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    Tyler's at it again

    A week ago today we spent the night in the ER. We knew Tyler wasn't feeling well but there wasn't anything specific in his symptoms. Low grade fever for several days, not sleeping well, sweating profusely, seizing, hours unconscious daily, very tachycardic. Same ole, same ole. Then he started vomiting. I listened to his lungs and they sounded wet on top of his racing heart. To the ER we went. Pneumonia in the base of both lungs. The docs gave him two breathing treatments and put him on two antibiotics. They wanted to admit him but we ardently refused and brought him home at 4:00 am. We were up for 28 hours and were exhausted. Tyler has been on the antibiotics for a week and nothing has changed. We'll see how he is doing once we finish both drugs. He is unresponsive much of the time, though today he started moaning at 3:00 am and has been very uncomfortable. I prefer him unconscious. Much easier to watch.
    grandmother of Tyler (27): 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."

    #2
    ((((((Tamie, Tyler, & Jerry)))))) ~

    Oh, I'm so sorry that Tyler has pneumonia, along with all of his other issues. Do you think that he may have aspirated, when he vomited?

    Do you have a nebulizer at home for breathing treatments? Suctioning?

    Since you haven't seen improvement, perhaps Tyler should change antibiotics. Might be worth a call to his doc, or the Infectious Disease doc would be best.

    Sending many healing prayers and prayers for you all to get some rest.

    Please keep us updated ~

    Love & Light,

    Rose
    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.

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      #3
      Thanks Rose. Tyler has had pneumonia about 17 times over the years so we have the equipment. The breathing treatments in the hospital made a huge improvement in his breathing. With the AD episodes causing wet lungs, I'm surprised this hasn't happened before this. The doctors frustrate me to no end. His Primary Care doctor wasn't sure the antibiotics would even help Tyler. Today is the last day of the zpac and we have another 5 days on the Ceftin. The AD is complicating matters as usual. Tyler is not happy these days.

      How is Jim doing? I continue to pray for a miracle.
      grandmother of Tyler (27): 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."

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        #4
        I'm so sorry Tyler is sick. It's scary that he stays unconscious for hours. Praying he gets better soon.
        Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
        My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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          #5
          ((((((Tamie, Tyler, and Jerry)))))) ~

          Pneumonia can be a real challenge to manage at home, even with all of the right equipment. And if the right antibiotics aren't given, that makes recovery even more difficult. Did the ER docs do any sputum cultures?

          How are Tyler's SATS? Is he able to cough on his own, when he's "awake?"

          You must be literally worn out. I keep praying for answers and for help for Tyler's AD. It's so unfair that your sweet young man suffers without help, and that you and Jerry are left to feel even more helpless in caring for him.

          Lots of prayers on the way, as always, dear friend ~

          Love & Light,

          Rose
          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


            #6
            Doctors didn't do a whole lot Rose. Took an xray and did blood work. I had to remind his Primary Care doctor to listen to his lungs. Oddly enough, Tyler is barely coughing. Yesterday was the first day without a temp and he slept fairly well last night. Done with one antibiotic and a few more days on the second. Still sweating but that could also be from the AD.
            grandmother of Tyler (27): 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


              #7
              ((((((Tamie)))))) ~

              Diagnosed with pneumonia, but the doctor doesn't think to listen to Tyler's chest. I'm so sorry that you don't have a better caliber of physicians caring for Tyler.

              It sounds like Tyler's improving, and I pray this is the case and will continue to be so.

              Many prayers continuing, as always ~

              Love & Light,

              Rose
              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


                #8
                So sorry to hear this! I pray that maybe he's improving some. Pneumonia is such a scary thing...
                Mary Grace

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                  #9
                  Saw Tyler's neurologist today. He's never very uplifting but bends over backwards to try new things for Tyler. Talked to us about the unconscious spells and has no idea what is causing them, but suspects it's the AD episodes. Ordered an EKG to check out Tyler's heart. Wants to put him on a beta blocker to try and slow down his heart rate and address the profuse sweating episodes and has ordered a swallow study to see if Tyler is aspirating on his saliva. Then he discussed the possibility of Hospice Care and suggested that Tyler will likely pass away from either pneumonia or aspiration. He told us that Tyler can't keep up with these episodes and not have some dire consequences. He looked at some of the video clips I've taken of Tyler seizing and having difficulty breathing through them, choking and gagging as he tries to catch a breath. Actually looks like he is having a stroke because his face pulls to the left during the seizure. It was a pretty depressing appointment.
                  grandmother of Tyler (27): 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


                    #10
                    ((((((Tamie, Tyler, & Jerry)))))) ~

                    I'm so very sorry. I will continue to pray for answers with the testing and the beta blocker.

                    Do you regularly take Tyler's SATS? My thought is that Tyler might benefit from O2, particularly during the AD episodes and seizures. O2 might ease his breathing and reduce his gasping. That is something a hospice nurse might recommend.

                    Please know that we surround you with prayers and healing energy, and send our love as you travel this path in Tyler's challenging journey.

                    Love & Light,

                    Rose
                    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


                      #11
                      Took Tyler to his swallow study yesterday. They gave him a thinned barium solution, which he promptly aspirated on. Tried a thicker consistency and had to stop the test. Too risky to continue. Sure explains the aspiration pneumonia he had last month. Have no idea what they are going to suggest to do. I know they mentioned a trach, which we are not thrilled with. Still waiting to schedule the EKG and check on his heart. Having a lot of seizures over the past two days. Something is brewing.
                      Last edited by Tamie; 06-14-2017, 05:30 PM.
                      grandmother of Tyler (27): 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


                        #12
                        ((((((Tamie, Tyler & Jerry)))))) ~

                        We were terrified of a trache for Michael, and upon hindsight, we now wish we had agreed to it. Michael was fragile, seizing incessantly, like Tyler, and we were afraid that a trache would be too much for him.

                        Now that we've had 8 years of experience with Jon's trache, we realize how much it would have helped Michael, and might have prevented his final septic pneumonia.

                        I remember being terrified of the G Tube, when we agreed to have Michael's placed in 1999. It was because we didn't know anything about G Tubes. We didn't know anyone with a child, who had a G Tube. The unknown is always frightening, and it's natural to resist.

                        The same was true, when we were asked about a trache for Michael. We knew nothing, and no one, who could explain it to us.

                        With Jon, when the docs said he needed a trache, we agreed, because Jon is bigger, stronger and didn't have intractable seizures for 22 years. In 2009, it was temporary, and we had it removed. That was a mistake. Jon really needed that trache, as we would learn by 2011.

                        Jon's trache has saved his life many times, and kept him at home and out of the hospital since 2012, touch wood, may it continue to be so.

                        Being able to suction through the trache allows more clearance and less risk of aspiration and pneumonia. Many times, all we have to do is remove the plug, and Jon coughs out his secretions.

                        A trache facilitates O2 administration, with a proper trache mask, instead of annoying canulas on the nose, or a mask over the mouth and nose. They can also rub and cause skin abrasions. Jon has a scar on his nose from a mask used on him in 2011.

                        Trache care is easy. Jon's trache doesn't use an inner canula, so there is no daily sterile cleansing of a canula, which wasn't a big deal anyway. There are trache care kits with all of the necessary materials in them, and they are sterile.

                        In Jon's case, we remove the 4x4 split gauze under his trache, clean with gauze and saline under his trache and on his trache, replace the gauze, and we're done. Once a week, we change the trache collar, which is also easy. Just hold the trache in place with one hand, remove one side of the collar, insert the tab for the collar, and repeat on the other side. Jim and I do it together, but one person can do it easily.

                        Every 3 months, Jon's nurse visits to change his trache. But we can, and have done it in the middle of the night as an emergency. I always assist Jon's nurse, and we know that we could do it ourselves, if needed.

                        We were trained, while Jon was hospitalized, in how to suction and care for the trache.

                        The procedure generally takes about 20-30 minutes. Jon's first trache was placed by an ENT in the OR at the hospital. His second trache was placed by a thoracic surgeon at Jon's ICU bedside. IV Versed was administered.

                        We've discovered that the trache is not scary at all. For Jon, it's a blessing.

                        Unlike me, you know someone with first hand experience with a trache ... me. So, I just wanted to share with you what I've learned to help you and Jerry make your decision. I absolutely know how hard it is to make this decision, and I completely understand all of the concerns associated with it. I truly do.

                        I will pray for Divine Guidance and for answers to help Tyler and you and Jerry.

                        Please continue to keep us updated, Tamie.

                        We Love You!



                        Love & Light,

                        Rose
                        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.

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                          #13
                          There was a girl in my first grade class with a trache. I watched her nurse do trache care in class,very easy, like Rose said. Even the girl knew very basic trache care at 7 years old(the girl was mobile). It's not that bad.
                          Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                          My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                          Comment


                            #14
                            We decided against a trach. Tyler has had this problem for the past 1 1/2 years with only one bout of pneumonia. Don't see the point. We are very diligent in what we do with Tyler and see no point in putting him through the trauma of surgery.
                            Attached Files
                            grandmother of Tyler (27): 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


                              #15
                              ((((((Tamie, Tyler, & Jerry)))))) ~

                              I completely understand your decision.

                              Prayers continuing ~



                              Love & Light,

                              Rose
                              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.

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