OTHER:
			Archives General Medical Info New Visitor's Page
3/25/98-6/9/03

PREFACE: Steven James Yray-Wasilik passed away on June 9, 2003 from complications of mitochondria. First time visitors are urged to read the New Visitor's page. Note these entries were made in real-time, so the journal reads in reverse chronology like a web log (most recent entries at top of page). If you wish to read Steven Jame's story in the order it happened, enter the archives and start from the earliest dates working forward.

I'm hopeful this journal may be of some small help or consolation to any who might find themselves or a loved one in similar circumstances.

SUNDAY, 7/20/03

I be missin' you already,
I be missin' you to tears.
You ain't be gone a month,
Feels like you be gone for years.

I be missin' you with snow fall,
I be missin' you with rain.
I be missin' you at midnight
And when sunshine come again.

I be missin' you in silence,
I be missin' you in crowds.
I be seein' you in oceans,
I be findin' you in clouds.

And the strangest thing that be
As I be missin' you so strong,
Is the more I be a missin' you
The longer you be gone.

WEDNESDAY, 6/25/03

My Aunt Carolyn posted this quote, from "Remembering: the Death of a Child," on the Guestbook that I thought worthy of repeating here:

"The death of child takes you on a journey like a hawk carries a rabbit through the sky. It eventually drops you either dead or wounded. What you see or do on the journey is up to you. The journey itself is not."

The quote rang true for me. So far, I hadn't really thought about checking out the view from wherever it is that the hawk has me at this moment. I do find myself surprised with each day, though, as some new and unforeseen symptom seems to crop up -- a phenomenon I hadn't personally experienced in other death/grief situations. I guess that, contrary to what I'd been assured, I believed each day would just have to get a little bit better. Not so, particularly, to date, although I do believe the current state is more endurable over the long-haul than the hell we were all in during the catastrophic weeks just prior to Stevie's passing. Most recently, my memory regarding small, random items can be shockingly wrong. I can make an appointment in one moment and in the next be certain I'd made it for a time or day that I did not. Not particularly helpful for general planning purposes.

A grief therapist told me he's often been told that losing a child causes one to thereafter live in a type of "fog." You can and do learn to exist in this "fog," just as one would ultimately adapt to a constant life in real fog. However, an adjustment to fog, regardless of how complete that adjustment might be, certainly wouldn't provide the same experience as strolling through crisp and clear days.

SATURDAY, 6/14/03

Steven James Yray-Wasilik has now been, in all formal and ritual respects, handed over to the care our our maker. I am unsure if I will continue this journal here in any fashion. If so, it will be in order to help me maintain notes for a book that I hope to write, a book that might prove useful to other parents facing formidable medical journeys in the future.

I also hope to thank all of you that have signed my guestbook individually. If I'm unable to do so, please forgive me.

So, for now, it is with mixed emotions that I close this most important chapter of this journal -- Steven's life -- and begin to make efforts to move forward. It is my greatest hope that I will make use of what may remain of my years in a fashion that would make my child proud.

God bless you all.
Stanley Ward Wasilik

Dad's Eulogy and Official Obituary.

TUESDAY, 6/10/03

Our sweet son, Steven James Yray-Wasilik passed away on Monday evening.

Along with our most profound grief and sense of loss is relief in the knowledge that he has, at last, been liberated from a tired and troubled body that he endured, with little complaint, for most of his days.

I feel most blessed for and unworthy of having been visited, however briefly, by such a strong, sweet, wise and compassionate soul. I will miss you here on this earth, my Steven James. I will now and forever miss you as I have missed no other.

I used to routinely tell Steven in fighter-jock, clock-based, directional vernacular (12 o'clock being straight ahead) that I had his backside fully covered.

I've still got your six, Stevie, and I shall so always wherever either of us may go.

SATURDAY, 6/7/03

We are comforting Stevie and, to the extent we can, ourselves, as we await the end that they tell us will come shortly. God bless you and thank you to all who have offered your support -- from near, from afar or simply in spirit, through these terrible times. We are taking what consolation we can in knowing that we have done everything, everything, everything we could do for Stevie within the limited bounds of our knowledge and abilities, and that we have given him as much unqualified love as one can give to another.

Close relatives only, please, should you wish to, may contact us at the Texas Children's Hospital intensive care ward. I've emailed this info directly as I cannot publically post the hospital phone number normally reserved strictly for parents. They are granting us leeway on this restriction under the circumstances.

FRIDAY, 6/6/03 Hard news, harder decisions

6:30PM -- In our noon meeting, we learned that a comparison of Stevie's MRI's revealed that , over the last year, he has suffered severe and unusually rapid atrophy of all portions of his brain. This condition is irreversable and indicates that he will require ongoing life support. Under the best of circumstances, he would be offered little time before he succombed to issues related to this neurological degeneration. As it stands, in his current weakened and precarious position, the decision has been made to make him as comfortable as possible, and we expect nature to take her course in the coming hours or days. Extraneous, invasive support that interferes with his comfort has been withdrawn.

10:00AM -- Extubated -- Stevie was successfully extubated to Bi-Pap yesterday. So, while he is not breathing without effort support, he no longer has the tube or cuff in his trachea to contend with. An examination of his airway was exceptionally positive; despite prolonged intubation, there is absolutely no physical obstruction or swelling to interfere with breathing. The photos of his airway, down to the dividing bronchial passages were virtually pristine -- an astonishing finding under the circumstances. Additionally, his x-rays look good.

Most expected him to either rapidly sink or swim, most of the "most" expecting the former. As I feared, he has done neither, but is treading water. His oxygen requirements are high and have increased over the last twelve hours, and the BiPap pressure and support are strong. For the first time ever, Stevie twice presented low heart-rates yesterday, each instance lasting about an hour. His respiratory rate has dropped several times as well, to as low as six breaths a minute. This could possibly be related to the sedation, although I have my doubts. Having largely ruled out airway issues, and with some evidence that the lungs are not particularly congested, this at least narrows down the issues that may be causing problems. An MRI showed "brain atrophy" -- or at least those words, and only those words, were noted in his chart regarding the MRI. He showed some, minor atrophy in small parts of his brain before, so I don't know yet if this notation represent incremental atrophy. I'll get a better comparative read when we meet today a little after noon. If the MRI demonstrated that atrophy has continued over time, this would be the strongest, hard evidencel to date -- beyond his observable physical condition and symptoms -- of mitochondrial progression. His O2 saturation varies in the range of 94%, acceptable if not optimal. He has largely appeared unconscious during this entire period.

So, ultimate and impending issues due to his disease may be insufficient muscle strength to sustain adequate respiration, neurological issues that prevent the brain from reacting properly to carbon dioxide levels in the blood or lung damage that limits diffusion of oxygen into the bloodstream. If any of these present severely in the coming days it will be necessary to re-intubate. I'm not a doctor, although I play one on this website, but the combination of irregular heart and respiratory rates -- and a low body temperature of 96.5 -- are suspicious to me of basic, neurological control issues within the brain.

The forward course, barring a sudden downturn, offers additional obstacles. He must now be weaned from the heavy sedation he is under, and ensuing seizures and/or myoclonis may interfere with his breathing ability. He must be weaned from oxygen and pressure support -- at least to levels lower than he is at now -- before discharge, even on Bi-Pap, could be considered. The vast issues surrounding how he could practically be cared for out of the hospital are best left aside at the moment until it is clear that those are issues we must face. Also set aside for the moment, granted respiratory recovery, is an assesment of what he may have lost in terms of physical and neurological ability through this seven-weeks-and-counting assault to his system.

Unfortunately, one of our best voices in this medical and ethical conundrum, Dr. Jefferson, will be out of the country for the next several weeks. Fortunately, there are two other senior physicians in critical care that I trust on the most weighty issues.

My not-so-little brother, Steve, flew in yesterday morning to be here for this period. His presence, and in particular his unique appreciation of my suprisingly in-tact, warped sense of humor, as always, is a tonic for my spirits.

WEDNESDAY, 6/4/03 Seven weeks hospitalized and intubated

We met with doctors this morning, as noted. The reason for the suggestion of extubation that had surprised me in a positive way yesterday turned out not to be so positive. It is time, it seems, to give Stevie a shot at extubation given the long duration that he's been on significant, respiratory support. However, it is highly possible that one or more of his many chronic, progressive issues will prevent that extubation from succeeding.

Failed extubation at this juncture will leave us very limited options. We've been asked to be prepared tomorrow -- or in the coming days -- to make ultimate decisions on his support. The medical consensus seems to be that, should extubation fail due to irreversible conditions, continuing support (or performing a tracheostomy to extend his on-respirator status indefinitely) may be both cruel and purposeless. Should extubation succeed, on the other hand, it will simply start a ticking time clock, as they fully anticipate these same issues, or others that he has, to be his undoing in the coming months.

As we all sat in his room, crying and ignoring the "two visitors at at time" rule usually so strictly enforced -- I saw Stevie with real clarity for probably the first time in weeks. I watched as he coughed and choked against the secretions that continually build up in his tube. I watched him faintly struggle against his almost-unneeded restraints, wide-eyed and with an almost animalistic terror. I noted he no longer has his once-characteristic strength and that his body does not appear to be responding to his wishes. He weakly flails only the hands, forearms and head in a disturbing, random manner -- nothing else much moves voluntarily save for his respiration. Although he generally takes no apparent consolation in our presence, our touches, our words -- Ginny did report that he seemed to be soothed by the physical therapy of moving his limbs about in an effort to retain some flexibility and viability in his joints. Beyond that, he has not appeared, at least, to be particularly aware of our presence since he was intubated on day one of this stay forty-nine days ago. He seems much in hell during many of his semi-lucid moments. It is difficult to conceive of wishing this upon him indefinitely any more than I would wish it upon myself.

Tomorrow morning he'll be taken to the O.R. where they will extubate. They're doing so in the O.R. so that the ENT specialists can examine his throat at the same time for any signs of irreversable scarring, polyps or other issues that can't be fixed given his condition. They'll put him on BiPap and then we will watch and wait. My worst fear is that he will neither sink nor swim, but that he'll do o.k., but not quite o.k. enough -- leaving him and the rest of us in this tenuous situation for an extended period.

TUESDAY, 6/3/03

They are, to my surprise, ready to give Stevie a go at extubation. We (me, his mom, Dr. Jefferson, neurologist Dr. Clark and primary physician Dr. Boline) meet at 6:45 a.m. tomorrow (ugh!) to discuss potential issues with the extubation and plans for forward care, including post-hospitalization. We need to remind ourselves that we still have a very sick child on our hands; it's too easy to see him as "almost well" in a comparitive sense. The sailing weather has steadily improved over the past few weeks, but we cannot forget that rough seas may yet be encountered. Denise has returned from a brief business/pleasure trip, and her renewed presence is appreciated in this potentially difficult period.

MONDAY, 6/2/03

Stevie's oxygen support has been reduced to 40% and he's tolerating it -- another prerequisite to extubation nearly met. Stevie's mom has moved into a house well out into "the burbs." Previously we've lived in relatively close proximity to each other and the hospital. If his current, upward trend continues, we'll need to begin considering complex, post-hospital care issues, as the overall picture since April 15 -- the day he was admitted -- will have changed considerably.

SUNDAY, 6/1/03

C-Pap trials have been extended to seven-plus hours at a time, now. Talked with the fellow, Dr. Cos-Bu about the O2 wean -- he ordered a drop to 50%, down from 60%. Stevie did fine on that, but wasn't on C-Pap -- i.e. the machine was giving him nice, deep, forced breaths. When he C-Paps tonight they'll see if he can tolerate the drop in O2. Sedative weans could begin this week and extend two, three, maybe four weeks. The possibility of extubation remains off in the distance. Despite the official date, the summer has certainly arrived in Houston.

FRIDAY, 5/30/03

Four-hour C-Pap trials being done today. He's done well on his C-Pap trials, but it's notable that his O2 support remains at a high, 60%. It's the usual contradictory mess of progress in the face of a series of remaining hurdles -- leading, at best, to we know not what. I don't know if they'll try dropping the O2 before they back of the benzodiazapines that are possibly suppressing his seizures, or if they'll try weaning the drugs first. I would imagine flipping a coin on that one is as good a guess as anyone can make. I do, on these matters, have confidence in Dr. Jefferson, who now largely directs Stevie's case. Stevie continues to open his eyes often but does not focus on or follow anything as far as anyone can tell.

Fungal, skin infections persist as does lung congestion. Given all the numerous, ill-defended attacks to so many areas of his body, underlying immunology issues seem apparent, whether as a part of his overall disease or as a separate, perhaps partially causative issue. These considerations are undetermined at present, but if he gets well enough, there are some tests and treatment options available that could help him in this regard.

Weekend six. If Stevie is restful and the day is clear, as is predicted (the day... not Stevie's restfulness), mom and I will make a fast run to Galveston (about 45 minutes from my place) early Saturday morning. An hour or two of ocean-side therapy would do us both some good.

THURSDAY, 5/29/03

More of same. Slow, respiratory improvement, but they're not going to push him too hard. He's back on antibiotics due to the fevers that came about shortly after his last course of Vancomiacin ended. More blood cultures taken -- generally at this stage nothing will grow from them. Whatever he's got posseses stealth technology that routinely defeats modern medical detection efforts.

Now the months begin to blur together. Spring arrived here and departed without informing me. How very rude.

WEDNESDAY, 5/28/03 Six weeks hospitalized and intubated

Stevie is, within the bounds of his overall critical state, stable today; none of us knows what that portends. C-Pap trials continue for now. The gains he makes are slow, small, perceptible, yet are offset by the significant, apparent losses he has sustained through this.... "bout" seems such an insufficient word. We convene again in slightly more than a week with some of the best medical minds Houston has to offer -- barring some divine intervention -- to reassess where this journey leads.

Mom has graciously, continuously remained here in Houston the entire time despite her job, other life obligations and plans. Having managed situations somewhat like these by myself in the past, her presence has been a priceless comfort. For a general, chronological picture of what has gone on here in the past two years, a picture that defies simple words, CLICK HERE.

TUESDAY, 5/27/03

Tomorrow will mark six weeks of continuous intubation. Given an adult in a similar situation, they would have performed a tracheostomy a month ago. They can get away without same for longer periods and at higher pressures on a respirator with children.

Stevie's right lung had worsened again yesterday. Depending on his x-ray results from this morning, C-Pap trials may cease and they could have to begin changing ventilator settings in an effort to open the upper right lobe. His last course of antibiotics ended Monday. We know from history that unless Stevie is in pretty good shape, when the antibiotics are stopped, fever presents followed by increased respiratory issues. We can't continuously maintain him on antibiotics, however, as these open him to fungal infections, some of which persist today on his skin. Per history, his temperature this morning was 101.7.

Except when sleeping (or knocked out from sedation), it seems that many of the breaths Stevie is obliged to take via machine, or those he labors to take on his own, are like the strokes of a whip. The suffering he apparently bears under these lashes can be torturous for us to observe, and it is difficult for my mind to wander to a place where I might imagine what it is like for him. It is perhaps a small, incongruous comfort that when his eyes are open he does not or cannot focus. I would like to believe that he is not really "there" to experience all that is happening to him.

There is no "line in the sand," on this desolate landscape to offer us unequivocal or complacent guidance, but I know in my heart that we cannot continue this course much longer. We've been disillusioned captives on this merry-go-round for so long that we often know exactly what awaits beyond the apex of each, anxious bend. It seems that it is never something for any ultimate good that rests within my most elevated, cosmic concepts of what that might be. Still, hope, as it I believe it must, remains, but with a haunting question: for what, precisely, should we hope?

SUNDAY, 5/25/03

Stevie continues with C-PAP trials. He does well, but can be so very tired at the end of the 2-hour trials, so distressed and frightened that it's unpleasant to watch. We do remain hopeful that somehow he'll pull it through -- that he'll prove us all wrong and return to his pre-April baseline. We're painfully aware of the reality that with each additional day he spends on a ventilator, the odds increase that he won't be able to be extubated.

FRIDAY, 5/23/03 Memorial Day Weekend Begins

They are continuing with C-PAP trials. It's been exceptionally difficult to watch Stevie in moments of distress for him as he is quite alert. I can't begin to imagine what he is going through physically or mentally: To be unable to communicate or understand communication, to have a tube down one's trachea, to have little control over muscles, over anything, really -- and for this to go on for a seeming eternity.

Still, he continues to exceed expectations and appears to grow a little stronger from a respiratory standpoint each day. Few, if any changes to treatment beyond continued extensions in duration of the C-Pap trials are expected over the holiday weekend, particularly with Dr. Jefferson out of town

I did meet with Dr. Feigin this morning and hope our discussion will prove useful and productive to him, the institution of TCH and our family. Have had little sleep and hope to catch up should Stevie's apparent comfort level allow me to feel I can be away from him.

THURSDAY, 5/22/03

They've begun C-PAP trials with Stevie, which require him to initiate about 95% of the breathing effort. He did well with a 15-minute trial. They'll try 30 minutes shortly and, given success, extend these trials to an hour, two hours, etc., until extubation may be attempted. We still don't have a clear picture of where he might be in other terms. It is difficult not to fear that we may have, through best-guess judgments and supreme medical efforts, simply extended what has become a clear and painful cycle for all -- and that we'll do this danse-macabre once again in the fall. On some higher plane, such negative thinking seemingly deserves merit, as Steven James almost ritually defies whatever we choose to believe about any short-term prognosis.

WEDNESDAY, 5/21/03

We haven't yet been to the hospital today, but Stevie's PEEP has been reduced to 6. Based on that alone, he is at or near pressure levels where extubation is possible. Before that can be considered, though, they'll want to decrease the number of breaths the machine takes for him per minute, likely lower the oxygen supplement levels and to see that his own breaths are robust and frequent.

Last night he opened his eyes often, but clearly did not see. We've been here before, too many times, and this is as expected. He seemed as comfortable as can be expected and was breathing over and above -- but not fighting -- the ventilator, although his own breaths were quite shallow. They continue to lower the Versed and Fentanyl, the pain control and sedative agents, and we'll continue to observe how he responds. No myoclonic or seizure activity has been evident, although he still has low-grade fevers in the evening and night hours.

Unfortunately, no ultimate outcome is reasonably expected by the medical staff to be positive relative to his pre-admission status. So, in the context of all the given, attending issues with him, we continue to hope for the best of those outcomes, whatever that might be.

TUESDAY, 5/20/03

Five weeks tomorrow -- Stevie's longest stint on a respirator to date. Several respiratory therapists have noted that they have never seen any child on a ventilator at the high PEEP levels Steven was on for so long. He represents new territory for them.

Yet, he's been off Vecuronium for over 24 hours and is holding well at a reasonably low PEEP of 7. He is now, amazingly, breathing several breaths a minute over and above the respirator. He is certainly a most rugged fighter and it cannot be said that this kid can't take a lick. All that noted, he is far from out of the woods. He is much more heavily sedated than when he was in a similar spot weeks ago. The effects of extended paralysis make it likely that, under the best of scenarios, he is still in for a very long hospital stay. If he does recover, it is also possible he will no longer be a candidate for home care.

Wait, wait, wait. It's impossible not to swing hard from bleak defeat to soaring optimism, but I've learned to temper these mood changes to the extent that I can. As much and as quickly as our spirits may sway, so too can Stevie's condition.

MONDAY, 5/19/03

Stevie successfully underwent surgery this afternoon to implant a central line. He's currently being stabilized and readmitted into the intensive care ward. Thankfully, the necessity to poke and prod with needles in search for new, viable veins every few hours is now negated -- and the uncountable number of bruises that have resulted on almost every part of his body can begin to heal.

Barring any issues that might follow, I'm sure we'll continue the respiratory wean attempt. I'd like to feel that there will be a point in this process where, given forward progress, we can, for lack of a better word, breath easy, but there is not. We know too well that anything can happen to him, without warning, at any time. The historical potential for abrupt, high fevers, the seizures or myoclonic activity that can appear at any time, and the danger of sudden oxygen desaturation and/or a loss of blood pressure are probably the most immediate fears that weigh upon our minds. All are generally, but not necessarily quantifiably, in some part related or due to infection. He is apparently free from same at the moment, but the recent surgery and his general environment (i.e., a ward filled with infectious agents of all sorts) make the risk of a recurrent infection high. If he can avoid such a setback, and if his diaphragm and chest muscles retain the strength to draw adequate breaths, he may pull through. If and then only will we be able to surmise what further losses in ability, what further compromises to the quality of his life may have come about via this exceptionally rough bout.

SUNDAY, 5/18/03

Stevie's clinical picture has been good for several days. The lungs appear clearer and he has been free of fever. So, they're making another, long-awaited run towards bringing the respiratory PEEP down. It is currently at 10, down from 12 yesterday. He's holding O2 O.K. at these levels, but we know the real issues begin once they go to 9 or below and take him off the paralytic drug, Vecuronium. That's when we'll learn if Stevie is able, as he was not a few weeks ago, to take over on his own. Of concern is the muscular atrophy that goes hand-in-hand with induced paralysis and is exaggerated when underlying muscle-related (i.e. Mitochondrial) disease exists. Then, too, are the ever-present seizure concerns. As the paralytic and other heavy sedatives are tapered, the potential -- and, to be realistic, near certainty -- that they will return exists. The myclonic movements and seizing, of course, interfere with his ability to breath naturally under the best of conditions. It's a Catch-22, as the same medicines that control his seizures also suppress his respiratory effort -- so a fine and tenuous line must be walked. I wish it were in my power to do for Stevie what he can now only do for himself.

NOTE: I've added a link in the banner to webmd.com. I think this is a terrific site for medical information as it pertains to Stevie's condition or for your medical resource needs. I have used their logo without expressed permission, but I'm sure they won't mind the free plug and link to their site given the setting and subject matter of this portion of the site. SWW

SATURDAY, 5/17/03

Stevie's condition continues to remain as it has. We had an involved discussion yesterday about the issues surrounding Steven's care with all seemingly appropriate personnel in attendance. The direction of his care was clearly agreed to and outlined in much detail. A long, emotional day, from which I recuperated (having taken another vacation day), resting at home.

Then, another of what I've resignedly come to term as "TCH Blue Light Specials" emerged to turn the evening on it's end.

The short version: I received a call at home around 7:30PM from a surgeon preparing to transport Stevie to O.R. for the central line procedure we've known of for over a week. The surgeon was calling to inform me he'd determined that the course of care, as noted above, would not apply during the surgical procedure or to any issues that might come about from the surgery. I can't elaborate sufficiently here on all the implications, both of small and monumental import, that this presented. However, it placed me in a horrible position. On the heels of an extensive meeting to hash-out such issues, I was being asked -- on the spur of the moment and after 'full-staff' hours on a weekend -- to consent to a procedure under conditions completely contrary to the directions defined in the meeting. I knew Stevie needed the central line -- should I consent? The surgeon gave me contradictory information to what had been decided at the highest levels of the institution -- should I revoke consent? Had this been an unexpected or emergency situation, rather than one planned for over a week, I could comprehend the necessity of placing a distraught father in this catch-22 position. As it was, and as it fit into a constant, repeating pattern, I could not understand -- and it was the last straw.

I determined that I needed to revoke consent (I'll never know if this was a good or bad decision -- I'll just have to live with it) until I could speak to someone with a little more knowledge than this doctor who informed me that, as a surgeon, he had a perspective on my child that I was unlikely to appreciate. He was absolutely right. His perspective (if his minimal knowledge of my child and his issues could even qualify as a perspective) was most unappreciated. I spoke to Dr. Jefferson, top man in critical care, who agreed that we would postpone the surgery until the morning, and that he was sorry for the incident.

I then began making the necessary calls to set up what I had preferred to postpone to a less stressful time: A meeting with the Physician in Chief and Chief Administrator of Texas Children's Hospital and the Baylor College of Medicine, Dr. Ralph Feigin. This potential meeting had been in the works for some time, but I had hoped to have a reprieve from day-to-day clinical issues (not to mention my job) to be able to prepare in a concise and cogent manner for a presentation of the institutional issues I'd experienced -- across-the-board -- at TCH in the hopes that he would lend my stories credence and attempt to bring about changes to the benefit of all.

Still, TCH was not done for the evening. A full forty-five (45) minutes after hanging up with Dr. Jefferson with the clear understanding that the procedure was off, I received a call from Stevie's most-thankfully, attentive nurse. They were taking Stevie to the operating room. They were taking Stevie to the operating room now. Had she not perhaps overheard that I had revoked consent?

Good God. At the end of it all, 18 calls had been placed and received between various parties at TCH and myself to sort out what should never have required sorting. I would rant further, but lack the energy.

THURSDAY, 5/15/03

Stevie remained stable (at least within his condition parameters) last night. The ultrasound test did not indicate any fluid buildup around his lungs -- as opposed to the unwanted fluids that continue to produce within his lungs. So, no chest tube was needed. This avoided an invasive procedure, but also closed the door on one possible explanation for his ongoing inability to retain oxygen. The plan is to attempt to surgically implant a central line today, as he has few veins (including his jugular) that have not yet been tapped. Once tapped, due to the caustic nature of some of the many medicines being administered, these veins quickly (sometimes within 12 hours) develop swelling to an extent that they are no longer viable for intravenous administration of fluid and/or meds. In a critical patient, the importance of number, quality and/or volume capacity of fluid "ports" that are open and viable is acute. When a troubled patient arrives in ICU, intravenous access is among the very first thing you'll see the team adress -- and an item that immediately becomes concern number-one if the transport or ER teams have insufficiently dealt with this issue. While we have some miraculous medicines available, none yet work by simply waving a vial over the patient and uttering an incantation -- at least in Western medicine.

A side note, but one of interest: I recently read of a young Chinese patient who had been brought to ER with neck pain following a fall during ice skating practice. She was diagnosed as o.k., then released. This, over the stenuous objections of the father who, after a local shaman had rubbed some coins together and chanted, placed his hands on his daughters neck and argued that "No, she not o.k.! Her neck broke, raht here. Raht here, doctor!" Later, after she had been sent home, a coincidental, second look at her x-ray indeed revealed a dangerous, potentially paralizing and life-threatening "hangman's" fracture in her neck -- exactly at the point the father had indicated. Luckily they found, transported and treated her before anything horrible happened. Out of curiousity, the physician scanned the charts for the father's background. He was an immigrant chicken farmer. That doctor professed, at least in his book, to have learned an important, life-long lesson from this episode: Listen, consider and give carefully measured weight to everything you hear regarding a patient and those closest to them.

Personally, I have long ago lost count of the brusk, patronizing dismissals of information we have offered to doctors of all specialties -- information that would later turn out to be precisely on the mark. However, among these frustrating individuals, there are many, gifted care providers who do listen and act -- or explain why they won't or can't -- accordingly. Someday I will attempt make a specific list of all these names. In the meantime, my deepest gratitude to all who rest within this group.

WEDNESDAY, 5/14/03

At last, mom and I were both well enough to go to the ICU last night. On arrival, we discovered that during shift change, Stevie had "tanked," again. His O2 had suddenly, inexplicably, fallen dangerously into the low 60% range. They'd "bagged" him, a term and procedure I'm sure many of you know from the NBC show, "E.R." He was suctioned, given additional O2, etc., but the only action that achieved results was increasing his PEEP to 12 and holding supplementary O2 at 90%. He then was able to maintain blood-oxygen saturation levels in the low 90% range. Clearly, we are not moving in the direction that we would like.

Today, they are looking for causes of this setback, primarily involving potential fluid buildup around the lungs, i.e., in the space between the tissue that encases the lung and the tissue that lines the chest cavity. While such "pleurisy" could be brought about by his ongoing infection(s), I find the condition suspicious of additional issues given ongoing, high PEEP levels. An ultrasound will be performed to make a determination and the introduction of a chest tube into the pleural cavity may be necessary to relieve pressure, be it from reactive fluids to infectious irritation, or from blood, secretions or even air escaping from a potential breach of the lungs themselves. In any case, should a chest tube be necessary, it would add yet another potential set of complications, one more open port in his defense system inviting the abundance of infectious agents that seem to linger about, eagerly waiting for such opportunities.

Yesterday was one of those bleak, black days internally, as my journal entry and spontaneous poem no doubt suggested. I've regrouped once more and am resolved to fight -- to fight for Steven James and no one else -- be it alone or beside others, but inflexibly against anyone who stands in the way of what is ultimately best for him.

Finally, we tire, as Steven must, of the invasive and inevitably injurious remedies that are taken in the best current judgment on his behalf. Surely, a century from now, these same remedies will seem as arcane and inhumane as many medieval medical practices seem today.

TUESDAY, 5/13/03

Stevie has been in a precarious balance for so long this time that I feel like we've all entered some nether world. The news, the events, the days come together in pieces, sections of broken glass that don't quite fit together as they should -- and the world presents as a surreal, fun-house mirror. Somewhere amidst the fragments of passing minutes is the knowledge that we may soon cross a line.

tracheostomy is a necessity for long-haul, high PEEP patients. This is sometimes a cruel but necessary procedure for those who may eventually recover or, like Christopher Reeves, enjoy some measure of fulfillment in an otherwise compromised life. It is difficult to envision either of those outcomes realistically fitting into Steven James' story.

While there will perhaps be some consensus as to what should be done under the scenarios that we face, the decisions, consensus or no, are profoundly oppressive -- even though they have been known, vaguely accepted considerations to us all for months, perhaps years. To weigh moral and ethical medical issues about one's child from a compassionate and logical standpoint is conceivable. You trace the steps, the options, the odds, the potential for miracles -- and then reach your own, so-very-private conclusions. While stunningly difficult, this step is comprehensible. It is acting upon these conclusions, however, that remains utterly unfathomable to me. In spite of what all of us who love Steven James have been through to date, I cannot begin to grasp what forces might come to bear, what immutable changes within and about us could come to pass should we have to speak, with tremulous conviction, wishes that may run contrary to the most powerful and innate forces that any human being may possess.

I have been to that place where the sun does not shine
The ocean lies murky and still
No wind or breeze or gale blows there
A blank, leaden sky bespeaks ill.

This place has no clocks, no signals about;
Time is a comfortless dream.
Yet I sleep and I wake and I walk and I sleep
But to find myself back there again.

MONDAY, 5/12/03

Discouragingly, the clinical picture has not changed over the weekend. High fevers prevented the procedure to introduce a permanent central line. His temperature today at noon was 101.6. They have temporarily placed a PIC line into his arm to get needed medicines in his system. More cultures to determine what else he may have picked up through the many necessary holes in his first line of defense, his skin. It seems to be an arcane game of cat and mouse -- a game where the mice have an advantage in both numbers and stealth. We know they are there; they leave bits of evidence, old and new, in his symptoms.

I jinxed myself by touting my own good health, and have succumbed to the infection that most other family members have been dealing with. It's yet to hit me with force and, if will has any bearing, will be brushed aside with dispatch by my immune system so that I may again sit by his bedside.

We will take full council soon on what, if anything, remains in the medical arsenal that might reverse his situation.

FRIDAY, 5/9/03

Again, no substantial change in the clinical picture today. Sunday is now the targeted day to implant a permanent central line -- although we have not yet formally been asked for or given consent to this surgery, both a prerequisite for the procedure.

I believe I neglected to note that Stevie's wean to a PEEP pressure of 9 failed, as it was so very short lived. Within hours after dropping the PEEP, his O2 levels again desaturated to unacceptable levels. He's currently at his long-standing pressure of 10, and it's often necessary -- particularly in the evenings -- to increase his supplementary oxygen to 70% from 60% in order for him to maintain O2 levels above 85%.

His blood cultures continue to produce gram-negative rods (indicating an internal, bacterial infection) and fevers from 99-101 degrees remain the norm. I don't have a real read on what a consensus, short-term prognosis might be as, again, I don't think anyone knows. However, the fact that he has been quite "stable" at a level where stable is not necessarily a good thing in the long haul is, I gather, leading to the discouragement expressed by some of the staff and, certainly, to that same discouragement that is intuitively felt by family members.

Having taken the 2.5 days rest from work pressures (for which I grossly underestimated my need), my chin is back up, my shoulders are re-squared and I've got my gloves back on and tightly laced. All that, of course, is at least where I am today. Now I can simply wait to see if there will be anything to swing at on Stevie's behalf, or if we'll catch a sucker punch from an unexpected direction.

Mom (mine), still battling her own respiratory issues, be they infection, allergy or asthma related. Unfortunately, this has prevented her from being at the hospital and seeing Stevie. A small prioritization issue in the grand scheme that we'll monitor and attend to as is appropriate.

THURSDAY, 5/8/03

No change in condition today. Dr. Jefferson noted lack of respiratory improvement as "discouraging." Saturday they plan to implant a "permanent" central line. The term permanent is really a misnomer, but the risk of infection is less than a standard-insert central line. The downside is that this is a procedure that must be surgically performed.

WEDNESDAY, 5/7/03

Today marks three weeks of in-and-intubated condition, as I call it. Compared notes with his last hospitalization. At three weeks following admission, he still remained on a respirator (PEEP of 7 at that time) and was receiving blood pressure support, but was making slow, steady progress. The concern this time around is that he managed to wean off the blood pressure support medicine rather quickly, but his respiratory situation hasn't shown linear improvement.

Stevie currently faces a multitude of infectious, neurological, muscular and respiratory issues that are too involved to detail here. In my mind there is only one question that ultimately matters. Will Steven be able to sustain himself without a respirator? There are differing visions as to why this has been such a hurdle for him, particularly between his neurologist, Dr. Clark, and the head of critical care, Dr. Jefferson, a renowned pulmonary expert. I suspect both are ultimately right in their fashion and that a combination of conditions are contributing to his difficulties. I continue to be grateful that we have Dr. Boline as his primary pediatrician to help us put all the pieces together into a cogent, although understandably hazy, picture.

They have reduced his PEEP to 9 and left him on Vecuronium. Ironically, at least at the moment, this is in concert with the strategy the nurses, RT's and I asked be considered following his second of three, failed efforts to wean (see entry on 4/30). So, we will shortly see how he fares.

I do need to note that I feel more positive about the care than I did when the 4/30 entry was made, a time when we were being left in the dark in spite of objections and questions. I was subsequently able to conference with Dr. Jefferson, and he spelled out the many issues that the various moves present given Stevie's poorly understood, underlying condition. Unfortunately, bringing that conference about -- which would have been unnecessary if the attending at the time (Dr. Stein) would have given me 60 seconds of his time -- required some extraordinary measures, phone calls and favors from friends with the right connections. Given a different time and less immediate concerns on my hands, I'll try to address some of these ongoing, like issues that I've routinely encountered at TCH at the highest levels necessary. I do believe the institution as a whole is intent on providing the best possible care, and they are very responsive to complaints -- if the complaints reach the right parties. Unfortunately, not all parents have the great fortune to have some of the contacts that, truly by luck, I happen to have. I've generally left out lengthy descriptions of the almost-political maneuvering that has often been required to achieve simple results, but I've determine it best to begin some documentation of same in this public forum.

I took another vacation day today. Although I had mixed feelings about doing so, I believe this was prudent as I feel more emotionally rested. To editorialize in fancy, philosophical terms, this waiting game seems to be a sort of timeless limbo, purgatory or other temporal plane short of hell. In modern English vernacular, let's just say it sucks.

TUESDAY, 5/6/03

No real changes today. Stevie's fever has been up and down. No alterations to respiratory care. For myself, work has generally been a tonic or, at least, a distraction. However, I'm now finding it difficult to concentrate on simple tasks. I will probably take a few additional days off. Mom has, most thankfully, decided to stay in town indefinitely pending some sense of direction or resolution to the current issues.

MONDAY, 5/5/03

Stevie had a fever yesterday and cultures returned a gram-negative infection in his central line. His temperature ranged around 103 this morning in spite of antibiotic treatment and Tylenol. Additional cultures have been taken to determine if other infectious agents are present. The situation will likely prevent any new attempt to move forward on the respiratory front until the infection and associated fever are better controlled. I took an impromptu vacation day and am home today as the weekend was draining.

SUNDAY, 5/4/03

No changes in Stevie's condition or the planned course of care today.

SATURDAY, 5/3/03

Stevie continues to have distressing difficulty weaning from dangerously high respirator pressures. Medical options are limited. Considerations in coming days may present extraordinarily difficult scenarios.

FRIDAY, 5/2/03

7:00P -- Scratch the progress described at noon, below. His oxygen levels again dropped into the low 70% range and couldn't be increased via suctioning. His PEEP is back at 10 and he is on Vecuronium again. I thought I already saw "Groundhog Day." I thought I already saw "Groundhog Day." I thought I already saw "Groundhog Day." Unfortunately, this one's a real nightmare.

12:00N -- Myoclonic twitches continue and all seizure medicines have been adjusted upwards. Hopefully they'll be metabolized smoothly and his neuromuscular symptoms will subside. The respiratory pressure has been lowered to seven, and the machine only gives him twelve breaths a minute, down from twenty at one point. This means he now must (and does) take several breaths a minute on his own. The monitors show many things: tidal volume, flow, pressure, etc., so if you know what to look for, you can graphically see the clean and regularly shaped machine breaths vs. the ragged, shallow ones he takes on his own. Respiratory secretions are increasing dramatically in concert with his alertness. He needs to be suctioned often now to keep his oxygen levels acceptable and he does not, unsurprisingly, like it. I spent the night after all and talked to Dr. Boline this morning. He's on the mend at the moment but, in Dr. Boline's words, still "very, very sick." Amazing how one can be so sick, yet so very well in a comparative sense to recent days. Another weekend is here, yet I think we scarcely remember the week passing.

THURSDAY, 5/1/03

The myoclonic twitches we so dread began again last night. These began, as they do typically, in his right shoulder. Eventually they appeared to become genuine seizures, although it's difficult to determine as he's so heavily sedated. While his seizures often don't register on an EEG, these did. Also unusual, the measured activity was specific to the left side of the brain. This was the first time single-lobe activity had been caught on paper for him. The clonis and seizing, to state the obvious, is cause for concern. First, once his clonis, or tremors, begin during hospitalization, they often take months to resolve. Secondly, the seizure activity really shouldn't be happening given that he is receiving his regular, control medications plus heavy doses of Versed and Fenatyl due to the intubation. He should have more than ample chemical protection against this activity. As several of these medications must be reduced in order to extubate, there is danger of continuing and, possibly, more significant seizures and complications in the days ahead.

On the upside, his ventilator pressure was lowered to eight today. His oxygen is holding, but in the 85-92% range. While there are kids with cardiac problems who are out running around on playgrounds with such levels as their norm, Stevie has other impairments. The repeated and severe respiratory bouts have likely damaged the lungs and created significant scar tissue. Then, too, are the many issues he's had with his blood system: insufficient clotting factor, low platelets, low blood pressure and a general inability to hold O2.

I have to say it literally made me nauseous with dread and sympathy to look upon him last night. He lay there, little body filled with tubes, lines and monitors, vaguely aware, eyes opening now and then, mouth and tongue moving, feeling around the respirator tube -- and the twitching in his arm that was significant enough to cause his head to pull to the right with each contraction.

I'm going over shortly (it's about 8:30 p.m. here) and may stay the night. I've been trying to conserve energy for times when he may be more aware. I'm of no comfort to him right now, as it's best not to touch or talk to him in order to avoid rousing him. Doing so could cause him to become agitated and begin 'bucking' the respirator, bringing about another setback like those he's endured in recent days.

Still, I feel as though I'd like to listen to the thoughts of the doctors on their morning rounds and those of his wonderful pediatrician, Dr. Boline, who visits about 6:45 each morning. Then again, I may come home, for I know there is nothing they can tell me -- although Dr. Boline has a way of coalescing the myriad thoughts that race through my brain into a single, cogent picture. All that fancy prose aside, I'm afraid I have "the picture" as clearly as one can, but can bring myself to consciously focus on it only so often. Hoping for better things tomorrow.

WEDNESDAY, 4/30/03

The weekend and early part of the week provided more "ups" and as many "downs." Saturday, his PEEP was lowered and the Vecuronium removed again -- the latter over our objections. He had not done well with an identical course the prior week. Per usual, objections were ignored and results were (predictably) as we feared. His oxygen levels dropped rapidly and (how many times can you say "deja vu") he was put back on Vecuronium and the PEEP had to be elevated higher than it had been before. Three days progress out the door. Now, two days later, the PEEP is back to Saturday's levels and, you guessed it, they are again removing the Vecuronium. It's notable that in each of these instances both the nurse and respiratory therapist on duty strongly felt the Vecuronium was being removed to soon.

The drug has been dropped with Stevie's PEEP levels at 10, 10 and 9, respectively. The RT's (respiratory therapists) seem to concur that they generally don't like to see Vecuronium removed above levels of 7 or so. While each time the move has been explained as justified due to differences in his blood gas results, it doesn't seem to take so much as a G.E.D. to figure out from recent history what does not work for Steven James, textbooks be damned.

If we see this same course of negative progress for a third time, I guess I'll have to formally file for a review of his recent treatment higher up the food chain -- which I tire of doing. The care changes radically depending on which attending doctor is working on any given night with little attention given to continuity. In my book, an odd way to run a railroad, not to mention a critical care ward. Unfortunately, this stay, we haven't been blessed with any residents who seem to have a natural calling for pediatric medicine, i.e., try actually listening to the parents from time to time. I'd have no idea how long he'd been in if this weren't a Wednesday, as my own time clock comes to a halt after a night or two under hospital fluorescence. However, "Wednesday" tells me that the in-and-intubated figure is now at two weeks and counting.

FRIDAY, 4/25/03

Stevie showed some improvement in his oxygen levels yesterday, and they've begun to wean the pressure on the respirator. Still, his x-rays show no improvement (his right lung continues to show almost no air movement and the left lung doesn't look very good, either). This will mean that they will cautiously try to bring respirator settings out of the "dangerous" zone, but will not contemplate extubation until the pictures improve. There was less blood in his urine yesterday; no cause for this bleeding was determined. His temperature has been better, although he climbs near or over 100.0 in the evening and night hours. Finally, they have removed all blood support meds, so he's holding on his own, albeit with the aid of several, robust blood product infusions.

The weekend is upon us, so there will be more time to spend with him. Also, it allows more time to mentally focus on his condition. I've found weekends less physically stressful but more emotionally stressful than workdays. The mind seems to do "catch-up" processing of the reality of what has transpired in the harried, blurry moments of the weekdays past. Mom was scheduled to depart shortly, but is leaving her travel options open awaiting more indication of his ongoing status.

TUESDAY, 4/22/03

Stevie continues to inadequately oxygenate despite measures taken yesterday. The PEEP level has been increased to 15. Additionally, his paralytic drug dosage was increased and another antibiotic added. We're awaiting results of an echocardiogram to determine if there are now any issues with his heart that might be contributing to the persistent blood pressure and oxygen issues. Additional cultures of blood from his central and iv. lines as well as sputum from his lungs and tubes were taken. His maternal family (mom, sister, grandmother) are all home ill with a nasty respiratory bug or flu and are unable to visit. Somehow, I've yet to get sick at any time when he's been in the hospital regardless of who was ill around me. I'd knock on wood for even saying that, but I'm not sure I don't honestly believe that I utterly refuse to get sick when he's down. More to the point, I just wish I could give him some of whatever it is that's luckily kept me healthy.

MONDAY, 4/21/03

We've experienced some setbacks. Steven wasn't maintaining adequate oxygen levels yesterday and a number of remedies were tried. His sedation was increased (perhaps he was too restless?) and his PEEP levels were raised (perhaps they'd tried to wean him too fast?). These actions helped, but only somewhat and temporarily.

Over the last 24 hours, we repeatedly walked in to find his O2 saturation levels holding in the mid 80% range (not good), each time to be told that "this just started right before you arrived." Our confidence in his nurse was not great, as we had noted her coworkers had to show her how to perform basic math calculations involving body weight and medicine dosages. My take, biased or not, is that anyone who can't handle simple division (on a calculator, no less) likely lacks the requisite I.Q. to work in an ICU ward with precariously ill patients. Perhaps my judgment is harsh, but on the fourth such occasion it was obvious he wasn't being sufficiently watched and a consult was demanded. We knew from his prior x-rays that he had pneumonia in both lungs and in all lobes, not typical for him as he generally seems to retain one lung in modestly decent shape. A stat x-ray this afternoon revealed that, in addition to the generalized congestion, his lungs are now filling with fluid. In response, the PEEP was again raised (he is now at 11 vs. 8 yesterday morning) and the paralytic agent, vecuronium, was reintroduced as at high PEEP levels (10 and above -- 18 is maximum), movement of the patient can cause ruptures in the membranes of the lungs. Lasix is being administered to help flush the fluids from his lungs and body. I didn't feel he was particularly bloated this time, so I am concerned about the underlying and unidentified cause of the focused, pulmonary fluid buildup. Additionally, he began spiking higher fevers today.

Stevie has never been out of critical condition this stay, and he's now again moving into a zone that they choose not to name -- but brings about notably more attentive and "rapid response" care. We've been here before and, by all accounts from those who have cared for him, he is a particularly vigorous fighter. So, we will, to state the obvious (and as if there were another option) await what the next hours and days bring.

On a somewhat more positive note, we all seemed intuitively more worried about him than usual yesterday, so mom canceled her flight home at the last minute until a better picture of his condition and course emerged. We are most relieved that she made the prescient call to stick around. He's got supremely solid family support around him right now between mom, dad and both grandmoms.

SUNDAY, 4/20/03

Little substantive change to report. I've recounted the ugly, day-to-day and nonessential details of this routine many times on these pages before, but don't seem to be in the mood to do so again today. Perhaps tomorrow. Mom flew in on Thursday from South Dakota and "Uncle" Winston flew in on Friday night from New Mexico for moral support. They depart tomorrow and tonight, respectively.

THURSDAY, 4/17/03

Yoga Berra's "Deja vu all over again" quotation echoed through my mind last night when I returned to TCH. In a virtual reenactment of the last hospitalization, I left Steven looking reasonably good about 5PM yesterday to pack an overnight bag so I could stay with him. When I returned two hours later, I learned we had not been allowed back into ICU to see him yet. I knew this wasn't good, but grew even more concerned when I was directed to a "family room" to consult with the doctors. I then learned that, during my brief absence, Steven's respiratory picture had grown rapidly and dramatically worse and that he had suffered a sudden and severe loss of blood pressure.

The relatively alert, even playful little boy I'd left had been intubated (and, I gather, resuscitated at least once) and placed on several blood pressure support meds. They were now asking for permission to give him a transfusion as his blood was simply not oxygenating. His "stable" status had changed to "critical," and there was question as to whether we were in for a long night -- or a short one -- as they worked to save his life. They did eventually stabilize him, but only with high PEEP settings on the respirator, several transfusions and numerous supportive drugs.

Several consults with the doctors were had this morning to point out the many counterbalances that exist with his current situation and extensive medication and the new meds and procedures he is dealing with. At this point, there are so many considerations, that we are the best, quick resource the doctors have regarding his treatment. To glean the same amount of historical and current info that I can give in a five minute conversation, the docs would have to literally read through his file -- a stunning document consisting of multiple, 10-inch thick piles of paper. I am glad I am nearby and able to help in this way -- it makes me feel perhaps a little less helpless, although in reality I am completely so. Still, at least I am of some use to those providing him care. Also, it is fortunate that several I saw on the ICU floor this morning have treated him before and, therefore, have some of the same history that resides in my head in their own, as well.

So, Steven James is again in critical condition and the coming days again offer an uncertain resolution as he tries to fend of the sepsis, the infection that rages throughout his body. On a note that may not sound positive to all, his pediatrician did agree with me that a tracheostomy should be avoided, period. We (his pediatrician and I) feel that such a move would dramatically decrease the quality of his already enormously compromised quality of life -- even though it might prolong it. This gave me great relief to learn that this decision did not necessarily legally rest in the hands of the critical care doctors, but in the hands of Dr. Boline (the pediatrician), his mother and myself.

I had a long discussion with his pediatrician about a realistic prognosis. I was told that many of these kids eventually pass away quietly in their sleep -- we have just fortunately caught the illness and brought him to ER, twice, in time. Still, I must emphasize that there is hope, especially in an "undefined" mitochondrial situation. Some of the defined, yet poorly understood mito diseases actually may turn around at some point and eventually disappear altogether. Of course, any secondary damage done in the meantime would likely remain.

My mother is flying in tonight given the uncertain outcome. Her presence, as always, we be a great comfort. I am doing reasonably well today, but rather know what to expect of my own physical and emotional state should this situation draw out across days, weeks, months. While I am better able to prepare for these roller-coaster rides and juggling acts, they do not, like so many other things, become easier with practice. In fact, I find each episode more challenging and difficult than the last. For those visiting who are facing such situations, perhaps in earlier stages, please feel free to write to me for any advice or words of support I might humbly offer.

WEDNESDAY, 4/16/03

Steven was admitted last night and is currently in the pediatric intensive care unit at Texas Children's Hospital -- for the fourth time in eighteen months. He'd been experiencing increased congestion for the past ten days, but was placed on antibiotics a week ago, monitored carefully and seemed to be doing o.k.. Today I received a call that the situation had changed and I headed over to the house. He had developed a fever of approximately 106F and was, naturally, utterly lethargic and was having quite a bit of difficulty moving air into his lungs. We navigated him through heavy traffic to the ER, where he escaped intubation my a close margin thanks to his extremely positive response to Motrin and IV antibiotics. I've now run home to start the routine all over: update this page, throw clothes, toiletries and medicines in a bag, try to figure out how to cover work and head back to TCH for an evening bedside with SJ and a night in an armchair in the PICU waiting area. He looked pretty good when I left, but I know better than to try and guess at how long our stay will be.