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Thread: CN Central: October Updates

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up CN Central: October Updates

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

    October is upon us!

    Have you started your Christmas shopping yet?! If we blink, it will be Christmas Eve! That's how fast this year seems to have flown to me. But then, I'm old, and "they" say that the older you get, the faster time flies. "They" must be old people, because I have found that it is quite true.

    Good news here that Jon has been stable since his day of fever and fluid buildup last Tuesday. But it's taking 4 T of Mom every few days to keep his bowels moving. That's not optimal, but we have to do something, and it's the least offensive approach for him. We tried Miralax and Lactulose, and they both gave him more gas than he already has. Having a trache and a G Tube, air is always entering into him.

    We think that he's over his therapeutic level(s) on his med(s), as he is quite drowsy when he is peaking. He's falling asleep, when I'm lifting him up in the bed for lights out. He is sleeping well for 8 or more hours, but he's still tired during the day.

    He is due for a nursing visit to change his catheter and his trache, so we might as well throw in a blood draw to check his levels.

    So, we got Jon stabilized, and Weds at 11:30 p.m., just after Jon was settled, and I was preparing to eat my dinner, Jim woke up with a fever of 103! He had gotten up to pee 5 times in his 6 hours in bed. His lower back was aching, particularly on the right side. Kidneys. I took his BP, and it was amazingly normal for a temp of 103!

    Fearing that he might have the flu/virus, I donned mask and gloves to care for him and for Jon. The horses were out of the barn at that point, of course, as he would have been brewing this all day, when we had direct contact with him. But I thought I'd be safe, just in case.

    He took Tylenol with some water and went back to sleep. I was now working Jim's shift. 12:30 a.m. Food off/water flush. 1:30 a.m. Meds 2:30 a.m. New formula bag/priming, reprogramming, food on. 5:00 a.m. Water Flush. Jon also had a 15 minute coughing spell, which required suctioning.

    I tried to rest on the living room futon, but it was pointless, because it just exacerbates my back and hip pain. Jon's recliner was comfy, but I had to get up so many times, that a few times I nearly tipped it over as I stood up, because I got tired of lowering/raising the footrest.

    I was also running upstairs to check on Jim. He's breathing. Good. Back down to Jon.

    On Thursday, Jim's temp was normal, but he was still aching and having right side back pain, so I called our doc, spoke to the triage nurse, and the doc ordered a UA. Jim could barely stand up, so he sure couldn't drive to the doc's to give a urine sample. We have specimen bottles, and we know how to collect a sample, so I convinced her to convince the doc to let us do it at home. He agreed, knowing our situation.

    Our dear friend came by to pick up the sample and take it to the doc's office for us, since I couldn't leave Jon, and Jim wasn't able to come downstairs to be with him, and we still didn't know whether he was contagious. What a great friend, to carry Jim's urine! It was triple bagged, of course, but still ... that's the sign of a true friend.

    Results returned as normal on everything. Great!

    At 11 Thursday night, Jim got up and said that he felt well enough to take his shift with Jon. I protested, and then he protested, and I caved in, because at that point I hadn't slept in 42 hours. I can't find a word to aptly describe how tired I was. But I was fully prepared to stay up another night, if Jim was still ill. I also don't have words to describe how heavenly it was to collapse into bed. I woke up at 9:45 a.m. on Friday!

    Jon had had a great night, was peeing and pooping, and Jim was fine. They were watching Let's Make a Deal in Jon's room, when I wandered in, shocked at the amount of sleep I'd been able to garner! Jon grinned, held out his arms, and said, "Mommy!" as if I'd been gone for weeks.

    So what was wrong with Jim? I have a theory. Jim loves expresso, and we found a little Bialetti expresso coffee maker, which sits on the stove and makes 4 expresso cups of coffee. Jim poured those 4 cups into a mug, 3 times a day, and enjoyed. In between, Jim had his traditional English tea. Caffeine overload. And don't forget the teaspoon of sugar he puts into every cup.

    And all of that caffeine affected his sleep, and for days prior to his "crisis," he had not been sleeping well. Couldn't get to sleep, stay asleep, feel rested after sleeping, nodded off during the day, etc.

    He was sleep deprived and his kidneys and bladder were being bombarded with caffeine. He sometimes forgets that he isn't in his 30's anymore, when he could eat and drink whatever he desired without adverse consequences.

    With some free water over a period of hours, and no caffeine, he was able to flush it out, and he recovered.

    Now, the warnings I had issued to him, when he started over-consuming expresso, seem to be sinking in, because he experienced some significant, disabling pain. And, he witnessed the hardship, if you will, on me taking over his shift and not sleeping or resting. To be clear, I don't consider caring for Jon and Jim to be a hardship, but I am limited in many ways as to how much I can do. And anyone, who hasn't slept for 42 hours, is going to be really, really, really tired.

    So, that was the end of September, and here we are in a new month, with new possibilities!

    Now, it's your turn to share your adventures!

    Know that my prayers have been flowing for all of you, and for your children, and loved ones ~

    Join me here ~



    Your smoothies are waiting ...

    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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    Two weeks into my new job. Great so far. I think the work will be rewarding. Colleagues great - feel very welcome. I live close enough to work that I can 'walk' there in 20-25 mins. New city is fantastic. Apartment is working well -- perfect location in the inner city. Flatmate good - local so has had lots of tips and tricks. Traveling home next weekend to pick up some stuff I left behind; will get to see friends - looking forward to it. I have managed to see friends who live here enough so loneliness hasn't been a big thing, and met some cool people through them too. Friends from hometown travelling to see me too in the near future. Living the dream, to be honest.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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    Distinguished Community Member andromeda31's Avatar
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    Hello!

    (((CPchick))) Glad the new job & city are going well! Love seeing your pictures on fb! :)

    (((Rose))) Wow, 42 hours....I would have collapsed! Glad it wasn't the flu or anything else contagious though. Caffeine can really do a lot of bad things. When Caitlin was a preemie baby, we actually were prescribed caffeine (it was in a liquid form) as a medicine to give her to keep her heartrate going strong. Glad you were able to catch up on your sleep once Jim was better. Hope Jon stays stable for you so you & Jim both can recover completely. :)

    Caitlin made it through her first week of full days! Hooray! I am still picking her up though, instead of having her ride the bus (1 hr ride home). We really live about 11 minutes from the school ~ 6.5 miles. When she comes home, she goes right into her bed and takes a nap so she is still gaining her strength back. I just made her transport calendar for October today and I am going to keep picking her up myself until Brandon's cross country season is over since it just works out better. Otherwise, her bus would be coming to our house and I would be at the school waiting for him to be done with practice! It works out good since his season ends mid-October so it is like taking baby steps of lengthening her school day.

    We had an appointment in Milwaukee on Thursday for pulmonology. It went great! She did much, much better on the blowing tests. The doctor we saw was a different one than we had seen for the pre-op appointment, but he was super nice! I love it when they like to educate you...he had a great personality! He even said after one of my questions....that he likes to talk, lol! :) I had been thinking that I didn't want to add another specialty to our repertoire, but he suggested coming back in a year. I did agree since we will be able to see him at the local hospital (that has a satellite clinic for Children's). He comes up here once a month. He had many suggestions for preventative things, to prevent pneumonia. He is sending in a Rx for an albuterol inhaler for Caitlin if she should come down with a cold or virus, we will have it on hand at home to use to help keep her airways open. Also he gave us a cup thing to clap on her back to help mucus come up. She is good now, but she does get "junky" sounding when ill. I am totally fine with a once a year visit with him. Always nice when you get in with a good caring doctor! :)

    Coming up on the 16th, we have our post-op follow-up ortho appointment. Looking forward to that! I feel Caitlin has finally turned the corner on her recovery. She is almost off the valium, down to just one low dose at bedtime. The baclofen is working great and we are at full dose of that. I have not noticed any side effects from it either...bonus! :) The spots on the base of her incision have closed up completely. I was fanatical about changing the bandaid and keeping it dry so I am sure that helped. Also, she had a nasty rash on her bum that I finally got to clear up. I think it was actually ring worm (gross!)....Every cream I put on it didn't help and then recently I noticed ring patterns to it which I looked up and saw the clotrimazole cream helps clear that. A few nights after starting that cream on it and it is almost completely gone. Kind of creepy that she must have got that from the hospital somehow since no one else here has that. Thankful that I am obsessive about washing my hands after changing her diapers! That has to feel better for her!

    All the school stuff, sports, religion classes, piano, hunting stuff is keeping me hopping! I hardly have any time for me which is starting to make me a little bit crabby. I am still not back to the gym yet since I am using my extra hours (now that C is in school all day) to get caught up on the stuff I had left undone in September. I think once I finish the basement cleanup and get back to my regular "school day" routine, I will feel more myself. I feel bad that I haven't seen my sister's new apartment yet. I went there once since she moved the beginning of August, but she still hadn't unpacked yet. The next few weeks are not any slower either.

    I have started thinking about Christmas, but haven't gotten any further than that! I think Brandon needs a tv of his own for a present. We had an extra one, that I actually put in his room when he was sick once, but he told me to take it out when he was better (!?) so I put it down in the basement by my treadmill. I like that too much to give it back up, lol! The boys just fight all the time lately. Tyler & Logy share a room and Brandon has his own room (as does Caitlin). Today Tyler asked me if Brandon could move back with him and Logy go into Brandon's room by himself. I couldn't believe that Brandon would give up having his own room to share again! But I guess they were really considering it. But when Brandon went into his own room (T & B shared when Logy was a baby), I bought him his own bed and nice bookshelf & desk that match nice (all black). So I am not sure how I would divide that up. I have been planning to buy a bookshelf like that for T's room in the dark brown color to match their bunk beds but with the surgery, haven't gotten around to that yet. That is just going to be a really, really big project if they end up doing this and I don't know when I will fit that into my life! Ugh! We'll see how this plays out....

    Happy fall!

    Lisa O.
    Last edited by andromeda31; 10-04-2015 at 05:57 PM.
    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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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    ((((((Erin)))))) ~

    You ARE Living the Dream! How happy I am for you that all is going so well for you. New friends and staying connected with old friends. I had a feeling it would work out that way for you! Prayers for safe travels and good times for you this weekend, when you return to gather your things and see your friends. Keep living that dream, Erin. You have earned it, and you truly deserve it.

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

    As always, you have been incredibly busy! I don't know how you do it! (People used to say that to me, and I answered, "I do it with mirrors!")

    So glad that Caitlin has been able to manage full days at school, and that her wound has closed and is infection free. It's good that it works out for you to transport Caitlin for a while longer too.

    Great idea to maintain a connection with the pulmonologist, because pneumonia can be a concern for our kids, who are less mobile and active. Did the doc show you how to do percussion with the cup?

    If not: turn Caitlin on her side, start at the bottom of her lungs, cupping gently, upward to the top of her lungs. Repeat this several times. Turn her on her other side, and do the same thing.

    When Caitlin is laying on her back, use the same gentle patting motion with the cup on her chest, starting from the bottom of her lungs to the top of her lungs, on both sides.

    The upward motion is needed to bring the mucous up from the lungs.

    We use Albuterol for Jon in a nebulizer, which is a small machine, to which we attach a tube and a cup to hold liquid albuterol. I don't know the difference in efficacy between the nebulizer and the inhaler modes.

    As cold/flu season approaches, I recommend that you get a pulse oximeter. A simple one to put on Caitlin's finger to check her SATS and her heart rate periodically, and especially, if she becomes ill. Elevated heart rate can also indicate pain. It is a very useful tool in caring for Jon, and I think for any one, who has health concerns. Or for anyone, at all, really. When Jim was ill last week, I took his BP, his temp, and was ready to take his SATS, but he fell back to sleep before I could.

    I also love it when docs take the time to explain and educate me. I also love docs, who actually listen to me, and who respect my knowledge of my children.

    What has transpired these past couple of days in the Logy, Tyler, Brandon room shuffle? Any possibility that Tyler could move in with Brandon? Would that create less work for you? What would happen if you assigned this reassignment of rooms and roommates to the boys? Let them come up with a plan, and let them make the changes? Am I asking for a disaster for you? (I was thinking of turning it into a learning experience for them, not something to turn your hair grey! I promise!)

    I hope that you can garner some time for yourself amidst all of that calls for your continuing attention and action. I pray too that you're sleeping well and taking good care of yourself.

    Healing prayers on their way ~

    OUR UPDATE

    Jon has been well thankfully. We are on Poop Watch, since I gave him 4 T of MOM today, because he hasn't produced in 4 days.

    Jim is better, although he continues to be quite fatigued.

    And I am fi ... What? Oh, I'm fine!

    Dreaming of this ~



    and these ~



    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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    Hi everybody!

    Rose, I'm so sorry Jim was sick. Indeed he has a great friend if his friend carries his pee. I don't even know if I would have the guts to carry a family member's pee let alone a friend LOL. Probably why I don't have kids…yet LOL. Thanks for all your advice!!!

    CPchick, I knew your friends would stick by you!!! It sounds wonderful!

    Lisa, glad Caitlin is healing and back to school. I was also a premie baby. :) As for the boys it might be good for them to choose who gets what room like what Rose said. It lets them feel independent.

    As for me, my friendship problems have improved a bit(thanks to Rose and her advice) but my schedule is still kind of a mess so I'm hoping none of my friends feel ignored but these are really circumstances I have NO control over. Pray for me to have more time on my hands soon LOL. Aside from that I got to give an interesting presentation on Cerebral Palsy and Brain Injury and use one of my film trailers as part of the presentation. You can read more here http://cripvideoproductions.tumblr.c...y-presentation I had no idea how relatively easy it was to get a brain injury and how many people have them. Unlike CP a lot of the other types of injury like TBI or stroke can be completely invisible. I'v heard this referred to as "invisible disability" and it can affect people just as much or even more than a disability that is visible. I met somebody at the presentation who had a TBI that effected his sleep and gave him nightmares and was like "wow!" I hope to do more outreach like this soon.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Cool It's Really Hot!!

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

    ((((((funnylegs4)))))) ~

    I'm happy to hear that your friendship is on the mend. Sometimes a busy life can interfere with friendships, so we must make an extra effort to stay in touch with those near and dear to us. Just drop your friends an email occasionally to say hello and ask what is new with them. A couple of sentences. Or a cute e-card. Let them know what you've been doing, so that they realize that you have a full schedule and lots of projects going on. Or text them occasionally. Just keep the lines of communication open.

    Congratulations on your presentation, and what a great experience for you to present your film and discuss brain injuries in an educational setting. I hope you will have more opportunities like this one.

    Invisible disabilities are common. We have a friend with COPD. She looks just fine. But she can't walk very far, so she uses a handicap parking placard. And there are many neurological conditions, which don't have overt symptoms to a stranger/bystander.

    I'm sending up a prayer that you will have more free time soon, and that while you are tied up on your projects, you are finding your dream. Finding your dream is hard work, as you know. Just remember that you can have your dream, and a social life. They aren't mutually exclusive, and you need both for balance.

    OUR UPDATE ~

    On Friday, it was 105 degrees here. I'm not exaggerating. Yesterday, it was 101, and today, it reached 99, so we have a cooling trend. Perhaps God is giving Mother Nature some Tylenol.

    Three days of rain are predicted on Weds, Thrs, and Friday. Well, they said that a couple of weeks ago. And we got NO RAIN. None, nada, zero, zilch, zip, nary a drop. So, I do not believe the weather casters any longer, and I think they are just trying to appease us, as we are boiling and drying up.

    Yesterday, Jon battled SATS in the 80s, and we suctioned and gave him a breathing treatment. His heart rate was elevated in the 100s. His temp rose to 100.4 gradually throughout the day. But, by bedtime at 11:30, everything was back to normal.

    I dare you to figure that out!

    If you do, I should buy you a gold Mercedes and an Italian villa!

    Today, Jon has been just fine, like yesterday never happened.

    On Friday, Jon's nurse changed his cath, and his trache, and she drew blood for med levels. Results returned: Dilantin ~ 18.3 (range is 10-20; his therapeutic level is 11-13); Depakote ~ 37.8 (within his therapeutic range, which is much lower than the given range of 50-100).

    So, he is near toxic on the Dilantin, and okay on the Depakote, which is the one handling the simple partial seizures, I think. Overloaded on Dilantin translates to constipation. Check. Lethargy, drowsiness, slurred speech, weakness. Check et al. So, we will gradually lower his Dilantin dosage and maintain his Depakote dosage.

    Jim and I just saved Medi-Cal the cost of a consult with a neurologist! Or two. Or three. Or hundreds.

    In 2011, when Jon's ICU intensivist and pulmonologist allowed us to become Jon's neuro, we did this every single day. Jon had blood taken during Jim's watch, and on my watch, we got the results. I called Jim at home, and we discussed the levels and adjustments to the dosage FOR THAT DAY. It changed every day for 40 days, because his levels changed every day. He was on several antibiotics, all of which interacted with his seizure meds. And for 40 days, we successfully fended off seizures. It was pretty amazing, and I think we earned a good rep with some of the ICU docs/nurses for being able to do this.

    Jim and I learned the hard way that neurologists like to order "loading doses," which tend to put our boys into a drug-induced coma. That is not the answer. Slow and steady wins the race. Oh, and it's best to begin with the knowledge of what the antibiotic does, when it interacts with the Dilantin and Depakote. Without our insistence that they consider this, most, maybe all, docs just prescribe a drug with fingers crossed that it works.

    It's mid-October already! What is going on?! Why is time moving so fast?! It's fall. Why is it 105 degrees here?!

    I hope that it is cool and pleasant where you all are. And that you're surrounded by the beauty of the season. Healing prayers for all ~

    Join me here ~



    And rehydrate ~

    Your smoothies are waiting

    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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    Well, was hoping to post a positive update on Tyler, however, we are at it again. Yesterday after seeing the spine surgeon for the yearly checkup (risk of surgery outweighs any benefits) Tyler started gagging and retching on the way home from San Diego. Was hoping he didn't hurl down the back of my husbands neck. Spent the rest of the day gagging, retching, seizing, moaning, in a cold sweat and pretty miserable. Debated on taking him into Urgent Care, but decided to ride it out at home and contact the Urologist this morning. Got 2 1/2 hour of sleep last night cause Tyler's temp went up as did his seizures. Bed was soaked with sweat. Motrin, Diazapam and Zofran at 4:00 am. Called the urologist first thing and just heard back from him. Tyler has over 100,000+ colonies of Klebsiella Pneumoniae in the current UTI. Luckily Bactrim Septra (the drug from Hell) will supposedly kill the bacteria. This is the same bacteria Tyler has been fighting since August! Nice. I am so not impressed with this doctor. My husband had a basal cell cancer dug out of his face on Monday, and this bacteria can be transmitted person to person and cause wound infections. It just keeps getting better and better. Hoping for the best.
    grandmother of Tyler (22): 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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    ((((((Tamie & Tyler)))))) ~

    I'm so sorry that Tyler is battling another UTI. Has Tyler taken Bactrim before? What was his reaction to it? After Jon's last experience with Bactrim, resulting in seizures, we won't be letting him have it again.

    Here are some other antibiotic options for this bacteria:

    http://www.webmd.com/drugs/condition...Infection.aspx

    Any possibility that you might find another Urologist for Tyler, since you are not happy with his current doc?

    Maybe transmission of bacteria to your husband can be prevented by wearing a bandaid or covering over his surgical site until it heals? Perhaps he should mention this to his doc to get suggestions for keeping his wound free of infection.

    I wish that you had some help with Tyler's care, so that you could get some sleep and rest. I worry about you, Tamie.

    As always, healing prayers are on their way. Please check back in and let us know how Tyler is responding to the Bactrim.

    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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    Tyler has been on Septra before, hence, why we call it the drug from Hell. It makes him miserable, but it is the only drug that will kill this particular strain. He got off of Cipro a week ago and this time, the bacteria is resistant to that one. His temp is rising today, he is in a constant cold sweat and we are hoping one more dose of the antibiotic will stop the progression of the bacteria. We are going to look into an infectious disease doctor taking over Tyler's care. It would make more sense than this.

    I taped my husband's face, but he isn't great about following doctor's orders. Typical macho male behavior, I guess. I am watching his cheek closely. Swollen and slightly red, but my husband never put the ice on as directed.

    Tyler had a better night and I got about 5 hours of broken sleep. An improvement over 2hrs. and 19 minutes.

    Thanks for the healing prayers.
    grandmother of Tyler (22): 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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    ((((((Tamie)))))) ~

    Yes, an Infectious Disease doc is definitely a better option now than your urologist. I wish that you could get to the core of the cause of these repeated infections.

    With the UTI, the sweating, retching, etc., do you feel that Tyler is receiving enough fluids to prevent dehydration? This is always a concern with Jon, when he runs a fever, sweats, slows down on his peeing, etc. So we try to include more free water to compensate. It's difficult to judge how much water is needed, and what constitutes overload, especially if water retention is part of the UTI.

    Here's what I say to my husband: "If you don't take care of yourself, then you get sick, then I have to take care of you AND Jon. So just do as I ask, and take care of yourself, please!"

    Try that on Macho Man!

    He needs to make sure that he's wearing gloves, whenever he is interacting with or caring for Tyler. And even with gloves, hand washing is important.

    Same for you, Tamie.

    I'm praying the Bactrim works quickly and that Tyler doesn't suffer the usual side effects. I'm praying that neither your husband or you pick up this bacteria. And I'm praying that an Infectious Disease doc will help you get to the bottom of these continuing infections.

    Praying also for sleep. Precious sleep. May you all sleep and rest.

    Please keep us posted, Tamie ~

    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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