I never liked riding roller coasters; however, I do like watching kids climb a tree. There are risks doing either activity, but most normal thinking people will not try to do both at the same time.....
The decision to NOT give Lee a Dialysis treatment yesterday turned out differently than expected.
To make a long list of (fist-clenching, nail-biting, blood pressure-raising) events throughout the day short, the bottom line is, by the time they decided to start the dialysis treatment, the treatment line was booked, and Lee had to wait until Saturday after 1300. The two hours prior to 1300 were filled with various examples of the events from the first sentence.
Up until all the dipping number trends began (about 1845 Friday), Lee was stable and steady, and then..........
and then, .......
and then, ........
It took an x-ray (taken at noon Saturday) to verify what a couple of the folks were thinking: all of his airways are clear, nothing is clogged, his blood is doing well, yet his saturation levels were tanking. Must be......
Turns out his lungs were slowly filling with fluid, and the extra time since his last dialysis (Wed) was enough to put him into an uncomfortable position. The extra work for Lee to breath created a small panic attack mode, and so they had to give Lee a sedative in order for him to relax enough to let the machine do its work, and get his body caught up with the rest of the program.
At the time dialysis started, his ventilator numbers were raised to get his body back into "good air" mode, and to make sure his numbers got back to normal. Once the results of today's Dialysis treatment have been establish, they will begin to wean him back off the extra ventilator support. He has come so far so quickly, this is a step or two in reverse out of dozens forward. Just trying to get things back into balance before getting back on the tracks.
On another note; When Lee is awake, he is aware of many things, but he is just not able to respond in a fashion that adults can understand. If you know a child learning to speak, bring the baby along, as that may be the best way to translate. Seems all of the adults in the room have lost the ability to read lips...hand gestures are still a piece of cake, but he can only move his left hand a certain distance; not very useful for the polite emphasis he wants to convey.
For those of you who really like a challenge, take your turn at the little picture board. There is a consensus that the evil powers have finally found a device that the visiting engineers can not crack. Bring a 6-year old along to solve this puzzle.
Also, when you enter the room, try not to be noticeably disappointed that Nanette is not here (no big sighs, grunts or rolling eyes). In order for her to work for five days in a row, without food, water, bathing and my tender loving touch, we have to send her home to plug back into the sensory deprivation tank. (Okay, she does have to pick up dog poop first.) If it is not entirely obvious who else is in the room, I will be the strikingly handsome NOT-NAKED Ogre sitting in the darkened corner, keeping track of your every move with my fake tapping noise on the glowing red device in my lap.
(Note, Lee was secretly jealous of my fancy facial hair, so we did find a pay-stub to the shaving nurse with the note, "Thanks for making me look so good.....Now it will be Gregg's turn to be jealous."
Eternal Vigilance
שבח יהוה
Saturday, April 23, 2016
Updates on Lee - Saturday, April 23 - 1245
0915 - Physical Therapist arrives. Works Lee through all his body part movements and resistance.
1000- His O2 sats dip, they adjust...Dialysis ordered.
1030 - O2 sats dip, they adjust, scratch heads....all of his blood gass numbers are fine, so they talk...
1100 - O2 sats dip, Lung Doc comes in and increases peep to 8% and O2 input to 100%. x-ray ordered and he wants to take a close look at everything once the dialysis is done.
There is concern, but are watching closely, and reassess when the Dialysis treatment is done.
1245 - Waiting for the Dialysis machine to arrive.
1000- His O2 sats dip, they adjust...Dialysis ordered.
1030 - O2 sats dip, they adjust, scratch heads....all of his blood gass numbers are fine, so they talk...
1100 - O2 sats dip, Lung Doc comes in and increases peep to 8% and O2 input to 100%. x-ray ordered and he wants to take a close look at everything once the dialysis is done.
There is concern, but are watching closely, and reassess when the Dialysis treatment is done.
1245 - Waiting for the Dialysis machine to arrive.
Updates on Lee - Saturday, April 23 - 0815
It was an unusual night:
Some time after 1900 last night, he had a bath, and some bed arrangements/movements. Since his day had been filled with some pretty heavy activity (surgery, draining, etc...) he was quite weak. His O2 sat numbers hovered at 92%, then, in the middle of the night, as the pain meds wore off, it appeared he became frustrated with the new tube placement, and his O2 sat dipped a bit. They bumped up his O2 a few times, and it now rests at 50%. Their plan is to wean him back down as they see him settle down and relax. The good news is, his blood gasses (the true measurement of what is getting through his system) continue to look good.
0800 - Dr. Croad came in to check on things. She is the Infectious Disease doc who who was first on the scene, setting up the massive course of antibiotics to deal with his infections. She said he finished the original round of all that a few days ago, but he is now on an antibiotic to help clear out his gall bladder, and will be at hand closely monitoring his overall needs.
0815 - Dr Tuso came in for a peek. Since Lee's kidneys put out some good fluid numbers yesterday, he held off the Friday Dialysis treatment, and is now reviewing the morning blood draw numbers to see about a treatment today. The concern at this time is the quality of the work being done by the kidneys. Will keep you posted on all tat.
Lee is pretty much fully aware of his surroundings. He can hear and respond, but is still very tired, and the biggest frustration is our inability to read his mind and lips. I am sure the frustration he has are a bit more developed.
0845 - Occupational Therapist (Tania) came in... she kept looking at "Richard" and said there is a guy who looks like "Richard" and plays the Clarinet. His name is Lee Hutchinson. I laughed and said that is him, and she giggled, as he is not wearing his glasses, and also has new facial hair as a disguise.. she is a Cello playing friend who already knows Lee. Intermixed with calling out names of their Music Friends, she is now giving Lee instructions on how begin moving body parts.
More later.
Eternal Vigilance
שבח יהוה
Some time after 1900 last night, he had a bath, and some bed arrangements/movements. Since his day had been filled with some pretty heavy activity (surgery, draining, etc...) he was quite weak. His O2 sat numbers hovered at 92%, then, in the middle of the night, as the pain meds wore off, it appeared he became frustrated with the new tube placement, and his O2 sat dipped a bit. They bumped up his O2 a few times, and it now rests at 50%. Their plan is to wean him back down as they see him settle down and relax. The good news is, his blood gasses (the true measurement of what is getting through his system) continue to look good.
0800 - Dr. Croad came in to check on things. She is the Infectious Disease doc who who was first on the scene, setting up the massive course of antibiotics to deal with his infections. She said he finished the original round of all that a few days ago, but he is now on an antibiotic to help clear out his gall bladder, and will be at hand closely monitoring his overall needs.
0815 - Dr Tuso came in for a peek. Since Lee's kidneys put out some good fluid numbers yesterday, he held off the Friday Dialysis treatment, and is now reviewing the morning blood draw numbers to see about a treatment today. The concern at this time is the quality of the work being done by the kidneys. Will keep you posted on all tat.
Lee is pretty much fully aware of his surroundings. He can hear and respond, but is still very tired, and the biggest frustration is our inability to read his mind and lips. I am sure the frustration he has are a bit more developed.
0845 - Occupational Therapist (Tania) came in... she kept looking at "Richard" and said there is a guy who looks like "Richard" and plays the Clarinet. His name is Lee Hutchinson. I laughed and said that is him, and she giggled, as he is not wearing his glasses, and also has new facial hair as a disguise.. she is a Cello playing friend who already knows Lee. Intermixed with calling out names of their Music Friends, she is now giving Lee instructions on how begin moving body parts.
More later.
Eternal Vigilance
שבח יהוה
Friday, April 22, 2016
Updates on Lee - Friday, April 22 - 2200
Happy Passover!
Well folks, a lot has taken place, and now that the guards have changed, it is time to update what we can remember:
From Nanette:
0830 - Lee was on CPAP mode for awhile and did fine. The RT wanted me to keep him awake because he was a bit tired so I put some Django Reinhardt on and made up words to sing to him. Mostly "you need to stay awake."
0900 - Dr. Nathan (lung) came in and said Lee still needs to be trached as his upper body is still too weak and this would be best for Lee's recovery. The tracheotomy is scheduled for around noon today. Other than this, all numbers look fine. More later. ❤️
1215 - Took Lee down to do the Trach surgery. Not too invasive, but still enough that there will be a recovery period.
1315 - Lee returns from surgery and all went well.
1400 - They took Lee down to do a gall bladder flush. Seems there is a little blockage that needs clearing.
1345 - Returns from Gall Bladder flush. Lot of invasive things today, so his pain is a little higher than normal.
1715 - Looks like his numbers are staying good enough to postpone the dialysis until tomorrow.
1845 - Gregg Arrives. Lee smiles!? Wow! I have not seen a real smile from that guy in years...must be gas.
We spent some time reviewing all he is able to do. He can see, hear, and move his head to answer questions. Under normal circumstances I can read lips, but right now, his embouchure is a bit weak.
Numbers are looking good, tere is a little residual pain from the surgery, so he is dozing off now and then.
Signing off for the night.
Eternal Vigilance
שבח יהוה
Well folks, a lot has taken place, and now that the guards have changed, it is time to update what we can remember:
From Nanette:
0830 - Lee was on CPAP mode for awhile and did fine. The RT wanted me to keep him awake because he was a bit tired so I put some Django Reinhardt on and made up words to sing to him. Mostly "you need to stay awake."
0900 - Dr. Nathan (lung) came in and said Lee still needs to be trached as his upper body is still too weak and this would be best for Lee's recovery. The tracheotomy is scheduled for around noon today. Other than this, all numbers look fine. More later. ❤️
1215 - Took Lee down to do the Trach surgery. Not too invasive, but still enough that there will be a recovery period.
1315 - Lee returns from surgery and all went well.
1400 - They took Lee down to do a gall bladder flush. Seems there is a little blockage that needs clearing.
1345 - Returns from Gall Bladder flush. Lot of invasive things today, so his pain is a little higher than normal.
1715 - Looks like his numbers are staying good enough to postpone the dialysis until tomorrow.
1845 - Gregg Arrives. Lee smiles!? Wow! I have not seen a real smile from that guy in years...must be gas.
We spent some time reviewing all he is able to do. He can see, hear, and move his head to answer questions. Under normal circumstances I can read lips, but right now, his embouchure is a bit weak.
Numbers are looking good, tere is a little residual pain from the surgery, so he is dozing off now and then.
Signing off for the night.
Eternal Vigilance
שבח יהוה
Thursday, April 21, 2016
Updates on Lee - Thursday, April 21 - 2130
We are no longer on the edge of our seats, biting nails at each bing bong alarm. With that said, Lee is still in ICU. The next procedure will be another move in the positive direction.
1645 - Trach surgery is postponed until noon tomorrow. There is no surgery room available for the doctor to use until after 2000 or 2030. She (the very pretty doctor) would just rather do the procedure tomorrow. Won't be arguing with that.....
From Nanny:
1900 - Nothing new to report since earlier info update on trach. Lee is still alert when he is awake. It breaks my heart seeing him look at me as if I am supposed to help him (you are helping him more than you know). Not much I can do other than talk and encourage him and I tell him stories (you can pretend you are Lucy and run around the room opening and closing all the blinds and drapes, screaming, "Splain it to me Ricky," but that might draw attention of the other white coat people. Ethel and Fred would be frowning the entire time. They no longer have a sense of humor.)
From Professor:
Many thanks to all who have been by to say hello. Keep up the visits, as it is helping his brain to clear the muck....There are more than cobwebs to clear......
I am sure the picture board they have for him to work eye hand coordination lacks creativity. There are some really smart people coming by. Prove it!
Eternal Vigilance
שבח יהוה
1645 - Trach surgery is postponed until noon tomorrow. There is no surgery room available for the doctor to use until after 2000 or 2030. She (the very pretty doctor) would just rather do the procedure tomorrow. Won't be arguing with that.....
From Nanny:
1900 - Nothing new to report since earlier info update on trach. Lee is still alert when he is awake. It breaks my heart seeing him look at me as if I am supposed to help him (you are helping him more than you know). Not much I can do other than talk and encourage him and I tell him stories (you can pretend you are Lucy and run around the room opening and closing all the blinds and drapes, screaming, "Splain it to me Ricky," but that might draw attention of the other white coat people. Ethel and Fred would be frowning the entire time. They no longer have a sense of humor.)
From Professor:
Many thanks to all who have been by to say hello. Keep up the visits, as it is helping his brain to clear the muck....There are more than cobwebs to clear......
I am sure the picture board they have for him to work eye hand coordination lacks creativity. There are some really smart people coming by. Prove it!
Eternal Vigilance
שבח יהוה
Updates on Lee - Thursday, April 21 - 1500
Lee has had an eventful day
so far and it is not over yet.
This morning around 0900,
they placed a PEG in Lee's abdomen which will allow nutrition, fluids and some
medicines to be sent directly into his stomach.
Around 1030 he was taken
down to radiology for a HIDA scan on his gallbladder. They will be taking him
back down around 1300 to do another one. (Apparently, they need a better look).
Since his blood pressure
has remained stable, he is scheduled for a tracheotomy which will take place
around 1730. The trach will replace the tube currently down his throat. This is
a big step in the right direction for Lee.
They also provided us with
a picture board that Lee can use to communicate until he can verbally speak to
us. He already told me that he was in pain at a level of 2 (scale of 1-10, 10
being the highest pain).
Lee continues to be quite
alert. Looking around, moving his legs and hands. I have to say, he looks a bit
scared. It is as if he has no idea what actually happened to him. This of
course, is my opinion and observation.
Please continue to pray for
Lee as we all know this is obviously hard on him. Even more now tat he is
becoming aware of his situation.
More updates later as the
day progresses.
Wednesday, April 20, 2016
Updates on Lee - Wednesday, April 20 - 2215
From the one at his bedside:
1845 - Lee just finished dialysis. Lee's BP was a bit low so they stopped the fluid extraction and actually added some of fluid back into Lee's system. As we have noticed, it is a balancing game. On a related note, they are now only cleaning the blood, and after all the progress they have seen, Dr. Tuso has changed the dialysis orders to three times per week (M/W/F).
Lee may be switched to a tracheotomy tomorrow. They will not extubate Lee but they say the trach is less painful and they really want to remove the tube that has been down his throat for the last 17 days. They will also be adding a PEG (feeding tube) in the morning (he is currently being fed by a tube that goes down his throat). Lee's other vitals have remained stable.
Activities currently taking place: We sit, wait, talk to him, sometimes play music and most importantly, continue to pray for his complete healing.
Also, we now have two mission critical books in hand to be read aloud to him: The Princess Bride and Pride and Prejudice. Come and take your turn reading to Lee. If he gets tired of hearing your voice, we can play the sounds of his favorite train horns.
2200 - Lee is very alert. Squeezing my hand, moving his legs and even smiled for me when I asked him to (Gregg says that was gas. Same thing happened in class today before a student began playing his test - an elongated rumbling sound from beneath his chair, with some punctuation. Quite impressive! The boy giggled as the girls ran to open the doors. With a straight face, he proceeded to play his test). I told Lee that it is too bad I do not know Morse Code so he could talk to me by squeezing my hand. He is also moving his mouth as if he wants to say something. I asked him if he was hungry and he shook his head yes.
There is a plaque on the way that will have an accompanying explanation. It is the Hebrew word for LIVE, and has a very significant meaning and application.
Derek put it on the slide show, but we will get a better picture of it once it is hanging in Lee's room.
Eternal Vigilance
שבח יהוה
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