Post surgery, Wednesday / Thursday

Hey all!
Steven is doing great. When he rolled back in from the operating room he was pretty dazed and doped up but now he is awake and able to tell us how he is feeling. i asked him this morning how he was doing and he frowned a bit but then Aunt Paula told me to remind him of day one and he decided to change that frown to a content half smile. then i asked him how he slept and he said not so good and then i told him "well, when i asked you earlier this morning you said you slept fine, so which is it SK?" and he kind of laughed and said "okay okay i slept okay."
after they cleaned all that crap out of his neck tissue his fever was at 98.7. WOW! But now it has gone just slightly up but still staying in the 99-100 range which is still quite impressive. his body will be fighting back and repairing itself in no time.
he has the sweetest nurse taking care of him....except the nurse told him he could start having little bits of ice and man oh man when Steven heard that he has been having me on my feet all day giving him ice. I try to tell him "you cant have too much" but he just ignores me. haha. today i was standing by his bed just holding his hand and he goes "what are you doing?" and i said "oh, just hangin out, what are you doing?" and he said "oh, just hanging out too" .....haha!
as far as pain goes i think he is just mostly uncomfortable because he has tubes coming out everywhere. on a scale of one to ten he said pain is a six.  but they aren't stingy with the pain meds. that's for sure.
Big news! the physical therapists came by and had him sit up on the edge of the bed! the only other time he did this was when in the middle of the night he had to use the bathroom. i had fallen asleep and woke up to the nurse saying "oh gosh oh gosh!" and opened my eyes and saw my dad sitting on the edge of his bed, about to try and stand! he had pulled out all his tubes and freed himself completely of everything! he was on a mission. but luckily the nurse walked in just in time and we told him that was a very bad idea. i told him he has to let go just a little of his rebel tendency. but he got the chance to sit up and move around today when the PT's came in. he did really well! as you all know Steven goes above and beyond in most that he does so he really impressed the physical therapists with his endurance and fortitude. but afterwords he fell asleep...it took a lot of energy and his body is doing a miraculous job of fighting the infections off so sleeping is good.
all is well, this is a huge turning point in his condition! y'alls good thoughts and prayers are a huge help and im so grateful for all of y'alls love and support for him.

Tuesday and Wednesday

His temp stayed low the night before and all Tuesday. He didnt go above 100.6. He wants to start writing notes to communicate better, he is unable to really write legibly yet but keeps practicing. His neck is very swollen and they did a CAT scan and the swollen is just dead tissue so it will be a simple procedure to remove it. Today (Wednesday) is a big day! The surgery starts at 11 and after it will be much of a relief for him. beside the surgery, he is also very excited about the announcement today to see who are the new starters on the cowboys team for the upcoming season, and dont worry y'all, he will definitely be back on his feet for football season! Go Cowboys!
I cannot express how exciting it is to see him light up when loved ones come in. he has been asking bout the weather and how every one else is doing...aw, what a sweet guy...
His organs are now turning him around and picking up the slack - a good sign his body is taking care of itself.
On Tuesday it had been slightly difficult for Steven. He seems relaxed but also discomforted by laying in the same position for 18 days.
There have been many funny moments here in the hospital room. The other day, drew and I were up here and we were all just sitting, not really saying much, and all of a sudden Steven perked up and said "where is my phone?" with a really concerned look! Drew, surprised at the question, responded back with the same perplexed "where is your phone?" and Steven lifted his arms up and said "I dont know!" HAHA, i mean, give it a rest Steven!
Ill post later when he is out of his surgery...every one wish him luck!

Monday the 27th

This morning his temp started at 99.8, an excellent start. When we walked in he was sitting completely up right which is the first time in a while.
His breathing is still improving, they hook him up to a ventilator with medicine that dilates his breathing passage which relieves him of the effort it takes to inhale and exhale. he is coughing a lot less but still really getting that fluid in his lungs out - He is doing so well!
All through the day he has been in great spirits, we talked about the news, the dreams he has been having, and laughed a bit about this situation. He knows he is getting better and has stopped being stubborn and annoyed when he is congratulated on the little things, he knows that it is small stepping stones but he is on the right path and he is beyond wiling to take on the challenges without too much complaining :)
Its nice to have Steven back and joking around. compared to yesterday he is much more relaxed and at ease.
When you touch the swelling in his neck it still hurts him, but the tissue is doing getting better and hopefully his body will be able to start draining it on its own.
At 2pm they tried to get him to do the trachea voice box thing. his chest is still really flemmy and it made the voice sound troll-like...he thought it was funny and laughed at the way he sounded with it in - the most i have heard him laugh so its good he is keeping humor in all of this.
The nurse is great, she gave Steven a shave today (he was starting to look a little rugged, but i thought it was handsome on him). i think he enjoys having all these people (and women) pamper him....of course he enjoys it!
Its been a great day. he seemed calm and at ease.
Thank you everyone for your love and support. Pilar has been coming and reading him the comments in the morning and it really brightens his day! The room is looking a little bare so if anyone has to desire to send flowers or cards please do, i think it will give him a sence of encouragement. since he is not really seeing any visitors ya'll can send them to his house or just drop them by. the address is: 11802 Exposition Blvd. LA, CA. 90064.
Thank you everyone!!

July 26th

Steven did great today. He had a lot of visitors...A lot of commotion. When people come in he has not seen for most of the day he is delighted and relaxes. His blood pressure is normal which is an improvement, and he is coughing up a lot of fluid from his lungs which is awesome because it takes a lot of energy for him to get it out but he is working hard at it and as the day continued his lungs sounded less and less congested. His fever is still up and down, between 101.2 - 100.2. and his oxygen levels are great (97 - 99) even without his breathing tube. They have completely taken him off the sedatives (propofal) so he seems more alert and extremely responsive...In the afternoon he started asking to see his friends because he enjoyes the company and everyone that has been here has been doing such a good job!
He is really excited about drinking water, although he is just allowed to suck on sponges for right now, he is day dreaming of gulping water from a glass. We were watching the baseball game and a burger king comercial came on and I swear he started drooling!
Can completely lift his hands and mostly his legs. it seems he really likes to push himself to use his muscles because I think he is ready to get the hell out of his hospital bed...good will power...no surprize.
Its been great talking to him but it seems so frusterating for him because it takes a lot of energry to try and comunicate without his voice, he was never that good at sharades but after this he will have a lot of practice : ) They will be taking another attempt as putting in something that directs the wind in his throught through his vocal cords so he might be able to talk tomorrow.
Overall, the day was long but he seems tolerable of the situation. I think sometimes he is just bored but pain is minimal and he is just so comited to improving as much as he can. He is doing a great job and im so proud of him!

Sunday's grace

Hi Everyone,

Yesterday Steven's temperature was down so he did not need the polar blanket, which is a great improvement. He was moving around a lot, lifting his arms and legs, and trying to speak. His nurse started him on a 'delicious' protien drink at around 10:30 which will be the first 'food' Steven has had now that he has been able to take Gatorade.

At 11 his respiratory therapist put a screened 'cork' over his trach and Dr. Goldman asked Steven to say 'hello', which he did! It was was a breathy, raspy whisper, but a 'hello' for sure. It was so nice to hear him speak. However, he is still coughing up a lot, so it was decided to give it another day before trying again.

Callan spent the day with Steven, which I'm sure brought him much joy. He is always shows surprise at first because he forgets why he is where he is and why all these people are showing up to be with him. The doctors say his lack of recall is because of the pain medication, from which they are now weaning him. He should start being able to remember things in the next few days. I read him some of the well wishes from all of you, which also brings surprise and then intent listening.

Word is that he will be moving to Kindred Hospital Tuesday or Wednesday for the trach therapy at which time Team Steven (Drew, Rachael, Callan, Angela, Suzi Joy, and myself) will continue to help with physical therapy and to keep a close eye on his well being.

Thank you all for your postings and prayers...they are definitely helping!!

love,

Pilar

Saturday, Day 14: Steven is breathing on his own

Today Steven was taken off the ventilator and is breathing on his own! This is a big step forward.

He has struggled with a fever today (102-100.5), so the PT decided not to push it with having him sit up. He is doing additional exercises and improving.

They have added a medication to aid with digestion as he still is having trouble digesting anything. They are giving Gatoraide another whirl this afternoon (which is being tube fed to him).

Right now Steven can only have swaps of water in the mouth....very frustrating for him because he wants some water and food! On Monday they are planning to "cork" him so he can have access to ice....which will lead to water and food. A speech person will also get with him and he should be able to have access to his voice again..that is if all goes well between now and then.

All of the doctors feel he is doing well.

A big thank you to Jason for lending me his laptop for a week, love you dear son!!!!!

Rachael and Drew have been an amazing help, thanks so much for everything!

I appreciate all that Angela has done during this crisis.

Thanks Mark for being an awesome brother!

Love to everyone; I'm grateful to you all for the love and support.

Signing off and Callan will be here next week to take over.

Norma

Huge improvement...

Hello All,

I'm happy to say there was some real progress today. Steven's vital signs (blood cell count, blood pressure etc.) are continuing to improve and since the sedative change, he is more aware. He has been interactive; indicating he wants water, food and expressing concerns. Communication is a bit difficult (since he doesn't have access to his voice ... but mouths words and uses facial expressions) but we are working through that.

The PT came today and gave me exercises to do with him throughout the day. These are minimal, moving his fingers, feet and toes. She will continue to increase these as he regains his strength. After her evaluation, it seemed that Steven suddenly realized he couldn't move his body well and has proceeded to develop his own exercise program(in true Steven style!), attempting to move his legs, arms and shoulders. No worries, I didn't let him over do it. Massaging his legs and feet is helping. The great thing is he is getting more aware and getting some determination! The PT is planning on getting him to sit up tomorrow. The PT has also ordered an OT evaluation. The OT/PT combo is great in that they will get Steven reacquainted with his body/muscles and get him moving around again and functioning.

Mission accomplished with the tooth extraction. There was some infection around the tooth, but it was not extensive.

Dr. Murray is on vacation so we have her associate, Dr. Goldstein working with Dr. Sheer. Dr. Goldstein concurs with everything that has been done and feels that there was only one antibiotic that was more aggressive that he would have considered but that it is very hard on the kidneys, and since his kidneys were not functioning well at the time, he feels the team made the right call in not using that antibiotic. Another benefit of having Goldstein on the team is that he will be able to provide services at Kindred Hospital where Steven will more than likely go to once he is better to get off of the trach.

All and all this was a great day for Steven!!!!!!!!!!

Love,

Norma

Thursday's smile

Dr. Butler said the tissue sample came back as normal degenerative material, no tumor cells, but they sent the sample out for further analysis. He said Steven's neck felt softer (hard tissue showing softening is taking place) and said that all immune system indicators are much stronger.

Dr. Ting, the oral surgeon, came in and was able to determine the which tooth was bad and is moving forward on an extraction. He is have a CT scan this afternoon to try to get a better analysis of the situation since they do not have any Xrays to indicate the full area of infection. The extraction is scheduled for tomorrow at 2:30.

We have requested Dr. Sheer work with Dr. Patricia Murray, another infectious disease specialist at St. Johns who has worked with systemic strep earlier this year. Dr. Sheer asked that a PT eval. be done.

Dr. Goldman feels that everything is going well and that it is going to be a long healing process.

Steven began feeding on Gatoraide through the stomach this afternoon.

One more note, once Steven is better he will be moving to a respiratory hospital to get off the respirator/off the trach. and back to normal.

Best news of all, today Steven smiled!!!!!!!!!!!!

Love,

Norma

Wednesday, Day 11

Hello All,

Steven started out the day in good shape; lower fever, good white blood cell count, good platelets and a stronger blood pressure.  However, in the afternoon the fever went back up to 101 (still better than yesterday)and fluid began to fill in his lungs again.  They ended up doing a brochoscopy.  He has the polar blanket back on. They are still hoping to start weaning him from the respirator, but they have decided to wait because his fever was up.  They will reassess the situation tomorrow. They are considering doing a PICC line instead of the I.V.  Dr. Roozrohk and Goldman feel he will eventually go to this, but Dr. Sheen feels it will open up a new line of infection and wants to hold off.  A benefit of the PICC is that he can get nutrients along with the I.V., and they don't have to keep pricking him for blood test, they tap the PICC instead.  In any case, Dr. Sheen has the last say in this and he wants to try to do nutrients through the stomach tomorrow again and see how that goes. More tomorrow.

Love,Norma
Sent from my Verizon Wireless BlackBerry

Tuesday...post tracheotomy

Hello All,

The tracheotomy went well, no complications. He didn't have an abscess or pus to drain, but it was good that the doctor was able to take a look. He did find some raw/dead tissue at the base of the tongue and cleaned it out (till they found healthy tissue) and sent it out for a biopsy. Steven will be able to get off the heavy sedation with the tracheotomy and the throat will be less irritated, so we are looking forward to seeing some real healing taking place soon.

Steven is doing well, resting still. They will start reducing the dependency on the respirator, lessen the sedative and hopefully show more improvement.

I'm staying here until Sunday morning; Callan will be driving down Sat. to take over.

Until Later,

Norma

Monday Update from Norma

Dr. Golman came in today and is suggesting that they do a Tracheotomy sometime in the next few days because the breathing tube should not be in more than two weeks or so. The neck is still swollen and there isn't any reasonable probability that it will go down any time soon...soon enough for him to breath without the tube. The tracheotomy will be more comfortable for Steven and safer. It is temporary and once he is totally healed, he should be able to resume normal breathing and the trachea will heal up.

It's been difficult to get his temperature to drop today..it's been between 102.9-102.1. Yesterday they brought him up for a while because his temp. had dropped, but while his fever is high they want to keep him under so that his energy is not spent uselessly.

They did some ultrasounds today to make sure everything in his GI tract is good and no clotting in the veins. Finally having some movement there...

More later,

Norma

Week 1 - Weekend Update

I made another early appearance today hoping to catch the ENT Dr. Butler-no luck on a Saturday.

First some good news - white blood count is 16000 this morning - he is working overtime on the wbc production now - remember it was 300 a week ago - now we have antibiotics and wbc fighting the infection. The doctors are very encouraged by this.

His fever is still erratic -bouncing from 99 - 103 with some regularity; no big deal - its to be expected with Systemic Strep; the doctors are not concerned - keeping him on the chilled bed though.

The swelling in his neck went down by 50% but no further - the tissue infection here is serious and will take long time to get rid of it - its improved but has stalled - another CT Scan was done last night - waiting to talk with ENT Butler this morning about results this morning.

We have been having issues with respiratory - he has a mild case of pneumonia. His O2 saturation was being impaired but is now good. They have pumped a couple of pints of fluid off the lungs - using suction hourly to keep him clear. The infection is causing a lot of secretions in the lungs - as this infection is arrested, the fluids will stop.

This is going to be an protracted recovery - I have to come back on Sunday but Norma is coming tomorrow night. You can call her for updates on Stevens phone which she will all next week. -Mark

Mark is texting for now...

Mark's email server crashed, so he is texting and phoning for now...and he just sent this in...

Met with the renal physician - reports on kidneys are very good - back to normal. While here, Dr. Nechman called the radiologist and got the CT scan results - good - there is no abscess around his bad tooth - very swollen lymph nodes though.

Nechman also verified our concerns about the antibiotics - they are using 3 but he confirmed that they have gone to a broad spectrum antibiotic to fight the strep and the pneumonia. We will investigate further tomorrow.

from the past day's reports: WBC is normal now, as are plateletes, and though Steven has had to have his left lung drained twice, his pneumonia is not the dangerous dry type. He is still being kept heavily sedated.

Thank you for your continued prayers...

Pilar

Steven - Update

Its 4:45 PST - this has been a day that includes several little, but
important improvements. First, after four days of temperature around 102;
it has, for the moment been broken - currently at 98.2. The nurse now has
the chilled blanket under him, not on top which made all the difference.
Hooray for her common sense - the doctor sure didn't come up with that one.

The white blood count is trending up slightly from 300 on Monday to over
2100 this morning; Dr. Boasberg is encouraged by this development and is
predicting continued improvement in this area throughout the night. New
blood work has been ordered to confirm this trend. We should see these
results on the blood work (Thursday morning; we are also expecting
information on the bone marrow biopsy.

The strep infection is in his bloodstream which is still very dangerous.
Worse, its in the tissue in his neck which has caused tremendous swelling -
it actually is the cause of his impaired breathing and it closed his airway
completely. The good news is that the swelling has gone down by almost
half. Since this is something you can actually see - its especially
encouraging.

So that's the update from St. Johns today- - would write more but a Rabbi
just stopped to by to talk to me. He thinks I don't look so good and
decided to say a prayer - I think I'll listen just this one time.

Thank you for all your prayers - steven appreciates it.

Mark

W is for White Blood Cells

Good news. Steven's blood count is up to 2100 from 300 on Monday. Fever is still hangin' in which is not bad, 100.4, but not good either...

We are waiting on bone marrow biopsy, but based on what we're seeing the infection is getting it's butt kicked by the antibiotics.

afternoon update:

A nurse made a great suggestion to put the Polar Blanket under Steven. This brought the temperature down to 98.4.

The swelling is down more again. Steven is responsive to people, and is able to respond with facial movements.

Dr. Boesburg, the hematologist said he is very happy with what he saw this morning...

Tomorrow everyone's expectation is that they will see measurable, significant improvement on a daily basis.

A renal specialist, Dr. Gordon checked liver and kidneys and they are working fine, inspite the barrage of antibiotics and painkillers.

Later this afternoon there will be blood culture results and biopsy will be back tonight. The bone marrow results should confirm that he's in good shape and that the WBC will keep going up.

Mark managed to get Steven to almost laugh (as much as one can being intubated.)

Mark continues to inform him of everyone's well wishes and can't keep up with the amount of calls, so please do instead leave messages here on this blog and we will pass them on...

Everything is trending in the right direction and Mark feels very relieved.

Steven's Blog begins...

Hello everyone. In an effort to keep you all up to date on Steven's condition and progress, and for you to make posts of your own, we have started the Steven Blog...I will post updates from Mark, Steven's brother, and we'll try to let everyone know what is happening as it is happening. Please send messages and we will pass them on to Steven.

He is at St. John's Hospital in Santa Monica in ICU, being closely watched by an excellent team of doctors and nurses, friends and family. He's stable and though being kept sedated, is still conscious and responds whenever someone speaks to him. He raises his eyebrows especially when a loved one's name is mentioned. He is aware of what is happening and is doing a great job fighting his infection.

Mark met with Dr. Butler ENT this morning. He and Dr. Butler agree that the swelling is in his neck is reduced, the Dr. is pleased. Dr. Boasberg also showed up and is liking what he sees. Steven still has a temperature of 101 so they are putting him in a cool wrap to help bring it down. His white blood cells are up slightly but really need to keep going up...send thoughts of white blood cells multiplying!

more soon....