((((((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,