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Thread: To ER Tomorrow

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default To ER Tomorrow

    ((((((HUGS TO ALL)))))) ~

    The option for a mobile chest x-ray for Jon was eliminated today, since the turn around time for the results is too long. Jon's nurse called Dr. A and spoke with a new nurse, about Dr. A authorizing a mobile x-ray, and she definitely tried to make that happen. Dr. A wants Jon to go to ER for the x-ray.

    Jim was just about to go to bed when I spoke to Dr. A's nurse. It was about 4:30, as I was on hold for 20 minutes, while the nurse was with a patient, so I asked the receptionist to ask her to call me when she was finished. We had a very nice conversation, and she was kind and compassionate. When I explained to her that Jim had to go to bed, and I needed a few hours of decent sleep, before we trudge off to ER, she understood.

    If we left at 5:30, 6:00 this evening for ER, we’d be there all night. Even if he wasn’t admitted. Jon is comfortable, and he’s on O2 with SATS of 94, and he’s on an antibiotic, and we’re taking super good care of him. I feel that we are safe to have one more night at home.

    So, sometime tomorrow morning, I will call the ambulance company (no paramedics needed) to transport Jon to ER. If Jon is admitted, then at least Jim can come home, so he can go to bed to rest up for his night shift.

    I’ve been preparing for this. I washed all of my “go to hospital and/or dentist” clothes today. I packed up my purse; replaced the Altoids, which expired in 2012, with a fresh tin. I want to have fresh breath, when I talk to all the folks in the hospital, and Altoids are like a pacifier for me, when I’m stressed at the hospital. A little sugar rush, perhaps, to keep me going. That and my bottled water are staples for me in the hospital. Hydrated with fresh breath and clean clothes!

    I’ve packed up Jon’s ER kit:

    syringes, med cups, meds, cups for water
    1 bag of formula and a spike set

    We bring these, because it takes forever to get meds from the hospital pharmacy, when in ER. And if we’re there a long time, and he needs his meds, I just give them to him. I don’t ask permission. I just do it. I have it all with us, so I don’t have to ask the nurse to bring us anything.

    ER information sheet on Jon

    I just hand the info sheet to paramedics, EMT’s, admitting, ER nurse/doc, ICU nurse. That saves me from repeating it a thousand times. Everything they need to know is on this info sheet.

    I also have a good supply of alcohol wipes and bacterial hand wipes for me and Jim. I use the wipes to clean the bed Jon’s in, the railings etc. Yeah. I do.

    If Jon is admitted, Jim will bring in Jon’s radio and his bath toiletries on his first shift.

    Tonight, I bathed Jon, giving him the “spa treatment,” so he could feel clean and fresh. He smells delicious ~ coconut, honey, almond, all organic.

    It has been 3 years since we’ve been in the hospital, and I reckon a lot of the folks we’ve known through the years have retired. I have no idea who the pulmonologist will be for Jon, based on the political and financial agreements these docs make in taking on Medi-Cal patients. It changes often, so we may not even know the doc, who ends up treating Jon. I’m hoping we get one of the docs, who knows us, so we don’t have to start from scratch.

    Jon might go into ICU, but since insurance situations have changed, maybe not, if he doesn’t need a vent, which I don’t think he does. He definitely needs O2. But the factor for him is the trache. So he has to go to Step Down, with 1:2 patient care. We know that unit so well, of course. The highlight will be to see our nutritionist/dietician. Jon has a mad crush on her, and she loves on him, and he needs that. Jon enjoys the socialization at the hospital, and this is one benefit for him. Lots of pretty ladies being sweet to him. What man wouldn’t enjoy that, eh?

    If Jon is admitted, and I strongly suspect that he will be, we will not consider this a failure on our part. We did everything we possibly could for Jon here at home. We’ve conquered so much with Jon over the past 3 years, we just felt we wanted to give it our best try to avoid going into the hospital. And we have. We have worked day and night, for 9 days and 9 nights, caring for Jon. I just hope that the docs and nurses at the hospital realize that we haven’t been depriving Jon of hospital care for no good reason. We truly thought we could beat this at home, with Jon’s nurse's fabulous, incredible, above and beyond support, and Dr. A’s efforts to supply the needed components. He has requested a visit from our PT, and we have an Albuterol refill for breathing treatments at the pharmacy waiting.

    Jons’ temp had been normal all night and most of today, and now it’s jumped up to 101. So yeah. He needs more than we can give him, likely IV antibiotics.

    Jim and I are already anguishing over the pain that Jon will experience being loaded onto the gurney and laying on it, riding in the ambulance with the bouncing, waiting to be transferred to an uncomfortable ER bed, then being transferred again to a hospital bed on the unit. That is just so much disturbance for him, when he is hurting all over already and hasn't been well enough to have therapy. Just turning him to change his under pad caused him distress. That huge torso, his hips, his knees, his fever, his lungs, and it all must be just awful. This is why we didn’t want to go to the hospital ~ it is a huge ordeal for Jon.

    But if we don’t do this, if we don’t get this intervention, he will decline more, and then it could be critical. So off to ER we go tomorrow, with positive energy, hoping that the people, who have cared for him for years and love him are still there, and that those who meet him for the first time will fall in love with him as everyone else has.

    I will try to update tomorrow. It's going to be a very long day, but I'll do my best.

    Prayers for all of you ~

    Love & Light,

    Roslyn
    Last edited by Earth Mother 2 Angels; 08-17-2015 at 07:39 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Good luck Rose. I am thinking of you, Jim and Jon and sending heaps of love. xox
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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    Distinguished Community Member Jo6's Avatar
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    Rose, as always our love and prayers are with you, Jim and most of all Jon. I've had so many times with the moving around at the hospital I hurt just thinking of dear Jon. Of course you and Jim too.

    More than once they left me and others in the halls of ER. Please know we are praying for all of you and are hoping this ordeal won't be too hard on Jon.

    Rose, it sounds like you have you're "get up and go and hurry up about it" kit. You've been at this much longer than I have, but I do take a small bag every where I go. It's a chore, but much easier to be prepared than have to try to remember what you need after you get there.

    You take care of your self, Rose. You know how important that is. I've learned a lot from you and I do so appreciate all the things you have sent my way.

    I love you dear one and am praying for all of you especially Jon.

    Take care, Julia
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    Oh no I'm so sorry to hear this Rose... I wish I could help you, this all sounds so exhausting. I know that hospital mode, and you're so well prepared. (I wipe every single surface anytime kathleen is in the hospital) Please know that my prayers are with you and feel my (((HUGS))) and positive thoughts. I'll be waiting for a good update. You and Jim are truely amazing and YES you've both done everything to not get to this point but you will also be right by his side getting him through this too. Take care of yourself, you've got this!!!
    Mary Grace

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    Rose,

    Hugs and love to you guys! Kristin

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    Sending prayers up for Jon and you and Jim.

    Marcie

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    Distinguished Community Member andromeda31's Avatar
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    Hi Rose,

    I've been thinking of you all day....hope the transfer to the hospital went okay for Jon and that he has avoided the ICU. You & Jim provide the best care for Jon and I hope the hospital can see how loved and well cared for he is and not give you any problems. Sending prayers for strength and healing and hopefully and speedy return home!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile We Are Home!

    ((((((HUGS TO ALL)))))) ~

    Thank you all so much for your love and support.

    WE ARE HOME!

    Yes, you read it right. We are home, and Jon is sleeping soundly, comfortably in his own tootsie bed. His turn around today is rather remarkable. And, here we are.

    Jim and I were on our last legs this morning. We had intentions of attempting to get to ER by 10 a.m. I was nauseated. Stress. Jim was just exhausted, because he is still trying to recover from his RA flare. Finally we forced down some eggs, toast, and baked beans, took our showers, and were ready to roll.

    I called the ambulance company #1, and they said theyíd be out by 1 p.m. A 40 minute wait. 12:45, #1 calls and says that all of their rigs are on a major 911 call, so they canít pick up Jon. The dispatcher referred me to a former company #2, who we donít particularly like, and I called them. They no longer transport Medi-Cal patients. So I ended up calling #3, and they agreed to transport Jon within a 20 minute time frame.

    Two very nice young men arrived in 20 minutes, and they triaged Jon, then lifted him onto the gurney. In all of the years that Jonís been lifted onto a gurney, these guys were THE BEST. Jon landed perfectly on the gurney, which was more padded than #2ís or #1ís gurneys, and they pulled him up with ease, sat him up, and Jon didnít even blink. He seemed comfortable the entire time he was on the gurney, even with the bumps in the road. I sat in the back with him, and the EMT took Jonís blood pressure, pulse, and temperature THREE TIMES in about 7 minutes! Thatís how close the hospital is to our home. And their rigs were clean.

    The ER was packed! I was astonished, because it isnít flu season, and itís hot, but itís in the 80ís today, so not really heat stroke weather. Did we have some kind of major disaster? It was so full that an announcement was given over the hospital intercom that there were no available beds in ER. Then later, it was announced that beds were opening up. Iíve never heard that before.

    We waited in the hall opposite the central comm unit, where doctors sit on computers and write orders. A very young, handsome doctor approached, and I gave him the run down, and he absorbed it all, and immediately offered a plan. He found a room for Jon quickly, so he could get off of the gurney, and before we started, I explained to him that if Jon is admitted, we would request Step Down. He agreed completely, ďWouldnít send him anywhere else.Ē And then I explained that Jim and I know what to do at home, and that is the preferred destination, IF Jon is well enough to come home for that care. He agreed, ďbut letís find out what the tests tell us about his condition and go from there. Home is the goal. But we need to know what heís dealing with first.Ē

    Once settled into the ER bed, a bevy of people descended upon us. Admitting. Nurse. Nurse assistant. Phlebotomist (blood draw). Dan, young fire fighter paramedic intern. ER aide. They were all over it, getting things done. Nurse, young woman, a sweetheart, who said, ďJonís blue eyes. Wow! They just draw you in! Like the ocean, like the sky, like Ö amazing."

    We got a feeding pump, and I hung Jonís formula. He had a UA, a blood draw, and a Heparin lock in his hand, since the blood draw was difficult. Painful. Dan, who placed the lock, said, ďIf heís admitted, this is much better than poking him a hundred times for blood.Ē Fun choices, eh?

    We later learned that everyone thought Jon would be admitted, when he came in, just from looking at him. But, the difference came, when a Respiratory Therapist appeared, set Jon up for a breathing treatment, which I administered, and then deep suctioned him to get a sputum sample. She got out a ton of gunk from his lungs. And he suddenly turned the corner. He was on 2 liters of O2, which also helped him, so weíve increased from 1.5 to 2 liters at home now.

    His blood pressure was excellent, SATS were 97. Heart rate down to the 90s.

    With each of these people, we shared a bit of our history, and they asked us a lot of questions. Every moment is a teaching moment to me. His nurse asked me to give Jon the Bactrim (antibiotic) via G tube, so she could watch me. ďOh, look how you kink the tube with your little finger to prevent air! Thatís the trick!Ē she exclaimed.

    It was Danís last day on his internship. When I thanked him and said we were blessed to have his care, he replied, ďIím the one who is blessed today meeting your family. What a great way to end my term.Ē

    Test results arrived in rapid time. Turns out that Jon has a UTI. His white blood count was high in his UA. Hence, the Bactrim. Also, Jon has a small amount of pneumonia in his lower left lobe. We actually saw the x-ray, as they have new machines now, where the x-ray shows up on a monitor immediately. When Jim and I looked it with the tech, he said, ďlower left lobe, but otherwise his lungs are clear.Ē Now, heís not a radiologist. But we could see it for ourselves, and he was simply verifying.

    Doctor arrived to tell us that heíd spoken to our Infectious Disease doc, who said to keep giving Jon the Zithromax, as it is working, and to add Bactrim for the UTI. I have to check our charts from years ago, when I think Jon had some adverse reaction, possibly a seizure, while on Bactrim. Itís the go to antibiotic for UTIs.

    He discharged Jon to go home! I hugged him and said, ďI love you!Ē I couldnít contain myself!

    We arrived at 1:45, and we were on our way home at 5:30. That is amazing.

    As we were rolling out through the ER, Jonís nurse was on the phone. I blew her a kiss and thanked her, and she returned the kiss and said, ďThank you! Iím so glad that I got to meet you all!Ē Dan and the phlebotomist were chatting, turned to wave good bye to us, with thumbs up and big smiles.

    Looks like everyone fell in love with Jon.

    Right now, he is sound asleep. The most peaceful sleep heís had in 10 days. Heís rockiní his SATS at 97, and his heart rate is 93, finally out of the l00s. Iím sure that he is completely exhausted from his infections and todayís jostling. He is on the road to recovery, and we give abundant thanks.

    Now, Jim and I plan to sleep and eat more! Iím so looking forward to that!

    Thank you all so very much for your prayers and positive energy. I know that you were instrumental in todayís results. And we are so grateful to you.


    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Rose great news! So glad you're home! Sounds like you were surrounded by some really great caregivers. I hope you all get some well needed rest. I'll continue the positive thoughts and prayers for continued healing and good health for all. Your family is such a positive inspiration! I'm so glad that you were reminded of that by the Dr.
    Mary Grace

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    Thumbs up Jon Is Improving!

    ((((((HUGS TO ALL)))))) ~

    Thank you all so much for your prayers and positive energy, which are certainly working for Jon. He had such a restful, peaceful night of sleep. He is sleeping a lot, but that is to be expected with pneumonia. Unless youíre in the hospital with pneumonia, of course, where no one ever is allowed to actually SLEEP!

    Normal temperature all night and all day. Currently, slightly elevated at 99.5. SATS, while on 2 liters of O2, are steady at 95-96. When the cannula comes out, or Jon tugs it out (weíve removed the arm restraints, and heís been generally cooperative about not taking out his cannula, but still casually scratches his nose and out it goes), his SATS drop to 85. So, weíve explained to him that this annoying cannula is keeping him at home and out of the hospital, and that it isnít going to be on his face forever. That seemed to make him more obliging. Although, it hasnít stopped him from removing the cannula.

    Heís not pooping, and his urine output is a bit slower than it has been, oddly. I expected that the antibiotics would impact his output positively. In 19 hours, heís produced 1200 cc. A little over 60 cc/hr, which is his norm.

    He had a much better breathing treatment tonight, after Jim brought home the new Albuterol script. Ours expired in 2014, but we had to keep using it until the pharmacy could get in a new batch. It isnít something they carry regularly. Special order. And I was remiss in not getting a new script, before this one expired, but we never used it, so I didnít think about it.

    He gave a hearty cough, with his trache plug removed after his treatment. Iím pleased to see that the mucous is thinner, whiter, and less copious. Looks like the Zithromax is working. He will be taking it for a 10 day course. Jim brought that home today too, along with the Bactrim for the UTI.

    And that was another goof I made. Jim went off to the pharmacy, with me believing that the hospital called in the two scripts. They didnít. Jim called me from the pharmacy, asking what to do. Suddenly, I realized that the scripts must have been in the stack of papers the nurse gave me when we left. Then, I couldnít find those papers. I was running around the house, room to room, trying to remember where I put them in the midst of unloading all of our stuff last night. I finally found them, and Jim had to come home to get them, take them back to the pharmacy and get them filled. I felt so bad that he had to make two trips, because he is hurting quite a lot these days in his shoulders, arms and wrists. He is still battling his RA flare, and heís quite fatigued.

    Jonís belly fluid has been reduced significantly, although he still has fluid in his torso, hands, legs, and feet. But his gut no longer looks like heís 9 months pregnant, and his water is about to break! That is a major improvement. Dr. A has authorized our PT to visit, and Jon's nurse backed it up with her request, so now we wait for the System to process all of that, so we can have our PT's expert care.

    Tonight, as I was bathing Jon, he gave me his big goofy grin, and then he started to verbalize in his goofy ďJon-speak.Ē My heart just soared with joy. Perfect sign that he is feeling better.

    I managed to accomplish a lot today: 2 loads of laundry, changing the sheets on our bed (seems simple, yes, but our bed is not easy to change), putting away everything we took to the ER for Jon, emptying our many trash bins in the house, and I cleaned out Jonís closet, in a search for existing respiratory supplies. Things I havenít touched for YEARS, shoved into the corner of his closet. I found cannulas and trache masks, which I saved. The rest was useless, and it is in the recycling bin ~ two large bags of stuff.

    In keeping with our promise to eat better, I am cooking tonight. I made Jimís Quorn roast, which he loves, and Iím steaming Rainbow carrots, small potatoes and cauliflower. I would make a cheese sauce, but Jim canít have cheese (nor should I, really, as I have RA also). If Iím able to stand for 1/2 hour or more, I might try to make a sweet onion/garlic gravy. But, truth is, I donít feel like it! He wonít care. Heíll love the food as it is, because he hasnít had a decent meal in nearly 2 weeks. Nor have I.

    At 6 tonight, the hospital called and left a message for Jon that they have a result of one of his cultures. I will call in the morning to find out what it is. I hope that this doesnít change the course of Jonís treatment. He is doing well at this point, and I am now a tad bit nervous about this phone call and what it means.

    Also, I need to call the O2 supplier to ask whether the concentrator should be looked at by a service tech, since it hasnít been used for 3-5 years, and then only a few times. It seems to be working fine, but what do I know?

    I did sleep fairly well last night for about 5 hours, which is like a vacation for me, and I did walk over a mile this morning, my first walk in many days (Iíve lost track Ö). I didnít walk when it was hot, like 82 degrees at 8:30 a.m. The sea breeze was delightful this morning, and I even had some time petting one of my favorite dogs, while his owner was on his cell phone. Coco, a brown and white dachshund, and I are BFFs! A very therapeutic walk for me.

    Thanks to you and your steadfast love, prayers and support, we are moving forward. We are so very grateful. Thank you, and know that our prayers are returned for you ten-fold.

    Abundant blessings upon you all and upon those you love ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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