The first 21 days…
It began with us both being really tired, enough to take a day off that led to weeks, and a side of Jerry that scared me to death. Overnight, our lives changed dramatically and we thought we would never get back to living.
There was no fever, a little cough and congestion, but the body aches were so severe we could not walk, or even stand at times. Unfortunately, we went back to work after a week and that was too early and only worsened it all.
I finally took a turn for the better, but Jerry stayed unable to walk for days. His feet and his hand swelled which made it more difficult for his moving ability. He slept a lot, moaned and groaned as much, and just had a really hard time getting back into living. He had me so worried and I tried to stay positive and do all I could, but I too was not up to par. It was a very rough time.
As you all know we are NOT doctor people, so we tried ALL the natural healings. We researched on the internet, and every single symptom was there on just about every disease from okay to death. This was not a good time for us. I was gaining my strength and doing things I never thought I would do. Jerry was apologizing for it all which was disturbing to me since he was not responsible for any of this.
Each day brought new challenges, and truthfully some days I just wanted to give up, my anxiety at times is through the roof, but I knew if we just kept pushing, we would get through it. Life has never gone according to our plan, but together we have always been there for each other and this time was no different.
28 years of marriage and probably at least 25 years of no doctors, hospitals, or serious injuries…we have been blessed, UNTIL NOW!
Finally, on Sunday I stopped listening to Jerry and I called 911 and they took him to Banner Health Goldfield Medical Center, they admitted him. Overnight, things began to progress quickly and 3pm on Monday they ambulanced him to Banner Desert Medical Center where they had any and all departments available to him.
It’s going to be the biggest fight of his life but he has me and we have you all! This was the timeline…
3/11 – Took day off due to body fatigue
3/12-16 – Decided to take rest of week off so that we could get our bodies better so we can finish the last 3 weeks.
3/17 – Went to work and EVERYONE was sick and around 9:30am Jerry looked as if he was going to pass out so we left and came home. He was out of it.
3/24 – Not exactly sure when things took a bad turn for Jerry because I was still feeling bad myself. But, his feet, ankles and right hand became extremely swollen and he could no longer walk, and could barely get himself up because of the extreme pain in his right hand.
3/27 – I started sleeping on the chair in the living area because it was getting tough on me to get out of bed on his side because he can’t and I gave him my side of the bed which is tough enough under these conditions.
3/28 – Taking it day by day, Jerry will not go to the doctor and at this time I couldn’t get him to the truck anyway, 911 would be our only option. He has his good moments but there are some really scary moments. His urine has been dark for a few days but he’s taking a Cleansing Drop and it’s getting lighter. He was awake a lot more today than yesterday.
3/29 – Today was not a good day, he was out and of it (sleeping) most of the day, and then he had a hard time peeing all day. Now overnight last night he peed several times, but today…nothing with 2 attempts. Finally a pee that is getting a bit lighter because of the Cleanse Drops.
3/30 – We both slept on our chairs in the living area, the bed is hard to get to under normal circumstances but with this it’s almost impossible. It’s not a comfortable sleep but we will get through this! A few times a day, Jerry is soaking his feet in warm epsom salt water and an ice pack on his hand. He is taking ibuprofen every 4 hours, Arnicare morning and night, a Protein drink in the morning, and our vitamins. As for eating, well we are both not eating very much and when we do it’s high protein like tuna, eggs, and cheese, quick easy grab food.
28 years of marriage and probably at least 25 years of no doctors, hospitals, or serious injuries…we have been blessed!
Called 911 at 2:39pm – Was able to get to Jerry in room #7 at 3:43pm
Not where we want to be but hopefully we can get some answers. Banner Health Goldfield Medical Center!
He wasn’t getting better, maybe even worse today. Ankles and feet both still swollen and hand/wrist really swollen and he could barely if at all get up. Today he was also slow speaking and couldn’t keep his eyes open or carry a full conversation with me. I decided to call 911…all vitals looked good but he still couldn’t get up on his own nor walk or stand for any length of time…He is in pain in his hand, feet, back and hips, which is actually normal! NOW WE WAIT!
TESTS - Blood tests at 3:40pm, X-rays at 4pm, CT Scan at 4:45pm,
TREATMENTS – Antibiotic Rose 7? at 4:30pm – Diuretic Lasix to help him pee and cleanse.
He was admitted at 6:30pm, and they told me I would have to leave at 10pm because visiting hours are 6am to 10pm, but instead I stayed through the night because he continued to take turns for the worse. Fever spiking, testing of all sorts of diseases, so many X-Rays, CT Scans, Ultrasounds, antibiotics, pain killers, diuretics to remove the swelling all over his body. Doctors quick diagnosis slight pneumonia in belly, but they are searching for infections in his legs, his heart and any other area that might be causing all this stress to his body. Tests continued almost hourly throughout the night, it’s morning and hopefully we will get some answers to all those tests…good answers, not the ones that are in my thoughts! I have never seen Jerry like this and I have never been so afraid for anything in my life! In an instance our lives are changed to a totally different lifestyle, God please help us through it all! Help me through all the upcoming decisions and change of plans!
3/31 - 9am - Doctors are thinking it might be his heart, normal is 50-55 and his are at 39 which is causing his feet and hand to swell. They may have to move him to another hospital.
3pm – Moved to Banner Desert for infectious diseases… After tests it was determined he has a severe case of MRSA, it is a type of bacterial infection caused by the Staphylococcus aureus (staph) bacterium that is resistant to the antibiotic methicillin and other beta-lactam antibiotics.
It has affected his feet, hand, heart aorta and blood…PLEASE PRAY THEY DIAGNOSED IT FAST ENOUGH!
4/1 – All the tests are being diagnosed and it’s the worst roller coaster ride I have been on, over a half dozen specialists poking and prodding. Some come in with good news and others not so good. MRSA is everywhere in his body because it’s in the aorta which is pumping this infection everywhere throughout his body. The general doctor was “very concerned “ and wanted to make sure we understood the fight that was ahead of us, and I told him we would both fight as hard as humanly possible but I won’t lose him. I don’t care that our traveling lifestyle will be over, I don’t care if we lose everything due to this outstanding medical expenses, all I care about is that we don’t lose one another. My only prayer has been that he take us both together and God will do that for us, I have no doubt.
Too many decisions that will need to be made within the next few weeks regarding our living situation, but for now all I want is a good medical health plan to get him better, I will figure out the rest.
Kidney and Liver are great…swelling in feet and hand is down tremendously…antibiotics are working but it’s an uphill fight to get that nasty MRSA from continuing to make a home in many areas of his body, especially his aorta.
He has a test (TEE) today for them to examine his aorta. They have to sedate him to put a tube down his throat so they can see his aorta that is located behind his heart to see just how much MRSA is in it. That is scheduled for 3pm, in the meantime, we have good moments and then not so good!
3:20pm – Just left him with the A Team to get this done with no complications and able to get answers we all need. They were quick and the news is 3 of his arteries are infected by MRSA, our next steps are heart surgery, if he were a good candidate, which he is not.
4/3 Thursday – Good night’s sleep finally. Going to give a blood transfusion today. Physical therapy today.
8:15am – infection on right side only which is a good sign…high cholesterol…no surgery at this time…going to fight the infection with antibiotics.
8:45am – Signing off on any surgery for hand, elbow
9:30am – The general physician’s outlook is BAD…doesn’t believe the risk is worth the gain for surgery that is a very uncommon surgery due to 3 valves vs 1 valve. He believes we might be fighting a losing battle because MRSA in those valves are spewing out more venom with each heart beat and even though the are AGGRESSIVELY pushing antibiotics into him, they may not be strong enough to fight the venom IN TIME. All other doctors are positive with their piece of it, such as since the venom is on his right side, it’s a good sign. Another doctor advised that the hand, elbow and feet are looking really good now and the feet are improving daily.
He’s really lethargic today even after a much better nights sleep, I see my Jerry every once in awhile, but otherwise he’s far away. Still is answering all questions correctly and doesn’t miss a chance to tell me he’s good and he loves me.
The odds are not with us, but they never have been so we won’t give up. I had a major breakdown after the visit with the general doctor, but I refuse to go down that line, there is too much hope still left before I go down that road.
No poop in 7 days, gave him MiraLAX and now he’s pooping black…more tests now for that. DEAR GOD PLEASE NO MORE IN THE WRONG DIRECTION I WANT TO SEE IMPROVEMENTS, EVEN IF THEY ARE SMALL ONES!
4/4 – Friday – began today differently, I bathed him, brushed his teeth with barely any water because he is on NPO which is no water and no food. We talked, listened to music and just had some us time. Then PT came in and we were both excited because he really needs to get moving around, but it didn’t happen because it took the staff over 2 hours to get to him to clean him from his poop. I was beside myself and about to explode because even though I cannot say enough great things about the nursing staff, they were just unable to keep up with Jerry’s needs.
· CONSTRUCTION THROUGHOUT THE NIGHT BY OUR DOOR
· They do not answer the calls over and over, so there is NO WAY that I will leave him alone.
· 2 HOURS TO COME TO CLEAN HIS POOP
· FINALLY PT COMES AND HE WENT POOP, SO TOOK HOURS TO GET IT ALL BACK TO CLEAN TO CONTINUE AND PT NO LONGER HAD TIME
Because of the continuous black poop with blood in it, they made the ASAP transfer to ICU.
I know it was scary for me to hear ICU but I need to see this as a good direction. He will only have to share his nurse with one other patient.
I know I have to be realistic because it’s BAD, and the odds are not with us, but they never have been so we won’t give up now. I had a major breakdown after the visit with the general doctor this morning, but I refuse to go down that line, there is too much hope still left before I go down that road.
Resting in his new bed and new room for tonight and then tomorrow tackling his bloody stools, they think MRSA has attacked his GI and they will do a major procedure to get those answers.
PLEASE ALL CONTINUE TO PRAY!
4/5 – Saturday – ICU Unit is exactly what we needed. 1 nurse to 2 patients and the care is wonderful!
9am – Doing the Endoscopy to see where the bleed is, they are cautious due to his heart condition. Came through like my hero, no bleeding, probably just not pooping in over 7 days and then an avalanche. I tried to tell them that but they “know better than me”. They did not find any bleed so they will have to do a lower GI to see where the bleed is coming from.
Another rude doctor came in and said Jerry is not sick enough to be in ICU and there are others in need of the bed and Jerry will need to go back to the medical floor.
WTF…
Woke Jerry up at 2am to do a MRI, just a note that this is probably his 4th or 5th one, this one is for his brain and another for his feet/ankle all in one.
4/6 – Sunday – Still in ICU unit until they find a bed in the Internal Medicine Unit. Dr Dong is back on his case, the one with a downer tude, he stopped in and said that until they transfer rooms he will be coming by to see him here. He put in a particular request for only certain units near the nurses station, so it may take longer which neither of us is unhappy about.
He hasn’t eaten in days because every time they allow him to eat, BAM they take it away for more tests. Also, sedating him for these tests because we are NOT drug people sets him back for a huge loop. Then he’s groggy and somewhat incoherent for the rest of the day and night and he’s weak.
He surprises me at times when he’s awake and we’re talking, he asks questions like him knowing about our plan to leave next week that if I was able to lengthen our stay at our current resort. There are so many times he is ALL there with me and the only times he is not is because of sedation. All theses tests need to stop and we need to concentrate on killing the MRSA in his system and regaining his strength.
We came in for one thing and they seem to be finding a million and one other things…
· He now has high blood pressure, never did before, it was 120 over 60 when he was admitted to the hospital.
· His sugar is whacked out which was normal at admission.
· They are concerned with a droopy lip that comes and goes and I explained he has had that sexy Elvis look for years.
· They are concerned with his low speech which he didn’t have until he went for the TEE which is the procedure that they put that camera down his throat. So now he’s having an issue swallowing and they want to put him on a feeding tube.
ARE YOU FUCKING KIDDING ME!
9:35am – Jerry went to get the lower GI thing taken care of because they didn’t find a bleed, he still has bloody stools, but one doctor told me that whatever bleed there was fixed itself and he might still bleed a few times until it’s all out. Almost 2 ½ hours later he returned, I was totally under duress worrying why it was taking so long, communicating is low today.
His hands, arms are extremely swollen again, worse then why we came in the first place.
1:30pm – he went for his tummy test to see if he may begin eating again, and then from there went to new room D306. Communication was terrible, I felt as if we had literally been kicked out so they could get the next one into his spot. The decision to not exchange beds in the ICU unit was outrageous, instead because rooms are way too small on the floor, the ICU nurse said it would be fine to transfer him to his new bed in the hallway…ARE YOU FUCKING KIDDING ME!
WHAT THE HELL HAPPENS TO OUR LOVED ONES WHEN WE ARE NOT AROUND? THAT IS THE REASON I AM HERE EVERY MOMENT UNTIL HE IS CAPABLE OF DOING FOR HIMSELF, AND EVEN THEN I MIGHT JUST STAY UNTIL HE IS DISCHARGED.
4pm – Got the results from head MRI, he has several small stroke bleeds on his brain.
Spoke with the Palliative Care they have set us up with, not Hospice but pretty dam close for my comfort. I’m so scared, and really feel alone but we will get through this, one way or another.
At this point Jerry is resting in his new room and all I can do is pray…waiting on 3 test results. 1) The lower GI research to see where the bleed is coming from. 2) The tummy test to see if he’s ok to eat or they will have to put in a feeding tube which Jerry is really against but he needs nourishment that he could have received if they were not constantly putting him on “NO WATER NO FOOD”. 3) Ultrasound on his right arm that is more swollen than it was when we arrived.
THIS IS A FUCKING NIGHTMARE!
4/6 - 5:30pm – DO I DARE GET OPTIMISTIC? promising news…speech therapist believes we can manage the eating concerns that doctors wanted to put in a feeding tube and Jerry refused. It’s mostly like baby food choices but it’s a start. Getting his nutrition back would be a very great start and then possibly physical therapy. Jerry is fed up and when he’s not exhausted from tests and not eating, he is starting to insist on getting out of bed but he’s so weak it just would not be a good idea. Baby steps…
I refuse to give up on him or our lives…Jerry is still there 100% of the time just as long as he’s not drugged up as they want to keep him. The only pain he has is his hips and back which is a lifetime of hard work and lying in bed for all this time without them allowing physical therapy…that all changes tomorrow. The doctors believe they know more than I do about my husband…THEY DO NOT! They made me feel like crap when I refused to allow them to put in a food tube, but they were so wrong. Sure, he’s eating mash pots, applesauce, pudding, mushed foods and Ensure BUT he did it all and he’s gaining the strength in his throat once again that he lost from the procedure.
4/7 – Noon – The infectious disease doctor came in and said MRSA is fighting hard but there are a few little signs that Jerry is a tad tougher. They’re trying the strongest antibiotic that did not agree with his liver the first dose but the doctor seen a partially negative MRSA result after that dose was given to him, so he’s going to try again but closely monitor his liver.
The ultrasound on his swollen right arm showed NO BLOOD CLOTS! No word about the belly test results yet.
I am so proud of him and myself…him for being so strong and me for standing up to the doctors to assure they are onboard for his full recovery!
PT arrived and he sat up in bed without any support for a long time, then he got up off his butt on his legs for a brief moment and we celebrated! Baby steps…
Against my better judgment, I allowed the nurse to talk me into giving him a muscle relaxer prior to PT that he did not need that had him sleeping most of the evening, even though I had them reduce it to half of a muscle relaxer it still knocks him for a loopy ride. We are not nor ever been drug people, so a small dose goes a long long way.
4/8 – Began the morning from a long nights sleep, Jerry doing exercises to regain strength in his arms, legs, throat and lungs.
10:30am – Catheter was removed, now he has to pee within 5 hours or they have to replace it. Our goal is not to take any steps backwards, so he’s got to go. When they remove it, patient must pee within 5 hours or a bladder scan had to be done and then catheter would have to be reinserted. Talk about Jerry being dramatic…time had passed and they were heading in for the next step and wahlah he went and couldn’t stop! Life is good!
11:30am - ID Doctor said the strongest antibiotic is working, he got a negative result…ALL we need are 5 negative results in a row to let us know MRSA has left the blood stream. Doctors are amazed at his progress but still very concerned. If MRSA can get out of the valves I would feel a thousand times better. This turn is only the beginning, it’s a long road ahead rehabbing his body back to strong like bull, but each step in the forward motion is all I need. ID Doctor ordered another MRI due to his back still hurting and his concern was that MRSA, even though on last scan was not in the spine, it was very nearby and he does not want to take any chances. When they told me it was to be a 2 hour procedure, I took advantage and ran home and showered, changed to clean clothes and just to check on things since it’s been 24/7 at the hospital just to make sure everything is being done for Jerry’s comfort. He’s a lucky man, but I also know for a fact that he would do the same for me without hesitation.
On our return they changed our room AGAIN, but this time it was for our comfort, a much bigger, brighter room where he got lots of rest.
4/9 – Jerry is doing so much better doing his exercises and is eating, if you can call it that. Some of this mushed stuff is just amazing how much it tastes like the real food because most of it looks like a blob of weird colored jello. Drinking thickened liquids is new to us as well, water, juices, milk with a thickness to it. All of this until he strengthens his throat once again so that the liquid doesn’t go straight to the lungs and instead goes to his stomach. Just very grateful that the thicker stuff goes to the stomach and doesn’t try to sneak into the lungs, cause the feeding tube alternative was not going to happen.
Doctors coming in daily with their part in his body, so far kidney doctor said his kidney is still doing great through all of this crap.
The ID doctor gave us a 2nd negative…PRAISE THE LORD!
Once we get 5 negatives that means MRSA is no longer in the bloodstream multiplying, but the vegetation it left will remain in the areas but just not growing. It will then need 4 to 6 weeks of continuous IV antibiotics to kill the vegetation which can be done simultaneously with his rehab, only issue with that is our Medicare only covers 20 days of rehab. It is very important that the vegetation gets removed ESPECIALLY on the heart valves.
BREATHE…ONE DAY AT A TIME…I KEEP TELLING MYSELF THIS ALL THE TIME!
Doctors are so frigging amazed that he is coming along so quickly, all I tell them is that we are fighters and most importantly we had prayers going EVERYWHERE!
WE’VE GOT THIS! KEEP PRAYING PLEASE!
4/10 – We both had a good nights rest and our day began at 7am with lots going on but all good. It’s 9am and exercising is done, breakfast eaten, and sponge bath complete, he’s happy and content for now. Morning and afternoon he was wide awake and busy with exercises, but late afternoon and evening he was zonked out. I just let him sleep when he is not being poked, prodded or asked a million stupid questions to see if he’s still alert which he has been EVERY TIME.
Kidney doctor came in and all is still well but he will continue to monitor him.
3 DAY NEGATIVE…PARTY…DANCING LIKE A FOOL!
4/11 – Another good nights sleep, the constant flow of nurses coming in has slowed tremendously, but they still find themselves coming in usually during a deep time of sleep. The worst times are when they come in do what they do, leave and just as we fall back to sleep either another nurse for something else comes in or that nurse forgot something…it’s crazy I tell you. How on earth is any patient supposed to get any sleep is beyond me. The polls say the hospital is the worst place to get any rest and I have to totally agree!
PT showed up and kicked his ass, he is so frigging weak. I have begged for PT but hospitals are not the best place to have this happen, so he may be moving to rehab shortly since health wise he only has to stay with heavy antibiotics which is why they put a PICC in his arm, for the antibiotics for up to 6 more weeks possibly. Now, we need to regain his strength and get him up and out of bed, and not sleeping all day as he’s doing today.
Kidney doctor said there was a slight heighten to something or other due to him not drinking enough water. He does not like that thickened crap, but I will start forcing the issue.
Infectious Disease Doctor is by far the most wonderful doctor of all of the others. He’s calming but tactful without becoming alarming, he’s just been my life raft through this all. The general doctors conversation today with me was disturbing, she was almost saying he’s ready to get discharged and sent to rehab, and when I mentioned he hasn’t had 5 negatives and she said it’s really not needed. Anyway ID Doctor straightened it up by assuring me that he cannot be discharged until he gives his okay, and for me to relax and not worry and he will make sure MRSA is under control before he gives his okay. I know it’s getting close and even though PT worked hard on Jerry today, he didn’t seem as strong as he was a few days ago on his first PT session. He’s disappointed and so am I but I will not be showing Jerry, I just let him know how proud I am of him.
The rehab facility came by to discuss the steps needed for him to progress, and now comes our financial dilemma. I will not allow our finances to dictate what type of treatment he is going to receive. Being off this last month has already put us in a bind and going forward was going to be rough, but now with possibly $400 per day out of pocket, paid in advance…ouch! But I will not allow money or anything else to stop Jerry’s progress and the very best care that he deserves so that he gets as strong as he possibly can to continue living our lives!
I need to find legitimate work from home, if anybody has a connection with whom I can speak with to get me working, I’d really appreciate it.
4/12 – Day 14
Received a call from rehab facility that he made an error and that under our insurance they will pay in full for therapy for 20 days and then it would be out of pocket at $200 per day…OMG THANK YOU…hopefully we can get him out in 20.
They were talking about discharging him today, and I feel, the sooner the better, he needs to begin regaining his strength. Unfortunately, his kidneys, bladder and liver took a hit due to the antibiotics, sort of a late allergic reaction which is causing blisters everywhere, this came overnight because as we were cleaning him last night I checked out his body thoroughly, something I do daily. Now once again we wait for results to see what’s happening and why.
They had to reinsert the catheter since his bladder was not emptying. It’s so hard to manage this all. I usually love roller coaster rides, but this one sucks.
Another blood transfusion, this makes 5 or 6 now…I just pray that the blood he’s receiving is from a strong young man, so he gains strength from it.
Doctors are concerned but so far he’s been doing much better than any of them anticipated, and they are not giving up on him. But, at the same time they want to prepare me for what could happen…I refuse to prepare myself for what could happen…GOD KNOWS I AM NEVER GOING TO BE READY FOR THAT AND HE HAS TO KEEP HIM IN MY LIFE…WE HAVE TOO MUCH MORE TO DO WITH OUR LIVES TOGETHER!
We always told ourselves that we would not ever put ourselves into this position of feeling as if we lost control of our own lives. Even though I have stood up for a lot since arriving 14 days ago, but it totally confuses me that upon arrival we just needed to kill MRSA. His blood pressure and his sugar was normal, all his organs were all in great shape, but now EVERYTHING is not normal anymore. We never wanted to be poked and prodded over and over again. If the doctors had it their way, he would be hooked on pain killers for a chronic back/hip pain he’s had for years. That is the only pain he feels, except for the huge black and blue bruise they caused on his left upper arm. Now all the blisters all over his body is just another side effect.
Not really sure what this all means but the one thing I know, we are not going into rehab today. One day at a time…BREATHE!
4/13, Sunday – Day 15
The 5am vital check sent us all into a frenzy! Blood pressure up to 236/78, then taking it several times within minutes of each other, it was not lower than 197/72. Cool rags, ice chips, and more praying until an hour later they gave him high blood pressure meds and it’s dropped to normal.
His kidneys numbers have not gone higher, but they have not lowered either, but he needs this antibiotic, so all we can do once again is to pray that God guides these doctors to the right decisions going forward.
We need rehab, we also need to begin a more natural healing process for several of these ailments, instead of immediately the doctors choosing drugs. And, we also need to get him to eat more, he’s hungry, but this mush is disgusting. I’ve talked this all out with the doctors, and they tell me that I can bring anything from home for him to eat, that would be nice but I don’t go home, tried the cafeteria but nothing much to offer him.
They have tried several antibiotics during his stay and Clindamycin and Vancomycin were working the best but has put a strain on his liver, kidneys, & bladder, but it was such a small risk that the doctor decided to continue. Not only did it cause his blood pressure to rise beyond the limits, but now he has blisters on his body EVERYWHERE, and more areas continued to get them, and in a worse way. Doctor decided to stop them both and continue with Doxycycline in hope to stop his side effects. To control his high blood pressure they have him on - HydrALAZINE HCI 50mg & Coreg Carvedilol.
One day at a time…BREATHE!
4/14, Monday – Day 16
So much time in the hospital, and it really seems he’s worse off than when we arrived. All the outer issues that I can see keep happening that make it all look worse. Not seeing what’s going on in the inside is hard for me to gauge it all.
His 5am wake-up showed his blood pressure low at 110/68 and then rechecked 30 minutes later was 145/70, what a frigging roller coaster. I have never seen blisters like the ones that are everywhere on his body, and they are popping and raw.
No PT or OT, or Speech or Nutrition Therapy for days again…HOW DO THEY EXPECT IMPROVEMENT IF HE’S NOT GETTING THE BEST TREATMENT! I lost it and bursted into tears with the nurses and doctors and when I asked, they said it’s a hospital that takes care of the medical part and their therapy is limited. Well get the MRSA under control so we can transfer to rehab because every day he lies in this bed, not only is he losing his physical ability, but now I can see some mental strength failing. I really have to pump him up right now so he doesn’t dive into that black hole of despair. So far my love for him is stronger but not sure how long that will last.
It feels as if this nightmare will never end, living at the hospital with no connections to the outer world is taking a toll on both of us. Every day seems to be just another challenge to overcome. We both know that we are strong, but we too have our limits and we are about to reach our max! God, please show us that you are here with us and you will perform a miraculous day for us so we are able to move forward with rehab, and then back to living.
PT showed up and he was able to sit up in bed for a short time, and they were able to show us some exercises for him to do. The nutritionist came in and I begged for her to please ask the cafeteria to change up the flavors. Vanilla pudding, yogurt, Ensure three times a day is boring, and his meals are mush so we need to give him a variety to keep him interested because he is hungry.
4/15, Tuesday - Day 17
Rough night, his back and blisters hurt so bad it started to affect his breathing. We are both non drug people but I gave in for him to get the lowest dose of muscle relaxer just so he could rest. It helped and by 1am he was asleep but then the constant parade of nurses coming in taking vitals and checking on him was not helpful.
The speech therapist came by and before she will adjust his food choices, he has to get that X-ray while drinking that solution again, scheduled for tomorrow.
The wound doctor came in regarding the blisters and most of them are already getting better, so most likely it was an allergic reaction to the antibiotics. She put salve on them and wrapped some of the worst blisters.
The antibiotics are continuing for weeks to come and it looks as if rehab is back on the table within the next few days. Really looking forward to beginning rehab, so he can begin getting stronger, it’s going to take a long time but he will regain his strength.
4/16, Wednesday – Day 18
WE NEED TO GET OUT OF HERE TO REHAB – 18 DAYS IS LONG ENOUGH!
What a frustrating night of no sleep. I ask, I beg, I plead for the night nurses to for once put us on their first visit list, but no they have always saved us for last, except a few times the night nurses had him all accessed, meds taken, bed fluffed, and him being ready for bed by 10pm, otherwise it’s been midnight. Then they come in for the 2pm vitals that is not that intrusive, except when he gets totally awaken, then it’s hard for him to fall back asleep. Then it’s the 5am intrusive visit, wants to rearrange him when he is finally comfortable, and ask him stupid questions to see if he’s alert.
WE HATE HOSPITALS, and this first time in forever that we’ve been to one reconfirms our decision to stay the fuck away from them going forward.
They continue to add drugs to his list of things to take, and I keep turning them down, I just can’t imagine what others are having done to them because they don’t have their loved ones 24/7. He has had loose stools everyday since the explosion from the MiraLAX, but they continue to try to slip a stool softener in 2 times a day. Then last night they added a blood thinner, even though EVERY X-ray, Ultrasound and MRI showed no clots, they wanted to be proactive. I was appalled because if they would have looked him over they would have seen that he was actively bleeding from the new blisters almost everywhere, even in his mouth. Every time they show up with his meds, I make them tell me what every one is and I either approve or he doesn’t take it. He’s on several blood pressure meds because it’s been extremely high, even though he has NEVER had high blood pressure, nor diabetes, nor high sugar before in all our lives and all of that was totally normal when he was admitted, it has all gone the wrong direction. He is worse off physically today then he was 18 days ago, the only good thing I can say is that I am told that the MRSA is out of his blood system. Still in vegetation mode throughout his body, so now we have the fight of our lives ahead, and we are both ready for it. I’m afraid if we keep putting it off, I will lose him, either physically or mentally because he is getting more and more discouraged.
He’s almost just laying back and allowing everybody else to take care of him because he doesn’t have the strength any longer. Again, they started coming up with excuses to keep him as I sit by and watch him get worse. I can’t let this happen, so I pushed the issue and we are heading to rehab, and not a minute too soon.
He is fed up and too many times today while waiting for the approval for rehab, his eyes were glazed over and I thought I’d lost him, then when he awoke finally he wanted to get out of bed by himself. I tried over and over again to tell him he has to wait until he gets stronger. He’s just tired of laying around and we are both tired from not getting enough rest. Our goal now is to get him stronger and then together we can handle the rest of our lives.
4/17, Thursday – Day 1/19 - REHAB
We’re here and heading in the right direction of healing. PT/OT arrived this morning right after breakfast and he got a workout but it was just an assessment, going forward they will be here 5 to 7 days per week. Halleluhah! Thank you God!
They are working on healing the blistering that is everywhere! His appetite is back and it’s real food he’s eating. Speech therapists assessment should be today, he needs to get his voice back, also to be able to drink thin liquids. He’s good on small bites of softer type foods and thickened liquids for now but once the throat muscles get going, he will be much happier because it’s hard communicating with him without his voice and his meal choices are not great.
Seems as if I’m being tested and I’m failing miserably. A great start to the day, but then shit hit the fan. There was a mixup because we were guaranteed we would have a private room, but when we arrived they put him in a shared room with a tiny bed where his legs to his lower calves are hanging off. Said they would handle it first thing in the morning and nobody would be moved into the other bed, but by 3pm, NOTHING! And then they began moving another patient in and I explained what was going on and instead of moving Jerry to the private room, they moved the other guy. I just really want to know how in the hell do patients without 24/7 watch guard like me make it through their stay without incident. After speaking with several nurses, the charge nurse with no help, I went to the top, and was told he will be moved to a private room with a larger bed tomorrow.
The wound nurse spent 2 hours, photographing, cleaning, putting ointment on and wrapping all his blisters. They are BAD! Wore his butt out, so now he’s resting.
I am so glad that I stopped the pain killer just after 2 doses they had him on. I just seen that it was Oxycodone which is a Opiod. The terrible epidemic that’s going on, I can’t believe they continue to dish it out as if it were harmless candy.
BREATHE…ONE DAY AT A TIME…TOMORROW WILL BE BETTER!
4/18, Friday – Day 2/20 - REHAB
Interesting good day. We got moved to the private bigger room with a longer bed with an air mattress. Speech Therapist and the Nutritionist came by and we’re all on the same page regarding his food. The ST will be visiting 5 days a week to help with his throat, swallowing and his speaking again.
PT assisted with the transfer to his new room by sitting him up and putting him in a wheelchair. The first time I’ve seen him sitting in 20 days, I was excited, even though it took everything out of him, it showed him what it felt like to be off his back.
4/19, Saturday – Day 3/21 - REHAB
Still not getting his or my needed rest when they are coming in after 10pm to take care of “things” and then again between 4 and 5am, because it seems there are times during the night we have our own issues to deal with, such as potty breaks or Jerry trying to break out of his bed. It’s better but I just want him to get better and go home…we are both so done with hospitals.
His catheter was leaking so they pulled it out and it had stuff all over it and clogged, it was so painful because he is raw there too, not blisters but just from not being totally cleansed. The nurse was going to put it back in and I told her absolutely not, she said he might still have bladder issues and I told her to give him the bladder ultrasound first. Of course it showed his bladder was functioning and not retaining. I am really getting tired of them doing only because it’s protocol.
My daughter came by and did our laundry and brought over some needed supplies, I am so grateful for her assistance. She told me that 3 of her friends have recently been diagnosed with MRSA…ITS LIKE AN EPIDEMIC! She even said, she had it in her armpit years ago, I have never even heard of it until the doctors told me what he had, and then I had to research it.
We had been watching our carbs and had lost about 30lbs each, but in the last 21 days, Jerry has lost another 50lbs, this diet is not recommended. He’s eating, but nothing all that great, just little meals 3 times a day. His appetite has increased a lot since being in rehab because the diet here allows him to eat real prepared food that they just cut to tiny portions, and so far he’s enjoying the new tastes. Hopefully he’ll continue eating so he can get healthy again.
Clean clothes and a shower, wow, never thought it could be so nice! Shaving Jerry was on the list of things to do, and now I have my Jerry back. In 28 years of marriage, I have never seen him with this much hair on his face, and I didn’t like it, it makes him look so old. I’ll try to keep up on it now, but will have to just continue using the electric razor, he refuses to allow me to use a razor blade on his face. Another thing, he cannot lift his head without a lot of effort, so he has a skunk streak on the back of his head because he could only do so much each way without any help and at this point I did not have any more energy to continuously ask for IMPORTANT things and just get brushed off.
They started an IV with sodium chloride injection because a nurse said he was showing a slight dehydration with his last labs. And, they FINALLY changed the wrapping on his PICC IV, that I had been begging them to do since early yesterday.
We are both concentrating on the good things and trying to just move forward from the not so good things.
There are so many photos, but they are gory looking and I’m not ready to share them yet!
