little dog with it's hind legs in a wheelchair was dragged along behind the animal control officer's truck). I liked Babe (both the book and the original movie) a lot. I'm not sure I'd recommend the sequel.
• Before returning home we left a message with Dr Huhn asking for him or his nurse practitioner (Trish) to give us a call and let us know their thoughts on Lyle's treatment plan. With luck we will get another detailed report in the next day or so.
• Lyle looks good. He seemed quite tired today and wasn't as interactive as yesterday. We just encouraged him to sleep. He gets quite agitated when he's sleepy but unwilling to give in to the inevitable: he thrashes his arms around. We bundled him up tight but, little escape artist that he is, he managed to get an arm loose in no time at all. We gave him an illicit, between meals snack before we left. It was only half an ounce but he sucked it down with vigor. All that warm, freshly pumped milk in his stomach seemed to do the trick. He was almost asleep when we left.

• I should have learnt by now not to tempt the Fates by commenting on how well Lyle is doing.
• When Paloma called the hospital this morning Arlene, the day nurse, informed her that Lyle had two episodes of emesis (I had to ask what that meant, why can't they just say that he threw up?). The current feeling is that the increase in his feeds may be stressing his stomach. He will be watched after all his feeds today.
• Paloma talked with Trish, Dr Huhn's nurse practitioner, this afternoon. Their plan is to complete Lyle's course of antibiotics on Sunday the 11th. Trish will remove the external ventricular drain on Monday. Lyle will get a CAT scan on Tuesday then if Lyle's ventricles are enlarged (as it is expected they will be) Dr Huhn's colleague will install a ventriculoatrial shunt on Wednesday. Lyle will be observed for a couple days after the operation and then likely released on Saturday. Trish's thinking is now more in line with Dr H's in thinking that the shunt will still be necessary. She said that it might not be an emergency situation but that Lyle would probably need the shunt (i.e. be showing signs of neurological distress) in a couple weeks without it. Oh well, it's disappointing but not unexpected.
• Shortly after we arrived in Lyle's room Maria, the nursing supervisor, appeared at the door. She apologized for not having made the effort to meet us before now. Then she said that she wanted to explain something that had happened today and invited us to sit down. This was very unnerving. Paloma later told me that she thought we'd done something wrong and she was going to reprimand us. I thought she was going to tell us that something horrible had happened to Lyle and I had to look at him again to reassure myself. He was sleeping peacefully.
• Maria went on to tell us that Lyle had somehow been fed a small amount of breast milk from another breastfeeding mother whose child was on the ward for a hernia repair. She thought that it was about 5 ml of milk. Her inquiries had not clarified how this mix-up had occurred. In the NICU the protocol was that before feeding a baby stored milk one nurse would take the bottle to another nurse and have him or her verify that the name on the bottle was the right one. Only rarely have there been two breastfeeding mothers on the pediatric surgery ward and so this situation hadn't arisen before. Maria said that from then on two nurses had to examine the bottled milk and put their initials on it before feeding any baby. She then asked us to give permission to have some blood drawn from Lyle and tested for various viruses including hepatitis, CMV (cytomegalovirus), HTLV (human T-cell leukemia virus) and HIV (human immunodeficiency virus). These tests would give us a baseline of viral activity in Lyle's blood. It is unlikely that Lyle will have any such infections but performing the blood tests is standard when a mix-up like this occurs. We signed the consent form. At least these tests won't require another heel stick. Lyle's central line allows blood to be easily drawn.
• Shortly after Maria left Dr Mendoza came to visit us. He's the pediatrician currently on service. He also apologised for the breast milk problem. We took the opportunity to find out about some of Lyle's other issues. Dr M felt that the situation with the fluid behind Lyle's eardrums would probably resolve on it's own. He said that it was not uncommon in babies that have NG tubes. The NG tube runs near the Eustachian tube, which normally acts to equalise air pressure on either side of the eardrum. I guess the NG tube can irritate that area and effectively seal it off, preventing fluid from draining. As Lyle grows so will that Eustachian tube. If drainage continues to be a problem then inserting a tube through the eardrum would allow the fluid to escape. It is not, he felt, a particularly invasive procedure. He said he would try to have an ENT look at Lyle in the next week or so.
• We also asked him about the urinary reflux test. He said that would be done after Lyle's shunt has been internalised since he would have to be moved down to the radiology lab for it. I explained that we were hoping to take Lyle home on the 17th and he immediately said that the test could be performed as an outpatient and that they wouldn't keep Lyle in hospital any longer than necessary. A very perceptive man.
• Lyle was still sleeping at 6:00 when he is usually fed. Paloma and I debated waking him up but decided that if he was asleep then he was probably tired and needed his rest. Paloma fed him via his NG tube.
• Although Lyle continued to sleep he started fussing and thrashing around. We noticed that his heart rate was quite high and that he was breathing much faster than normal. We took turns eating our dinners and putting his pacifier back in his mouth when he spat it out. We mentioned the increased rates to his nurse and she took his temperature. It was around 38.3 C. Quite high for Lyle. She went off to page a doctor.
• It was probably around 7:30 when Lyle threw up again. I was in the bathroom at the time. Dr Mejia showed up then. He explained that the fever and the emesis could be a sign of another infection. The bad news is that if the infection is bacterial then Lyle could be in a lot of trouble. He is already on two of the most potent antibiotics available. Another bacterial infection could be hard to shake. Another ugly possibility is that the infection could be fungal. Lyle has, after all, had a history of candidemia after long courses of antibiotics. Dr Mejia didn't want to start a course of Amphotericin until there was some evidence to justify it. The side effects of Amphotericin justify its nickname: Ampho-terrible. Of course, the infection could also be viral. Perhaps something in his lungs or his intestines (gastroenteritis). The latter could certainly explain the episodes of vomiting.
• To say that this development was emotionally crushing would be to understate the case. We thought we were so close to taking him home. Almost any new infection will delay his homecoming to the indefinite future.
• Gracie, Lyle's night nurse, came to take blood for all the new tests. She was quite scathing of the need for the virus tests mentioned a few paragraphs ago. I agree. It doesn't seem fair to subject Lyle to more blood tests for someone else's mistake. I told her that I thought the person who made the mistake should be the one giving blood. Lyle is still a small baby. It's not like he has vast amounts of blood to spare.
• Dr Mejia told us that some preliminary results would be available by 11:00 or 11:30. We told Gracie that we would call around then to see what had been learnt. We headed home around 9:30. Lyle was sleeping peacefully. Gracie had to insert a catheter to collect a urine sample for testing. She said she would wait for him to wakeup before subjecting him to that particular trauma. She said that fathers seemed to react more to the thought of the catheter than mothers did. I can cope. I helped Dr Takahashi collect the urine sample from Lyle almost four weeks ago. It wasn't fun for either Lyle or me but we both survived.
• When I called around 11:20 Gracie said that she had changed Lyle's NG tube since it had somehow been blocked off (it probably got twisted when he vomited). He had kept his last meal down and his temperature was much lower. After some futzing around she managed to check the computer for results of Lyle's blood tests. They were all pretty much normal except that his white blood cell count was a bit lower than normal. This could mean that an infection has been brewing for a while. As I understand it (and please correct me if I'm wrong), at the start of an infection the body marshals it's forces and creates a lot of white blood cells to search out and destroy the infecting agent. Thus one of the early markers of infections is an elevated white blood cell count as was seen by the lab when we had Lyle tested last month. After the infection has been running for a while the white blood cells get used up in the fight and hence the count becomes lower than normal. It is, however, a bit early to draw any conclusions. There will be preliminary results from the blood cultures in 24 hours. More will be known then.

• Lyle was afebrile (don't you just love medical jargon? this means he had no fever) all day and has kept down all his feeds. He seemed much more his usual self when we arrived. The only change I noticed was that he slept more while we were there than he normally does. This may just mean that his sleep schedule has been shifted again. He no longer has to sleep with the lights on so there is a distinction between night and day but he still gets woken at all hours to have his vital signs monitored.
• No one seems quite certain what to make of yesterday's temperature spike and vomiting. The blood test results so far have been within normal ranges. We talked to Trish again after we got to Lyle's room. She had ordered yet another CAT scan. The results make re-installation of a shunt even more likely. His ventricles are enlarged. She thinks that his CSF output has dropped in part because the catheter has slipped out of the ideal position. The end of it may be partially closed by pressure from the surrounding grey matter. Trish thought that his fever yesterday might be due to a secondary CSF infection. Since the external drain is open to the skin there is a chance that normal skin bacteria can infect the CSF. I wanted to know how that was possible given the powerful antibiotics he was currently on. She said that some bacteria just need different antibiotics to control them. Any infection in the CSF must be eliminated before installing the VA shunt since it is going to be dumped straight into his bloodstream. If Lyle does have a secondary infection then he will probably need another course of a different antibiotic. Trish said that if needed, the next course would probably just be for a week. The plan is still to pull the external drain on Monday. Lyle will get yet another CAT scan on Tuesday. If he is infection free then the shunt will be placed on Wednesday. If he is not infection free then a new external drain will be placed on Wednesday. He will be watched very closely over the weekend.
• In the wake of yesterday's milk mix-up a new protocol has been implemented. Each bottle of Paloma's milk must be inspected by two nurses prior to thawing. Each nurse initials and dates the bottle. The empty bottle is then placed on a shelf in Lyle's room. We then handle the disposal. Since Paloma's milk production is increasing again we have decided to take the bottles home and re-use them. This should lessen our reliance on the hospital to provide us with new bottles.
• We had enormous success bottle-feeding Lyle today. He took about 30 ml (one ounce) from me and then another 13 ml (almost half an ounce) from Paloma. If he can do this consistently then we won't need the NG tube anymore. However, as I have noted on more than one occasion, he is not the most consistent of eaters. A good feed at 6:00 can be followed by a mediocre one at 9:00.
• Lyle is so much fun to watch. He smiles spontaneously now when he sees me looking at him. I don't think it is possible not to love him. All the nurses are as anxious for the drain to be removed as we are. Petie said that we shouldn't be surprised if we arrive at his bedside to find him gone. Of course, she said, his parents will have holding priority but we'll have to track him down first. It is hard for us not to be with him all the time but it's nice to know that there are good and kind people looking after him in our absence.
• We called Gracie again after returning home tonight to have her check for results from the blood cultures. So far, after 24 hours of culturing, nothing has grown out. The 48- and 72-hour results will be more telling.

• Paloma had her first spinning lesson at the Golden Fleece today. It was intensive. In two hours they covered spinning using a drop spindle plus some elementary spinning wheel techniques. I think she enjoyed it. She has a longer course coming up in April, two hours every Wednesday evening. By the time she's made it through that course she should be completely up to speed. She has some nice wool she hopes to spin and turn into a sweater or something along those lines for Lyle.
• I spent the time rearranging our photos of Lyle and placing them online with a new service. You can see March's photos here . I like this service better. They don't have arbitrary limits on the number of photos you can post and their way of arranging them seems pretty good to me. We used them for our Christmas cards this year and I've been contemplating the changeover for a while. Today I finally had time for the task.
• After a quick stop at Dave and Greg's to look at their model railroad (which is looking darn good) we arrived at the hospital just in time to give Lyle his six o'clock feeding. I still feel quite nervous about gavage feeding him. I worry that I'll give him too much and he'll vomit some more. At one point he started doing his tongue thing, which in the past has been a sign that his belly isn't comfortable. I gave him a break and then tried again.
• It was a very low key evening. Nothing much happened. We like it like that.

• Last November, Dave and Greg and Robert gave us a gift certificate for a little restaurant in Scotts Valley called Chez Elise. After much debate we finally decided to take advantage of it. We have a reservation for dinner this evening at 6:00. In light of that we decided to go up to the hospital in the morning and then leave early.
• We made it to Lyle's bedside around noon to find his feeding already in progress. I took over from the nursing assistant and finished pouring the milk down his NG tube. He slept through this particular procedure. In fact, he ended up sleeping for the next couple of hours. That was fine. It gave us a chance to read the Sunday paper and just relax a little.
• Beth, Lyle's nurse today, told us that his antibiotics were discontinued today. This was great news. It means that he is on track for the rest of the week. About mid-afternoon we were visited by Dr Chen from the Infectious Diseases team. She said that from their point of view Lye's fever and vomiting last week were a transient anomaly. All the cultures taken on Wednesday are still clean. Clinically, Lyle is doing great. He was smiling and kicking his legs in a happy fashion while Dr C was talking with us. I tell her that the lack of a culprit for last Wednesday still worries us. She say that were some infection brewing he would not look this good. She said that there are viruses that can attack and then be defeated in the space of 24 hours. Whatever it was, Lyle fought it off.
• We spent the rest of the afternoon playing with him. He is such a delight. He smiles and smiles and smiles. Uneventful days are our favourite.
• Just before 5:00 Lyle started fussing, the way he does when he's tired but doesn't quite want to give in and go to sleep. We gave him 10 ml of milk and he crashed. The timing couldn't have been better. To make it for our dinner reservation we had to leave at 5:00.
• Chez Elise is a bizarre little restaurant. It's in a shop front in a strip mall. They serve fancy French cuisine. Right next to it is one of those stereotypical Chinese restaurants. We had a Swiss fondue for two as an appetizer. Then Paloma had grilled salmon and I had Steak au Poivre (the menu was an odd mixture of English and French). I had a chocolate mousse and Paloma had crème brulée. It was an excellent dinner. Someday we will return. Here's hoping they survive. We were one of only two couples there this evening. Perhaps it was busier after we left

• Trish removed Lyle's external ventricular drain this morning. A sample of his cerebrospinal fluid was sent to the microbiology lab to check for any microorganisms that might be growing there. In addition, the section of the drain catheter in Lyle's brain was sent to the lab at the same time. The catheter is really the weak point in the link. Since it is open the skin at the point where it exits the scalp there is a chance that it could be a source for infection. The chance is minimised by tunneling the catheter under the skin for some distance before passing it through the hole in his skull and from there through his brain into his ventricle. And, yes, if you as a casual reader find this disturbing rest assured that we, his parents, find it even more so.
• The cultures grown from the CSF sample and the catheter tip will be checked continuously over the next two days. If anything grows out of them the surgery to place a new shunt can be stopped at any time. If anything does grow out Lyle will go into surgery as scheduled. Instead of a shunt he will get a new extra ventricular drain. Then it will be back on bed rest until the next infection has cleared.
• Trish said that there was a line of people waiting to hold Lyle as she was removing the drain. Everyone loves him. He has captured some hearts over the last month.
• When we got to his hospital room Lyle was propped up watching the television with great interest. Almost immediately we noticed that the signs warning against picking him up had been removed. As soon as Paloma had washed her hands Lyle was out of bed and snuggled into her arms. We spent the evening passing him back and forth.
• Shortly after we arrived Dr Bates came in responding to a call from Arlene, Lyle's day nurse. The dressing on his scalp was soaked with CSF and they were worried that the pressure in his skull was compromising the stitches that Trish had placed there this morning. Dr B thought he might have to put in another stitch. I told him that he made Lyle upset during the procedure then he would have to soothe him. He deferred that task to Arlene. I figure that if he's going to be a pediatric neurosurgeon then he should get used to dealing with babies. After peeling off the old dressing Dr B discovered that the incision site was actually looking quite good. There was no obvious fluid leaking from it. He decided to simply change the current dressing and check it again in an hour or so.
• Dr Bates and Dr Dembner returned an hour later and proclaimed the dressing dry. No further stitches were needed. Whew.
• Unfortunately, I was not feeling very well today. I was very tired and my joints ached. My best guess is that I was having a reaction (call it a hangover if you will... I only had one glass but this was after being abstinent for three or four months) to the wine I'd had with dinner Sunday night. While Paloma was feeding Lyle I soaked in the tub (Lyle's room has a full featured bathroom attached). That seemed to help.
• After my soak I held Lyle again for a while. He fell asleep in my arms. At which point Petie came in to check on us. When she discovered that I wasn't feeling well she practically snatched Lyle from my arms. Okay, I exaggerate somewhat. She made it very clear, however, that I was not to make Lyle sick. I agreed. We decided to leave early so that I could go to bed and get some much needed sleep. With luck I will feel better tomorrow and we can spend some more time holding the baby.
• Oddly enough, after a month of not being able to hold Lyle he feels much heavier to me than he did. I guess he has been growing. That's a good thing.

• When Paloma called the hospital this morning she was quickly passed along to Trish who was at Lyle's bedside. Lyle was showing signs overnight that he was being negatively affected by the buildup of pressure in his skull since the removal of his EVD. He was very irritable (I know this is kind of vague as a diagnostic criterion but it is quite noticeable in a generally good-natured baby like Lyle) and had vomited up three of his feeds. Trish decided that she was going to stick a needle through his fontanel and drain off some of the excess fluid. The other option would have been to perform the shunt operation right then but not enough time had passed to allow the cultures taken yesterday to be read with any accuracy. Operating today could mean reversing the operation in a few days time. Drawing off the fluid now would buy Lyle some time.
• We found Lyle in the arms of one of his nurses when we arrived. She was singing the song about the Itsy Bitsy Spider to him. She said he seemed to like it. He was certainly watching her with rapt attention. A new dressing on his covered the site where the needle had been inserted this morning.
• The nurses left us undisturbed almost all evening. We took turns holding the baby. Fed him when he was hungry, Changed his diaper. He didn't seem as happy to me today as he had done last weekend. I don't think he has been feeling very well. It seems pretty obvious that he does need some extra help with ventricular drainage. The general medical opinion has been leaning in this direction but I'm glad that they at least entertained the idea that he might be okay without the shunt.
• Mary brought in the consent form for us to sign. We agreed that it had been a long and difficult month. She said she didn't know how we'd survived it. I didn't have an answer for her at the time but on the way home I remembered having the same conversation with my mother. I think I said something like, "you do what you have to do." It hasn't been fun but there have been good people and light-hearted times to see us through. The memory of this hospital visit will dim with time as the memory of our time in the NICU has done. Lyle is such an odd mixture of fragile and tough. I don't think we will ever take his health for granted. Every time he throws up we will be wondering if it's just too much food or if something more serious is brewing.
• One of the residents on the anesthesiology team came by to discuss the procedure with us. He was alarmingly misinformed. So, he said, we're removing the external ventricular drain tomorrow. Uh, no, that's already been removed. Oh... okay, then we're putting in a ventriculoperitoneal shunt. No... it's a ventriculoatrial shunt. Well, we're just doing the anesthesia. The neurosurgeons will be performing the actual surgery. Yeah, right.
• We said goodbye to Petie tonight. She is taking an extended holiday from hospital life and will be traveling across the country in an RV with her significant other for the next three months. We're sorry to see her go. She has been a cheerful and efficient presence in Lyle's life over the past month. Oh, in case you're interested, Petie was born in Montreal and her full name is Pierrette. No-one here can pronounce her real name, hence the nickname.
• The film for the night was Dragonheart. I really like Dennis Quaid as an actor (The Big Easy being one of my favourite films) but he didn't seem quite right as a medieval knight. Still, the special effects were great (including some explosions when Draco the dragon sprayed fire from his nostrils!).

Morning...

• When I called at 7:30 this morning they had just taken Lyle down to the operating room.
• Paloma called at 10:30 and got to talk to Trish again. Lyle had just been taken to the recovery room. He was awake and hungry and was letting everyone know at the top of his lungs. Not surprising given that he was NPO after midnight. Trish said that the operation had gone extremely well. I think "excellent" was the word she used. However, Lyle will spend the night in the Pediatric Intensive Care Unit. The anesthesiologist was somewhat concerned about Lyle's blood pressure. He seems to be a bit anaemic. He will be on bed rest until tomorrow. Then they will probably move him back to 3E. The doctors want to see him eating well and not running a fever before sending him home. Perhaps by Saturday.

Evening...

• Lyle looks really good. He was happy to see us. He smiled and played with his hands and just seems much more comfortable than he was yesterday.
• He was put into the PICU because there was some concern about his red blood cell count (not his blood pressure as I reported earlier). He does look a little bit pale but not unusually so to me. Of course, the problem is that to test whether he is anaemic or not they have to draw blood and our little baby only has so much blood to spare. Too many blood tests can contribute to his anaemia.
• Some of the details of his care seem to have been lost in the transfer from the Pediatric Surgery Ward to the PICU. His nurse (unfortunately I didn't catch her name) didn't seem to be aware of his feeding schedule or even that he had frozen breast milk upstairs (the PICU is on the second floor of the hospital, he was on the third floor up 'til now). She had been feeding him apple juice. It was his first exposure to juice. He really liked it. We decided not to push him for his six o'clock feeding and let him coast along with the juice. I went upstairs and grabbed a few bottles of milk for later.
• Lyle's nurse said that he was behaving just like a three month old baby. He has discovered his hands and loves to play with them. It was good to hear this from someone who knows children. Lyle's adjusted age is about three months so it sounds like all his medical challenges haven't delayed his development. We will know more when he attends the High Risk Infant Development clinic in April.
• Around 7:00 Lyle was moved from his private room into a larger room with two other babies. They had a new admission who needed to be kept in isolation. After the move Paloma and I went up to the roof top garden for the first time this visit. It was a beautiful night. Cool but not cold. It was actually a pleasant change from the somewhat stale air in the PICU.
• Lyle's night nurse was Clarissa. She was quite amused to learn that my niece's name is Clarissa too.
• We stayed in the PICU until after Lyle's 9:00 feeding (he took about 20 cc's by mouth and since he didn't have an NG tube in place that was all he got) and then headed home. It is such a relief to see him looking so much better. Given that he had an operation that lasted for an hour and a half this morning he could've been totally crabby. I mentioned the improvement to the neurosurgeons when they came by to look at him and they just nodded sagely. Of course, they said, he was suffering from the increased pressure in his skull yesterday.

• Lyle is still in the PICU. Not because he's doing poorly. It's just that all the beds upstairs are full. I went up to get him some more frozen milk and for the first time that I can recall every slot on the whiteboard had a name next to it. The nurses there would love to have him back but there's no telling when that will happen. I said they had to start kicking people out. They smiled politely at my attempted humour.
• The PICU is a much less comfortable environment for the parents. The emphasis is more on acute care. It's kind of hard for us to see the really sick babies. We heard one nurse say that the baby in the next bed had thrown up a clot of blood... again. Paloma put her hands over Lyle's ears. We don't want him getting any bad ideas.
• We arrived at his bedside just after five o'clock. As we were entering the PICU we met Drs Dembner and Bates exiting. They said he looks good. The plan is still to observe him for another day and then send him home on Saturday. Of course, they aren't the final authorities. They are mere residents, taking notes and then reporting back to their master. At least their understanding of the plan agrees with ours.
• Lyle wasn't in a very good mood. His nurse said that he had just been about to fall asleep when the neurosurgeons arrived and woke him up with their prodding and poking (unfortunately the check for proper neurological function involves flashlights and eyes among other things, it's just not possible to sleep through it). Then, of course, there we were demanding his attention. We tried feeding him but he was just too out of sorts to take much by mouth. He definitely didn't seem as happy as he did yesterday. His nurse said that the day after surgery is usually the worst. The full effects of the insult are just starting to be felt and the body is marshalling its resources to deal with it. She thought he'd feel better tomorrow.
• He is getting Tylenol every four hours to help control whatever pain he's feeling. You have to figure that he has the world's worst headache just now. Is Tylenol really enough to deal with it? We have to hope so. We also have to hope that the Tylenol isn't masking any fever that happens to be brewing.
• We had our dinner in the parent lounge on the third floor this evening. The second floor seems to be overflowing with family members waiting to visit the sick. The third floor is much calmer. I guess the advantage of having been at Packard Children's Hospital so much is that we now know a lot of the good hiding places. For example, the access code for the rooftop garden (1092391) is burnt into my brain. I hope we get the chance to forget it.
• It just occurred to me that you, my faithful reader, might be wondering why we left Lyle during dinner. The PICU, like the NICU, has a shift change between 7:00 and 7:30 and for patient confidentiality reasons they ask all parents and visitors to leave during that time. 3E has a shift change at the same time but the nurses gave their reports elsewhere. In the PICU the report happens at the bedside. We really, really wish that Lyle was back upstairs. The atmosphere there is much more congenial to parents.
• Lyle was sleeping when we returned from dinner. We watched him for a while and then decided to leave. We had a reservation for a hot tub at Well Within for 9:30 and had to leave before 8:30 in order to make it there on time. Unfortunately, he woke up and started fussing as we were packing up to go. A quick change of position settled him enough that we could sneak away without feeling too guilty. The hot tub soak was much needed. It finally feels like we can let go of some of the tension we've been carrying over the last month.

• I called the PICU this morning to talk with Lyle's nurse only to be informed that his name wasn't on the board. He was moved during the night but the receptionist didn't know where he'd gone. She redirected my call to 3E (his previous ward). Nope, sorry, he's not here. Try 3N (this is the wing which usually holds transplant patients). Sure enough, he was there. He'd been moved shortly before midnight when they had needed the extra space in the PICU.
• Lyle is looking much better today. He seemed a bit uncomfortable yesterday. I imagine that he will feel better every day from now on. His new room is shared with another baby. Fortunately, the other baby was in the process of being discharged. We asked to speak with one of his doctors so we could get started on the discharge procedure. Later, much later, his nurse returned to tell us that Dr Bates (the resident from neurosurgery) wouldn't be able to make it by to see us since they were processing a number of new admits but he told the nurse to tell us that we were on schedule for discharge tomorrow.
• I think it was disappointing for the 3E nurses that Lyle had gone elsewhere. As I went down to the cafeteria to get a sandwich for dinner (Aside: if you have been following along you will have noted that Paloma has been consistently getting the Breast Feeding Mother's meal. This meal even followed her from 3E down to the PICU so we had every expectation that it would follow her to 3N. Bad assumption. No doughnut. Our practice was to pack a dinner for me and count on the BFM meal for Paloma. Since there was no BFM meal I had to make a quick trip to the cafeteria so that there would be enough for both of us for dinner.) I met Gracie. She told me that they had been holding a room open for Lyle but that unbeknownst to them the nursing supervisor had given his room away. Gracie was bummed. She wanted to be looking after Lyle. She didn't think that the nurses in another wing could do as good a job. They're not as attached to him as the 3E nurses are. She had a little stuffed rabbit for him.
• By the time I'd returned from the cafeteria the other family was gone. We watched TV for a while and then I read some more to Paloma as she played with Lyle. We're finding The Dark is Rising to be a bit slower going than Over Sea, Under Stone. I'm not sure why. Perhaps because the fantasy elements are more overt. I remember being much more impressed when I first read the book some vast number of years ago.
• Another baby was moved into Lyle's room around 8:00. It's a drag sharing a room. We didn't realise how good we had it in 3E until it was taken away from us.
• Give that Lyle is going home tomorrow and given that he still has the Hickmann catheter in place and given that we're going to have to look after it when he gets home I decided that we had better take the incentive and get his nurse to show us how to look after it. Pam, one of his nurses on 3E had already shown us the cleaning procedure once so we got Nina, his night nurse, to supervise while we changed the dressing. It was very traumatic for Lyle. Not, I think, because it hurt but because we had to wake him up and then hold him down.
• The procedure is pretty straightforward but you have to be very careful to be as clean as possible. The catheter goes through his skin and so is a nice entry point for opportunistic infections. The first step is to thoroughly wash your hands. Then the idea is that you peel off the old dressing and remove the old bio-patch (a sterile fabric disc impregnated with an antibiotic agent). The area around the catheter is then cleaned with three swabs impregnated with Betadine. The Betadine is allowed to dry before a new bio-patch is placed around the catheter and snugged up to the skin. Finally the catheter is looped and a new transparent dressing is put over the whole area. Lyle screamed the whole time. Paloma had to hold his hands so that he wouldn't touch the area while the dressing was off. I think the Betadine was cold to his skin as well. It was late and he was tired and it was only once we were done that he would allow himself to be consoled. I felt bad for putting him through it but we really have to know how to do this once he gets home. We will have to change the dressing once a week.
• Unexpectedly, Gracie showed up just before we left. She had been asked to insert an IV catheter in the other baby. At first they told her that the catheter was for Lyle! She told them that Lyle didn't need an IV catheter. How do you know? they asked. I know, she said. Thank god she was on the ball. It would have been horrible to come in on Saturday and find our little boy with yet another wound. The central line is supposed to obviate the need for such things.
• Gracie said that she and some of the other nurses were going to "check Lyle out" later. I thought that meant they would come over and look at him and play with him. It turns out that they were thinking of checking him out like a book from the library. We later heard that around three in the morning, when all was quiet in 3E, they went over to 3N, told his nurse where he would be and then took him back to 3E so they could hold him, play with him and feed him. When they fed him they called his nurse to tell her how much he'd taken by mouth. When they changed his diaper they weighed it and called his nurse to tell her what his output had been. I know it sounds kind of weird but it's actually quite reassuring to think that Lyle has people at the hospital looking out for him just because they want to.

• I called the hospital this morning and reminded them that we would be coming in later today to free Lyle from captivity. Laura, his nurse today, seemed amused by my choice of words. After running all our errands (today was a massage day) we planned to be there mid-afternoon. I said that I hoped we'd find everything in order for his departure.
• We made it to the hospital around three o'clock. Lyle's spot in 3N was empty! It was most disconcerting. I remember seeing parents walking aimlessly through the NICU looking for a baby who had been moved in their absence. My baby couldn't have left without us, could he? He isn't even walking yet. The woman cleaning the spot where Lyle's bed had been said she thought he'd been moved back to 3E. Sure enough, he was in 3E. One of the nursing assistants was holding him at the front desk and trying to feed him. He was not too happy. We could hear him crying as we walked down the hall. Denise, his nurse in this ward, looked stunned when we told her we were there to take him home. But, why was he transferred if he was going to be discharged? Uh oh.
• This was the beginning of a long and frustrating afternoon.
• Denise called Dr Dembner, the neurosurgeon who had written the orders for the transfer to find out what was going on. It turns out that he hadn't wanted to send Lyle home with the NG tube in place. I mean, come on, if he'd read any of Lyle's history he would have known that we'd taken him home with an NG tube in January and that we were very comfortable managing it. Denise got him on the phone and let me talk to him. I managed to convince him that we were past experts at dealing with the NG tube.
• Unfortunately, things went downhill from here. No preparations had been made for discharge. It turns out that caring for the Hickmann catheter is more involved than we had been led to believe. Not only does the dressing need to be changed once a week but the catheter itself has to be flushed and locked with Heparin (and anticoagulant) once a day. No prescription had been written for the Heparin. No supplies had been set-aside for us to use at home and, apparently, none could just be given to us without a doctor's written order. In addition, a weekly home nursing visit has to be setup since they want someone to look at the Hickmann on a regular basis, just to make sure that it's still usable. Denise was very apologetic but she said that she couldn't send Lyle home when none of the more basic preparations were in place. She convinced us to wait until tomorrow when more preparations were possible. She ended up fighting a little battle with Dr Dembner who insisted, evidence to the contrary, that all the appropriate orders had been written. She was great. She managed to get him to backpedal and, essentially, admit that he was wrong about the discharge orders. She brought her nursing supervisor into the fray and had her file an incident report since this is the kind of mix-up that can leave a bad impression on the parents. We assured her that we didn't blame her at all and that we wanted everything in place for a successful discharge too.
• We were totally unprepared for spending yet another evening in hospital. Paloma had left her breast pump at home. We hadn't brought any dinner at all. Denise was great. She leapt into action and procured one of the hospital pumps and a pumping kit for us. She got a BFM meal sent up to Lyle's room.
• Dr Dembner actually come by to see us later that evening which I thought was pretty brave given that he was the reason we were spending. Still, that being said, his apology was rather graceless. He said something along the lines of: "so Lyle's going to spend another night here but that's okay". As I said to Paloma after he left, at least it was a screw up and not some new medical problem that was keeping Lyle in hospital. Hmm... if our HMO heard of this would they withhold payment for the last day?
• Personally, I think Dr D needs to develop some empathy. If it was his child I'm sure he would not be so blasé about an extra day in hospital. Without empathy he will just be the goofy doctor that no one wants to have looking after their children.
• We took Lyle down to the NICU in the late afternoon to see all the nurses there. They were totally excited to see him. We had the receptionist announce that "Baby Lyle Vachon is at the front desk". I think they really feel a sense of accomplishment when a formerly sick baby is brought back to see them. I keep telling them that they are part of our family now and that we will never forget them. Paloma held Lyle while half a dozen nurses clustered around him exclaiming over how big he's gotten and how healthy he looks. He didn't quite know what to make all the attention. He kept twisting around in Paloma's arms and looking up at her for reassurance.
• Afterwards we went up on the roof and walked around in the sunshine. Once we had resigned ourselves to spending another evening at Packard Children's Hospital it was actually quite pleasant. The weather was beautiful and warm. Very spring-like. We hung out in his room with the door closed and entertained visitors. I think the 3E nurses were a bit worried that we were mad at them because they pretty much left us alone all evening where usually they pop in at regular intervals to check Lyle's vital signs. He's clearly doing well and we were trusted to look after him (nice of them, wasn't it?).
• On my way back from the cafeteria I saw a woman with a baby in a snuggle pack pulling an oxygen tank. Prompted by my memories of doing the same with Lyle I stopped to talk with her. Her daughter, Tanya, was born at the end of October of last year (at 24 weeks gestational age) and she had been there ever since. We compared notes. Tanya has gone through most of the same things as Lyle. Right now she was being kept in hospital while her ROP (stage 3 resolving) slowly improved. I told he that we had taken Lyle home on oxygen while he still had ROP and she was very interested. I encouraged her to talk with her doctors to see if she could get discharged. Promise them anything, I said. Tanya just needs a weekly eye exam. Is a ten-minute eye exam once a week a good reason to keep a baby in hospital? We didn't think so for Lyle. Ariana, Tanya's mother, was very encouraged. I think she has been somewhat beaten down by the hospital experience. She has just been blindly following the doctor's advice. We were very lucky to have doctors who really thought deeply about Lyle's care plan and thought about it in the context of his family. In retrospect I have to be very grateful that Lyle's doctors trusted us to do what was right for Lyle. I think we have lived up to that trust.
• Karen, his NICU primary, came up to visit us later in the evening. She has been a faithful friend. First when Lyle was in the NICU and then again during his current hospitalisation. She had pictures of her sons from their recent visit to Disneyland. Stephen, her youngest, wants to be Hook (from the Disney movie of the same name). He has the outfit, prosthetic hook and all. He even wore the outfit for the family's Christmas photo. He was all agog to see the "real" Hook roaming the streets of Disneyland. We now have a picture of Stephen with Hook, a rapt expression on his face. I can hardly wait until Lyle is old enough to have those kinds of enthusiasms.
• We headed home around 10:00. My guess is that after today's screw up they are going to bend over backwards to make sure we can take Lyle home tomorrow. But please, stay tuned for further developments.

• The preparations for Lyle's departure were much further advanced when I called 3E this morning. Pam was totally on top of it. She was lurking in the halls waiting for the neurosurgery team to appear so she could have them write up the discharge orders and prescriptions. I told her that we would be there around 1:00. We had a leisurely breakfast (waffles, turkey bacon and tea if you're at all interested), watched some TV and read some of the Sunday paper (I head for the comics first thing).
• Pam was ready for us when we finally got to Lyle's room (closer to 1:30 than 1:00 if you must know, sometimes it's hard getting out the door... oh hey, wait a minute, I just realised it wasn't our fault, my Mom called to find out how things were going just as we were heading out the door... whew, I wouldn't want you thinking we were bad parents or anything like that). She had set aside enough supplies for a week of dressing changes and catheter flushing. The discharge papers and prescriptions had been written. Then it was time to train us. I told her that I had changed the dressing on Friday and so we didn't need to do it again so soon. She very gently chewed me out for not marking the date of the change on the dressing. I promised that I'd write it on the calendar when we got home.
• It turns out that not only do we have to flush the catheter daily but twice a week we have to change the cap on it. Since the procedure is substantially the same for both procedures we decided to change the cap today (it's the marginally more complicated of the two). The first step is to clean the top of the Heparin bottle with an alcohol swab (cleanliness is extremely important since this catheter goes into Lyle's jugular vein and from their straight into his heart, we would not want to stick a dirty needle into this catheter). Drawing up the Heparin is pretty cool. Fill the syringe with as much air as you want fluid. In this case 3 cc's. Insert the needle through the rubber cap on the Heparin bottle and squeeze the air into it. Flip the bottle over so that the fluid covers the needle. The air pressure in the bottle forces the Heparin into the syringe. You don't really want to inject any air bubbles into the catheter so you have to flick the syringe with your finger a few times to dislodge them. It's cool. It feels just like being in one of those medical shows. The next step is to prepare the new cap. It is sealed with an impermeable barrier through which a needle can pass but fluid cannot. Stick the needle through the barrier and then press the syringe enough to fill the cap with Heparin (this also prevents air bubbles in the catheter). Remove the tape holding the old cap in place and clean the area with another alcohol swab. Pull out the old cap and insert the new one. The next step is a bit tricky. It can be done by one person but is much easier with two. The catheter has a plastic clip on it that has to be opened. Then you pulse in the Heparin with a gentle press and release of the syringe. Finally, when all the Heparin is almost in the catheter, remove the syringe and clip it shut. It sounds a bit complicated but really isn't too bad. Lyle didn't even fuss during the procedure. Not at all like when we changed the dressing Friday night.
• We asked to speak with one of the doctors on the general pediatric team to tidy up some of the loose ends from our stay. To our delight the on-call doctor was Swati Agarwal. She was able to tell us that the test for urinary reflux had actually been done. It happened on Monday or Tuesday of last week. After the EVD had been removed but before the shunt was inserted. The test result was negative. No urine was making its way from Lyle's bladder back to his kidneys. In one sense this is good. In another it's not. This negative means we still have no idea what the source of this infection was. The doctors felt that there was no need to test Lyle for a leaky intestine (I guess this is because he's not showing any signs of an infection in his belly which he would if junk from his intestine was collecting in his peritoneum). The results of the blood tests made after the breast milk mix-up were also all negative. Not that we were expecting otherwise but it is good to have that reassurance. Dr A was also able to confirm that although ordered a follow-up ear test was not done. Neither was Lyle examined by a pediatric Ear, Nose and Throat specialist. We were somewhat disappointed by this but at least we know what we have to do once we get him home. We will also have to schedule Lyle for his next set of vaccinations.
• Before she left to take care of other business Dr Agarwal got her chance to hold Lyle. Unfortunately he was being very fussy. I think he was hungry and the only milk available was frozen. Dr A was great during our stay. Nothing slipped through the cracks during her rotation. Things seemed a bit more slipshod after she went off service. We wish her well during her residency.
• We had to sign a bit of paperwork to indicate that Pam had taught us the stuff we needed to know and then we were free to go. We packed up all Lyle's junk and carted it and him down to the car. It was strangely anticlimactic. We just said goodbye and walked out the door. Tomorrow we need to talk to the discharge planner to make sure we get all the supplies we need but for now we're set.
• The drive home went well. Paloma sat in the back with Lyle. I think they both napped (please don't tell her I said this).
• Our friend Denise came over and brought us a green dinner (in honour of St Patrick's day). She sat and held Lyle. We all agreed that he was a really good baby. He's not afraid of strangers. He loves to be cuddled. When something is wrong he lets us know. Fix it and he's happy again. Lyle entertained us by seeing how much of his hands he could shove into his mouth and smiling in a most wanton and unprovoked manner. There's something especially pleasing about a baby's unforced smile. It both delights and expresses delight.

• Lyle slept in a bassinet in our room last night. I couldn't get to sleep. I kept wanting to get up and shine a flashlight in his face to make sure that he was still breathing. I lay in bed listening for any sounds that he might make. Of course he managed just fine without my assistance. Apparently he woke Paloma once with a demand for food. I must've been sleeping at that point since I have no recollection of it.
• Then it was back to work for me. No month off to be at home with Paloma and Lyle this time. We're looking forward to being a family again. We will share Lyle with whomever we have to but, for the most part, I think we will be pretty selfish.
• I will continue to update this site with news as anything interesting occurs. Probably not on a daily basis however. I will also continue to post pictures documenting Lyle as he grows and changes. Thank-you for following Lyle's story thus far. There is much more to come.

• Sandy, one of the home care nurses, came by to visit Paloma and Lyle yesterday morning. She brought more Hickmann care materials for us. Unfortunately, they are quite different than the supplies we were trained on. The good news is that this new system is actually much easier. Less messing around with needles. All the parts screw together so there's even less chance of sticking a stray needle into one's self. The original system used blunt needles. Sandy trained Paloma and then this morning Paloma trained me. I want to photograph the process. Maybe when we flush his line tomorrow.

• Not only is the flushing process different with the supplies Sandy brought but so is the exit site care. Today Therese, another of the visiting nurses, came to make sure that we were up for this new challenge. Paloma didn't want to be put on the spot so she made me change the dressing. Therese brought a nurse trainee with her. Performing is hard, even in front of a reasonably sympathetic audience and it was even harder with a brand new person watching. I'd already changed Lyle's dressing once and the new process is not that different. The supplies are all in a sterile kit. The big difference is that there are two sets of swabs. One set that are just alcohol and the other that are just Betadine. The supplies we got from the hospital combine the alcohol and the Betadine.
• The hardest part was peeling off the old dressing. The bio-patch (an cotton disk impregnated with an antibiotic agent) was so thoroughly stuck to the Tagaderm (a transparent, breathable wound dressing which allows you to see if the exit site has become infected) that I was afraid to pull it off for fear of pulling out the IV catheter. The bio-patch has a slot in it so that it can be wrapped around the catheter. It is, however, a big mistake to do so. Therese suggested that we just place the bio-patch on top of the catheter rather than threading it through. That will make removing the dressing much easier next time.
• I was sweating bullets by this time. Therese made me wear a breathing mask. Those things are really uncomfortable. My breath was directed up by the mask and that made my glasses steam up. I guess the mask is a good idea. While removing the old dressing I was hunched over Lyle and essentially breathing straight onto the wound. Fortunately, once the Tagaderm had been removed I could take the mask off. Whew.
• The rest was much easier. Lyle didn't scream with displeasure as he had the last time. I think he was unhappy then because we woke him up to subject him to the procedure. This time he was already awake and in a good mood. That made it much easier. He tolerated the cleansing of the exit site very well. I imagine the alcohol in the swabs feels pretty cold but that didn't seem to bother him. It was only right at the end when I was trying to tape down the new Tagaderm that he started fussing. Therese had to help me finish up. The entire process goes much better with an extra set of hands. I think it was the length of time he was objecting to. If I'd gone faster I think he'd have been happier. I will test this theory out next time.
• This certainly isn't normal parenting but getting it right does a lot for your confidence. If we can handle this kind of thing then how hard can the rest of child-rearing be? Yeah, okay, don't answer that.

• Paloma photographed me flushing Lyle's Hickmann this morning. You can see the entire photographic essay in the March photos .

• We took Lyle in for another dose of the Synagis vaccine. This should protect him from RSV through the first week of May. He was very good. We got him to the clinic around 10:30 by which time he was feeling a bit sleepy. That changed when Dana stuck the needle into his leg. Sadly for Lyle his central line was no help in this situation. The vaccine formulation is intramuscular rather than intravenous. Still, he recovered quickly. I picked him up and rocked him a bit and he just fell asleep. If it were me I'd be faking a limp all day just so that everyone would know that I'd suffered a stick. Lyle doesn't stoop to such feeble contrivances. He doesn't need your pity!!

• We took Lyle back to LPCH this afternoon for a check up with his neurosurgeon. Trish was there too. She was really happy to see how good Lyle looked. He was his usual alert and happy self for her.
• The current plan is to bring Lyle back in three weeks for another checkup at which point he will probably get a chest x-ray. This will be used to make sure that both his Hickmann catheter and his shunt catheter are still placed correctly. Then, if he is still infection free, he will be scheduled to have the Hickmann removed. Probably a week after this next appointment. The thing is that keeping the Hickmann in place is always subject to cost-benefit analysis. For the first month after surgery it makes sense to keep the port there since if he gets sick it will allow medications to be easily administered. The longer the Hickmann stays in, however, the more chance there is of it becoming infected and seeding another infection in his cerebrospinal fluid (both catheters drain into his heart and so there is a very fast route for an infection to move from the Hickmann to the brain). The surgeons who inserted the Hickmann will be the ones to remove it but the operation is very fast and simple. It can be done as an outpatient.
• Part of the plan for this visit was to remove the stitches from Lyle's surgery. But Paloma had other plans. She remembered the stress from last time of holding Lyle still while the stitches were removed. Every time the doctor got the scissors close to Lyle's head he jerked away. We thought for sure he would stab him with them. Paloma decided that it would be easier for her to remove the stitches little by little when Lyle was asleep. So that's what she's been doing over the last couple of days. We had to confess, somewhat sheepishly, that Lyle didn't need Trish to remove the stitches since they were already gone. Dr Huhn said, in a near approach to humour, "not all out parents remove stitches you know." Maybe they should never have trained us to insert NG tubes or flush Hickmann catheters. The medical mystique has been lost. More often than not now we say, "hey, wait a minute... what's the big deal? I could do that."
• Afterwards we took Lyle up to the NICU for a visit. Not many nurses who we knew were there. Those that we saw were all amazed at how big he has gotten. We made a quick visit to 3E as well. The nurses there were amazed to see how well Lyle is eating these days. They remembered the start of his last stay when he would take less than 10 cc's by mouth. Now he will routinely take 40 cc's or more without balking.

• Lyle's NG tube was accidently removed today. The damned thing has always been a problem. The tube is probably three feet long of which perhaps two feet are left dangling after the appropriate amount has been inserted into Lyle's stomach through his nose. (And you can believe me when I tell you that he does not enjoy having it put into him... mercifully his gag reflex is still undeveloped.) I'm always catching the end of the tube on something or other. In the event it was Paloma who had the dubious pleasure of extracting the tube. Lyle was sitting beside her in the chair and I guess the end of the tube got caught in her clothing. She got up to grab a wipe cloth and pulled the tube out. Poor Lyle. For a brief moment he was stunned. He didn't quite know what to say. Then he decided that crying was the best response.
• Paloma and I had been talking about trying Lyle without the NG tube for quite a while so we decided that this was as good an opportunity as any. Paloma told him that if he ate well then he wouldn't have to have the tube back and (big bonus) he wouldn't have to wear the gloves any more. They were really there just to keep him from pulling out the tube on his own. I think he found them somewhat frustrating since he really likes sucking on his hands and I'm sure the experience isn't nearly as pleasurable with gloves.
• We will keep track of his eating habits over the next few days and see if he will eat enough to thrive. It would be very sad to have him lose weight. Of course we can use the NG tube if we have to. We are comfortable dealing with it. If he doesn't eat well we can fix the problem.

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