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    #16
    ((((((Tamie, Tyler, & Jerry)))))) ~

    Your efforts to get O2 for Tyler are so familiar to me. Jon had a trache and history of pneumonia, and Jim had lung cancer. I still had to justify having O2 concentrators for them, even though they weren't O2 dependent all of the time. When they need O2, they need it. Otherwise, we call paramedics.

    Did you get anywhere with your Primary doctor? Doctors need to understand what an ordeal it is for Tyler (or Jon, Michael , or Jim, or anyone, who has a severe illness) to be transported and put through tests. We need in home visits from doctors and nurses to assess the needs of people, who are chronically ill.

    How are you responding to Musinex?

    Prayers continue for all of you.

    Love & Light,

    ❤️❤️❤️❤️

    Rose

    *Virtual Hugs Are Germ-Free!


    THANKS!


    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    Comment


      #17
      Primary sent us to Pulmonology. They refused unless Tyler got a breathing test. Not happening. They never even returned my calls. Primary then suggested Urgent Care. We flat out refused. Sent him pictures of Tyler at 43 and then at 80 for 30 minutes. He then passed us on to Neurology because I know it is being caused by the atonic seizures. Argued with Neurology for about 10 minutes on the phone. His neurologist won’t be in the office until the 19th. They insisted we take him to the ER. I flat out refused. Not happening. Then they wanted to send us to pulmonology. We are getting no where fast. Neurology was upset we haven’t been seen in person for several years. Told them that’s what the doctor wanted. She didn’t see any point in our dragging Tyler out when there was nothing she could do but refill his prescriptions. That didn’t set well. Finally told them, thanks for the recommendation but we’re not following it and hung up. So frustrating.

      The muscinex and breathing gizmo aren’t making me cough. Oh, and Tyler’s mom, stepdad and both of his brothers have Covid. It’s just been a great week,
      grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

      Comment


        #18
        ((((((Tamie, Tyler, & Jerry)))))) ~

        Oh, my dear, what a nightmare you are going through! I am so very sorry. You are literally running around in circles to try to get very medically necessary O2 for Tyler. His SATS are quite concerning, but rather than work with you, the answer is to take him to ER, or to a pulmo for a breathing test. They have to have evidence the Tyler is desatting. They can't just take your word for it. I've been there.

        Same with the doctor knowing that it was too difficult for Tyler to be taken to doctor appointments, or anywhere probably. Our PCP treated Jonathan for many years without having seen him in person. But Jon had a home health nurse, who reported to our PCP, so he was always updated on his care by a medical professional. Also, Jon's GI visited annually to remove/replace Jon's G Tube, and he is within our PCP's umbrella, so that helped us get past that requirement. Forget the gatekeepers, who don't know your arrangement with the neurologist. Perhaps you can try again, when she returns on the 19th?

        I'm so sorry that your family has COVID. Were they vaccinated? It seems to be affecting people, who are fully vaccinated, as well as those, who have not been vaccinated.

        Holding all of you close in my heart and prayers. You all need a giant break!

        Love & Light,

        ❤️❤️❤️❤️

        Rose

        *Virtual Hugs Are Germ-Free!


        THANKS!
        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

        Comment


          #19
          We decided to try taking Tyler up to our cabin and see how he would do in the altitude. Ended up buying some canned oxygen to take with us in case he desatted. The weather was beautiful and very few people were around in our area, so very relaxing. Tyler did desat several times on Saturday, so we tried the canned oxygen. Seemed to help some. Unfortunately, it also caused Tyler to get strangely high. He refused to go to sleep and stayed awake until 3:30 am. We were exhausted and stopped using the canned oxygen. Came home yesterday. Received a call from Neurology saying their hands were tied from giving Tyler oxygen. Suggested adjusting Tyler’s meds to try and stop the desatting. Good luck with that. His Dilantin level is fine. He is maxed out on the Fycompa and already gets 40 mg of Diazapam a day. The atonic seizures are causing the problem and Tyler has been on all the seizure meds out there with no success. Ought to be interesting to see what she suggests. She did not suggest an appointment to see her.

          My son-in-law was getting better with the Covid until it hit him harder. He is having a super rough time now. Spent hours in the ER yesterday and got no help whatsoever. The ER is so overwhelmed with Covid patients that they don’t have the time or the staff to help all the patients. They sent him home without even giving him fluids to rehydrate him. My daughter had the same issues, but they at least rehydrated her two days in a row and she seems to be improving. The kids all seem to be recovering quickly and without the problems hitting their parents. None of them are vaccinated. Nasty virus.
          grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

          Comment


            #20
            ((((((Tamie, Tyler, & Jerry)))))) ~

            By "canned oxygen," do you mean tanks of oxygen? Portable on a rack with wheels?

            Are you using a nasal cannula or a mask? Masks are generally not advised to be used, unless the patient is receiving 5 liters of O2. A mask on 1-4 liters could result in carbon monoxide build up.

            We always started with the lowest amount of O2, as in 1 - 1/2 liters. If the SATS rose, we stayed with that level, if they didn't rise or decreased, we went to 2 liters, etc. Then, we would do the opposite, slowly bringing down the liters to see how the SATS were.

            We were trained by hospital respiratory therapists, so we learned a great deal about suctioning and appropriate application of O2.

            How were you able to get the O2 tanks for Tyler? If he can have tanks, why can't he have an O2 concentrator? Tanks only last for 4 or so hours. A concentrator is plugged into an outlet and can run continuously for years.

            I am so sorry that your daughter and son-in-law and your grandchildren have been struggling with COVID. It is a very nasty disease, and it is shameful that your SIL was sent home without at least hydration. Why didn't they get vaccinated?

            How is your tree in bud situation? Any news on that yet?

            You all continue to be in my prayers. You certainly need and deserve a break.

            God Bless You ~

            Love & Light

            ❤️❤️❤️❤️

            Rose

            *Virtual Hugs Are Germ-Free!


            THANKS!
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #21
              Canned oxygen, non medical like high altitude hikers or pilots use. Only thing we could get. Bought it at Big 5. Wouldn’t recommend it. He has. He has been desatting all afternoon with atonic seizure clusters. Frustrating. Heard from Pulmonology on Monday. Goi going in on Aug. 3 to get a pulse ox that will monitor Tyler’s sats and record them. Only way to test him cause a breathing test obviously won’t fly. Neurology also called and suggested changing Tyler’s meds, but I said no to that. He has been on every anticonvulsant or combination there is with either no change or they made his seizures worse. Not interested in trying trial #27. Already know the outcome. Hopefully when they see how he desats, they’ll figure out what to do.

              As for my “tree in bud”, still doing the muscinix and breathing device with no change. Will call pulmonology at the end of the two weeks to report nada.

              My daughter is finally slowly recovering from Covid but her husband took a turn for the worse took two ER visits to figure out he has pneumonia. Feeling pretty lousy but at least is now on antibiotics. Praying he doesn’t end up in the hospital or on a vent.

              grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

              Comment


                #22
                ((((((Tamie, Tyler & Jerry)))))) ~

                I am not familiar with canned air, as I'm not a camper, hiker, or pilot. Are you taking Tyler in to see the pulmonologist and get the pulse ox? Is the pulse ox going to give a read out for the doctor? Do you have a pulse ox at home? If so, why can't you hand chart his SATS on an hourly basis, giving a description of what he's doing, eg. seizing, gasping, etc.? Can you video him on your phone and send that to the pulmo and neuro?

                Neuros never know what to tell us to do, except try a different AED. How old is Tyler now? Your signature says that he's 24, but I know he's older than that now. That is how many years for you dealing with his seizures? How many different things have you tried? Tyler has defied all of the odds and endured so many medical challenges. He is incredibly courageous, as are you and Jerry.

                Keeping medical mysteries in the family, eh? No clues on your tree in bud. I'm so sorry. It is so frustrating to not get answers. I pray something will occur to diagnosis you and treat you.

                I am also so very sorry that your son-in-law has pneumonia. I am praying that the antibiotics work effectively, and he and your daughter will recover soon.

                Sending healing strengthening prayers for all of you ~

                Love & Light,

                ❤️❤️❤️❤️

                Rose

                *Virtual Hugs Are Germ-Free!


                THANKS!
                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  #23
                  I go by myself on the 3rd to pick up a pulse ox from Kaiser. Not sure what it looks like, but will record Tyler’s saturation’s and show the doctor what we are seeing. I have been taking photos and videos of Tyler to show him desatting while having an atonic seizure. I sent the photos, but you can’t send the videos. Went back up to the cabin last weekend without the canned oxygen. Tyler desated to 73 at the lowest. Once the seizure is over his days come back up to the low 90’s. I have the finger pulse ox that I bought from Amazon, but not sure how accurate those things are. Bought another type from a medical supply house but it hasn’t arrived yet. So much for three day turnover. It’s been a week and still not here.

                  Tyler will be 27 in December. Guess I should update my profile.

                  How is your summer going?
                  grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

                  Comment


                    #24
                    ((((((Tamie, Tyler, & Jerry)))))) ~

                    I hope you have received the upgraded pulse ox by now. I recommend using it and the finger pulse ox to determine how far apart the readings are. I would do the same when you get the other pulse ox on 8/3.

                    What does Tyler's neuro say about the lack of oxygen to Tyler's brain, when he desats? This is an important consideration regarding the need for an O2 concentrator during those periods, when his O2 drops below 90. For Jon, our cut off point on desatting was below 86; that's when he'd get suctioning and at least 1 liter of O2.

                    It's also important to factor in heart rate and blood pressure.

                    How are your daughter and son-in-law? I pray that he is responding well to antibiotics and will recover fully soon.

                    Any word on your tree in bud?

                    So many times, when we were told that something was rare, we responded, "We know we're different. We're okay with it."

                    My summer ~ well, I had Dose #2 of Pfizer for COVID on 7/26, with no adverse side effects. I am concerned about my level of protection, because I have RA and PA, and people with autoimmune disorders are at higher risk of having less efficacy from the vaccines. I'm also a woman over 65, which puts me in another high risk group. So, I don't feel like running out maskless to do anything.

                    You have known me long enough to know that I am a germaphobe. As such, I am on high alert and stressed about the pandemic. I have so many things, which I really need to do, but I'm afraid to venture out into the world, while COVID surges. It is a Catch 22 ~ if I go out and get COVID, I won't be able to get everything done, but if I don't get out, none of it will get done.

                    I have another week, before I will be considered "fully vaccinated." So, I wait.

                    Sending prayers and healing, positive energy to all of you.

                    Love & Light,

                    ❤️❤️❤️❤️

                    Rose

                    *Virtual Hugs Are Germ-Free!


                    THANKS!
                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      #25
                      Been a while, I know. Been dealing with my step mom's cancer return. Non small cell lung cancer the second time around. She tried to fight it, but with the delays of treatment due to Covid, it was just too little, too late. We lost her on the 23rd of last month. Her son and I are the Trustees of her estate, so I am now dealing with clearing out her house, getting it ready for sale and maintaining it until it does sell. She lived in Cherry Valley, which means driving back and forth for two hours each way several times a week. Getting pretty exhausting. Nearly 4,000 sq. ft. of house on 2 1/2 acres of land.

                      Tyler just fought off another UTI with Vantin. Finished the last dose yesterday. As usual, the antibiotic raised havoc with his seizures, but hopefully it killed the infection.

                      Hope all is well with everyone on this board. Sure miss the days when it was super active here.
                      grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

                      Comment


                        #26
                        ((((((Tamie)))))) ~

                        Thank you so much for stopping by with an update. I am so very sorry for your loss of your stepmom. Jim had the same diagnosis, so I understand what she and all of you have gone through in her journey.

                        I also understand about the challenges of managing an estate, and a 2 hour drive both ways is exhausting on its own.

                        Tyler has certainly had a difficult time, as have all of you. I think of you all so often and pray for you.

                        Like you, I miss the days when CN was active. You and I met on a G tube Listserv from Australia, before we ever knew about BrainTalk. Even the Listserv was active in those days. It was all we had. Now, there are other forms of social media, which render the discussion forum outdated.

                        Please take good care of yourself with all of this stress. Sending healing, positive energy to you, Tyler, Jerry and your entire family.

                        Love & Light,

                        ❤️❤️❤️❤️

                        *Virtual Hugs Are Germ-Free!


                        THANKS!
                        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                        Comment

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