Our Family , once again complete. Welcome home Sam!!

We are so over joyed that today our son has come home, to complete our family once again. We thank you.....our words are not enough to express our feelings of gratitude for your continued love and support throughout this frightening experience. Never under estimate the power of collective thoughts and prayer....... we are humbled by its' powerful presence and strength to save Sam's life.
We will miss your daily presence, here on Sam's blog......but know this experience has touched us all in a special way that lets us know that human bonds are extraordinary, powerful, beautiful......Thank you. We love you all.

The Kortegast Family (Graham, Cam, Sam, Marne, Kathryn)

The last night in hospital

Sam goes home tomorrow morning....25 nights in hospital, 11 completely sedated on life support. He's lost more weight now as he transitions from the drugs. Once home we still have breathing treatments 2x a day and physiotherapy but he gets his own bed and Mum's cooking. Downside (maybe ??) for Sam is that he starts back to his studies....we got all that sorted out today with the school and the tutor. He has to catch up with what he missed and keep up with whats current so as not to repeat a course but he's been reassigned to a less demanding curriculum so we are hopeful he'll cope. Time will tell (and Sam's own level of effort ) when he can return to regular high school. As I write he is hooked up to that infernal vibrating vest --for the LAST time. He's now completely weaned off the drugs, and has a few aches to show for it but the prospect of going home has him all smiles.....it has us all smiles too.

day 25 ,Wednesday 11pm

Got word on the Xrays taken yesterday and they look improved. The air bubble is no longer apparent , much to the pulmenologists amazement. The latest prognosis is that Sam will have near 100% recovery. The left lung apparently is normal and the right lung shows little signs of scarring. Sam will be mountain climbing in no time. We are still on target for release in 36 hrs !! Then Sam is back home for convalesence ....we have the hospital-home bound tutor arranged so Sam should be hitting the books come monday...he has a lot of catching up to do. Barring some complication (eg. flu, which will knock Sam about in his weakened condition) the prediction is anywhere between 2 and 10 weeks before Sam is strong enough to return to regular school. The suggestion is that he start on 1/2 days next month sometime then to see how it goes.

Day 24 ......List of "to do" when Sam's out

OKAY....so it is really going to happen...this going home thing. Sam has a few things he wants to do when he gets out of here......

• Sleep in his own bed
• Eat his Mom's cooking
• Hang out with his friends
• Get a freaking haircut
• Go on MySPACE
• Lots of other stuff...too numerous to mention
  

They took another xray this morning and will let us in on the results tomorrow. As they have said that it could take up to 3-6 months for the lungs to completely clear, we don't expect a huge change. Sam gets to take home a nebulizer with some treatments to take several times each day at home and Mom & Dad become the in-house respiratory therapists. We need to accompany each nebulizer treatment with 10 minutes of percussion (cup your hand and thump on the back/chest....it should make a hollow clapping sound). I'll tell you what.... this whole ordeal has been a real education for the old folks!

Day 23 , countdown to discharge

Sam's program continues apace. Drugs are being reduced, no more wakeups in the middle of the night for therapy or vitals and Sam continues to get stronger. We took a walk around the hospital, maybe 1/2 mile walk then up 5 flights of stairs. Ol' sam was feeling so chipper he thought he'd do a few pushup's. He was a little taken aback when he found that it was a lot more difficult than it used to be (now what would you expect after 3 weeks in here !!!). Anyway it looks like we may be discharged friday, just in time for Sam to play the skeleton at halloween, Yahoo!!

Day 22 Beautiful weather....wish I could go out and play...

Unfortunately Sam is missing a great week end of Florida fall weather, nice breeze and 75 degrees, low humidity and blue sky....this is what we all long for in the hot summer months. Not much happening in this old hospital. Just a bunch of sick folks who wanna get out like Sam. Sam feels better than yesterday. Still very weak, feels weird when he walks...spacey and light headed.
The big deal today was that he has started to test for his drivers permit by taking some exams on line. He finds this relatively easy and at least something to occupy his mind and get some relief from the dreadful boredom.
Today was the first time the respiratory therapist said she could not hear the crackling in the lower right lung. This is a good thing, as it means that part of the lung which has been collapsing in when not breathing deeply, is starting to remain open some of the time. Eventually it will stay open all of the time as the tissue heals and becomes stronger.

Guys this is Sam talking again lol.

Well, im pretty much better and i hope to leave the hospital soon.
I feel almost back to normal, i just get short of breath if i run around and stuff.
but yeah, the hospital is really really boring and theres nothing to do. they block myspace and aim.......... so i cant talk to anyone.
soooooo, you should email me cuz they dont block that. new email address:
getwellsam@gmail.com
thanks

.........today was the twins birthday..the best present ever was that Sam was well enough to join us down in the hospital cafeteria. All spruced up, a hot shower a change of clothes Sam felt like a new man. Still weak and tiring easily and , today at least, not much of an appetite and BORED....we have a tutor coming in next week we'll see if that helps. In the meantime the only thing keeping Sam here is that he must be weaned completely from his old med's and thats a slow process. Looks like one more week of bad hospital food and boredom to be completely drug free.

Update Day 20 ...........just a little tired, Let me SLEEP!!!

Sam is now in the penthouse flat with a great view (a lake view with 5 fountains), 2 beds (sleepovers anyone???), a rocker and easy chair, and lots of room left over. He likes his new location, away from all the frantic ICU beeps and alarms.... definitely a more relaxed approach in Rm 5907. The new Phone # is 343-6509, so give Sam a call. Sam's biggest complaint today is that he just wants to get some shut eye. The new nurses, in addition to the respiratory therapist, the food tech., janitorial service, music therapist (nice facility downstairs with guitars, drums, keys boards etc. donated by the band AC/DC, whose lead guitarist is living in Gulf Harbor)......all are coming in to give therapy, medication, clean, take the dinner order, and ask for Sam to come play music.
Our big question and certainly Sam's big question is "when does he go home"? Well at least 2 of the requirements have been revealed as to what criteria he must meet to be sent home. One is the blood work number for his CRP (= C reactive protein) which is an indication of the amount of inflammation in the body. Sam's was up at about 60 and is now at 1.4, it has to be at least 0.9 for him to go home. Also, his respiration/minute should be in the teens before they let him go home. Today they have been around 24, yesterday around 27. So we wait and see over the next few days. His parents did point out that on Tuesday he will receive his first homework load from his teachers, which should be more stimulating than just hanging around vegetating....(or so his parents think). Sam may not agree on that one. He does seem to every once in a while, be a little bored with the video games.

Thursday, day 19, 11.30pm

Sams lungs don't appear to be any better from yesterday. A bit of a relapse over the last couple of days hence the vibrating chest thumper that is supposed to loosen up mucus, the mask he's wearing is a dose of a mucolitic to liquify the mucous. He get this treatment every 4 hrs for 10 mins. Apart from this he has no other treatment except the antibiotics. As of today Sam is no longer hooked to the monitors so he is free to move about. (when he's not hooked up to the vibrator of course)We went down to the cafeteria for dinner and hung out for a while. He can walk easily unaided but does tire easily. By tired, I mean he's ready to return to his computer games not sleep. Sam has been downgraded yet again from icu recovery to general pediatric and has just now been moved out of icu to the penthouse suite ....room 5709 for those of you who wish to visit. He has today also recieved a beautiful get well banner from his school spanish class...thanks Elise, you are the best.

Update Wednesday Day 18

Sam has been up and down the halls so much today.........he is really tuckered! In fact, PT has given him such a work out that he has a sore leg and knee. Consequently they have decided to give him a little break tommorrow. The docs are also letting him sleep through the night tonight (without the every 4 hours order to use the vibtating vest). He is looking forward to that. They have decided that Sam has reached a point where they think the sleep is just as important to his recovery as the respiratory therapy.
Today (in the morning) his lungs were very "tight", but improved throughout the day. The breathing was mostly up a little (to 27 breaths/per minute) from yesterday ...remember a smaller number is better. This is attributed to his being tired today. The AV IV line was removed from his chest today.......one less line in him is good news.
Bobby and Doc came to see Sam today. That was the highlight of Sam's day. He welcomes any visits from his buddies. P. S. He is NOT contagious, so don't worry about that. Rm #2910 Pediatric ICU Health Park.

SPECIAL POST!!!!!!!!!!

please do call me cuz i am lonely, even though my voice is still really hoarse and a little hard to hear me but call me at my room number 432-3691. thank you!

day 17 , 9.30pm

Still no change on the xrays...just goes to show it's an imprecise science as Sam is clearly making strides forward, I reported 2 days back a respiration of 27 bpm (breaths per minute)...now its 19. He graduated to a walker today and was able to hobble around the hospital atrium (for interest that is the photo ). He can walk a few steps unaided . He even took an actual real bath today. He is spending his time from sunup to sundown playing video games interrupted only by his care givers insisting he eat and drink and do mandatory lung vibration stuff (that he does not like). Voice remains hoarse so hearing him on the phone is tough....he is happy to have visitors though (rm 2910 pediatric icu) although they frown on under 15 year olds saying its to traumatic for the young 'uns. No definite word on when he'll be released yet....best guess 5-10 days.

Update Monday Day 16...and counting

I guess these next days are all about small steps in the right direction. Nothing dramatic today, but Sam has been taken completely off the support Oxygen (the little tube in his nose is gone). He was to wear the bi-pap mask overnight again tonight....but you know Sam,,,,always pushing the envelope. So he has made a deal with the Doc not to wear the mask tonight but get extra vest vibration treatments. He claims he does not sleep well with the mask, can't say I blame him, it looks very uncomfortable and is noisy as all get out.
Sam had a visit from his friend Max and Zach today and a visit from Spring, Ron, and Amelia......(the most awesome Mom friend to have) Spring brought Sam a Reeses Peanut Butter Cup milk shake by request. Thank you Spring........you are the BEST!
Sam also was able to get to the bathroom and walk down the hall with some assistance. The Docs have decided to have the xrays every two days from now on, as the changes are so small now it is hard to see any differences on a daily basis. As far as Sam's breathing, he is the same as yesterday....it should improve slowly. Sam is eating everything now, and must try and gain back all the weight he lost....ice cream 3x/day if he wants...lots of fat and protein is what they want Sam to eat. Hummmm, most of us can't get away with that kind of a diet, so live it up SAM!

Day 15, new digs

Sam has been moved out of the critical ward and into recovery!!! No longer do 10 nurses and 4 doctors come running to every beep. As sam says he has lost weight ( about 15 lbs) and is not strong enough to stand by himself but each day now he gets stronger .He is however well enough to play video games 4 hours straight!! He's on solid food and oral meds and slowly his breathing rate is coming down...he's asleep right now as I write with a rate of 27 breaths per min....normal should be 10-15 . His xray still show the compacted infection in his lower right lung but we are assured this will slowly reduce. His progress has astounded the folk here and at this rate he'll be discharged late this week and recuperate at home...It will be good to have our boy back.

Looking back it has been a gut wrenching ride, and the thing of it is the doctors still really dont know what happened, they call it a necrotizing pneumonitus caused by mycoplasma. The weird thing is that the mycoplasma is common, probably all of us in the family had it, yet somehow in Sam it turned from an annoyance to a killer without explanation.....according to the infectious disease doctor she has found less than 10 reported cases of this ever having happened. They are now talking of publishing the case themselves....weird.

Again, I can't thank you all enough for all the support and as we move into the final days here in hospital Sam himself will be able to report his progress and respond to you directly at last.

hey guys, im starting to feel better

im feeling a lot bettter, i expect to be outta here within the next weak. ill still be pretty weak tho and ive lost a lot of weight. iwas actually put to sleep for 11 days!
idk when ill be back in school for sure tho. but i reallly miss you all :(

Update Saturday....ice cream! 1 pm

Sam has been doing well....he sat up in bed (with help) and moved to a lazyboy chair to play on the computer for about an hour. All this, they say, is essential to getting all the congestion in his lungs moving out to further open up his lungs (although I don't think the computer stuff has anything to do with the lungs.....but mentally uplifting....YES!). Today the xray showed his lung a little smaller than yesterday, ....no..... he is not out of the woods yet (keep on sending the prayers and positive energy for Sam). They believe the infection is still present and need to keep him on the antibiotics for a lot longer. They have the respiratory therapist working with Sam.... lots of treatments scheduled today. He wears a vest that inflates and vibrates to shake the congestion up to try and get it out of the lungs.

Highlights today: Ice cream this afternoon, maybe another move to the lazyboy, and some computer time!

Keep up the good work SAM.....we know it's a long road..........

The extubation, day 12

Sam continues to amaze...first by the speed and weirdness of the illness and now by the strength of his recovery. He was extubated without complication at 2:15pm. His throat is swollen so he wont be able to speak for a day or two and he is very weak.(he is only just able to raise his arm and his fingers are not quite strong enough to even pull up the bed covers.) But for his Mum and Dad you can imagine the joy we felt at seeing him smile for the first time in 12 days. He is breathing still with a little difficulty due to the mucus build up in his lungs which remain sounding a little rattly. In addition his respiration rate is high (30 breathes per minute vs 15 normal) so he is being watched closely. There's a rumor that he'll get real food (jelly and soup , yum) in an hour or two.

My heartfelt thanks go out to all of you who have supported us through this, we have been deeply touched by such concern as has been shown, coming not just from our friends close to home but from all over the world. Thankyou.

Day 11 Thrusday 3 PM Get Ready....BIG DAY tomorrow

Sam has amazed all the Doctors and staff here.....Is this DUDE for real??? The third Doc continues to push Sam. He has taken him off breathing support and forced him to breath on his own.....first with some back up and now dialed down to No back up......(support kicks in only if he stops breathing). So far so good, the back up has not had to kick in. They are preparing him to take the breathing tube out at 11 am tomorrow.
Preparation involves taking him off food before the tube comes out, cuz he'll cough and maybe vomit YUK. I'm sure he won't mind that, as having that darn tube down your wind pipe hurts and is definitely a drag. He should be able to talk to us too.....and I know how frustrated he has been trying to communicate with us and the staff. He currently communicates by spelling what he needs as we ask each letter in the words (he nods yes or no to each letter). He is too weak to write.

Highlights for the day: Sam and Mom get to watch a video and wash his hair (not at the same time)!! Sam likes that. The nurses are asking me if Sam colors his hair because it is so beautiful........and now that they are open, they can't stop talking about his eyes.

We anxiously await 11am tomorrow.......KEEP ON TRUCKING SAM!!!

4pm Wednesday, the awakening

very exciting, Sam is beginning to wake. His eyes are open and we are now able to talk to Sam and receive some small response, a shaky nod of his head or a hand squeeze. His breathing, part machine, part him is erratic and he has a slight fever but otherwise his vitals all look good and the process of weaning him off the painkillers has begun. His lungs do not show much improvement from yesterday but the clearing up of his lungs is expected to be a slow process.

Day 9 Tuesday 9:00 PM

All your prayers, positive energy, and support has pushed Sam to a new mile stone......
A third doctor (new to SAM) has a reputation of pushing his patients. His new approach of changing the ventilator settings from deep breathing, to shallow breathing was done to aggressively recruit more lung tissue to start breathing....AND it worked! Sam's xray has revealed good improvement today. They have also been able to take Sam off all of the blood pressure and heart medications. Last night they even started to slowly wake Sam up by decreasing the paralytic drug (vecuronium). Sam squeezed Dad's hand when prompted! Decreasing the paralytic drug allows even more of Sam's lung tissue to be recruited working towards the goal of independence from the ventilator. Today Sam has been up and down struggling to find his own auto control of his heart rate and blood pressure, a common phenomenon called "bounce" when the strong blood pressure/heart meds are removed. In addition, another antibiotic has been removed. The Infectious disease Doctor still thinks Sam's case is a rare necrotizing mycoplasma, but has not removed the broad spectrum antibiotic, just in case it is a super-infection caused by an aggressive bacteria. Finally, they are starting to swap the strong narcatics (versed and fentanyl) for lesser evils, to begin the weaning of those drugs. Oh, and they have added hydrocortisone to help with the inflamation.......side effect being, his blood glucose is too high and he is now also on insulin. It's all a mind boggling, complex regime.....but whatever it takes. We love you SAM...hang in there..... you're doing an awesome
job!!!!

day 8, Monday 10pm

You know you are really sick when the highlight of your week is the day you, to put it delicately, move your bowels --such was Sam's day. Other highlights today were :

1. the removal of the epinephrine drip
2. the reduction of antibiotics from 4 kinds down to 3
3. the ventilator pressure was reduced from 13 down to 11 . Normal pressure is 4 so it's not like Sam's even close to well but it's a step in the right direction.
4. Oxygen was reduced from 50% to 40%
5. Oxygen saturation was 99-100% most of the day (up from 94-95 yesterday)
   
6. Expired air volume increased from 450 to 540 which is pretty much normal now.
7. Dopamine (for blood pressure ) reduced from 12 to 10
   

On top of all this he got himself a diaper AND a new pair of boots.

On the downside Sam remains a long way from being able to breath for himself. The xrays show no change from yesterday and the bleb (the problematic air pocket with its inherent potential to develop as either a pneumothorax or fill with pus) remains a serious concern.
Poor sam's limbs are noticeably thinner now , and he was thin (read svelte) to start with. He is of course still totally sedated 24/7 and remains with fluid drips being his only "food". Blood tests today showed that Sams cortisol levels were very low (9 instead of 40 ) so thats been added.

I'm sitting by Sam's bed as I write this, I think he hears a little of what is going on as his eyebrow will twitch when it gets noisy in here. The doctor has just come in an has advised that he is so pleased with the progress today that they will start to wake him up a little over the course of the next few days and will introduce real, liquid, food.....it's scary, a little precipitous, but Sam needs to be challenged to start operating his systems on his own. Way to go Sam !!

Update for Sunday 10/12/08 8:30 PM

Sam has been stable all day after some trauma this morning when they flipped him over again. Sam is now on his back again after almost 24 hrs. on his stomach. During the time spent on his stomach they were able to suction off a lot of gunk from his lungs. The result of this was that his xray looked better today. Even the Doc who is reluctant to give out good news says he thinks so and that Sam has hit a plateau and is turning around. They have also been able to lower dosages on some of the drugs for blood pressure, taken away the Motrin, and order some blood tests less frequently. These are all signs that Sam is more stable and getting better. Graham's sister in New Zealand is a nurse and after seeing the photo posted last night said she has never seen so many drips........the scary thing is that photo is only one side of Sam's bed and the other side looks much the same!!

Update: Saturday 10pm

Its been a banner day.!! Sam is going to think it's a poor substitute for missing out on tonights Fort Myers High Homecoming ball but we are pleased. After 5 days prone on his back he has been flipped over to lie face down for a while. We were all afraid the move would be too traumatic for him but it all went very well and has allow his poor damaged lungs to drain better and open up airways that were previously compressed. Nett result has his oxygen uptake improved enough that the volumes pumped in via the ventilator have been reduced (from 60% t0 50% oxygen) and the pressure on the problematic airpocket reduced. He seems more comfortable too and we have backed off just a little bit more on the epinephrine. There was no significant change on the X-rays this morning but everyone continues to assert that his lungs sound a little clearer.

Friday 4 pm

Sam was stable overnight. His X-rays this morning may have been a little clearer and the doctors listening to his breathing all agree that the airways seem marginally more open. Blood pressure and temperature are both good and we have been able to back off incrementally on his epinephrine drip (heart stimulation). We are optomistic that Sam may have finally reached a plateau from which he will get progressively better if other complications are avoided. He is by no means in safe territory and the latest threat is the appearance of an airpocket where lung has been damaged. The worry is that this "bubble" will burst outside the lung and will require another invasive tube to control. As sam is doing so well, to reduce this risk, the air delivery pressure of the ventilator has been backed off a little and so far Sam has been able to maintain his oxygen levels even at this lower pressure. Keep your fingers crossed. Lab results are still inconclusive but DNA staining has found mycoplasma presence. The best theory is that Sam caught this "walking pneumonia" not normally a problem (although there have been cases of it becoming a serious necrotic form) but it ran him down enough for a co-infection by a more agressive type bacteria. Either way his antibiotic regime covers both types and the news is deemed to allow a couple of the antibiotics inplace for more exotic bacteria to be reduced. Also positive news.

What YOU guys are doing

Thanks for all the support. Everyone has really come together for Sam so there's alot of positive energy flowing this way....and Sam has shown some improvement: the kids in Marne and Kathryns elementary classes at Sanibel school have all made cards,(thanks Ms Hall and Ms Sanders) ,the church choir has dedicated songs, Sanibel community church is behind sam and we have word that many other church groups are also dedicating prayers along with all our other individual supporters...It's all good , thank you all.

Thursday October 9,2008 3 PM

Sam had a good night last night, no major dramas except some heart issues sorted out by adding some electrolytes (potassium). All other indicators are stable at the moment and the chest x-ray looks a wee bit better today. They continue to try and loosen up the congestion and mucus and have begun more therapy and drugs for that. We are all praying for a non-event tonight....all remaining stable.

wednesday 5pm

Sam had a bad night last night. X-rays are showing slightly more lung congestion. This could be due to infection but is more likely just the spread of sam's own immune system fighting back and also some build up of fluids and mucuous in the lungs.
To compensate the ventilator pressure has been stepped up and oxygen increased to try to bring his blood gases levels (SpO2) back to normal. (normal is 96-100, bad is 91-95, critical is below 90). Sam began the day at 91 and it has built slowly to currently stand at 95. This is good but still not good enough to back off on the high pressures the ventilator is set at.

All the lab results back so far have been unable to identify the cause of the pneumonia...this may be good as it might mean that by the time the samples were taken the antibiotics had already gone to work and that sam now is just going through the massive reaction his own body has had to infection...In anycase he remains on 4 of the strongest antibiotics available.

Update for Tuesday

Over Tuesday night Sam's condition worsened. There is a little more infiltration into his "good" lung. To compensate oxygen pressures have been increased and there are increased efforts to loosen some of the mucus build up in his lungs to better open his airways.
Again measures taken have left Sam well stabilised albeit at somewhat higher levels of support.

What Can You Do ?

Sam is in critical condition, on life support...He is comfortable and not in any pain and is dreaming 24hrs a day. He is hooked up to many pumps and tubes and we think Sam would not want his friends to see him this way and ask that there be no visits. Certainly he will not be able to see or respond in any to visitors. However we understand , and appreciate, the concern of his friends and extended family. If you wish to send messages of support you may do so on this blog or by email to getwellsam@gmail.com, .If you wish to share this blog and the email with Sam supporters and friends please do so. Please keep sam in your thoughts . If you wish to send cards please send them to Sam , 1751 Jewel Box Dr. , Sanibel, FL 33957. When he is able we will get them to him . It may be that even in his drugged state Sam may be able to hear a little so we will be sure to read any emails of encouragement to him.

What Has Happenned So Far

What's happenned to Sam ??

On Sunday October 4 Sam went into Critical Care at Southwest Florida Childrens Hospital. The original pneumonia, at first low in one lung, spread very rapidly on Sunday to most of the lung and into part of his other lung. Even with the antibiotics and Oxygen Sam was having difficulty breathing. Late Sunday afternoon Sam was intubated ( http://en.wikipedia.org/wiki/Intubation.) This required a drug (vecuronium) to immobilise him so he didnt reject the breathing tube, a drug ( fentanyl ) for the pain and a drug (versed) to put him into a dream state from which he will come out without memory of this trauma. During Sunday and Monday Sam worsened . He had high temperatures and low blood pressure and fluid balance complications but by Monday and through Tuesday he remained stable. Still very very sick but at least the disease had halted .

This web page is to update Sam's friends and family on Sam's recovery from pnuemonia.