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SUNDAY, 12/15/02

(Night) Stevie's scheduled to go home tomorrow. I never count on these schedules... see below if you can't understand why... but it sounds legitimate, as always, barring complications. Had a great afternoon with him. Climbed into his bed with him, which he loved. Held him on my chest -- hadn't been able to do that due to all the gizmos he was previously connected to -- another thing he loves. Gave him lots of back rubs and massaged all his weakened limbs. He seemed appreciative, as much as one can surmise, anyway. Through all this he remains so amazingly sweet. His in quite a bit of pain from the teeth and likely has a very, very sore throat from the month of intubation, but still always does his best to offer everyone big, welcoming smiles when he sees them. I have much to learn from this kiddo.

(Morning) Stevie's not going to get to go home today. I'll go spend some time with him this afternoon and evening -- will give him a long back rub and try to keep him occupied. The nurses are having difficulty keeping him in his bed as he wants to crawl out. Don't understand the holdup on release.

SATURDAY, 12/14/02

(Early evening) Sat with Stevie most of the afternoon. He was alert and very bored. I tried to entertain him as best I could. I rubbed his back which, from his reaction, was oh-so sore after laying on it for 40 days now. Held him sitting upright for a bit (he can't sit yet, but is able to support his head fairly well) and he garnered great joy from being able to see what was around him in the open ward he is on. Was unable to get an answer on whether or not he'll be released tomorrow.

(Morning) Am hopeful that Stevie will go home tomorrow as there is really no reason for him to be occupying an expensive PCU bed at this point. The dental surgery has been put off, perhaps a month, maybe two, to give Stevie more time to recover from his recent trauma from intubation. He's battling a skin infection (probably fungal) that has recently spread in startling fashion and causing him to lose big chunks of his hair. This will require two months of treatment on an oral medication, but is a small thing in the long haul. Stevie was very alert last night as he's completely off Ativan and Methadone, and was restless. He didn't seem to recognize me for about ten minutes, but then something clicked and he was all grins. He's moving about (limbs anyway) pretty good all things considered, but will no doubt require a lengthy rehabilitation before he attempts to walk again.

THURSDAY, 12/12/02

Its' one of those super rainy, gray days in Houston where it just pours and pours. Some streets are flooding -- particularly in the Medical Center area -- and it just wasn't possible given time constraints for me to get to TCH this noon. Really wanted to be there over lunch time as Stevie is so alert now, and I'm waiting for a determination on scheduling of the dental surgery. Will make it over there this evening, one way or another. He was restful last night, although trying to pull of his BiPap mask in his sleep. As of 10PM at least, they were floating him on room air. That's the first time they haven't had to add oxygen shortly after putting him on BiPap. Doubt he made it through the night without some support, but this marks more progress.

WEDNESDAY, 12/11/02

37th day of hospitalization this time. Apparently they are now looking at the issue of his teeth and may perform his badly needed, inpatient dental surgery on Friday....as long as he's hospitalized anyway. Gosh, why didn't I think of that? Frustrating, as they just now seem to be coming around to the idea we've voiced for some time: that his decaying teeth are a dangerous source of infection in a kid so susceptible to problems. Anyway, they waited until he was almost out of there before deciding to even consider action on that front, adding days to his stay that I was not now mentally counting on. At this point, every extra day is a lot. It's like being underwater and desperately needing a breath. Every time you think you're about to break through the surface, though, something stops you and pushes you back down. So, target exit day now, barring complications, Monday or Tuesday of next week?

TUESDAY, 12/10/02

Having some very minor oxygen issues, so minor that, at times, Stevie does fine on room air. He's got a way to go with some of his medication weaning, but much of that can be done at home -- and that's where they're talking about sending him. I would guess he'll get out tomorrow or Thursday barring any setbacks. He's alert and very much himself -- and very upset with his restraints. Unfortunately, he'd rip out his I.V. and pull off his BiPap in about two seconds, so they are necessary. Don't have a gauge on how weak he is or if there has been any further deterioration in his gross or fine motor skills. The more ongoing concerns are twofold: how many more of these bouts can Stevie endure, and how close are we now, following this episode, to his lifetime dollar cap on his health insurance.

SUNDAY, 12/8/02

Stevie much more alert today. Watching cartoons a little and he recognized me and smiled. He's far enough along in the weaning of sedatives and steroids (actually a slower wean than the sedation) so that it's now just a question of if he gets by without withdrawal symptoms -- and, of course, if his respiratory status continues on an upward track. Don't want to start prematurely saying/thinking that he'll be home soon, but that could be the case if all goes well.

SATURDAY, 12/7/02

Stevie doing o.k. They dropped the Ativan to 3ml every 4 hours. That seems like a huge and sudden reduction to me, 60ml a day to 18ml, so I hope they know what they're doing. I've seen the results of Ativan withdrawal on him before and it wasn't pretty;: he landed back in ICU with really terrible seizures. Due to less sedation, he was quite awake last night and none-too-happy about having a BiPap on and that his hands are restrained to keep him from pulling it off. I would be none-too-happy myself, were I in his shoes -- although I'd gladly trade places with him if I could. Tough to leave him again last night, but going over to see him shortly. Less than 20 days before Christmas? When did that happen?

FRIDAY, 12/6/02

(Noon) Stevie's been moved to PCU (Progressive Care). He's doing extremely well and is awake and moving his limbs and looking about. He's still very "doped up," so he doesn't really focus or acknowledge it if he recognizes anyone. He's getting 5ml of Ativan every two hours, plus methadone twice a day. 60ml of Ativan a day, by the way, is an incredible amount for a 50lb kid -- such an amount would likely knock a water buffalo out cold. The methadone has to be weaned first as the benzodiazepines, such as Ativan help buffer the symptoms of narcotic withdrawal. He's regularly on Clorazepam, also a benzodiazepine, so he'll have an additional buffer from that. An incredible optimism and joy soars at times like this -- then is abruptly yanked to the ground by the memories and knowledge of how quickly things can change with Stevie -- and that we do not yet know what his new baseline will be once he fully recovers from this bout. I've learned to very much just enjoy these upward days, but not put myself in an emotional position to be utterly crushed if I walk in this afternoon and find he's suddenly back in serious danger. It's happened too often before.

The new group of interns apparently started in PCU on Wednesday, vs. Monday in PICU. I generally really like the interns, as they are usually still receptive to the idea that perhaps the parents have some valuable knowledge of their child's condition. The best and brightest, of course, retain this important quality throughout their careers and become the ones who, in my experience, have offered the most insightful care. Those that, at some point, determine their general knowledge and experience supersedes all else are a mixed lot. Some of this latter group are indeed brilliant, intuitive and superb caregivers; I've found others to be potentially dangerous in their determination to apply medicine "by the book." Unfortunately, some children need a label that says "Warning: Standard Manuals Do Not Apply." I had to again inform the PCU nurses that Stevie can have nothing by mouth. I guess we'll need to tattoo that on his head.

THURSDAY, 12/5/02

Successful extubation yesterday afternoon with much less unpleasantness than usual. Stevie did very well in terms of 02 sats and ease of breathing. Only one scary period after he had a blatantly obvious, 3-minute seizure that his nurse refused to acknowledge. His 02 fell rapidly and the resident and respiratory therapist had to be called. They got him stabilized after a time with an increase in oxygen and by changing from nasal tube to a mask. I really dislike this particular nurse; she scarcely speaks English -- the latter way too common thanks to a shortage of qualified folks in that field. Spent the evening listening to her, with what little vocabulary is at her disposal, berate our culture as compared to that of her native China. Told the doctors that she had ignored his seizure -- she'd insisted to me that he was just cold and shivering -- and to my surprise, they seem surprised. They began to talk to the nurse who was nearest us (not Stevie's) assuming she was handling him. I pointed out the correct nurse, and the doctors in unison said "oh" in a weary sort of way that said it all. They gave her a stern warning to call them immediately if I said he was having a seizure or he so much as hiccupped. The general staff has been extremely good this time around about the seizure issues. That should be our last night with this particular nurse.

Also was shocked to find the nurse readying to give him ice-chips in preparation for oral liquids. For crying out loud... did no-one question why he has a g-tube??? He can't swallow properly and would immediately choke and aspirate the liquids, likely starting the whole respiratory crisis that got us here today all over again. In any event, made that point both loud and clear. There's a chance Stevie could be moved from intensive care to progressive care within a day or two. This is quite positive, but will entail us having to have a family member or designee with him around the clock, a bit of a trick as we all have jobs. Slept at TCH last night; Stevie looked great this morning and a great nurse was on shift. Went straight to work from the hospital looking much like a hobo with surprisingly good taste in neckties and footwear, and am now home at noon for a shower and shave.

WEDNESDAY, 12/4/02

Extubation planned today. I saw Stevie briefly this morning and he looked pretty good (all things being relative, of course). Am going to the office to take care of some items so that I can leave around 3PM and head to the hospital for the night. His first hours off the respirator can be difficult depending on how things go, so I want and need to be there with him.

TUESDAY, 12/3/02

No extubation today. Volume support tests went well (different than C-PAP), but he required 60% oxygen -- a bit too high. Also, continues to require a fair amount of direct suction with lots of saline wash. Part of this is due to the fact that he is biting his tube, limiting airflow -- and indicating secretion-inducing agitation. I was able to convince (again) the neurologists who are, as always, unaware of his full history, not to switch to intravenous depakote per plan. His therapeutic level is above what would be the norm, so the quick-fix is to move to IV -- but it creates enormous problems in the long run. Every time we have switched from oral (or tube-fed, in this case) meds to IV, we have serious problems as he metabolizes the drugs, and valproate in particular, in an unusual manner when given directly to the bloodstream. The levels tend to sway widely, causing seizures on the low end and a dangerous reduction in platelets on the high end. Additionally, seizures and/or ongoing clonis reduce his oxygenation, so to switch to IV meds now would be extremely bad timing given pending extubation. Much to their credit, they did listen and were very receptive to and concurred with the reasoning I offered against the IV. Sorry for all the medical argot; I've learned that if you don't speak it, you might as well talk to the doctors in Swahili. They just give you blank, patronizing stares and largely ignore you if you don't toss out their lingo in a casual, confident and context-appropriate manner. It's about 2PM, and I'm heading into work to do my usual, frantic catch-up in half-the-time routine. Doable, but draining.

MONDAY, 12/2/02

C-PAP tests have gone well. So well, in fact, that there is a chance of him being extubated tomorrow. I'm going to spend the night at the hospital tonight and will plan to take the day off tomorrow if the determination to extubate is made when they do rounds in the morning.

SUNDAY, 12/1/02

More of the same, today, really. More C-PAP tests scheduled. They'll have him go for two hours on the second one this afternoon. Had seizures during the night so we're heading back into neuro-hell. Neurology has been consulted and they'll adjust the depakote levels -- maybe that will do the trick. The residents are "turning over" tomorrow. This means he'll have a fresh batch of doctors who know nothing of his almost five-year, complicated medical history. If they were readers, I'd just hand them a cheat sheet; they certainly don't have time to peruse his massive charts. The teaching hospital system works well when the problem is obvious, like a broken leg, and the solution is simple. Tougher with Stevie. Almost mandates that I be there as I'm about the only one with the history on tap.

SATURDAY, 11/30/02

Made nice progress today with just one minor, although potentially worrisome, setback. I was "locked out" of ICU most of last night as they had a baby in the room they were struggling (successfully) to save. When I was finally let in about 6:00 a.m., Stevie was alert and looked at me again and, even with all his tubes and lines and pain, gave me a big smile...then began to laugh. I know from experience that inappropriate and unexplained laughter is part of his pre-seizure "aura." Sure enough, he then had a myoclonic seizure in all limbs that lasted about four minutes. Dr. Miller, minutes away from ending her last day in ICU (bummer as she's really good), fortunately administered more Ativan and the seizing stopped. We'll have to watch for this carefully as he's weaned from the sedatives. Hope this problem won't plague us and add weeks and weeks to his stay as it has in the past. Disappointing, as we had miraculously avoided any seizure activity during this hospitalization until now. So, of course, I then had to question if he had recognized me at all, or was just seeing whatever vision it is he sees that causes him to smile and chuckle just before he seizes. The better news: they tried him on C-PAP for an hour (the respirator remains in place, but doesn't help him much; he largely has to breath on his own), and he did great! No desaturation and his respiration rate wasn't abnormally rapid. Then, the bonus. He again opened his eyes, looked at me, smiled a big smile around the tube -- and reached his arms up for me. Now, that's not seizure related. So, he does know that I'm there and would seem to be glad about it. In any event, the C-PAP trials will be done slowly. Only one today, perhaps just two tomorrow. If he'd only been on the respirator a few days, they'd be pushing it more aggressively. As it is, barring any other problems, we are still likely looking at another week before they will be ready to consider removing the tube. Work looms as the holiday draws nearer to an end. Now is when I really want and need to be near him as much as possible as he is aware of the support.

FRIDAY, 11/29/02

Stevie is resting comfortably -- or at least he's comfortably sedated. In any event, his restfulness has allowed his lungs to clear quite a bit. They said his most recent X-ray was so clear it looked like it was from a different person. I know they try to wake them up to get them to cough... but sometimes they get them so awake and agitated that the pain and stimulation from the tube causes them to secrete like crazy, as was the case with Jay, defeating the purpose. Once quieted, his O2 sats hit 100% for the first time last night around midnight. Sounds so darned trivial, but it was so nice to see I can't begin describe it. I watched it creep up from 95 to 96... pointed it out to the nurse and we breathlessly counted and mentally rooted for him together and .... 97, 98, 99 -- looooonnnng pause -- 100! It was like a touchdown. He didn't stay at 100%, but he's holding in the mid-90's, very much improved. I am so frigging tired right now I can't believe I'm writing coherent sentences. Perhaps I'm not!

THURSDAY, 11/28/02 Thanksgiving Day

Wow. Been keeping this semi-journal for over a year now. We are in the very same room at the hospital we were in last Thanksgiving (it was then a progressive care unit). It's not private as it's for acute, (redundant?) ICU care, but I like it as there are always several of the best ICU nurses on staff in here. Very rough morning on the respirator for Stevie. Finally the doctors saw he was clearly in agony and not sedated well enough and remedied this. An initial blood sample from his heart line tested positive for a bacterial infection. They've removed the heart line and are waiting to see what specifically grows in the cultures. Hopefully they'll determine it's just topical bacteria that was growing around the connective piece, which would be a common happening. I'm home for a shower and a shave, then will go back to and stay at TCH again tonight. Feels like home.

WEDNESDAY, 11/27/02

Stevie spiked a surprise 102 degree fever this morning and had poor O2 sats -- in spite of the fact that his X-ray today looked better than yesterday. He was very agitated and breathing far too rapidly, although it is notable that his own, unassisted breaths are exceptionally shallow and short and would currently not sustain him sans respirator. They administered a bolus of Fentanyl which calmed him (and me). However, the question of how, when and if he will successfully tolerate respirator removal is now becoming more difficult to answer. I'll talk to the doctor this afternoon to try to get the best tea-leaf reading that I can. I don't like that he's entering this critical period over a holiday weekend where staff will be sparse. At least I won't have to work and can spend more time at the hospital. Composed a bunch of pictures of him (most displayed here) onto a sheet which the nurses hung over his bed. [Click HERE to View Sheet] They only deal with kids when they are down and out and at their worst, so they all seemed to very much appreciate seeing Stevie in better times. I also wanted to give them a graphic image of what we are fighting to bring back and retain.

TUESDAY, 11/26/02

(Post-midnight) Preparing to possibly move into a stretch that is always welcomed but unpleasant, the pre-extubation phase. I've never been on a respirator, but I've heard more than one adult who has say that they would rather be shot than ever be put back on one. Therefore, the heavy sedation of intubated patients. They'd go nuts trying to protect their airway, gagging, choking, etc., if they weren't drugged. The problem: in order to remove a respirator, they have to make sure a patient is alert enough so that they will breathe properly on their own. All the more so as anyone who was on a respirator generally still has compromised lung capacity and/or remnants of disease, excess secretions, etc. This means the sedatives have to be reduced substantially.

Stevie's on light sedation now and is waking up and starting to display discomfort with the breathing tube. We've been down this road before (this is Stevie's 4th time on a respirator) and once saw him so physically agitated he wound up damaging his throat bucking against the tube. That saga's probably here in the history somewhere, but suffice it to say that the period just prior to extubation can be unsettling to watch -- not to mention endure as a patient. I understand there's a balance, but you still have to be pretty vocal with the medical staff if you want them to walk a more "delicate" balance as they're desensitized to the issue. So, as I said, he's starting to become aware that he's someplace he'd prefer he wasn't, and was breathing very rapidly tonight. He's still a little low on O2 saturation and he's also probably cognizant enough to finally be scared, so both factors could contribute to the high respiration rate. As it was 50+ per minute, he'll wear himself out at some point and fall back fully on the respirator. They have that set pretty low though, so I'm always wary of him de-saturating. Not usually that big of a deal in ICU, but they seemed short-staffed tonight and the nurse covering him isn't one that I consider to be one of the better or more attentive ones. So, it was pretty tough to leave the hospital tonight, but I hadn't gone in my own car --or I would definitely have spent the night there. Expecting a rough day for him tomorrow.

(Noon) Stevie is off Dopamine altogether now, that being the last of the blood pressure medicines. Now that he's a little bit better, many of the nurses are more candid about their surprise that he's recovered and appears to continue to recover. They say (and the doctors were sort of saying at the time) that not many pediatric patients are able to pull through once they are on Dopamine, Dobutamine and Neopenephrine for BP support. Obviously, the ICU crew sees and has an enormous amount of experience with desperately ill kids, so I take them at their word that he's, to date, pulled off a very difficult comeback. Sat by his bedside for hours last night and lost track of time. So, it was quite late by the time I grabbed a bite and got home. Grateful that tomorrow is the pre-Thanksgiving Wednesday, so the workday will be light and short and I can take a badly needed afternoon nap assuming things are calm with Stevie.

I doubt I have mentioned the skin infection Stevie has as it has not been remotely close to the top of the worry list. He has a fairly severe outbreak of swollen, ringworm-like welts that have become very red and are on his arms, legs, chest, face -- and even extend onto his eyelids. Dermatology examined him and determined it is a specific viral condition. They have been treating topically for three days, but I see no improvement. I'm told as he grows more aware that these areas will itch intensely, so he'll need another med for that. Stevie's skin gets very dry from the environment, restraints, etc., so I massaged him with lotion, working around his many lesions. Although apparently unconscious, he seemed to love it when I did this to his hands. He would move his fingers about individually in response to my massage. I hope in some way he did register enjoyment or relief and, perhaps, even knew that it was me that was providing it. There is potential for extubation this week, and I'm again battling the innate urge to think in timetables. In my experience, at least with Stevie, this is not a wise thing to do from an emotional standpoint. If there is some grand timetable or plan for the events that will transpire, it is most certainly oblivious to and perhaps contemptuous of my own expectations.

MONDAY, 11/25/02

A little setback last night. Jay's O2 saturation dropped into the mid 80's without any apparent cause. After suctioning and trying all the other "simple" remedies that they could think of, they had to go back up on the PEEP. They also had to increase his oxygen to 65%, vs. the 55-60% he'd been fine with for almost a week. The lungs sound clear, but his temperature crept to 100.5 -- also, no apparent cause. They have, however, been able to drop his Dopamine, so Sunday wasn't all bad... but did push us back a few days, yet again, on the respiratory weaning. Dr. Miller, a 2nd year resident who I think is one of the best pediatricians in skill and bedside manner that I've encountered had jokingly said she's been demanded of him in daily "discussions" that he must get out of ICU before she departs for better things, which is Friday. That gives him until 7:00 a.m. Saturday morning when her last shift ends to get his act together. Some part of me really wants to believe in magic like that.

SUNDAY, 11/24/02

Jay looked pretty good last night and this morning. Tidal volume and PEEP are down (yeah, yeah, just let me show off my hard-earned medical patois, o.k.?) to what would be standard levels. Good sign for the potential of extubation this coming week.

Spent the night at the luxurious Motel 3. That's the third floor sleeping/bitching/grieving area for pediatric ICU parents in Texas Children's for those of you that haven't had the pleasure of sampling this fabulous spa and resort. I can pamper myself just so many nights in a row sleeping in a cheap E-Z chair while some guy with tuberculosis loudly hacks and snores his way through the night next to me. So, I've been toughing it out at home in my own bed, but I just wanted to be nearer to him last night. He's been opening his eyes quite a bit and even -- I'm darned near sure of this -- shifted his eyes once and focused on me. Doubt there was recognition, but that means he's seeing stuff through the haze. They've started him on methadone in order to begin the long, withdrawal-avoiding wean from the other junk (pun intended) that he's been doped up on. Seems bizarre... some people get themselves all strung out on morphine or heroin all by themselves and wind up terribly sick and in methadone withdrawal programs to get clean. This little 4-year-old has plenty of problems -- none of his own making -- and we repeatedly throw in a world-class opiate and benzodiazepine habit to top off the tank.

FRIDAY, 11/22/02

(Midnight) Stevie had a slight fever (99.7) again tonight after several non-febrile days, and his heart rate was up in the 130's off the 100bpm or so rate of the last few days. They'd tried to continue to wean him off assistance by reducing the respiratory rate to 16 from 18. He responded well for a time with a rate above that of the ventilator (meaning he initiated some breaths on his own. Eventually, though, he was pushing 25-30 breaths a minute, which is too high, and generally an indication that his lungs aren't working very well. This appeared to be the case as he started to O2 desaturate into the 80%'s. It may also have been the case that he tired his chest muscles and diaphragm, which haven't had to do much of late. They had to increase the volumetric rate and go back to 18bpm in order to get O2 back into the 90's. They were able to drop his Dopamine and Versed a touch again, today. Blood pressure continues to float all over the place. Can't believe it's almost Thanksgiving. So many chunks of this last year just outright vanished through the hospital corridors like November has.

(Noon) I stand corrected from yesterday: the PEEP was not down to 7, but at 8 and remains so. Progress almost imperceptible. No change in the blood pressure support medicines although they did drop the Versed (strong benzodiazepine and amnesia agent) a touch. They are finding that he is not initiating the respirator-assisted breathing when he sleeps -- meaning he basically stops trying to breath altogether. His overall color was pale and he just didn't look very good -- in stark contrast to yesterday when he and his coloration looked great. Need to remind myself that this kid is far from out of the woods, if out of the woods is indeed to be his destination this time around. He appears to have ringworm. The doctors were arguing that it was probably just a reaction to one of the meds, but I just had to keep pointing out how distinctive the rings were and that any of his previous reactions to medicines have been an eczema-like rash. His mom says she suspected he had it before he was hospitalized, so I'm pretty certain of my diagnosis. The doctors will see it for what it is in a day or two, I'm sure. I realize, too, that a little tinea is on the bottom of the worry list right now. Heading into my first solo (sans family) weekend with him, but I'm holding up well for the time being. His O2 sats remain stubbornly in the mid nineties in spite of 62% oxygen flow and high expiratory pressure. BP remains around 95-100 / 50-55. Urine output negaive (good), electrolytes, red and white blood cells and platelets all good. Now on a continuous Kangaroo feed through the GI tube.

WEDNESDAY, 11/20/02

(Midnight) From my observations at bedside: PEEP is down to 7. Dopamine unchanged. O2 saturation in the low 90s. BP roughly 100/55. They've gone down on the Fentynal sedative, so he is opening his eyes occasionally, but does not really appear to focus. He's been on a respirator going on three weeks now. It is not uncommon for patients in that situation to "check out" mentally as they are heavily sedated yet in significant discomfort. It's frightening to see him conscious yet so "not there." One can't be positive that "he" will return if all goes well and they are able to remove the respirator. I realize progress is better than expected as his original prognosis was extremely grim, yet the process remains painfully slow. Each day blurs vaguely into the next and I find myself identifying Stevie as much through the statistics on the monitor and respirator readouts as through his physical being. I stay at his bedside and stare at the numbers, watching them inevitably dip now and then into unwanted territory. It is then that time seems to stop as minutes(?) pass before things stabilize again. The rest of the patient load in his ward room has turned over several times now. A new crop of worried parents, most first-timers in a pediatric ICU, display their varied emotions -- from abject grief to hysteria -- over the plight of their children; most of the kids in the room are in pretty good shape compared to Stevie. While these parents face and display their waves of new, unpleasant and often uncontrollable emotions, I sit silently in a relative, strange and contradictory comfort that comes from intimate familiarity with this setting, scene and situation.

(Noon) Sorry for the lag in updates, but time has been at a premium the past few days. Monday night, as I sat by his bedside, Stevie's blood pressure suddenly started to drop to unnerving levels (i.e., 70/40) and his O2 saturation fell into the low eighties from the mid nineties. After an evaluation that only confirmed what they knew -- that he had an extremely congested or collapsed lower lobe of his right lung, they deep suctioned him and administered a booster dose of Albuterol. They remained puzzled, though, as this helped only modestly -- and there was no other apparent cause for his sudden downward turn. They were preparing to reluctantly reverse course by raising the PEEP level and Dopamine dosages, but ultimately were able to hold steady through the night. However, this unexplained setback slowed the projected forward progress that I was (stupidly and yet again -- you'd think I'd learn) plotting out in my mind. As of now, Stevie is on the same Dopamine dosage and PEEP level (8) that he was on Monday afternoon. He's basically just held his own for the last few days as they wait for his blood pressure to stabilize. He is very sensitive to the BP medicines, and the slightest drop or delay in the IV feed will cause an instant drop in his pressure. Toyed with the idea of proposing a situation to my employers where they just send me paychecks in exchange for me not bothering them. It seems simpler and, to me, a very fair exchange for them. I find this whole going-to-the-office business and working a real nuisance.

SUNDAY, 11/17/02

(Evening) Visited Stevie and he looks almost like himself again. He was resting very comfortably so I tried not to disturb him. His Dopamine had been reduced by half in spite of the normal no-change weekend routine. This could speed up his exit from ICU barring further complications. The logistics get trickier once he's in progressive care or on a regular ward as a family member or other appointed non-hospital person must stay with him at all times. Hoping the g-tube and lack of seizures (knock on wood) will hasten his ultimate discharge. While not officially told so, I believe he is no longer in "critical" condition.

(Morning) Stevie is opening his eyes now from time to time, although it's unclear if he focuses. We're nervous that they won't keep him properly sedated while on the respirator, as he has a high tolerance and can "break out" of sedation very quickly. This happened in the past and he damaged his throat as he reflexively thrashed against the tube in his airway. They did drop the PEEP to 9, even though it is a weekend, and he now relies solely on Dopamine for his blood pressure support. He is initiating more breaths on his own, so we continue to move in a positive direction. Mom departed this morning at the unholy hour of 4:30a.m. and should be home by now.

SATURDAY, 11/16/02 (critical condition)

The weekend is here so I have a bit more time to recount. Stevie is holding steady, and there will likely be no changes in his medication or ventilator status over the weekend. They are still saying several more weeks in ICU and on the respirator, so Mom (Ginny) is heading home first thing Sunday morning with plans to come back instantly if things turn downward again.

The quandary for us is that we are so accustomed to him, literally, "hanging on the brink" that we often lose grip on how bad he actually is. For example, when we saw the PEEP pressures come down and the heart rate fall to only modestly dangerous levels, in our minds we thought "Ah. Good. O.K., he's almost well now." It is hard for me to remember that for most people, finding or seeing any family member on a respirator alone -- never mind the multitude of issues from seizures to g-tubes, to blood pressure etc. -- connotes an extremely life-threatening and traumatic situation. It is still that for us and Stevie in reality, of course. We just don't have much of a 'shockability' factor left within. So, it is necessary for me to periodically ask the doctors to give me a different kind of assessment than they might give most families. I relay what I've described in this paragraph and they do understand -- they realize we have, perhaps, a perspective more like they do as we've seen most of it before. I think they then feel more free to say to me what they normally reserve to be said between themselves. I think our mindset, though, entails only the logical portion of the brain, as I still find the emotional and physical side effects to be very much in evidence. In fact, I think they increase with each episode. So, while part of us grows more accustomed to these situations, part of us becomes more and more beat up. Finally, for family, please note that I've learned there are a number of chronologies/stories like this on the web from other families in similar situations -- as they offer a source of comfort and information on dealing with this rare condition. I understand some of the sites have added Stevie's history here as a case-story link. So, some of my narrative (particularly on my psychological state, etc.) is more intended for that audience -- not to bore the rest of you with my own personal saga which is only a faint and secondary image in the tapestry of Stevie's journey.

I did, as noted, though, need to be reminded last night that he very much remains on thin ice. Things aren't as bad as the first week -- when they literally did not have any expectation that he would survive 24 hours going forward -- but they're not as rosy as I start to think when I see forward progress. The enormous swelling of his body has gone down as they've allowed liquids to be eliminated in concert with stabilizing blood pressure. He looks like himself again; when Ginny arrived, he was almost unrecognizable. PEEP is at 10. He remains on Dobutamine and Dopamine, as well as the usual medications associated with a respirator. The Vecuronium (paralyzing agent) has been stopped, so some movement is evident. This also allowed them to remove the EEG monitoring (nice, as it was just a mess of tape and wires on his head) which was necessary as seizures would not have been detectable while he was medically paralyzed. Heart rate remains elevated (145-155). Low grade fever persists. His badly needed dental surgery, had he remained healthy, would have taken place Friday. We have had it scheduled three times over the last year (there's a 4 month wait for high-risk patients like him who must have any dental procedure done in a hospital under anesthesia) only to have him hospitalized for other reasons just prior to the date each time. We have requested they investigate the possibility of dealing with it during this stay, as the bacterial risk from the untreated dental problems (and the pain) are discomforting to him and us.

As I noted above, I've learned over time that nothing much happens on weekends in hospitals beyond emergency measures. The staff is too lean, so they don't like to make changes on patients that could create situations that demand additional attention. So, to carry my warped business analogy stuff a little further, they (the hospital) morph from an auto-repair shop into a rural bait store on the weekends. You're there, you need worms, but nobody is any sort of hurry to get them to you as they know there's no place else around for miles. So, you'll just have to wait and be thankful when -- and if -- they finally get around to servicing to you (and to charging you an amazingly exorbitant price for that tiny can of nearly-dead worms). Again, clearly, these hospital guys are a very advanced species of capitalists and I have much to learn from them.

THURSDAY, 11/14/02 (critical condition)

PEEP down to 11 and they continue to wean Dobutamine. Still in critical condition, but hopefully will keep moving forward. Has a temperature again, though, after a day or two of normal. Running about 100.7, and they suspect bladder infection from the catheter.

This is the really interesting portion of hospitalization, and a fascinating study for business school students. This is where you start to get to deal with the stuff caused by the stuff they used to save you from the stuff you had when you came in. It seems to take about a week for them to get your original problem fixed, then another six to eight weeks to fix the problems they caused fixing your original problem. Then they dump you on the street, still not quite right, and send you a huge bill. You've got to admire them. They've taken a model that's worked successfully for small time auto repair shops for decades and turned it into a real, world-class business. Better than taking him back to the dealer, though, I suppose.

WEDNESDAY, 11/13/02 (critical condition)

PEEP down to 13, and he's holding oxygen saturation in the high ninety-percentages. Dobutamine (one of the blood pressure support meds) was lowered a bit and he responded well. He's still on what would be considered pretty aggressive respiratory assistance, but he's heading in the right direction. He remains purposely paralyzed (via vecuronium) and heavily sedated to prevent damage to his lungs from the high pressures, so it's now been ten days since he's been conscious. We're hopeful that -- given recovery --this episode will be different. In other words, that he won't emerge from this with a permanently reduced cognitive or motor-skill baseline.

TUESDAY, 11/12/02 (critical condition)

No further weening of pressure or medication was possible today as Stevie's blood pressure sliipped a bit lower than it had been, a low grade fever returned and his heart rate was elevated. Another wait and see day.

MONDAY, 11/11/02 (critical condition)

Stevie's oxygen saturation has improved enough so that discussions of removing his life support are off the table for the time being. However, he remains in extremely critically condition and on medicines that are supporting his blood pressure. Additionally, the respiratory PEEP remains high (15). They will begin to slowly attempt to reduce the pressure (perhaps one unit a day) and wean the medicines to see if his system can self-sustain. Steve Sr. went home yesterday and I worked a good part of the day today. When I show up at work with Stevie so severly ill, some folks at the office think I'm crazy, callous or both until I remind them that Steven has been hospitalized almost 150 days this past year, many of those in ICU. The company is very understanding and flexible, but not to the point where I can just be a "no show" to that degree. Took mom to the hospital at noon. Am waiting for traffic to die down a bit so I can head over and join her.

SATURDAY, 11/9/02 (critical condition)

Stevie's condition remains unchanged. I am unsure if "stable" is good or bad in this situation. They have been able to slightly elevate his oxygen levels to the low 90% range. However, in order to do so, they had to increase the PEEP to 18, which is a very high level. The higher the pressure the greater the danger that one of these pathways may rupture, leading to further, severe complications. The ICU at Texas Children's is overflowing today as the cold weather has brought an influx of sick kids. Stevie is in a room that now has seven, occupied beds in a room designed for a maximum of four. We have been unable to see him since last night as they have had multiple CODE situations (resuscitations of dying children) on other patients in his room that required them to prohibit visitors. I'm home for a few hours while mom stands watch and waits for things in his room to quiet down.

FRIDAY, 11/8/02 (critical condition)

Well. We've been told that within the next two days we will most likely have a determination as to a final outcome for Stevie. They have pulled out all the medical stops and are taking measures that are extreme and dangerous in and of themselves, but warranted given Stevie's condition. The Vice-Chief of the critical care ward, Dr. Jefferson, consulted with us and said that Stevie's chances are poor. While death is not imminent within hours, he must shortly begin to support -- at least to some degree -- some of his systems such as blood pressure or oxygenation on his own, or the very difficult decisions will need to be made regarding continuing his life support. I believe I am prepared for this... at least as prepared as a father can ever be in such a situation with his son, which is probably to say not very damned prepared at all. All this being said, I am keeping in mind that doctors are so often wrong, and children are often amazingly resilient -- even those with genetically impaired defense mechanisms such as Steven. I will not give up on him (let him go to where he needs to go, really) until it's clear that this is the only and best course.

I've done my best not to inject personal oratory into this history (I know, I know, I didn't say I'd succeeded in doing so...), but I now feel inclined to do so. As my cousin Brad just wrote to me: "I don't know what your thoughts are about a divine plan, I'm not sure what my own are, but I know that the best is reserved for the children because they are most deserving of it. I hope you can find the strength that you need now. I know that Stevie is blessed to have you for a father." Pardon me, Brad, for using your words here without permission.

I don't know what my own thoughts on a divine plan are, either, and I wish I knew in my heart what kind of dad I've really been. But I do believe the best must be reserved for children as he wrote. Thank you Brad, your kind and succinct words were very helpful. Given that I, too, don't know what I think about divinity, I don't often (perhaps ever) ask this, but I would ask now that any of you that are ever so inclined to do so now pray for peace and tranquility for my son, and that he does not suffer unnecessarily whatever the eventual outcome. Thanks in advance -- and please sign the guestbook if you wish to comment. SWW

P.S.: Although I quoted Brad, please know that all of you who have written and/or called have helped me enormously to know that you care -- and I also know that those who are just following the situation care just as much, and this is just as meaningful to me. Mom and Steve Sr. remain here for the duration, and I again must note that I am blessed and grateful to have family at my side. I will continue to update as events unfold.

THURSDAY, 11/7/02 (critical condition)

Stevie continues to be in critical condition although he has remained stable in most respects for the last 48 hours. Each day of stability in the ICU is a positive sign. There have, however, been instances where his blood pressure dropped dramatically -- once due to a slight clog in the lines from his B.P. medicine, once for no apparent reason at all. Recovery of the ability to maintain blood pressure is, of course, vital and it is clear that he presently is 100% reliant on medicine to sustain same. Secondarily, his lung function remains greatly compromised. He is receiving 10 liters per minute of O2 (as much as they dare give him all factors considered), yet holds only about 89% O2 saturation. 100% would be normal -- and that would be on room air and without any breathing assistance (i.e., the respirator he is on or the BiPap device). Optimism remains guarded as, in a best case scenario, he is in for a long stay (many weeks) in the intensive care unit and then, if all goes well, much more time in the progressive care ward for rehabilitation.

WEDNESDAY, 11/6/02 (critical condition)

They have identified at least one virus in Stevie's system, but cannot rule out bacteria as well -- not that it matters at the moment as he has not responded well to antibiotics and viruses are untreatable. Without multiple medications, he has no blood pressure, and without the respirator he is unable to sufficiently oxygenate his blood (he is barely able to do so with the respirator), so he is fully reliant on immediate life-support systems. The blood pressure issues are primary, and remain the reason for the lack of optimism on the part of the medical staff. I am so very grateful that Mom and Steve are here for moral support. Toughest time I've experienced with him to date.

TUESDAY, 11/5/02 (critical condition)

Stevie is in critical condition and in intensive care at Texas Children's. They suspect a bacterial infection throughout his body that has caused exceptionally high fever, a dangerously high heart rate and low blood pressure. He's currently intubated and is receiving drugs to maintain his blood pressure and to reduce the fever and heart rate. The doctors will "consider him lucky" if he is able to pull through this time. Mom and Steve Sr. are in route to Houston and will arrive this evening.

MONDAY, 11/4/02 (Hospitalized)

Stevie had been ill this week and was taken in for an X-ray yesterday. He was given an antibiotic shot and sent home yesterday afternoon where he was doing well. During the night he had increasing difficulty breathing. By midmorning today his lungs were congested to the point that he had to be taken to the E.R., intubated and admitted. He is currently in pediatric intensive care at Texas Children's Hospital on a respirator. I don't have many other details at the moment -- have just stopped home to try to collect my mental state... as well as a change of clothes, breakfast bars and all the other tools of the trade you learn to use during long hospital stays. I'll be staying with him tonight. Crossing my fingers that this visit won't be prolonged. Will update when I can.