Page 10 of 15 FirstFirst ... 56789101112131415 LastLast
Results 91 to 100 of 149

Thread: What Is Next For Jonathan?

  1. #91
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,766
    Blog Entries
    1

    Thumbs up

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

    Jonathanís sleep pattern has improved, since we returned to the original Dilantin and Depakote manufacturers. But, weíve had to start a new Dilantin, and weíll be starting a new Depakote in a few days. Iím grateful that it worked out that we didnít end both of them at the same time.

    His urine output has increased with the compression tubes. We donít see a reduction in his legs, but they are more pliable. Some of the old dry skin is flaking off, which is a good sign. Iíve been applying Aquaphor to his knee, however, no change yet.

    His wounds are about the same. The progress we made with Butt Paste seems to have worn off. Weíll have to address this with Jonís nurse this month. His left big toe is still infected (chronic ingrown toenail and granuloma), and while the Betadine applications have helped, they havenít stopped the pus from gathering.

    Overall, Jon is content and happy, and heís incredibly brave to endure all that he has going on. John praised Jon last night, when he turned Jon for being so strong and courageous.

    This was the week when Jonís GI doc returned from vacation, and we were hoping that he would schedule a visit to change Jonís G tube. We havenít heard from him, and I am reluctant to be pushy and call or email him, because I know how busy he is. Iím just anxious to have the tube replaced before it fails at 2 a.m. or some other inconvenient time.

    Meanwhile, Iím cleaning the house daily hoping for that visit.

    I miss hearing from all of our dear friends here on CN, and I hope that one day, you will return with updates. I hold all of you and your children in my prayers.

    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.

  2. The following user says "thanks"


  3. #92
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,766
    Blog Entries
    1

    Default

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

    The honeymoon is over. While on the old brand Dilantin and Depakote, Jon fell asleep between 1 - 3 a.m. He woke up between 10 a.m. and 1 p.m. All of this is what we regard as ďnormal.Ē

    He changed brands on Dilantin first, with no noticeable difference. But once the new Depakote was started, we saw changes. Thursday, Jon was awake for 23 hours, and he slept for about 7 hours. Yesterday, he was awake for 18 hours, and he slept 10 hours through today.

    Thankfully, Jim has been awake to take over for me, so that I can go to bed. Friday morning, it was 4:30, before Jim woke up, and I was really dragging. He took over for me at 3 this morning, but I could hear Jon, and I heard Jim making a bowl of soup, so it took me awhile to go to sleep. Then I woke up at 6:30, when I heard Jim talking to Jon. Jon fell asleep about 7:30.

    Jim is having insomnia now too. Heís exhausted, but he canít sleep. He also has no appetite and gets full quickly, so now weíre trying small meals more times a day.

    The compression stockings seem to be helping slightly. However, his toes are just a mess. The toenail team will visit in early July. Still no word from Jonís GI doc, so obviously, I have to contact him now.

    Jon is due next week for a catheter change. Problem: weíre out of catheters. Still. I called the nursing agencyís supply manager and left a message. I have a feeling this is going to mean that we will have to use a different brand of catheter now. Iím pretty unhappy and fearful about this, as you can imagine.

    And so it goes Ö everyday a new adventure.

    Thank you all for your prayers, support, love and friendship ~ Our prayers are with you and your loved ones.

    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.

  4. #93
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,766
    Blog Entries
    1

    Thumbs down

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

    At 2:30 this morning, I read the text from Jonís nurse regarding Jonís catheter, which is due to be removed/replaced this Friday. Iíve been texting her and calling the agencyís supply rep for over a week, with no response.

    Jonís nurse informed me that Jonís catheter will not be available until August (backlog with manufacturer). She said that she has another ďpopularĒ silicone catheter for Jon, which sheís used for many patients.

    I texted her with questions: ďDoes the catheter have the silver gel coating to prevent infection?Ē ďIs it a Bard? Because the Bard is twice as big in diameter as the Covidien (the one heís been using for 7 years), and I think Jon will be uncomfortable.Ē

    She hasnít replied yet, but I know that she is over her head with work, charting, etc., and sheís only part time!

    I spent the morning searching the internet for Jonís catheter. It appears that the 22 Fr size with the 10 ml balloon is not available anywhere. Every other size of Covidien catheters is available, but not Jonís size. We have a supply of 20 Fr, but heíll leak 100s of cc if we use it. The 24 Fr also caused excessive leakage.

    I did find a Covidien 22 Fr catheter with a 30 ml balloon, and I ordered it. I paid for expedited shipping, with the hope it will arrive by Friday. I donít know whether the larger balloon might pose a problem, so I texted Jonís nurse and asked her.

    Perhaps a larger balloon will stop the leaking?

    Meanwhile, I still havenít heard from Jonís GI doc, and I havenít emailed him, because Iíve been so busy trying to solve the catheter issue, as well as his other supplies (wound care).

    I also purchased the Optifoam 6x6 wound care pads for Jon, because heís limited to 10/month.

    I paid $65 for a box of 10 pads on Amazon, and they will be here tomorrow. The medical supplier charges $152 for one box of 10 pads. I bought 2 boxes, and when Jonís supplies are delivered on Friday, he will have 30 pads. Iím done with the ďgetting byĒ stuff. He needs it. I get it, so heís got it.

    Itís an unregulated industry, and thatís what happens. This is why Medi-Cal doesnít authorize stuff. Gouging by suppliers.

    Jon is lethargic and sleeping a lot now. His urine smells, and yet his output is good, the color is good, and he has no evidence of infection. John asked on Monday, when he turned Jon, ďCould it be the meds change?Ē Yep. Sure could.

    This has all been quite stressful, and Iím fed up with it. Itís all about $$$$$$$$!!!!!! Profit off of the backs of people, who are vulnerable and suffering.

    I just continue praying that Jon will not get an infection, or leak all over his bed, or be uncomfortable with a different catheter. I donít know what else to do. I canít change the System.

    Thank you all for listening, for your prayers and positive energy, and for being with us on our journey.

    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.

  5. The following 2 users say "thanks"


  6. #94

    Default

    Dear Rose,

    You’ve got your hands full! It figures that the size you need you can’t get. I hope the one you need gets there before tomorrow.

    Marcie
    Last edited by Nick,Brian,andJon'sMom; 06-29-2018 at 08:40 AM.

  7. The following 2 users say "thanks"


  8. #95
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,163

    Default

    Rose, you make good decisions. Keep reminding yourself. You solve problems well.

    I was looking for “ Orabase B” (w benzocaine). I had a mouth ulcer last week and it interfered w eating. The Orabase is a good product that coats the area. We physically searched CVS, Rite-Aid, Walgreens and Target. I asked a pharmacist because there are some things that don’t need an RX but the pharmacist needs to order for you. We had no luck.

    Then I looked on line. Same places plus a bunch of others and Amazon. Amazon has a 30 Gm tube that can be delivered in “late July or August”! I was looking for a 3 gram tube for immediate use. I gave up and managed w Hagen Daz vanilla ice cream. Not brilliant but it helped. Now, I won’t need it again for years.

    Why is this happening? Like the saline bags and other things that used to be readily available? If I wanted mascara, the “drug” store has dozens of brands w sub-types!

    ANN
    There comes a time when silence is betrayal.- MLK

  9. #96

    Default

    Personally, I believe some of the shortages are done intentionally to drive up the price and demand because people hear there is a shortage and need to have it now. The company profits from this and when the fervor dies down they say it is available again.

  10. The following user says "thanks"


  11. #97
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,766
    Blog Entries
    1

    Default

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

    Marcie and ANN ~

    Thank you for your support. And I agree with you, Marcie. And isnít that horrible? Supply and Demand.

    I waited all day yesterday for UPS to deliver Jonís catheter. Finally, at 4:15, I called Jonís nurse, ďItís Here!Ē

    When she arrived, she wanted to assess Jim first to make sure that he wasnít having a crisis requiring intervention. She was satisfied with his improvement after taking steroids and postulated that Jim could have anemia.

    As it turned out, the 22 Fr Covidien with the 30 cc balloon was the same diameter as the Bard 22 Fr with a 5 cc balloon. I said to Jonís nurse, ďIf weíre going big, letís go big with the 30 cc balloon. Maybe it will hold that puppy in place!Ē

    Unfortunately, bleeding was a consequence. The cath slid out and needed reinsertion.

    Then, leakage. Copious leakage.

    At 1:00 a.m. today, I was reinserting Jonís catheter and removing the drenched pillowcase and under pad, bathing him and changing his shirt. I had to restrain his arms so that he wouldnít pull out the washcloth Iíd put over his cath to absorb some of the leakage.

    Jonís nurse inflated the balloon to 15 cc, and I increased it to 20 cc, after I reinserted it. Heís still leaking, albeit less, but his output in his drainage bag is excellent.

    Jim tried to convince me to go to bed at 2:00 a.m., but I insisted on staying up until 3 at least to make sure that Jon didnít need further attention to his catheter.

    Jon didnít fall asleep until 6 a.m., and then Jim napped soon thereafter for a couple of hours.

    We are hopeful that the catheter will settle in, as usual, within a week. We realize that there will always be leakage, but as long as it isnít a flood and is manageable, we can handle it. Well, we can handle a flood too, we just donít want that for any of us!

    Next up for Jonathan: G Tube Change!

    Thank you all for your love, prayers, support, and for being here for us.

    You and your loved ones are in our prayers too.

    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.

  12. The following 4 users say "thanks"


  13. #98

    Default

    How’s the catheter working today? Hopefully it has gotten better

    When is his g tube change?

  14. The following 2 users say "thanks"


  15. #99
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,463
    Blog Entries
    23

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Marcie and ANN ~

    Thank you for your support. And I agree with you, Marcie. And isnít that horrible? Supply and Demand.

    I waited all day yesterday for UPS to deliver Jonís catheter. Finally, at 4:15, I called Jonís nurse, ďItís Here!Ē

    When she arrived, she wanted to assess Jim first to make sure that he wasnít having a crisis requiring intervention. She was satisfied with his improvement after taking steroids and postulated that Jim could have anemia.

    As it turned out, the 22 Fr Covidien with the 30 cc balloon was the same diameter as the Bard 22 Fr with a 5 cc balloon. I said to Jonís nurse, ďIf weíre going big, letís go big with the 30 cc balloon. Maybe it will hold that puppy in place!Ē

    Unfortunately, bleeding was a consequence. The cath slid out and needed reinsertion.

    Then, leakage. Copious leakage.

    At 1:00 a.m. today, I was reinserting Jonís catheter and removing the drenched pillowcase and under pad, bathing him and changing his shirt. I had to restrain his arms so that he wouldnít pull out the washcloth Iíd put over his cath to absorb some of the leakage.

    Jonís nurse inflated the balloon to 15 cc, and I increased it to 20 cc, after I reinserted it. Heís still leaking, albeit less, but his output in his drainage bag is excellent.

    Jim tried to convince me to go to bed at 2:00 a.m., but I insisted on staying up until 3 at least to make sure that Jon didnít need further attention to his catheter.

    Jon didnít fall asleep until 6 a.m., and then Jim napped soon thereafter for a couple of hours.

    We are hopeful that the catheter will settle in, as usual, within a week. We realize that there will always be leakage, but as long as it isnít a flood and is manageable, we can handle it. Well, we can handle a flood too, we just donít want that for any of us!

    Next up for Jonathan: G Tube Change!

    Thank you all for your love, prayers, support, and for being here for us.

    You and your loved ones are in our prayers too.

    Love & Light,



    Rose
    Hi Rose, Remind me, does/is the Cath mainly necessary because of the prostate and other internal issues? Or mainly because of mobility issues of not being able to use a toilet? Just curious after reading this. Hope you don't mind me asking. Prayers for things to settle and go more smoothly.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  16. #100
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,766
    Blog Entries
    1

    Default

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

    Marcie ~

    Jon's catheter is still leaking, but not as profusely. I am now putting the split gauze 4x4 pads, which we use for his trache, under his penis, which seems to be capturing a good amount of the leakage. The problem is that Jon doesn't want that gauze there, so unless his arms are restrained, it ends up on the floor!

    I don't know whether I should increase the balloon size to 30 cc or just leave it. I guess we'll see how it is as we go along.

    After a long day, including transporting Jim to/from his scans, John visited to turn Jon this evening. Jon's testicles are inflamed, some bleeding with the delicate tissue, and all I can do is slather Butt Paste and apply two Optifoam pads.

    Yet, Jonathan is all smiles, full of hugs, and chatty. I don't know how he does it.

    I haven't contacted the GI yet. Since the 4th of July is approaching, I figured, he's probably not going to be available. But I will email him anyway just to get the ball rolling.

    How are you, your husband and children? Healing prayers always on the way for you.

    funnylegs4 ~

    Of course I don't mind if you ask me anything!

    Yes, Jon has an indwelling catheter, because he has an enlarged prostate.

    In 2011, Jon was hospitalized with pneumonia (on a vent in ICU) and a septic UTI. Three urologists examined him and told us that there wasn't much they could do for Jon's prostate, as he wasn't a candidate for tests or surgery or any other kind of treatment. Their advice was to place an indwelling catheter for the rest of his life to prevent infections from lack of urination.

    Prior to the catheter, Jon used a condom catheter, which is just a condom with an opening to attach to a drainage bag. He had severe skin breakdown from urine with diapers, and as he aged and gained weight, turning him to change a diaper was challenging.

    Jon's colostomy was placed in 2004, due to a twist in his sigmoid colon. So, he was no longer using the toilet for BMs. It just seemed to be a inevitable to have an indwelling catheter.

    Meanwhile, Jim had his CT and Brain MRI scans today. Now, we wait.

    Thank you all for you continuing prayers, love, support, advice, and for being with us on our journey.

    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.

  17. The following 2 users say "thanks"


Page 10 of 15 FirstFirst ... 56789101112131415 LastLast

Similar Threads

  1. Jonathan's Graduation and Prom
    By Nick,Brian,andJon'sMom in forum Child Neurology
    Replies: 3
    Last Post: 09-03-2017, 09:00 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.