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Thread: What Is Next For Jonathan?

  1. #341
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    Default Toenails, Turning, Wounds, O2, Sleep ... SLEEP!

    ((((((Hugs to All)))))) ~

    Jon had a pretty rugged day today.

    TOENAILS AND TURNING

    Our wonderful toenail gal managed to remove two bits of ingrown nail from Jonís big toe. He only has a thin crescent of nail at the cuticle. She also took off the nail on the toe next to the big toe, as it had infection too. Jon didnít flinch, and Iím sure it had to be painful. Now, he must feel relieved to have that pressure gone.

    Jonís nurse arrived an hour later than scheduled, and Jon was nearly asleep then.

    Drainage was terrible, and the Calmoseptine was almost non-existent. His rear end and testicles are just one giant weeping splotch. His nurse cleaned with SkIntegrity, dried the area, and then applied Hydraguard.

    I can only imagine how uncomfortable it is for Jon to lay in that drainage. The urine leaking from his catheter probably burns. It probably itches. No wonder he wants to scratch everywhere. He did that again to his colostomy flange today, and to the crease between his left leg and groin. We have to restrain his wrists, and it just makes us feel so sad to do that to him. But we have to protect him.

    Meanwhile, his vitals are outstanding. Heís tolerating 70 cc/hr of formula. Heís not filled with fluid. His bowels are moving extremely well.

    He was happy to see all of the ladies today, did his ďshyĒ routine, then it was miles of smiles. Heís just incredible.

    O2 CONCENTRATOR UPDATE

    I emailed our docís assistant today to ask about the status of Jonís O2 concentrator. She responded that the insurance company said they set up a contract with another supplier on 12/21/18. Several years ago, we had that supplier, and they are horrible. I had to insist the insurance provide us with a different one. Iím sure not going to use them this time!

    This is odd, since Jonís insurance case manager told me to have our doc submit a script for the DME, which weíre using for all of Jonís other supplies (including suction and trache), two weeks ago.

    So, tomorrow I will call her, then our current DME, and then email our docís assistant. I will make it clear to Jonís case manager that this has been handled very poorly.

    First, two weeks ago, Apria called to tell me that they were taking Jonís concentrator away in less than a week. Then I found out that this all came down on 12/12/18. No notice was sent to Jon about Apria losing the contract, or the process to be followed to get a new vendor, or the fact that they canít just come and take it away, until he has a replacement.

    Evidently on 12/21/18, they assigned a new vendor. No one told us! Iím finding this out today, nearly a month later!

    Iím already quite worn out, and I donít need this incompetency added to my list of things to fix. Iím so fed up with the System and having to make phone calls and waste lots of valuable time straightening out their foul ups. UGH!

    SLEEP

    Jon was so tuckered out that he fell asleep at 5 p.m. I donít know how long heíll sleep, but I hope it is through the night. He went through a major ordeal today.

    Jim is sleeping now too, as he has to see Dr. K fairly early tomorrow morning. Heís supposed to arrive at 9:40 a.m. for his blood draw, which may sound late to you, but it isnít in our house. To make that appointment, he has to start before 7 a.m. so he can have his full breakfast, take his meds and vitamins, have a shower, shave, and get his port numbed at least before 8:30.

    The medical offices/hospital are about 8-10 minutes drive, depending upon traffic. He has to que up to get valet parking, then go into the building to the 3rd floor, check in and wait for a port nurse to draw his blood.

    Iím praying that we have a good night for Jim and Jon, so that they will both be well rested tomorrow.

    Itís been pouring rain here for a few days. Our backyard is a swamp, but that is nothing compared to the people, especially in burn areas, who are having floods and mudslides forcing evacuation. Rain is a blessing, of course, but when it pours incessantly, it is a curse.

    Iím unhappy that Jim has to venture out in this miserable weather (itís also cold, for us, around 62 degrees, with wind gusts). So, we got out his beanie and his heavy raincoat with a hood. Weíre not wimps. When youíre inside all of the time, you are more affected by adverse weather. Plus, weíre elderly, and old folks get cold easily.

    Thank you, as always, for listening, loving and supporting us with your good thoughts and prayers. We pray for you and your loved ones, and we send each of you healing energy.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  3. #342
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    Default Changes: Turning and Seizure Meds

    ((((((Hugs to All)))))) ~

    John visited at 2:00 yesterday afternoon to turn Jon. He donned his mask and gown at the door, chatted with us for a couple of minutes, and then we got right to The Turning.

    Jon was very cooperative, and as always incredibly brave. He was happy to see his best bud and bro'.

    John told Jim that he would do all of the heavy work, and said, "you can help, but only if you aren't straining."

    Once I saw Jon's wounds, I was disappointed. It isn't better, but it isn't worse. I don't think that the Hydraguard is any more effective than the Butt Paste. His testicles looked sunburned. And the drainage in 3 days is still unbelievable. He's laying in that for 3 days, so it's never going to get better.

    John said, "We need to turn him more often. I'm around, and we can do it."

    When Jim said that we didn't want to take up all of his time, John responded, "You're not. I love Jon. I love you two. I want Jon's wounds to heal, so he can feel better and not be in pain. Let's just step up the turning until it gets better. We need to do this for Jon."

    I felt tears welling up, but John told me two years ago to try not to cry in front of him, because he gets very emotional too. Without looking up, I asked, "John, what's your day like on Sunday?"

    He said he had his daughter's volleyball game from 6 a.m. to 2 p.m. He could come over then. I looked up and said, "Thank you so much, John. You don't know what it means to us."

    "Yes, I do. I also know what it means to me. We're family."

    SEIZURE

    Last night, as I was taking Jon off of his formula and giving him a water flush, he began seizing. It lasted 8 minutes and was similar to his other seizures, except more intense. Jim was sleeping, and as Jon entered the 6th minute, I was considering waking Jim. The fear is always that it will generalize into a full blast tonic clonic.

    I increased his Dilantin significantly, since his level is 4.4, not even close to the range of 10-20 or his therapeutic trough range of 11-13. Our family doc told me that I shouldn't worry about the dosing, since Jon wasn't seizing. Of course, I know better. We had already started to increase his dose slowly, but last night, Jon's seizure told me that it was too slow.

    I camped on Jon's chairbed to keep an eye on him, literally exhausted from this week's events:

    Tuesday, toenail team and turning with nurse; Wednesday, Jim diagnosed with low WBCs/got Neupogen; Thursday, caring for Jim, calling the infusion nurses, negotiating Jon's O2 concentrator with insurance; Friday, ordering from Instacart, turning Jon, still tending to Jim.

    It was an effort to stay awake, but I did until Jim got up at 9:30. He turned on Jon's formula, and then I told him about Jon's seizure. We agreed on dose changes and adjusting med times, which I'd been contemplating for 3 hours.

    I offered to warm up leftovers from the nice meal I'd made Thursday, but Jim wasn't hungry. Naturally, I nagged him about needing to eat. But he had no appetite. So, he want back to his nest, and I remained on Jon's chairbed until Jon fell asleep at 1 a.m. I had a snack, bathroom break, stretching, as I get stiff on his chairbed, and checked Jon every 15 minutes until Jim got up at 2:30 and ordered me to go to bed.

    Jon slept well but only for 6 hours. He's napping now. Jim's been asleep since after his big breakfast. He obliged me today and drank an Orgain shake. I am encouraging him to keep up his nutrition, because that's so important to healing. He's already weak; he doesn't need lack of food to make him weaker.

    It finally stopped raining, and I actually took a walk this morning. I've missed my walks, and I needed the exercise. It is absolutely gorgeous here today. It felt so refreshing to be outside. The air is clean, and the temperature is mild. It's beautiful.

    So, tomorrow, we turn Jon, and we pray that turning him every other day will conquer the mass of wounds on his backside.

    Thank you all for your continuing support, love, prayers and good thoughts. As always, you and your loved ones are in our prayers daily.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  5. #343
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    Rose, I think I would demand that a wound care nurse come out. She needs to see the drainage in all its glory and not depend on photos and the word of the regular nurse.

    I also worry about the instructions to leave the wounds uncovered. They are exposed to shearing every time Jon is moved or pulled up in bed and that along with lying in drainage is just awful. You were instructed to use something absorbent to soak up urine leakage so why shouldn't drainage be absorbed too?

    My husband used to do wound care years ago and is also very puzzled about the wound care situation. What would it hurt to have more eyes on the situation?

    Take care and hugs!

    C

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  7. #344
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    ((((((callyflower)))))) ~

    Thank you for your hugs and advice.

    Jon does have a breathable underpad beneath him, and we slide a folded absorbent underpad beneath his man bits. We have to turn him to change the breathable underpad, but we change the folded underpad daily, sometimes twice. After 3 days, they are saturated, naturally, as is his sheet and mattress pad, which I clean with vinegar, while Jon's on his side, before we began wound care.

    Jon's nurse did consult a wound care nurse, and she suggested Hydraguard and not using Optifoam. I agreed to give it a try, but if we don't see improvement by Tuesday, I'm going to insist on a visit by the WOCN. Actually, I'm going to insist regardless of how his wounds look. It is justified not only by his wounds, but his colostomy and his catheter. We need a solution to all three issues.

    If there is a problem with authorization, I will contact our insurance case manager, who is groveling for forgiveness over the concentrator fiasco. She will make it happen. Jon needs the WOCN, and I'm fed up with begging for every single thing he needs.

    Of course, turning Jon daily would be ideal, but that's unlikely. John does have a very busy life, and Jim is unable. And there aren't any aides with the nursing service, who could manage Jon with his size.

    Timing is everything. With Jim's WBC drop, I'm not keen on having assorted people trotting in and out every day, even with masks, gowns and gloves. So, whoever comes here has to have a guaranteed ability to help us. That's why I want the WOCN, instead of a regular wound care nurse.

    There is so much red tape, and I always end up doing everyone else's jobs. It just piles on more stress to our already very stressful lives. I will persevere.

    Thank you again ~ sending healing energy your way ~

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  9. #345

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    How’s Jon doing? Any update about the wound care nurse coming to visit?

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  11. #346
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    ((((((Hugs to All)))))) ~

    Thank you, Marcie, so much for checking on us.

    John visited and we turned Jon this afternoon. It only took us 20 minutes today. We realize now how time consuming the Optifoam pads were.

    I do see some improvement in Jon's wounds, but Jim and I agree that they are still severe. They almost look like burn wounds. Drainage was less, in that it was a shorter time period between Turnings, but still too much.

    We can't pursue the WOCN over the weekend, as the offices are closed. And tomorrow is a holiday. I have to ask Jon's nurse to request the WOCN, then we have to get a script from Jon's doctor, then it has to be reviewed by insurance and authorized, then we have to wait for a window for this one WOCN, who serves the whole county, to see Jon. It's a long process. But I will expedite it by calling Jon's insurance case manager.

    Meanwhile, we'll continue with this protocol and hope for a good outcome.

    How are you, Nick, Brian, and Jon? You're in our prayers daily, and we send you lots of healing energy for strength, peace and comfort.

    We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  13. #347
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    ((((((Hugs to All)))))) ~

    Last night, Jon was restless and didnít sleep well. Today was The Turning, so we hoped that he would stay awake until late afternoon.

    Via texts, I coordinated John and Jonís nurse to arrive about 2:15, and they did. They donned their masks, gowns and gloves dutifully, and they chatted with Jim, as he watched us from his futon nest. Neutropenia means constant fatigue and weakness.

    John, Jonís nurse and I then proceeded with The Turning. Jonís nurse doesnít know our routine, and with all good intention, is sometimes in our way. John gently reminded her, ďWeíve got a system, so weíll let you know as we go with each step what weíre doing.Ē She was really fine with that, and I could see that she fell in love with John at that moment. She can feel his devotion to Jon.

    After 2 days with Bag Balm and no cath leakage reaching the area, Jonís wounds looked better. Jonís nurse decided she wanted to put fungal powder on his wounds, just for 2 days, to see if there was any improvement. She dusted him a little more than I would have. Okay, a lot more. I donít know how heís going to react to miconozale.

    We agreed to turn him again on Saturday at 10 a.m. This time worked for John and Jonís nurse. I was glad I didnít have to coordinate it.

    Jim continues to eat better. Last nightís spaghetti was a big hit with him, which is a good thing, since we have a lot of leftovers for tonight.

    Weíre making some progress. And some is always better than none.

    Thank you all so much for walking beside us and sending us your love and prayers and healing energy. We love you and pray for you and your loved ones everyday.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  15. #348
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    Default Delivery Day

    ((((((Hugs to All)))))) ~

    Jon's O2 concentrator was delivered today. It is smaller, more compact, blue instead of tan, and was put into service in 2017. The one he has is 10 years old.

    The tech, who delivered it was very nice. His name is Michael!

    I greeted him at the front door, wearing a mask, and I told him that he couldn't come in, because "my husband has extremely low white blood cells, and we have to be very careful." He understood, so he brought everything to the front porch, set it up and showed me how to operate it. It's quite basic, but it was nice to be shown where things are on the machine.

    He brought 3 portable back up tanks, attached the valve to one and put it on the cart. I asked him to put them in the garage for me, and he was more than willing to help. I told him that our garage is a mess and embarrassing, and when he walked in he said, "It's not that bad." Awww .. yes it is, and how kind of him.

    Jon's 8 cases of formula were delivered. I lifted 2 cases at a time onto a wheeled office chair, which I pushed into Jon's room, then lifted the cases onto the closet floor.

    LEAKING

    Jon's cath leakage has been reduced significantly. I have no idea why. When I pulled him up in the bed last night and changed the pad under his twig and berries, it was dry. The washcloth I put under/around his cath was moist, but not soaked, and he's peeing 50 cc/hour, which is his normal rate.

    This is keeping his bottom dry, so I'm praying for an improvement in his wounds tomorrow. And may it continue to be so.

    FOOD

    This afternoon, I chopped and peeled small red potatoes, 2 parsnips, and chopped baby carrots, sweet onion, mushrooms, and garlic to put in our new Cuisinart steamer. After 20 minutes of steaming, the veggies were perfect! I sauteed the onion, shrooms and garlic in ghee, seasoned with chef's shake, fresh parsley, salt and pepper, and we spread that over the steamed veggies. Jim had 3 Gardein "fish" filets, and I had a Gardein "turkey" cutlet. I made mock hollandaise sauce, but Jim wasn't interested. (I love it.) Jim ate really well.

    TOMORROW

    Jon's nurse called this evening to schedule a visit to change Jon's trache tomorrow. I filled her in on everything that has been going on, and I told her that I'm just too exhausted to add anything else to the day.

    Jim sees Dr. K tomorrow morning. John and I will turn Jon when he brings Jim home. We hope Jim comes home. Just in case, I'm packing underwear and toiletries in his bag.

    The morning will be hectic, because I have to tend to Jon's food and meds. I'll be ironing Jim's shirt, while he showers, numbing his port, getting his breakfast, packing his bag, the cell phone and charger, his Eric Idle book, etc.

    I'm also hoping to order from Instacart, as we're nearly out of some important things.

    I have at least 6 1/2 more hours on my shift, and I'm praying that they go quickly, because my back is screaming. And I still have to pull Jon up in bed and change his pad. I'll park on Jon's chairbed, which will at least give my back somewhat of a rest. Not as good as laying on my heating pad flat and stretched out in my bed, but it's something.

    I am very anxious tonight and trying to hide it from Jim. He has a full tummy and is in a peaceful mood. My prayers are being answered already for him.

    Thank you all for your love, support, prayers and continuing friendship. You and your loved ones are in our prayers, and we send healing energy to all.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  17. #349
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    Good luck tomorrow to Jim!!! I pray intensely for good news! Glad Jon got his O2 machine! The food sounds fantastic!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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  19. #350
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    Unhappy Another Seizure

    ((((((Hugs to All)))))) `

    At 2:30 this morning, Jon had a 10 minute seizure. He was restless afterwards, and he had difficulty falling asleep. He finally seemed to be asleep at 5 a.m., which is when I went to bed for a couple of hours before getting Jim ready for his appointment with Dr. K.

    I didnít sleep, as I listened to Jon. Jim was up and checked on Jon a few times thankfully, although he needed more sleep too.

    Jon has been post-ictal all day, with glazed eyes, some babbling, although very articulate for him.

    I increased his meds doses this morning and evening. Weíll see how that goes.

    More fun Ö his catheter slid out, so I had to reinsert it this afternoon. Jim had to help me, because I was having a dickens of a time getting it to go in. Finally, we got a return, and his output has been excellent since then.

    However, he peed on his bed. John and I had agreed weíd turn Jon tomorrow, since Jon was sleeping this afternoon. Now, John will be coming over after he and his wife have a dinner out. Probably after 7:00.

    I was hoping for a break of some kind today, because Iím just preposterously tired, and my back is not at all happy. Iím not really up to doing the turning this late, but it must be done, and Iíll likely have to wake Jon to do it.

    I shall not complain. Without Johnís help, I would be pulling Jon up in the bed by myself.

    Oh well. Jim said to me, ďYou donít give up. You donít give in.Ē

    I canít do either one of those things. Imagine how our lives would fall apart, if I did. Itís the only way Iíve ever known to live my life. Persevere. As long as my body cooperates, I will.

    Thank you all for your love, support, prayers and positive healing energy. We give thanks for the blessing you are in our lives and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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