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Thread: Status Quo: What We Don't Know

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    Default Status Quo: What We Don't Know

    ((((((HUGS TO ALL)))))) ~

    Last night, Jon reminded us that there is no such thing as a sure thing.

    After a period of stability, and a lot of "touching wood" that it would continue, we were lulled into a fantasyland, where we just expect Jon to remain stable. When something happens, like a catheter or a trache pulled out, we're thrown for a loop, because it disturbs our little semblance of normalcy.

    So it was last night, when Jon's belly began expanding like a hot air balloon, and water poured from his mouth, as if he had a faucet in his throat. Suddenly, Jim and I were in crisis mode, running through our bag of tricks for the situation, and trying not to panic, as we remembered what to do "next," or "now."

    By midnight, we thought that we had Jon's fluids pretty well under control. Jim ushered me off to bed, and as I was brushing my teeth, I heard the suction machine, and I knew that those fluids were definitely not anywhere near under control. Back downstairs to Jon's room I scurried, and Jim and I kicked it into high gear.

    Suctioning through Jon's trache, in his mouth with a Yaunkauers, and wouldn't you know it? We needed a new suction canister in the midst of all of this! Jim ran to the garage to retrieve a new canister, tubing, and then he couldn't find the connector tube. It's so frustrating to have so many supplies and not enough room in Jon's bedroom to stash all of them for convenience. That is particularly true, when Jon is drowning in his secretions, and every second counts to keep him alive.

    Eventually, Jon tossed his cookies, twice. While this can be alarming, because of the risk of aspiration, it is one relief valve for the excess fluid, which helps to bring down his distention. Jim and I both remarked on how frightening these episodes were, because of the forcefulness of his regurgitation. Esophageal tears are my main concern, especially because Jon has a trache.

    Jon finally fell asleep at 2:30 a.m. His SATS and heart rate remained excellent throughout all of those hours of struggle. His urine output slowed considerably, where he had just voided a tremendous amount yesterday. And his bowels are moving today at a ridiculous pace, like months and months of waste are being released from his body. It's incredible, in a way only one who deals with this kind of issue could understand.

    Jim and I feebly muddle through tossing out theories as to why this happens to Jon suddenly. Like uncooked pasta on the side of a refrigerator, our theories just slide down to nothing viable. We search for a common denominator each time it happens, and we can't find any. Not peeing enough. Constipated. Peeing too much. Pooping too much. There is no consistency to when these episodes occur.

    "Maybe it's this " or "Could it be that " we postulate and ponder to no avail and no clues or answers to prevent this from happening to Jon.

    The doctors don't have any diagnoses. Jon's nurses have run out of ideas to explain it. We're on our own.

    Jim and I don't want to think, let alone talk, about the "what if we can't stop the fluids? What if we can't get his belly down? What if we can't feed him, because of the risk of aspiration?" And it hasn't come to that yet, so we think we can just avoid that discussion. We think we'll always be able to manage Jon's secretions and keep him safe. Jim frequently says, "We've been here before." But what about that one time, when where we've been before isn't where we are now?

    And while we love to revel in those times of stability, a crisis, like the one Jon had last night, rockets us back into reality. We look at each other in shock, shaking, and exclaim in exhaustion, "That was scary! Where did that come from? Why did that happen, after all of this time? What can we do to stop this?" We know the answer. There isn't one.

    Now, we walk on eggshells. We have to decide how much food Jon should receive per hour, and when we should start his feeding. We have to calculate how much water is sufficient to hydrate Jon, but not overload him, as he is retaining fluid. We have to judge his status by his drool and his coughing, periodically opening the plug to his trache to see if water spews out of it. We have to know when to suction, and when Jon's had too much suctioning, thereby creating more secretions.

    Tonight, I replenished all of Jon's supplies in his room, so if there is a crisis, we won't have to add not being able to find something to the list of issues. I learned again last night to always be prepared for anything. I can't allow myself to believe that all will be well all of the time, when that is not how we roll here.

    Thankfully, so far, Jon is faring well. And as long as Jon is fine, we are fine.

    The status quo is whatever happens next.

    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.

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    Distinguished Community Member andromeda31's Avatar
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    Hi Rose,

    Oh my....that would be scary!! Sorry to hear that things are not remaining stable for Jon. ((((hugs)))) I hope you & Jim can get some rest & recovery before another crisis happens....and that a crisis doesn't happen for a long, long time! Are the new canisters working ok?

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa)))))) ~

    Thank you for your positive thoughts! Jon got through last night without any problems, and he's been on his regular feed and is back to his normal urine output. It is such a mystery! He's catching up on his sleep this morning. Poor guy was exhausted yesterday.

    New canisters are working adequately. We've figured out that we can make our own connectors, by cutting the drainage tubing on the extra drainage bags, which come with the cath kits, but which we don't use, because the valve is too hard for me to operate with my old lady fingers. Jon gets a different kind of drainage bag through our "new" respiratory supplier. We have a stash of sterile, unusable bags, so that's a ready supply of home-made connectors for the suction machine.

    Hope everyone is well in your family. How's Caitlin's new w/c seat working out? Stay warm!

    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.

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    Rose, I'm so sorry to hear this. What a frightening time. What a team you and Jim are! Glad to hear he had a stable night and praying he stays stable. I hope you and Jim caught up on your sleep. I think I said this before but you should be given an honorary degree! Maybe emergency medicine...
    Mary Grace

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    Distinguished Community Member Jo6's Avatar
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    (((((( Rose)))))) You and your husband give me pause to stop in my tracks and give an abundance of prayers. After all these years we are trying to deal with seizures and all that goes with it, how much? I have no idea.

    The granddaughters are all doing much better, but I myself stay on "ready" any time they need me. I am afraid the parents don't take things as serious as they need too. Of course I'm older than dirt, been around for 71 years and wonder why the Drs. can't tell me why I have started the seizures, why the girls are having them.

    From things I read here it feels like many have the questions, many can not find answers. It may not be for me to understand, but I'm still here to help the young ones.

    Rose, I picture you with your halo shining bright and hubby right there beside you. Jon is blessed to have such caring parents. I'm thankful you have this forum. I am also glad you invited me to come. I've learned so much since I first talked with you, Rose. To all the others that post here, I thank you. I learn from each of you.

    Thank you Rose for making it all so clear. I see you buzzing around Jon's room, you cool as a cucumber, just doing what you would say was "just a normal day" in the life and times of our home.

    I would like to say thank you from the bottom of my heart for all the information and the love that is always present with your post.

    To all others I also say thank you, I have learned much from this Forum.

    I'm going to put a big bag of hugs over in the corner . Feel free to take as many as you want. You all deserve much more, but maybe later .

    My love to all, Julia
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    ((((((Mary Grace)))))) ~

    Thank you for your prayers and positive thoughts. So far, so good with Jon. His bowels have slowed way down now. It was just an unreal amount pouring out of his colostomy like lava! Pee slowed down too, then came back up, now is slow again.

    I know you and everyone here can relate to my tales of woe. Our children are full of mysteries. And just when we think we have a handle on it, something happens to blow our theory. It is so incredibly frustrating, as you and everyone knows! That is why I share our little adventures here on CN, because I know they will be understood completely. If you haven't lived our kind of life, it's difficult to really imagine or perceive it.

    Thank you for the compliment, but I'm not sure that I'm qualified for any kind of honorary degree in medicine. Maybe I could qualify for a CNA. Jim could certainly be a respiratory therapist. The man is a genius with a suction catheter. And he's the one, who inserted the trache, when Jon pulled out his trache. Jim is bolder and more daring than I am, which is good. Fortunately, Jon doesn't need breathing treatments often, but when he does, Jim's the one, who makes that call.

    When his hair gets long, before our next cut (our neighbor is a hair stylist and comes to our home, which is a blessing, otherwise, we'd have floor length braids!) Jim dons a surgical cap to keep it in place. Jon's nurse and I now call him, "Dr. Jim."

    Dr. Jim and Nurse Rose. Ha! Sounds like two soap opera characters! What if we're living in a parallel universe, and we ARE living in a soap opera?!

    I know what you're thinking. And yes, I agree. You're right. I do need to get out more.

    Haven't seen an update from you for awhile. How is sweet Kathleen? I'm sure that you have your hands full with your darling babes too every day. Hope that all is well.

    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.

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    ((((((Julia))))))

    Is 71 considered older than dirt these days? I ain't too far behind ye, Missy! So, in our 90s, are we older than sand?

    I'm so sorry that you and your granddaughters have a seizure disorder with no underlying diagnosis. That is terribly frustrating, I know. But, from my experience, even if the underlying cause can be determined, seizures are generally all treated in the same way. AEDs, VNS, possibly surgery, the ketogenic diet.

    "If this doesn't work, we'll try that. If that doesn't work, we'll try something else. If something else doesn't work, we'll keep looking for the answer." Basically, that is what most folks face, who have epilepsy.

    Please feel free to post here, Julia, with any of your concerns or questions about your granddaughters, or your self. Maybe we can also help you to understand better the approach of your granddaughters' parents and how or why it might differ from your approach. I don't know. Just tossing out suggestions. Start a new thread on CN any time you want to chat about these concerns.

    There is no halo above my head, dear friend. Unless grey hair counts as a halo! The halos are worn by my heroes, Michael and Jonathan.

    And cool as a cucumber ... well, not always. I sometimes panic, which I did the other night. Then I work myself down, breathing and calming myself so that I can think clearly to respond to the crisis. We never want to frighten or upset Jon, so it's important for us to remain calm and collected. But that is really difficult, when a major, life-threatening crisis is ensuing. Jim and I change roles in being the one, who is calm and the one, who is frantic. It depends upon which one of us is less sleep deprived. That is usually me.

    We have 22 years of experience as a team caring for our precious sons. We have learned so much in those two decades. But there are still so many things that we don't know. That no one knows.

    That's our status quo. Living on the edge of our seats.

    Many ((((((((((((HUGS)))))))))))) back to you, Julia.

    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.

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    Rose you paint quite a picture with your words... I see Dr. Jim and nurse Rose with her nursing hat and of course "halo" as Julie said. Consulting and working side by side calm and cool. You're more of an ispiration than you may know.
    Thanks for asking about Kathleen. She is doing quite well for the first time in a long time (knockin wood) and for the longest stretch in a very long time. She's back to wearing her leg braces which we had adjusted again a couple weeks back. But her heel cord is still too tight even after her botox to stay seated in her brace. I have to call her physiatrist to ask if he may need to up the dose the next set of injections. Her foot is popping out of the brace putting way too much pressure on the ankle strap and her ankle and toes don't seem to be getting good circulation. She's been sleeping well and getting up and off to school ontime everyday for a couple weeks now. She's still on the third round of antibiotics which seem to be what has made the big difference. No butt pain, uncomfortably bloated belly and burps. She has 2 days left on the antibiotic so I'm really praying that this took care of the bacteria for good. It seems a lot of people with crohn's deal with this on and off. Her vitamin D level was just retested and it's good. Thyroid will be tested again next week. Her 17th birthday is coming up in March so she's planning her surprise party LOL. We ill be having a surprise party again of course and she WILL be surprised. She loves to sing so we are planning g an American Idol party and hold "audition" with a karaoke machine and prizes. Can't wait! One thing that I still se happening that I can't quite understand is she still complains that "I feel warm" she will show me it's her head that feels warm and she will get upset and usually cry. This happened Saturday night before she fell asleep. She was holding her head saying she flet warm and then she would alternate between laughing and crying. I was thinking that it could possibly some kind of "headache"? We have next week off from school so I'm hoping we ill be able to do some fun stuff together...

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    ((((((Mary Grace)))))) ~

    Do you take Kathleen's temperature daily? I recommend doing this to have a baseline temp, and to keep track of any changes in her temp when she's under stress. With hypothyroid, taking the temperature first thing upon awakening is suggested. Then, you might try taking her temp, when she says she feels warm to compare with her baseline temp.

    I'm thinking that it might be a thyroid-related feeling of warmth. Does Kathleen have the typical hypothyroid feeling of being cold most of the time? If so, it could be a fluctuation in her thyroid level, when she's feeling warm. Is she flushed? Are her palms sweaty? Are her hands/feet cold?

    Do you have a home blood pressure machine, as well as a finger pulse ox? If so, then I suggest that you take her BP and her SATS/heart rate every day, when you take her temp, again to get a baseline. Then, when she says she's in pain, or when she says she feels hot, check her BP and SATS/HR. Very very simple. I think everyone should have these basic vital signs equipment, actually, because you never know when you might need them for someone in your family. Even something like having the flu ~ these tools are handy in making sure that it isn't going South to pneumonia.

    These tools also help to determine pain levels. If the HR is high, or the temp is elevated, and the SATS are low, you can discern how severe the pain is by those measurements.

    I've found that my lips are more accurate sensors to discerning a fever than my hands are, so I "kiss" the back of Jon's (or Michael's) neck, and I can often predict what the thermometer will read by that touch. Cold hands, mottling of the skin on the arms (blotchy, bluish) are indicators of fever also.

    When Kathleen points to her head the next time, just check her eyes carefully. How are her pupils? Is she alert? Coherent?

    Do these episodes of feeling warm coincide with the antibiotic she's been taking? In other words, did it start happening after she went on the antibiotic? If so, then I suggest looking up side effects to that antibiotic, just to rule it out as the cause.

    Just rummaging through my bag 'o tricks here, trying to think of explanations.

    I'm so sorry to hear about her problems with the AFOs. I have zero experience in this arena, but I pray that it gets resolved soon to Kathleen's comfort.

    Gosh, it seems like yesterday you were planning Kathleen's Sweet Sixteen party, and here it is her 17th birthday! Time really does fly! I love your idea of the American Idol theme, and I'm sure that Kathleen will have a fantastic time, and outlast everybody! Party On Girlfriend!

    Please let us know what fun things you do during your week off (question: why do you have a week off?).

    Healing prayers and positive energy always flowing your way ~

    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.

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    Rose thank you for some really great ideas. Kathleen's thyroid will be tested next week we changed her dose 8 weeks ago. Since her strokes she has always been very sensitive to the heat and cold but more sensitive to heat. It exhausts her also, she seems to have a difficult time cooling her body she doesn't sweat much at all. Her hands and feet get quite blue even when she's not cold. She has mottled skin quite often also. Dr.s have always chalked this up to her strokes. Kathleen's temperature seems to always run low. I take her temp whenever she complains her head is warm and it's low. Like you I usually use my lips and it's pretty accurate but she insists I take her temp. She's randomly complained about this for quite a while well before the antibiotics. It struck me the other night because it had been a while since she had this happen she's been generally feeling good lately. Also it was combined with the laughing and crying. Because of the moyamoya she is prone to strokes, seizures, headaches and migraines. Blood pressure, dehydration, and hyperventilation are all things to be cautious of. When this happens again I will definatly check the things you mentioned.
    We can't wait for our week off! I'm praying she stays feeling well. It's our Winter Break. One again thanks you for all your help and prayers.

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