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Thread: Update on B

  1. #1
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    Thumbs down Update on B

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

    Since I hadn't heard from B's mom since last Friday morning, I called her today. B is not home. He is still in the hospital.

    Last Friday, the doctor decided that B might have a UTI and/or a blood infection. He started B on Rocephin, a broad spectrum antibiotic via IV.

    When I called today, she was waiting for the Infectious Disease doc to talk to her. Another doc came in this afternoon and told her that B doesn't have an infection. He was ready to discharge B.

    The nurse took down B's IV, before she began the paperwork. Wrong. Paperwork first. IV is the last thing to be removed ... just in case.

    The nurse checked B's vitals (he is not on a monitor in the room, because he's not in Step Down or ICU). B's heart rate was 162! She may have used a portable pulse ox, rather than counting by feeling his pulse on his wrist. Doctor was called, and an EKG was ordered. So, he's still in the hospital.

    B continues to sweat profusely day and night, requiring soaking wet gowns to be changed every 20 minutes. Still no answer for this sweating!

    It could be his heart causing this sweating, and that should have been ruled out days ago. He did have a problem with low potassium, due to malnutrition and dehydration, and that affects the heart. But he's having daily blood work and receiving potassium when it's low.

    I am still wondering whether he might be in status, just not exhibiting the typical manifestations of his seizures. I think he needs a neuro consult, and an EEG.

    She held her phone up to B, so I could hear his breathing. It is labored, huffing, gasping. Yet they say his lungs are clear. She is suctioning his mouth frequently, as he has copious amounts of saliva and mucous. Yet his lungs are clear?

    She can't take him home in this condition! Plus, she has to have his formula and feeding pump/bags/syringes delivered, and a home health nurse to visit to set him up on service and train B's mom. They can't just send him home without all of this coordinated and in place.

    And she confessed to me today that she hasn't touched his G Tube yet. She hasn't even held a syringe. She's afraid.

    I understand, because I felt that way about Michael's G Tube, Jon's colostomy and trache. But I gave her encouragement. I suggested that she just practice with the syringes, using a cup of water. Just to get the feel of them. Then I told her to look at him and remind herself that she will do anything for him, and she MUST do this. I told her that there isn't anything to fear, and once she has done it a few times, she will be more comfortable, and someday wonder why she was so afraid. I flat out told her, "You can't take him home, unless you can handle the G Tube. You won't have a nurse or anyone there to help you every minute of the day. Start now holding those syringes."

    B's mom has refused the blood thinner given as protocol. But a nurse came in ready to give him a shot in the belly anyway. She checked B's chart. Sure enough. No blood thinner had been given in the past 5 days. Hmmm ... charts can be so handy. When they are read!

    He doesn't have a fever, but the nurse gave him Tylenol ... to prevent one. ????

    He may have an infection. So let's treat it. Oh wait. He doesn't have an infection after all.

    B's mom told them and it's in B's chart: No Ativan unless he seizes for more than 20 minutes. So, B's mom goes home to shower, change clothes, check the house (every 2 days she does this). She was gone for 1 1/2 hours. When she returned to the hospital, B was zonked out on Ativan. The nurse said, "He was fussing and fidgeting, so the doctor said to give him 1 mg of Ativan."

    And B should have a PIIC line, but he doesn't. She says his body looks like a bruised pin cushion from all of the blood draws and IV placements.

    I'm very concerned that B isn't receiving the level of care he needs, so I'm encouraging B's mom to talk to the nursing supervisor. Frankly, I think he needs to be in Step Down at least, if not ICU. Something is dreadfully wrong with him, and these docs on the regular medical floor are clueless.

    Thank you all so much for your prayers and support. I pray that I can report some good news about B very soon.

    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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    Ohhh, this sounds dreadful. And the worry is that the longer he stays in hospital while they fool around not reading charts and not figuring out the problem, the more likely a serious MRSA type infection is likely to set in. That or C Diff. Oh dear and my heart goes out to your friend not feeling ready to manage the tube! It is SO scary!!!! We can all manage with help, teaching, support and knowing that there's someone on the end of the telephone when we get home. But really, no one can manage without that kind of support, especially at first. I'm praying. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Oh wow, that sounds awful! I was hoping that getting the G-tube would help him get back to his baseline. Shameful that he is not getting proper treatment. I hope your friend takes your advice to speak up...we've been in that situation and it did help to speak up....hard to do though!! Will continue prayers!!

    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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    ((((((Donna & Lisa))))))

    Thank you so much for your prayers. And for your understanding. We've all been where B's mom is right now, so we feel her anguish and fears. We have those sensory memories to attach us to her plight.

    If I could, I would be at that hospital, hand over hand, teaching B's mom to use the G Tube. She would be a pro by the time we finished! It is hard, very very hard to wrap your tired brain around something so foreign and so scary. She says she keeps forgetting what she was just told or shown. Jim told me to tell her, "You can't hurt him with the Gtube." But, until you start doing it, you don't believe that.

    It's getting late now, and she hasn't called me with the EKG results. I pray that they don't discharge B, because he is not ready and she is not ready. And he will end up right back in ER within days.

    If there is an issue with B's heart, then he will be transferred to the Cardiac Care Unit. I actually know the Chief of Cardiology, as he did a procedure on Jon, at bedside, in 2009, and then last year, he was on call in Step Down to do rounds. He remembered Jon and me. He spent a half an hour talking to me, so casually like we had known each other forever, and going over Jon's chart on the computer with me. He is a lovely man and a brilliant physician. We also have a widely recognized staff of cardiologists and heart surgeons.

    Our pulmonologists/intensivists are also top notch. That is why he would receive better, more thorough care in ICU/Step Down. Those doctors are really good detectives, because they have seen just about everything in their practice.

    As much as I don't want B to need intensive care, I feel strongly that he does. How sick does one have to be to warrant ICU care? Just looking at B's hospitalizations during the past month should answer that question for B. He is not recovering. He is getting worse. It's simply abnormal to be swimming in sweat constantly. Let's start there!

    And I'm just furious that B doesn't have a PICC line! Our hospital has great PICC line nurses, and most patients get PICC lines now. Why B doesn't have one stuns me. He is a prime candidate for a PICC line! And Jon's home health nurse, who is an IV specialist, also places PICC lines, and she said two weeks ago that B needs one!

    I can only try to imagine how exhausted B's mom is right now. Of course, I remember many times staying all night at the hospital with one of my boys, but for many years, I couldn't do that, because my other son was at home needing me. At least now, I do get to come home after 12 hours at the hospital and sleep in my own bed, while Jim takes the night shift with Jon. I couldn't function without that little bit of sleep and respite. So I worry a lot about B's mom.

    I can't thank you enough for your prayers. You're the best!

    May tomorrow bring positive news!

    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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    Oh Rose I feel so bad for your friend. Is there any family with her at all? I know I would have gone out of my mind without some family with us durring Kathleen's hospitalizations. I pray he gets the care he needs and things turn around for them. Why aren't the nurses helping her to become comfortable with the G-tube??? They should be at least helping her take baby steps towards that if she's not comfortable. I was scared to touch Kathleen's cecostomy tube for fear of hurting her and she was scared to let anyone touch it at first too but once we both realised it didn't hurt ( and it wouldn't just fall out) it got comfortable and easy. Also she will remember everything more if she's taking the steps herself. Thank you for all the updates. Wish I could offer more than prayers...
    Mary Grace

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    Dear Rose, Perhaps you could tell your friend that a G-tube is pretty much like any other body piercing. Try tugging on an earring and it doesn't hurt. Same with the tube. Even if it bleeds a little bit, it is just because the vessels are very close to the surface like a tiny drop of blood in your nose in the dry, winter weather. I always joke with Nick that his G-tube is the only body piercing I'm paying for - after that, he's on his own. It might make your friend smile anyway. They are in my prayers and I too am very worried about the sweating and HR - NOT normal!!! xo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Mary Grace & Donna))))))

    Thank you!

    Mary ~ B's mom has a younger son, about 35, who drives 1 1/2 hours after work every night to bring her food and visit with her and B. Her niece, who is a CNA, visits often too after she gets off of work. She has a couple of older family members, who don't drive, but they are in touch with her by phone, and they live close to her home, so they will be there to assist when B is discharged. Some family members visit on weekends.

    I think the nurses have tried to coax her to try working with the G Tube, but she is really terrified. I told B's mom today that he will not be released until she can demonstrate that she can use the G Tube.

    As a matter of fact, B's nurse told her that today. She said to B's mom, "He can't leave here until you are well-versed in the G Tube and the feeding pump. So we HAVE to do this today!" B's mom told the nurse that it was too early in the morning, and she was too tired and tense, asking to defer it until this afternoon.

    So, when B's mom and I spoke, I reiterated that there is nothing to fear, the tube doesn't hurt, you can't screw up, and if you spill something, then grab a towel.

    B's mom handed the phone to the nurse to speak to me today (at B's mom's request, not mine) to discuss the O2 that B is being given today.

    The nurse sounded young and was so sweet. We discussed the G Tube, and I told the nurse about my idea of B's mom practicing with the syringes and a glass of water, and the nurse loved that idea. She promised to implement it right away. I said to the nurse, "No more excuses from her! Make her do it! He'll never get out of there otherwise!"

    You are so right about Kathleen's cecostomy tube ~ fear of it falling out! I was afraid of Michael's tube just sliding out of his belly. Of course, now I realize it takes quite a tug at the right angle for it to be removed. I'm so glad that Kathleen has her tube and that it is working for her. It's all about enhancing quality of life.

    Donna ~ The only body piercing you're paying for ~ Good one!!!! Love it!!! Well, Jon has 3 piercings with his trache, G Tube, and colostomy (4 if we count the indwelling catheter). I hope that we've run out of places to pierce him!

    I did use your earring analogy on B's mom. I've pulled out all of my tricks, but none seem to be unfreezing her. Jim even called out to her over the phone, "If I can do it, you can do it!"

    If she tells me tomorrow that she hasn't worked with the Gtube yet, I'm going to say this to her: "Be prepared to take him back to the Acute Care Hospital." That ought to put a fire in her belly!

    Meanwhile, B's EKG was normal, and his heart is fine, Thank God.

    Seizures

    A neuro consult was ordered, and she's asked for another EEG on B. Good.

    I would bet my house that B is seizing and that is the source of his lowered SATS, elevated heart rate, and the copious sweating. Michael used to sweat fiercely, when he seized. Jon does, but not as significantly.

    B's mom is now in agreement. The issue is whether he needs more Keppra or if the increased Keppra has increased his seizures and created new types of seizures.

    Today, B wasn't sweating. He also wasn't demonstrating the "fidgeting" or any other manifestations of these seizures. I'm convinced this is a neurological issue. It's affecting his autonomic responses.

    Oxygen

    Initially, B's mom handed her phone to the nurse, so that I could discuss the reasons for B being on oxygen today. The nurse explained that B de-satted to 88, with a heart rate of 150, this morning, while he was seizing. A very good reason to give O2.

    Then I asked her how many liters he was on, and she said, two liters, because that is protocol. I told her that the RT's and pulmos in ICU taught us that O2 isn't necessary unless Sats drop below 90 and don't come up within a few minutes. And that we should start with the lowest number of liters to elevate the Sats. She agreed and said that she would give him another trial off of the O2, per B's mom's request, and if he needed to go back on, she would give him 1 liter. Too much O2 can be harmful.

    What is the word that describes being beyond exhausted? That's what B's mom is now. She is keeping her sense of humor, thankfully, but she hasn't had a proper amount of sleep for more than a month now. She can't retain information, and she's overwhelmed by it all. I truly get that. So, I'm filling in as a surrogate brain for her.

    I am hoping that B had an EEG today, and that a neuro visited and spoke with B's mom. That is his underlying condition, after all, and that should be the focus of his treatment.

    Thanks so much for your prayers and prayers. B's mom is very grateful, and so am I.

    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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    Thumbs up B Is Home!

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

    B is Home!

    Mom is using the G Tube!

    No more sweating!

    Seizures are lessening!

    B's home health nurse is our nurse! The best nurse in the world!

    Thank you all for your prayers, and let's all pray that B and his mom are home to stay now!

    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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    Ohhhhh thank God. Thanks so much for the update. Tonight prayers of thanksgiving. Wow, seems like a miracle. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    WOW, I'm so happy to hear that great news!! I hope B's mom is patting herself on the back for facing her fear and getting comfortable with the gtube! Not to mention getting through this very difficult time with her son. I hope she's catching up on some rest and taking care of herself. Your a great friend Rose for helping ehr through this.
    Mary Grace

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