Page 24 of 41 FirstFirst ... 14192021222324252627282934 ... LastLast
Results 231 to 240 of 401

Thread: What Is Next For Jonathan?

  1. #231

    Default

    How’s Jon today? Will you be able to do the mattress switch?

  2. The following 4 users say "thanks"


  3. #232
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,499
    Blog Entries
    1

    Default

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

    Marcie ~

    Unfortunately, Jon is still filled with fluid and air. The MOM has only slightly moved his bowels, which are bone dry. Itís difficult to balance hydration, when heís carrying so much water. And his bladder and bowels are fighting for the water we give him.

    Last night, he needed suctioning every hour. I kept the basin near, expecting him to lose his lunch, but he didnít thankfully. We have to hold his formula and feed him at a reduced hourly rate, which is also depleting his nutrition.

    Heís been awake for 26 hours now. Jim relieved me at 2 a.m., but since Jon didnít go to sleep, neither did Jim. Jim has tried to nap today, but heís been restless, worried about Jon. He finally fell asleep a couple of hours ago. Not Jon, though. Every time I suggest turning out the lights, he objects, ďNo. Movie.Ē

    Weíve had the bed on static, which is probably much less comfortable for him, because it gives him better support. We decided to leave him on static for a few hours, then on alternating pressure for a few hours. We pull him up in bed at least twice a day, and both of us are feeling it. Weíre all in pain.

    I texted John today that we canít move Jon, and I told him that I want to off gas the mattress, because it is odorous. Jim and I canít manage to carry it out to the patio. John volunteered to visit tomorrow to do this for us, on his 50th birthday! Iím grateful, because I think it needs to air out for a couple of days at least. And, we have some special birthday gifts for John, wrapped and waiting.

    Itís been 9 days, since we turned Jon, and that is far too long. He will be so stiff an aching, when we finally lift him out of bed. I just pray that John and Jim can get the new mattress on quickly, so Jon can return to bed and finally be comfortable.

    How are you? How was your Thanksgiving? I was thinking about you and your family all day and sending healing prayers.

    Please take extra good care of yourself, Marcie ~

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  4. The following 3 users say "thanks"


  5. #233

    Default

    Rose,

    We are doing okay. Taking everything one day at a time. Thanksgiving was quiet. My son came over because his wife had to work. It’s definitely been an adjustment without Mike here. The boys miss him very much. He would do all the stuff I hated to do, like phone calls and taking the car to get serviced.

    Thank you for asking about us.

    I hope that Jon is able to get some sleep and the mattress situation gets taken care of soon. As always you, Jim, and Jon are in my thoughts and prayers.

    Marcie

  6. The following 4 users say "thanks"


  7. #234
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,499
    Blog Entries
    1

    Default

    ((((((Marcie)))))) ~

    Oh, my dear friend, I am so sorry.

    Holidays are especially difficult, particularly in the very beginning. Taking it one day at a time is all you can do. And some days, even that may seem to be too much. Please donít push yourself, if you arenít up to doing something, or going somewhere, or celebrating or being in large gatherings.

    Now is the time to take care of yourself. Feel all of your feelings, let them flow. Repressing them will only make it harder for you in the future.

    I pray that you will be surrounded with peace and comfort, and you will find strength each day. May you feel Mikeís presence very near you always.

    Sending you lots of love and extra hugs ~

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  8. The following 3 users say "thanks"


  9. #235
    Distinguished Community Member Jeanie Z's Avatar
    Join Date
    Dec 2006
    Location
    WPB,FL
    Posts
    1,744

    Thumbs up

    :) Hi Rose, Ann posted a link so I could get here. I am so sorry you are having so many glitches in your care of Jon. All I can offer is more prayers. You are so inspiring. With love, Jeanie :)

  10. The following 3 users say "thanks"


  11. #236
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,499
    Blog Entries
    1

    Default Another Long Night

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

    What a night!

    Jon blew up like a Macyís Parade Balloon!

    We suctioned him, and he began gagging, then vomited a small amount. It went downhill from there. No more formula. Water only. Every 20 minutes, SATS dropped to the low 80s, so I unplugged his trache to allow him to cough it out. I didnít want to suction him again causing the same response.

    Heíd been awake for about 36 hours. We canít give him Ativan, because it suppresses the respiratory system. We tried putting his mattress on static to keep him up in the bed. But thatís uncomfortable and not conducive to relaxing to sleep.

    Jim got up at 2:30 a.m. to relieve me. I was grateful, because Iíd been on my feet most of the night. Just as Iíd get the pillows on his chairbed right, so I could semi-stretch out, pulled up the lovely shawl Donna gave to Jim to warm me, Jon would need to clear his mucous. And my back ~ oh, letís not discuss my back.

    But my back is nothing compared to Jonís entire body being in pain. At least, I can move around.

    ON JIMíS SHIFT/TODAY

    I was in bed by 3, and I must have fallen asleep soundly, because I didnít hear Jim suctioning Jon at 4 a.m. Nor did I hear Jon vomit twice. Nor did I hear Jim turn on the O2 to give Jon oxygen for 2 hours.

    Jon stabilized and fell asleep at 6:30 a.m. Jim crawled into bed for an hour, and I got up. He gave me report, and I was stunned. I asked him why he didnít wake me up, and he said, ďYou canít do it all 24 hours a day. You needed sleep.Ē

    Jon woke up at 9:30, his SATS were low, but we didnít suction. As long as he can excrete it on his own, weíre staying with that option to avoid gagging and vomiting. One cough and he goes from 79 to 94. Much of what is coming out is water.

    No BMs, but then, heís not getting enough food to create them.

    So, this afternoon, I put him back on his formula at 1/2 his hourly rate. He has to have nutrition to battle this crisis. To have the energy to cough. He might well be hungry too, because heís used to receiving twice his rate. Itís a delicate balance.

    Jon fell asleep for an hour at noon. He woke up demanding movies. First Elton John concert. Then Elf, then Santa Clause 1. As the day progressed, he felt much better, with better SATS and less mucous. We remain hopeful.

    He is sleep deprived, of course. Thatís a huge worry. But, weíve been here many times before, and we know the drill.

    JOHN, OUR LOCAL HERO

    I texted John, who came over about 11:30 to put Jonís new mattress in the garage to air out. It wasnít as heavy as we thought, but itís awkward. We stayed in the garage, and John opened our gifts and cards.

    One of his gifts is a DVD of one of our favorite movies, ďLocal Hero,Ē from 1983. Itís very hard to find by itself, so itís in a collection of other Burt Lancaster movies.

    Hereís the IMBD info on Local Hero:

    https://www.imdb.com/title/tt0085859/?ref_=nv_sr_1

    Itís also available on YouTube for $2.99. Well worth it.

    https://www.youtube.com/watch?v=MQ8u4ytzPdA

    The score is by Mark Knopfler (Dire Straits), and it is hauntingly beautiful, as is the scenery and cinematography. But the movieís message is the real treasure.

    We wanted John to have an actual DVD, so he could watch it with his family, and keep it on hand for future viewings.

    John is very worried about Jonathan and quite sad for all that heís going through. He mentioned Jonís wounds needing treatment and just the movement of turning to keep him semi-mobile. He understands how hard it will be to transfer Jon to his recliner. And he assured us that he is ready for the task, and he will make sure that he and Jim get the mattress fastened quickly. He said he wished that Jon was awake, just so that he could see him.

    When he left, John took the giant mattress box with him. He said he has a huge dumpster near his condo complex. ďOne less thing for you to drag out to the curb for trash pick up,Ē he said.

    God Bless John.

    So far, so good with Jon. We just pray it continues, so that we can treat Jonís wounds, and he can have a new mattress and clean bed.

    Thank you all so much for your love, prayers and support. You are all in our prayers every day, and 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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  12. The following 3 users say "thanks"


  13. #237
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,915

    Default

    I wish this news were better, Rose. I pray Jon and you and Jim have a better night tonight and that those sats go up.

    ANN
    Last edited by stillstANNding; 11-26-2018 at 01:39 PM.
    There comes a time when silence is betrayal.- MLK

  14. The following 4 users say "thanks"


  15. #238
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    947

    Default

    Rose, What a rough patch your family has been going through! I'm so so glad you have John to help out. He sounds like a real life saver. Praying that things take a better turn and you all get some real rest and peace of mind.

    Mary Grace

  16. The following 4 users say "thanks"


  17. #239
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,499
    Blog Entries
    1

    Thumbs up Getting Better!

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

    Jeanie ~

    Iím so glad you found the thread! Thank you, ANN!

    ANN ~

    His SATS are holding at 95 now! Yay! Progress!

    Mary Grace ~

    Yes, it has been a rough patch. Weíre not used to it lasting this long. Itís been 11 days since Jonís last turning!

    John truly is a life saver. I donít know what we would do without his help. Every time I tell him that he doesnít know how much his help means to us, he says, ďYes, I do. And it means a lot to me to help you. Youíre family.Ē

    THE LATEST UPDATE

    At 10 p.m., it was lights out for Jon. But he didnít fall asleep until 1 a.m. He maintained excellent SATS and heart rate, and his respirations were perfect. This is tremendous progress!

    Jim relieved me at 2:30 a.m., just as I was about to start Jonís nightly feeding. I suggested that we change the mattress to alternating pressure for Jonís comfort. After I went to bed, Jim changed the setting, and Jon woke up! Gah!

    Jon finally fell back to sleep at 4 a.m., but he was awake at 6:00. So, heís not making up for lost sleep. And no nap today.

    He is tolerating his formula at 1/2 the rate, with periodic gut rests. He got a total of 750 cc of formula in a 24 hour period, which is half of his usual total. That is the most heís had in a 24 hour period for a week. Weíre not pushing it.

    No BMs yet, but his hospital nutritionist told us that bowels wonít move without food propelling them and lots of water getting to the intestines. Heís holding all of that water in his body.

    Jon was all sunshine and roses today, vocal and chatty, laughing, feeling much better. Softer belly, some food in it, and plenty of movies.

    He has kept us on our toes in the movie department too. If video stores still existed, he could open one! Hundreds and hundreds of DVDs and Blu-Rays (and VHS tapes). We pick out an assortment of movies/concerts, then we let him choose. We have been going through stacks of 20 to finally reach one he likes! God Bless Jon ~ movies and concerts are all he has for entertainment. Other than his parentsí singing, dancing, and comedy acts.

    So, weíre praying that this is the corner, and heís turned it. Weíll likely have to wait until Thursday to do the mattress switch, since Jim sees Dr. K and has an infusion on Wednesday. And, then, we just have to pray that Jim will do well with his infusion and be up to the task of lifting and moving Jon. I know that John will do all of the hard work, but it will take 3 of us to do it properly.

    Thank you all so much for your prayers, love, support, advice, and continuing friendship. It means the world to us to know that you are with us.

    Abundant blessings upon 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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  18. The following 4 users say "thanks"


  19. #240
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,915

    Default

    This is such good news, Rose! Thank God!

    I hope you will be able to do the mattress switch and change of position soon. Fingers cross and prayer said.

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

  20. The following 3 users say "thanks"


Page 24 of 41 FirstFirst ... 14192021222324252627282934 ... 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.