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Thread: To ER and Back

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Exclamation To ER and Back

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


    Lots of excitement yesterday.

    At 3:00 p.m., Jon's nurse, and another nurse, who she is training for the agency, arrived to take blood for a complete work up, as well as seizure med levels. Jon still had his PICC line, so it was an easy draw.

    Jon was asleep, and he didn't even know we were in the room. He had slept quite a bit during the night/morning, woke up for an hour, then went back to sleep.

    About 6:00 p.m., Jon's nurse called and left a message. Then the on call doc from Jon's doc's practice called and left a message. I was busy with Jon, who was just waking up. When I noticed their messages about 6:30, I called them back.

    Jon's nurse said that Jon's hemoglobin was 7.6, which is too low. He had a transfusion while in the hospital last week, when his hemoglobin dropped to that level. The day he was released, his hemoglobin was 10.9. So in one week, he dropped drastically.

    I called the on call doc, and he advised me to take Jon to the ER, where he would likely receive a blood transfusion. He told me not to delay too long. I told the doc that Jon had been sleeping and lethargic and that he was pale. I asked him what could possibly be causing this drop, and he suggested that it was the Zosyn. Apparently, Zosyn has a tendency to cause a reduction in red blood cells.

    No one in the hospital ever told me this about Zosyn. I'm a tad bit perturbed. It's something that I should have known, so I could look out for symptoms of anemia, which Jon already has, thanks to Depakote.

    After the phone calls, I felt a bit frantic by the doc's attitude of urgency. That familiar state of stress washed over me, and I ran upstairs to wake Jim. Startled, Jim leapt out of bed and straight into the shower, while I gathered the usual stuff to take with us, called the ambulance, and readied Jon.

    The ER was jam packed, unfortunately, and we had to wait for a bed. Poor Jon laying on that narrow, hard gurney, his knees and feet padded by towels from home. The ER bed isn't a giant step up from that, but at least it is a mattress.

    We were lucky to be put in an end room, where it was a bit quieter and much roomier. The room also has a TV, which keeps Jon entertained.

    A very young ER doc eagerly ordered more blood work. I observed that Jon had just had blood taken 4 hours earlier, but he insisted that he wanted to check his blood again.

    Later, he decided to give Jon a chest x-ray, because Jon sounded congested to him. I pointed to the monitor, where Jon was holding SATS of 100. The doc said he wanted to check for blood in the lungs. He doesn't understand how uncomfortable it is for Jon to have a chest x-ray.

    He wanted to give Jon an enema to test his feces for occult blood. I told him that Jon has a colostomy, then showed it to him. Jon hadn't had a BM since I'd changed his bag earlier in the morning.

    He was zealous in his search to find the bleeding, which caused the low hemoglobin. I kept telling him that the on call doc said it was the Zosyn.

    Then the doc was hemming and hawing about giving a transfusion, whether to start it in the ER, then send Jon to a floor and admitting him. He wasn't sure that he wanted to give blood, until he determined the cause of the low hemoglobin.

    I begged him to send us to Step Down, and I had to give him the hundred reasons why Jon needed to go there. He needs the 2 to 1 care, the close observation due to seizures and inability to communicate his needs, the trache, the ICU beds (yes, they aren't great, but they are better than the beds on the other floors, which don't have air circulation features), everyone knows us on that unit, blah, blah, blah. It infuriated me that I had to beg for this and justify it. I told the doc to call the SD nurse coordinator, who knows Jon, and will gladly take him in, if they have an available bed.

    Later, I was told that SD had two beds, and we could choose the room. Last week's room, 18, was occupied, but 19 was open, so I chose that room. I knew that they would come through for Jon in SD! All of that begging for nothing!

    The doc finally returned to say that Jon's hemoglobin was 7.9, and that he wasn't going to give Jon a transfusion. However, he wanted to admit Jon for more tests and observation. He needed a doc to admit Jon, and he chose a hospitalist, who I didn't know.

    About midnight, the hospitalist arrived to check out Jon. She's also fairly young, very straight forward and on the ball. She said she had been reading Jon's history, and she knew that he has chronic anemia. She stated, "It's the Zosyn. It's a common side effect of Zosyn to cause a drop in hemoglobin. He's not bleeding anywhere inside, so we don't need further tests. His lungs are clear, no fluid. And he doesn't need a transfusion."

    She looked at the monitor, and declared, "Look at his vitals! They are rock solid! It would be different if he was gasping for air or if he had heart problems. I trust you two to know if he gets into trouble to bring him back here. But I suspect he needs some time off of the Zosyn to get his hemoglobin back up. Do you want to take him home?"

    We jumped up and gleefully shouted, "YES!"

    Jon was obviously pleased with this news too! He was looking mighty glum about being in the hospital again.

    Jim left to get Jon's bed made and ready for his return, while Jon and I waited for discharge and the ambulance. We arrived home about 1:15 this morning.

    We gave Jon a wash down to remove hospital germs, took all of his vitals, and got him comfy in his bed. He was grinning, so glad to be home.

    I emailed Jon's doc and his nurse to let them know what had transpired. At 3:30 this morning, I finally got to bed.

    Jon's doc responded this morning that he doesn't think Jon needs a follow up blood draw for a few weeks, allowing Jon's body time to "recalibrate."

    So, when Jon's nurse showed up today, she removed the PICC line, and now Jon has his arm free, and we don't have to worry about the PICC line becoming infected.

    Jon's quite droopy, but he has stayed awake all day after 7 hours of sound sleep. His temp was a little low, but it has returned to normal this evening. His BP and SATS are excellent.

    He missed a lot of food/formula yesterday. I had to ask the ER nurse to give Jon a saline drip, while we were there, so Jon wouldn't become dehydrated. I'm glad that I thought of that, because neither the eager doc nor the nurse did. Today, we are trying to play catch up on food and water.

    This is all somewhat confusing to me, since every ICU doc would have (and have) transfused Jon with that hemoglobin level. In fact, they did so last week. They must have realized that the Zosyn was the likely culprit, but said nothing to me about it. I'm beginning to realize now that every time that Jon has been hospitalized, his antibiotics were probably causing the hemoglobin decrease leading to blood transfusions.

    A lot of commotion for naught. Or ... maybe not ... the eager ER doc ruled out any untoward, life-threatening causes, and I learned something about antibiotics and hemoglobin. And, if I'd known that before, we wouldn't have rushed off to the ER.

    Now we pray for Jon to make lots of red blood cells ~ and fast! But Jon's nurses today said that it would take a while, even a couple of weeks, for Jon to "recalibrate." During that time, we hope to see increased perkiness in Jon.

    Thank you all so much for your prayers, love and support!


    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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.

  2. #2
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    Wow what a day you all had! ER trips are awful. I'm so glad that you all got to go home and things have calmed down.Praying that everything levels off and you have a "perkier Jon" back soon. You guys really need a break here and some much needed rest I'm sure. Keep us posted. Good thinking with the IV drip. I remember when Kathleen was first diagnosed with moyamoya, one very dagerous thing (and still is) is to become dehydrated. So I've been there pleading with Er staff to at least start an IV so she doesn't get hydrated. It would take hours just to get that done.
    Mary Grace

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    July 1st is when all the new residents start in the teaching hospitals. I always to try to avoid the ER or any hospital stays in July because of that!!!

    I'm happy to hear that you were listened to and Jon got to come home.

    Sending prayers up for all of you!!

    Marcie

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    What a day you had. Glad he got to go back home so quickly. Praying for Jon to make lots of red blood cells.

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  8. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Thank You!))))))

    Mary Grace ~ Yes, ER trips are awful. Too many sick people in a confined area! I'd much rather we were in a room on a floor, with a door we can close. Isn't it ridiculous that we have to ask for an IV saline drip? That used to be automatic. And Jon had a PICC line, so they didn't even have to insert an IV. But it's something that the nurse and doc should think about, especially when the duration in ER is longer than 2 hours.

    Oh and there was this: The ER nurse accidentally knocked the yaunkauer suction catheter on the floor. She picked it up off of the floor, put it back in the plastic packaging, and walked out of the room. Jim and I just looked at each other aghast! Jim picked up that yaunkauer and threw it in the trash, looked at me, shook his head and said, "Unbelievable!" INDEED!!!

    Marcie ~ Our hospital isn't a teaching hospital. It is a private hospital, getting larger by the year to accommodate the overflow of patients due to hospital closures in our area. So, we don't have residents or interns. Just very young doctors beginning their practice!

    Bless his heart, this doc was really being the investigator, but the obvious clues didn't satisfy him. He was racing around the ER from one patient to another, probably thinking that he could save every single patient, who came through those automatic doors. I was just too tired to entertain him, and at one point, he said to me, "I don't want to argue with you." Oops! I wasn't arguing. I was informing him about Jon, who he had never seen before that night. A little respect for this old mama would have gone a long way at that moment.

    funnylegs4 ~ Thanks for the red blood cells prayers! His color is better today, but he is still quite fatigued. I have to keep reminding myself that this will take time.

    We are deeply grateful for your prayers. Know that they are returned for you.

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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 Barque's Avatar
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    Raw spinach in the blender with a bit of wheat germ and honey makes a delicious iron rich drink. IF he can tolerate it. I do that when I get anemic, everyday and within a short time I feel much better. I hope this might help.

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  11. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Barque))))))

    Thank you for your suggestion!

    It is difficult to know what Jon will tolerate now. We also encountered difficulties with blending real foods to put through Jon's Gtube, because I couldn't get all of the air out of his blends, which created gas and distention. I wish with all of my heart that I could feed Jon real food instead of his formula. I'm sure he would feel much better, as real food would eliminate the soy, sugar, and corn in his formula, which aggravates his thyroid, and real food could supplement his iron.

    Thank you again for your suggestion. I will ponder it.

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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 gosh, I just got home from the country where we don't have internet and am seeing this for the first time. Geesh, what a scare!!!!!! But I am so glad that at least you got home quickly and had a good hospitalist who was smart and knew enough to listen to you and work collaboratively. Oh, those young docs eh? Glad you all are home my friend and I hope that Jon continues to improve and gives you no more scares! xoDonna
    Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
    Check out my blog: http://www.donnathomson.com


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  14. #9
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    Thank you for your good thoughts!

    Jon has had a very good day today with excellent vitals, more aware and alert and strong of voice. So prayers are working once again as he regains his strength.

    The scariest part for me is the difference between the ICU docs and the ER doc and hospitalist with regard to when to transfuse blood. Why is there a discrepancy there? I want to know that, and eventually, I will.

    My guess is that now that Jon is off of antibiotics, he will recover those red blood cells on his own, whereas, while in ICU and receiving the antibiotics, he would continue to lose red blood cells. But that is just a guess.

    Perhaps I should have attended medical school in my spare time.

    What is of greatest importance right now is that Jon is doing well and rebounding in his typical amazing way. He isn't finished yet. He has more to do. More lessons to teach, more hearts to touch.

    For this blessing, I give unending thanks.

    Hope you enjoyed your respite in the country, dear friend.

    Love & Light,

    Rose
    Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; 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.

  15. #10
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    Rose That's good news. So glad he continues to get better. Prayers that Jon continues to get better everyday what a fighter he is! He's so lucky to have you by his side. Forget going to medical school you could probably teach a class or two. My husband keeps telling me to go to nursing school but wow that's a responsibility I could never take on. Hope to hear more good reports!
    Mary Grace

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