September 14, 1999 (3:31 pm):  Gregory went to heaven peacefully at 3:31.

September 14, 1999 (3:25 pm):  The doctor is in with Greg, and is turning the ventilator down now.  The family is all with him, and he is resting peacefully.  I have been with Greg throughout, and I wish to remember him during the smiling days, so I have chosen to excuse myself at this time, as I don't want this to be my last memory of him.

September 14, 1999 (1:30 pm):  The doctors have told us that Greg is showing signs of sepsis, and that even if his lungs were his only problem, he could not survive.  He never wanted to be on the vent, and his last request was "Please promise I won't wake up on a vending machine."  The doctor had joked that he would be on a respirator, but if it was a vending machine, would he want a Dr. Pepper.  Greg had said "No, Surge".  It is apparent now that he could never get off the  "vending machine", and for this reason, we have decided to turn off the ventilator and let him die.  We do not believe he would want to wait for hours or days for his heart to give out, or other organs to fail, and we do not want him to suffer during a long wait.  We have notified the nurses of our wishes, and they are paging the doctors now.

September 14, 1999 (7:00 am):  Greg's still hanging on this morning.  His lab values are much worse than yesterday, and his kidney function is completely gone.  His potassium is dangerously high at 7.5, and will likely stop his heart as is continues to climb.  They did give him platelets this morning, so he wouldn't bleed internally.  His white blood cell count is up to 24.4, which is high.  He's sedated, and relaxed, and I'm sure he's not feeling any pain or awareness of what's happening.  

September 13, 1999 (9:45 pm):  Greg's oxygen has been reduced to 60%, and his blood O2 saturation is 92-93%.  Otherwise, no changes.  I think this may be the calm before the storm.

September 13, 1999 (6:15 pm):  I didn't want to leave everyone hanging, but nothing's changed except that his oxygen has been reduced to 80% and his blood O2 saturation is 94%.  They also removed the stomach tube that went in his nose (yeah).  

September 13, 1999 (12:40 pm):  Greg's cardiac monitor continues to show changes, and he's starting to have some pauses between beats.  His oxygen has been turned up to 100%, and his blood oxygen saturation is only 84%.  The doctors have asked us if they could examine his lungs after he dies, to gain a better understanding of what has happened, so that perhaps what they learn can help someone else avoid or minimize this situation.  Of course, we agreed, and asked them to make their findings available to other researchers as well.  

September 13, 1999 (11:10 am):  They're keeping the ativan drip on because it's because it's becoming more & more apparent that he's not going to make it through the day, and there's no point in letting him be unsedated.  They changed attending doctors (Why?  Does that matter now?).  They're discontinuing all the meds except for comfort meds.  His temp is 102.  His cardiac monitor continues to change from hour to hour.  

September 13, 1999 (10:10 am):  Greg's cardiac monitor is showing changes, and his heart is trying to quit.  I don't think he'll make it through the day.

September 13, 1999 (9:00):  Greg's kidneys have completely shut down.  They said that he probably only has another day or two to live.  They can put a Quintin dialysis catheter in & perform dialysis, but that would probably only give him an extra day or two.  I told them "No, he's been through enough".  He hasn't moved or flinched for several days, and I'm not convinced that he would if they turned the ativan (anxiety/sedation) drip off, so they said that they would turn it off & see if he wakes up or not.  If he does, they'll turn it back on, so he doesn't have to be aware of this experience, but at least we'll know where his level of consciousness is now.  I left for a while last night, but I never did do anything, & I came on back, but at least I got out for a bit.  One of my sisters came last night, and my other sister, her boyfriend, & my mother and stepfather are coming today.  Terry's here also.  Greg's other lab doesn't really matter anymore, but it's all worse, and he got more platelets today.

September 12, 1999 (11:15 am):  The doctor's used the term "multi-organ system failure" today.  They're making some changes in his meds to try to fine tune things.  They're changing his B/P med from catapres to an ACE inhibitor called captopril, which works in a different way.  They're starting him on a renal dose of dopamine to help his kidneys make more urine.  This part scares me.  They're holding his cyclosporin (anti-rejection drug) for now, even though the levels were in the right range yesterday, because it's hard on the kidneys.  They'll check the cyclosporin level tonight and every day or two, and restart it if necessary.  They said it'll take a couple of days to clear his body.  (That means it'll take a couple of days to get back in his system when it's restarted).  I'm curious how that's going to affect his B/P.  He was always 90's/60's before all this, but with the cyclosporin, he's been 120-160/80-100.  His heart rate has been running around 105-115, but the dopamine drip will likely increase that.  His oxygen is at 80%, with saturations of 92-94% right now.  I'm thinking of getting out of here tonight or tomorrow for a break, and go to a movie or somewhere with Donna.  The staff here keeps telling me how tired I look. 

September 12, 1999 (3:15 am):  Lab results are in.  Greg's White Blood Cell count is a tiny bit high at 14.2.  His hemoglobin is a tiny bit low at 8.9, so he's going to get some blood.  His platelets are also low at 18, so he'll be getting those as well.  His BUN & creatinine (kidney function) are way up at 136 & 3.9, so that's not good either.  Last, but not least, his liver labs are going upwards as well, with a bilirubin of 1.3 (normal is 0.2-1.3), SGOT/AST at 172 (normal is 7-40), and alk phos at 534 (normal is 70-230).  I'm not really sure what those last two mean, and my nursing books are at home (I couldn't find a lab book here).  No changes in Greg's oxygen status since the last entry.  Good night.

September 12, 1999 (12:45 am):  Thanks, George, for posting the message on the website, and helping me get Greg's computer back.  To everyone else, the computer went completely down, and I lost all files, including my saved e-mail letters.  I had intended to print them out for a scrapbook, but had never done so yet.  If you still have letters on your computers, could you please forward them to me?  I would greatly appreciate it.  Also, I had everyone's e-mail addresses, home addresses, phone numbers, etc... stored on the computer, and I lost those as well.  

Greg's lungs are getting stiffer, and somewhere along the way they started using the term ARDS (Acute Respiratory Distress Syndrome).  He's not maintaining his blood oxygen saturation very well, and they've had to increase his O2 to 90% to keep his sats at 91-93%.  They turned his paralyzer (nurcuron) off yesterday,  but he's not moving at all this last day.  I'm hoping it's just a combination of the ativan (for anxiety) drip & the demerol, but I'm not sure.  He just doesn't look very good to me.  Lab has been drawn, and the results are still pending, so I'll let you know.  He started getting some serosanguinous fluid (thin blood-tinged) out of his chest tube, and since there was originally only air around the lung, which was sucked out when they put the tube in, I'm not sure what that's all about, and I never did get a good answer on that question.  Basically, I got an "I dunno" answer.

September 11, 1999 (6:30pm): This is George and this is a note to say the September's computer is down at this time and the modem is not working either so that she cannot receive e-mail or update the web page . If you need to reach her the telephone number is 405-271-8290. (Conference room). Greg's room is 405-271-8193. Right now his oxygen is at 70% and his sats are at 91%. So far there are no other changes to note.

September 11, 1999 (12:15 pm):  Greg worked hard for air, and they slowly increased his O2 to 100%.  I complained most of the night that I thought he needed more PEEP, as I felt it had been turned down too much too fast.  This morning, I noticed that it had been turned up to 16, and he was breathing MUCH easier, and now the O2 is at 90%, and his saturation is 94%.  They told me he had a difficult episode early this morning when a clot (blood?  mucous?) plugged his airway, but they suctioned it out.  The nurse has been giving him his Demerol, because he occasionally has tears coming from his eyes.  He's still pretty snowed with the Ativan increased to 7 mg/hr, but he moves a little every so often.  His BUN & creatinine (kidney function) are worse at 119 & 2.8, so they discontinued the IV nutrition & vancomycin, as they can be hard on the liver & kidneys.  Greg's temp is about the same, 99-100.4.  Overall, I'm feeling better about the vent settings, and his comfort level.  Also, I'm not as cranky as I was last night.  Sleep does a body good.

September 11, 1999 (1:20 am):  After discontinuing the paralyzing agent and reducing the PEEP (vent setting that forces the oxygen into the lungs) from 18 to 12, Greg's blood oxygen saturation level has slowly decreased, and they're slowly increasing the delivered oxygen.  They've gone up from 50% to 90%, and his saturation is currently 93%.  As he's waking up, he's using his abdominal muscles to breathe, and his body is requiring more oxygen.  His temp had returned to normal, but now it's back up to 100.4.  His urine has a little less sediment, but it's still looking a little concentrated.  He looks tired, but maybe it's because they still have the ativan drip going.  They hadn't given him any Demerol while he was sedated, but they've started giving him some again, just in case.  

Okay, I'm going to switch gears here.  I've been careful about what I've put on the website, picking & choosing what to put on and what details to omit, as some of Greg's caregivers are reading the website, and I've been afraid that writing what I'm feeling one day might affect Greg's care for many days, if someone took something personally.  However, the incident Tuesday night has been eating me up, and I finally decided that I'm tired of having to worry about what everyone thinks.    I don't read their charts & notes, so I don't have the same privilege, but I can't keep worrying about that.  

Monday night, Greg was still bleeding whenever they suctioned him, and I was thinking about Greg's short body and the long suction tubing.   I asked the respiratory therapist if there was any way to measure how long the tubing should be for Greg's size, and if there was any way to cut it shorter, like they do at my hospital.  He told me that it couldn't be done while keeping the tubing sterile.  Early Tuesday when he started having bright red blood in his suction tubing, I asked the respiratory therapist to measure Greg's distance from the opening of the oral vent tube down to the carina, where the tip of the suction tubing should stop.  He told me Greg measured at 36-37 cm, yet the tubing is over 40 cm long.  Since then, I have been telling everyone not to shove the suction tube all the way down when they suction him, and they finally quit doing it after his bleeding episode Tuesday night.  When it happened, his hands had been unrestrained, and I had stepped just outside his door for a moment.  He had started coughing, and I was in there pulling his hands off the vent tubing by the third cough.  Today, I learned what I suspected, that they were blaming me for the bleeding, because I left his hands unrestrained.  However, one of the doctors had told me that the bleeding had been getting worse all day, and that his grabbing the tube was a symptom of him choking on all that blood, and that the respiratory distress would have happened anyway.  Perhaps then, pulling his tube out a couple of centimeters drew attention to the problem early enough to save him.  Anyway, I'm tired of feeling like everyone's blaming me for that incident, and I just want my son to get well.  I'm angry about having to make a DNR decision for a 14 year old boy, and I'm getting tired.  I'm starting to feel detached from him, staying in this conference room, only getting to see him for a few minutes at a time, because his heart rate goes up & his oxygen level goes down when I talk to him. It's 2:00, and I'm getting cranky.  Good night. 

September 10, 1999 (4:15 pm):  They switched gears, and turned off the tranquilizer, and decreased the ativan  (for sedation & anxiety).  He's moving a little, but he's still pretty snowed.  His hands have been restrained again, and he's opening his eyes a little.  He's coughing some, and since they removed the bite block last Tuesday night, his mouth isn't dry anymore, and it's full of saliva, so I'm hoping he doesn't aspirate anything around the tube, & get pneumonia.  They moved his PEEP down to 12, and he's keeping a blood O2 saturation of 92-95%.  So far, so good.  We got a call a couple of days ago from country music singer Mark Wills, who was in Washington to perform a benefit concert for physically challenged individuals, and to pay tribute to those who have been discriminated against because of their physical differences.  He had heard of Greg's situation, and called to see how he was doing, and to let us know Greg was in his thoughts and prayers.  Today, we received an autographed CD and photo, and a letter telling us he dedicated his concert to Greg that night.  He sings a song called "Don't Laugh at Me", about the pain of being made fun of for being different, and how ALL of us are different.  It made me cry, because it reminded me of all the times Greg was picked on at school.  Anyway, I feel honored, and I know Greg will too, when he's awake enough to hear it all.  

September 10, 1999 (10:00 am):  His blood oxygen saturation's 98% on 50% oxygen!  They're going to change some other vent settings today, and see how he tolerates it.  Because of his lung's stiffness, Tuesday night, they started giving him air by a certain pressure (called PIP), instead of a certain volume.  Also, at the end of each expiration, the vent holds a certain pressure of air in the lungs (called PEEP), to prevent the tiny alveoli sacs from closing, so that they don't stick together & fail to reopen with the next breath (called atelectasis).  His current PEEP (means positive end expiratory pressure) has been 18 (normally set at 0-10), and his PIP (meaning Positive Inspiratory Pressure) is set at 20 above PEEP, or 38.  Over the past few days, the PEEP has been a critical element in his oxygen saturation doing so well, as the damaged linings in his lungs are stiff, sticky, and lack their usual protective coatings.  Today's goals are to reduce the PEEP.  With the current settings, the volume of air he's taking in has increased from Tuesday night's 250 ml with each breath (1/4 liter) to today's 400-500 ml with each breath, which is the volume of air they were giving him before they had to switch to the pressure method Tuesday night.  On to his kidneys.  His BUN & creatinine have increased to 89 & 2.8.  His urine output has decreased, & has sediment in it this morning.  They're treating it as being a little dry, and they're going to increase his fluid rate today.   They're also going to adjust his cyclosporin & vancomycin levels.  He got some more platelets this morning.  His other lab is all unremarkable, so that's good news.  Tuesday night, I moved myself out of his room into a conference room next to the unit.  I didn't want my presence to stimulate him and compromise his hemodynamic stability.  Now, there's IV pumps where my recliner used to be.  Instead of being with him constantly, I see him intermittently.  His heart rate goes up when I'm with him.  He's still on the paralyzing & sedating drips, and may be for another week, but if that's what it takes for his lungs to heal, then so be it.    Terry & the kids made it home safely, and I'm glad they were able to come down for a few days.  

September 9, 1999 (8:30 pm):  They moved his vent down to 50% oxygen at 6:00 pm, and he's doing well with a blood oxygen saturation of 96%!  So far so good.  This morning, the pulmonary doctor said "I'd knew he'd be alright.  It just took everybody else a little longer to figure that out".  This afternoon, he said, "I'll see you Monday.  You can take that for what it's worth.  You'll notice I didn't say 'Lord willing, I'll see you Monday', but 'I'll see you Monday'."  Greg's looking good tonight.  He got a little temp around 100.5-100.9, but it's come on down.  He has some very faint, very sluggish bowel sounds!  He's still making some urine.  His liver size hasn't increased.  His fluid balance is good, with no swelling.  He's not out of the woods, but he's getting closer to the edge of the woods.  I made a decision today.  Greg's birthday is December 31st, and he will be 15 this year.  Every year, he has been cheated out of a decent birthday because of Christmas.  He's never had anything more than having one person over to spend the night, because everyone is out of town, so he's never even had a real birthday party.  This year, I'd like to find a way to give him the biggest, best birthday ever!  I don't have any ideas yet, but I've got some time to start planning!

September 9, 1999 (1:45 pm):  They moved the vent down to 70% oxygen, and he's doing well with 93% blood oxygen saturation.  

September 9, 1999 (11:30 am):  They're goal is to move Greg's oxygen down to 60%, and it's at 75% right now.  He's tolerating that well, with a blood oxygen saturation of 95-96%.  They're a little more hopeful today after he had a full day of relative stability.  Personally, I think he looks great today.  I can't explain why, it's just something about the way he looks.  His temperature's up to 100.9.  He's developed teensy little sweat blisters on his shoulders, neck, & head.  Kinda weird, as I've never ever seen him sweat.  He always gets pink & hot, but he's always been dry.  His neck & head are a little sweaty.  Oh well, no big deal.  His daily blood cultures continue to come back negative, so they stopped the gancyclovir today.  They already added vancomycin yesterday, because of his temp, just in case.  Whoo-hoo, his bowels moved!  They're still not hearing any bowel sounds, but at least there's something happening.  So, the plan for now is to keep him paralyzed & sedated for a short time to let his lungs heal & also to minimize his oxygen requirements from activity.    

September 9, 1999 (7:00 am):  Greg's been stable through the night.  His blood oxygen level is 92-95% with the vent giving 80% oxygen.  The doctors haven't made rounds yet, so I'll update more after I've talked with them.  Lab values are all pretty much the same, with some of his electrolytes improving & back into the normal ranges.  His platelets were 19, and he already got some more of those this morning.  They started giving him hyperal (IV nutrition) yesterday.

September 8, 1999 (7:45 pm):  The pulmonary doctor told us that he felt that Greg's lung problems were treatable, although complications were possible, such as further bleeding, another collapsed lung, or more seriously, ARDS.  Acute Respiratory Distress Syndrome is when the lungs become so stiff & non-elastic that they can no longer take in oxygen, release carbon dioxide, are are subject to collapse from the vent trying to force them to take in air.  It is often fatal.  ARDS can result from damaged lungs that have been on the vent long term or with high settings.  However, he seemed optimistic that Greg could get through this, at this point.  We talked with the oncology doctors and told them that we wanted to make sure that our ideas of DNR status were the same as theirs.  We want them to continue to make every effort to get Greg well, but that in the event his heart stops, we don't want them to shock or do compressions, as whatever underlying cause of the cardiac arrest would still be unresolved & another arrest would be likely to recur.  They agreed that that was also their intent, and they would continue to do tests and treat him towards the goal of getting through this.  They felt that his lungs were his major concern, and expressed doubt in his ability to survive this.  So, we're getting different viewpoints, and have to let God show us what His viewpoint is.  He's still making urine with the help of lasix.  They're going to start giving him HLA matched platelets from a single matched donor (or two), and they're working on getting the match & donations going now.  That's because he's not holding on to the "generic" platelets they've been giving him, & they're having to give them so often.  They use the Oklahoma Blood Institute, so if anyone gets a call, it might be to donate for him.  The match doesn't have to be as close as for a bone marrow transplant.  As of now, the vent is down to 80% oxygen, and his blood oxygen level is staying at 92-96%.  Nothing came out when they suctioned his lungs.  Last night, they removed the bite block, a plastic doughnut ring that keeps him from biting down on the vent tube.  His mouth was dried out, but now it's moist again, so we'll have to watch & make sure he doesn't aspirate on saliva pooling in his throat.  Anyway, he's still hanging in there, and tolerating things okay for now.

September 8, 1999 (2:00 pm):  Greg's still hanging in there.  I discussed the DNR status with the supervisor, because I was afraid that someone might interpret it as an order to forgo care, and I didn't want to have an instance of "Don't know, can't treat" in which tests might not be ordered so that no one was forced to have to do something about the results.  He assured me that the doctors wouldn't do that, but that he'd tell them of my concerns, so we could discuss what measures we did & didn't want taken.  They took the bracelet off.  He also said that they don't have a consent form.  

September 8, 1999 (12:15 pm):  The nurse just put a DNR bracelet on Greg's arm.  I asked her why she did that, since the doctor hadn't given me any papers to sign yet.  She said the doctor had written the order.  I asked "You mean to tell me that a doctor can write a DNR order, whether you want it or not?"  She said "I'm sure they have to have your consent".  I asked "Then why didn't they have me sign a consent form?"  She said, "Well, I don't know.  Maybe they do."  Then she proceeded to put the bracelet on.

September 8, 1999 (10:15 am):  The doctor said that he is not optimistic for Greg's recovery, and has asked me to sign the Do Not Resuscitate form.  He said that Greg is not having any bowel sounds, and he may have a perforated bowel.  They have made all the vent changes they can make, and have used all the meds they are able, and if he worsens, there is nothing more they can do.  

September 8, 1999 (6:00 am):  Greg's condition has become critical.  Shortly before 7:00 pm last night, he started coughing up fresh blood.  In his anxiety, he pulled his vent tubing out about 2 cm.  He continued to cough blood while they got an x-ray (to check placement), and his oxygen level started dropping.  They got the tube back in place, but for the next few hours, they alternated giving him oxygen with the ambu bag, suctioning out great quantities of blood, and placing him back on the vent.  They couldn't get the bleeding to stop, and his blood oxygen levels couldn't get high enough.  He received at least 2 bags of platelets and some plasma.  They had to sedate him to get him to quit coughing, because that is stimulating the bleeding.  Also, the blood itself is an irritant to his lungs.  We didn't think he was going to make it through the night, but they finally got the bleeding to stop when they got the coughing to stop.  They aren't suctioning him unless they absolutely have to, so they won't stimulate his lungs.  The bleeding stopped, around 10:00, and around midnight, the drying blood started making his lings stiff & non-elastic.  The only way to get enough air to him was to increase the volume of air from 400 cc to 500 cc with each breath.  They brought another chest tube set-up into the room, just in case his other lung collapses.  His oxygenation seems to be a little better at 6:00 am, but he's still getting 100% from the vent.  I haven't seen all the lab this morning, but the WBC & hemoglobin are okay.  His platelets are borderline at 30, their cutoff point for giving more.

September 7, 1999 (1:00 pm):  Well, we got a mixed bag of ups & downs today, and overall, things are about the same.  His lung has reinflated, and his blood O2 saturation has remained around 95%, so they decreased the delivered oxygen to 50%.  If they can continue to decrease his ventilator settings without any problems, they may be able to remove the ventilator & chest tube in a couple of days.  They said that when he came in on Friday, his echocardiogram showed an ejection fraction of 35%.  That means that his heart was only pumping out about half the normal volume with each beat.  It may have been a combination of the extreme fluid overload at that time, and/or the stress of the low oxygen levels, but they don't think it was actually a heart problem, but more of a response to his body's problems.  They're planning to do another echo later this week to compare.  His urine output has dropped off, and his swelling is gone.  His BUN & creatinine (kidney function) are continuing to rise to 71 and 2.6.  His sodium and chloride are also high.  To treat these, they're thinking he may be volume depleted, so they're changing his IV fluid to D5W and increasing the rate.  That may also help his heart rate, which has been 115-158.  His temperature got up to 102, which would also increase his heart rate.  So far, all cultures have been negative for infections.  His hemoglobin was 8.6, so they gave him some blood this morning.  His platelets were 24, so he got another six-pack of those as well.  His White Blood Cell count was 5.7, still a decent number.  His liver size is unchanged, and his bilirubin was fine at 0.9.  So, overall things are about the same, and he'll just be hanging out on the vent for now.  They've increased his demerol & ativan to every two hours to help keep him relaxed, to reduce the stress on his lungs.  He's still waking up when I call his name, but otherwise, he's just laying there with his eyes closed.  

September 6, 1999 (10:30 am):  Greg has developed a left pneumothorax (collapsed lung) of 15-20%.  He's not compromised right now, but they're getting ready to put in a chest tube to prevent it from worsening.  They'll place a tube through the skin, between the ribs to the outside of the lung in the chest cavity.  They hook it up to suction to help reinflate the lung.  His blood oxygen saturation is 93-98% with 60% oxygen being delivered by the vent.  Room air is 21% oxygen.  His respiratory rate is 20-25 (normal is 12-20) which is better then the admission rate of 40.  He started using his abdominal muscles yesterday afternoon to help him breathe, so he's working a little harder for air, but just a little.  His restraints were off all day & night, but I'm putting them back on in case the pneumothorax worsens and he gets anxious & tries to pull the ventilator tube out.  He doesn't like it, but he understands & is cooperative.  His white blood cell count is down to 6.6, and I was concerned that maybe there was a problem with the marrow, but the doctor said that it's because of the high doses of steroids.  I don't really understand it, but something about the white cells making their home on the walls of the blood vessels, and certain things (like infection) cause them to let go, which raises the circulating number and increases the lab values.  Steroids cause them to go back to the vessel lining, lowering the circulating levels.  He got some more platelets this morning. His potassium was low at 2.2, so they gave him some by IV.  His BUN & creatinine (kidney lab) was 56 & 2.4 (high).  He's still making some urine, so he's not in renal failure at this time.  They're giving him 1/2 can of Boost down his feeding tube (in his nose) every four hours.  At first, it was making him feel too full, but now that the steroids are on board, he's begging for food.  

September 5, 1999 (11:00 am):  Improvement!  Greg's breathing has improved tremendously in the last day.  His bleeding has slowed down to a crawl, and his blood oxygen level was 96-100% through the night.  This morning, they dropped the oxygen delivered by the vent from 100% to 80% to 60%, and his blood saturation level is still 96-100%.  His chest x-ray is improved, and if he continues to improve at the same rate, they may be able to get him off the ventilator as early as Tuesday.  The doctor mentioned this morning that Greg's liver was slightly enlarged, something he noticed when he was admitted Friday, but his bilirubin level was only 0.7 today, which is great, so I don't know what to make of that.  Maybe the start of GVH, maybe stress from having to metabolize the harsh drugs.  I guess we'll have to wait & see.  The official admitting diagnosis is diffuse alveolar hemorrhage, a condition only seen in BMT patients.  It has something to do with damage to the lining of the walls in the alveoli (tiny air sacs) in the lungs, from the radiation treatments, that causes bleeding as the transplanted marrow starts to take hold.  They said that it usually occurs a week earlier than it did for Greg, if it's going to happen, but sometimes it does occur a little later than the norm.  All of the cultures have been negative so far for infections, and they said that the chest x-ray doesn't look like the picture they would get if it was an infection (no cysts or nodules), so they don't think they'll have to deal with.  Sigh of relief.  The swelling in his legs & abdomen is completely gone, and he may even be a little dry, as his BUN & creatinine (kidney function levels) have gone up some more.  What I mean is that if he's dry, the blood may be concentrated, making the lab values have a false high.  I hope that's it anyway.  Greg's pointing to words taped on the wall, and writing in the air to communicate.  He's pretty relaxed and very cooperative, so we only restrain his hands when we leave the room, in case he starts coughing or getting air hunger, & anxiety makes him try to take the vent tube out.  I think I forgot to mention that he developed a temp of 102 about six hours after he was admitted.  That has come down to 98.5-100.  The temp alone would have been cause for being admitted, but the way it happened, he was just getting antibiotics started anyway, so that wasn't a real priority yesterday.  

September 4, 1999 (9:45 am):  Greg's hanging in there with a blood oxygen saturation of around 90% with 100% O2 delivered by the ventilator.  They've got him sedated with ativan & demerol to prevent him from becoming agitated & bucking the ventilator, which might worsen the fragile condition of his lungs.  I forgot to mention yesterday that his (kidney function) creatinine had jumped to 2.4, so they're doing worse.  His (liver function) bilirubin dropped to 0.9, so that is much better, and he's in the low normal range, right where we want it.  He's moving his toes & gripping my hand, but we don't want to stimulate him too much.  We managed to get his shirt off without having to cut it off this morning when the respiratory therapist helped get it past the vent tubing.  Good thing too, because the nurse just came in and said she was ready to give him his bath.  On that note, I gotta go.

September 3, 1999 (8:00 pm):  Greg woke up short of breath.  The home health nurse had just arrived, and checked his oxygen saturation, which was 30-49%.  She called the clinic, who  told us to come to them first, so we could double check it on their pulse-ox machine.  I gave him 40 mg of lasix before we left.  His O2 saturation was 28% by the time we arrived, so they put him on 100% o2 by mask, and gave 40 mg more lasix.  Greg's chest x-ray was nearly solid white, meaning they were full of some kind of fluid, either water, blood, or mucous, so they sent him to University Hospital (next door) for admission.  Upon arrival, they gave him 100 mg more lasix, because he still hadn't urinated.  They did a bronchoscope & saw that he had diffuse hemorrhaging throughout his lungs.  While they had him sedated for that, they put him on a ventilator.  They think the bleeding's a delayed reaction to the radiation, causing a breakdown of the lining of the walls of the alveoli sacs, but it could be the result of a viral or fungal infection.  If it's from the radiation, he may improve quickly over the next day or two, but he'd be here for several weeks to treat the underlying cause.  They're giving him a slightly better than 50% chance of improvement.  If it's a virus called CMV, they're not giving him any hope for recovery, so they're treating him with gancyclovir to prevent CMV from becoming an opportunistic infection.  His potassium was dangerously high at 6.9, so they put a feeding tube down his nose to give him some kayexalate.  It binds to the potassium and excretes it as diarrhea.  They should be giving him that soon.  They also started a dextrose & insulin drip to help get rid of the potassium.  He finally started urinating, and they gave him a foley catheter because he's on complete bedrest, and his hands have to be restrained while he's on the vent.   

September 3, 1999 (12:15 pm):  Just got readmitted to room 216 in acute respiratory distress.  No ventilator at this time.  Will write more later.

At the Cancer Clinic

September 2, 1999 (8:00 pm):  Yesterday marked six months since Greg was diagnosed.  In some respects, time has flown by.  In other ways, it seems like a lifetime.  It's day +23 & Greg went to the cancer clinic for a check-up.  They  gave him a bag of platelets, and drew a cyclosporin level.  He also got 40 mg lasix (yeah!) for his swelling.  The home health agency came out yesterday and drew a boatload of blood for the lab, but we didn't get any results until today.  His potassium was high at 6.3, so we're holding a couple of doses.  We're also increasing his lasix, & he'll lose some potassium with the increased urination, so that will help.  His BUN & creatinine (kidney function) was essentially unchanged at 36 & 1.7.  Dr. Selby said the BUN can be artificially inflated from the steroids he's getting.  His bilirubin (liver function) is okay at 1.3.  His white blood cells are 12.7 (yeah) without neupogen, so his marrow appears to be engrafting well!  His hemoglobin was 11.5, so he didn't need any blood, and his platelets were 12.  They want to keep his platelets a little higher than they normally would, because he's had a few nosebleeds, so he's not clotting real well.  Part of the nosebleeds may have to do with a sinus drip he's been having for the past few days.  He stayed up all last night coughing, and his cough sounds pretty congested, but it's all upper airway.  His lungs have a few crackles, but we think that's from the fluid overload.  They started him on some cough medicine called tessalon pearls.  His feet have fissures running across the tops & up his ankles, caused by a combination of stretching from the excess fluids & his dry skin.  His foot & ankle discomfort seems to be his biggest complaint, and the doctor says that he's doing extremely well for this stage in the game.  He said that usually patients take a step backwards when they're discharged, but that Greg is doing better than before.  His appetite has improved a little, and last night he tried to reintroduce dairy products to his diet with a couple slices of pizza made with very little cheese.  The lactase enzyme, found in the gut, breaks down lactose from milk products, so if you don't have any lactase (because it's been destroyed by chemo & radiation), you can't digest milk, butter, cheese, ice cream, or whipped cream.  Anyway, the diarrhea hit within the hour, so he decided to give it another three or four days before trying that again.  They delivered his IV pole & pump today for the home health nurse to use.  I'm doing his dressing change and Hickman line care every day, and they sent four boxes of supplies to do that with, so it's starting to look like a hospital room around here.  Greg said to tell everyone "Hello.  Thanks for everything.  I'm feeling better, and my feet are the only thing that's bothering me now".

August 31, 1999 (Midnight):  Day +21 Greg celebrated his first full day out of the hospital.  His swollen feet had little red spots on them, which I felt looked like the petichiae from low platelets.  Greg, however, said it hurt like little cracks caused by the swelling.  His skin is terribly dry & flaky, so I started to put some steroid cream on them, and he started screaming that it was burning him, so we wiped off as much as we could and called the doctor.  They ordered 10 mg of lasix each morning to help get some of the fluid off, but compared to the 20-40 mg doses he was getting 3-4 times a day in the hospital, that's not much.  Anyway, he's still pretty swollen, and his belly makes him look like he's pregnant.  His balance is thrown off, and his legs aren't used to the extra weight (+20 lbs).  Combine that with his weakness and pre-existing leg pain, and you can imagine how uncomfortable it is for him to walk.  The pressure in his belly and the bruises from last week's neupogen shots hurt the left side of his abdomen, so he's been laying on his right side, and his lungs are getting some crackles on the right side.  He's been pretty good about coughing & deep breathing to try & keep his lungs clear, and he started turning to his left side later in the evening without as much discomfort, so that will help.  He's trying real hard to do everything he's supposed to.  He got to use a real toothbrush again today, instead of the mouth sponges.  He forgot that he wasn't supposed to blow his nose (because of the low platelets), and he got a nosebleed.  The home health agency RN came out today for an initial evaluation & to show me how to care for his Hickman catheter.  It seemed silly, since I'm a nurse too, but they have their rules, so we played along.  Some California infusion company called, & they're sending out the supplies for me to take care of his line with.  They're also sending an IV pump and tubing, so the home health agency can give him his IGG (Immuno Gamma Globulin) every week, which will help his immune system.  They say that his immune system will remain fragile for about a year.  He didn't eat (not hungry) until around 4:00, when he ate a bowl of oatmeal, but at least he ate something.