On Saturday afternoon we noticed Kiana's hand was a bit swollen. She wasn't using the arm that had the PICC line and we thought perhaps that was causing the swelling. We encouraged her to use the arm but she said it hurt to much. When Dean tried to help her move it, he noticed her one hand was colder than the other. I called her Lyme doctor and he said it could be a blood clot and told us to take her to the ER. They did an ultrasound and the doctor soon came to her room saying she does indeed have a clot. Our small community hospital couldn't care for her and asked which hospital we would like to be transferred to. A kind friend had come to sit in the ER with us and was able to help me out with some of the decisions. There was talk of transfer by ambulance but my friend is an EMT, so they allowed her to take us. God knew just what we needed!
It was early Sunday morning till we were in our room and nearly 3:30 till we were allowed to rest a bit. Kiana was running a fever by that time and just wanted to sleep. When the nurse came to take her vitals a little after 5:00, Kiana and I were both fast asleep. Around 8:00 the doctor made her rounds and gave me a stern talking to concerning the fact that we made the decision to place a PICC line for something as controversial as Lyme. According to her, we had taken a dangerous risk and this is the price we have to pay. She recommended a developmental/psychiatric evaluation, which was what she felt we should have done in the first place, rather than treat for Lyme. They would consult with hematology and remove the line when it was safe to do so. Very little sleep and the emotional ups and downs of the night were playing a toll on me by then so I only nodded because I wasn't sure I could keep the tears back. I knew once they started, there would be no stopping them.
Later in the morning they showed me how to give the blood thinner injections Kiana will need. At that time they were saying she would need to stay several days as they seldom see blood clots in pediatric patients and weren't sure how long it would take for Kiana's levels to get where they belong.
I was so glad to see Dean come in the door. Making decisions about things when I am seriously sleep deprived is not my strong point. Friends had offered to stay with the other children so Dean could come to the hospital during the night but the thought of sending our traumatized children to a sitter wasn't a pretty picture.
They removed Kiana's PICC line later in the afternoon and showed me exactly how to give her injections once more and then she was discharged and we could go home!
Our evening was slightly chaotic, with many tears and melt downs. At 9:00 it was time to give Kiana the second injection. I looked at the directions on the syringe package and after many tears, we got the job done. As Dean was cleaning up, he asked me how much of the medication I had given, when I showed him, we saw the dosage on the package of syringes was twice the amount on the bottles of medication! I called her doctor and they said she should be fine, just skip the next dose. They told me what to watch for and what we should do if there was a problem. That was the last straw for me....I was done!
The ups and downs, trying to be strong and convince Kiana to go through with the various procedures plus all the brain power I had put into trying to figure out the logistics for daily IV treatment was just too much.
Dean stayed home this morning and left me get some much needed sleep. Now it is back to the computer to do more research because depending on the test results, Kiana may not be eligible for another PICC line. We were already seeing a bit of a difference after the few infusions she had, and while she and I both hated that PICC line, I was devastated to see it go.
Sitting in the ER, Kiana wasn't feeling bad at this point
It was early Sunday morning till we were in our room and nearly 3:30 till we were allowed to rest a bit. Kiana was running a fever by that time and just wanted to sleep. When the nurse came to take her vitals a little after 5:00, Kiana and I were both fast asleep. Around 8:00 the doctor made her rounds and gave me a stern talking to concerning the fact that we made the decision to place a PICC line for something as controversial as Lyme. According to her, we had taken a dangerous risk and this is the price we have to pay. She recommended a developmental/psychiatric evaluation, which was what she felt we should have done in the first place, rather than treat for Lyme. They would consult with hematology and remove the line when it was safe to do so. Very little sleep and the emotional ups and downs of the night were playing a toll on me by then so I only nodded because I wasn't sure I could keep the tears back. I knew once they started, there would be no stopping them.
Later in the morning they showed me how to give the blood thinner injections Kiana will need. At that time they were saying she would need to stay several days as they seldom see blood clots in pediatric patients and weren't sure how long it would take for Kiana's levels to get where they belong.
Fast asleep
I was so glad to see Dean come in the door. Making decisions about things when I am seriously sleep deprived is not my strong point. Friends had offered to stay with the other children so Dean could come to the hospital during the night but the thought of sending our traumatized children to a sitter wasn't a pretty picture.
They removed Kiana's PICC line later in the afternoon and showed me exactly how to give her injections once more and then she was discharged and we could go home!
Our evening was slightly chaotic, with many tears and melt downs. At 9:00 it was time to give Kiana the second injection. I looked at the directions on the syringe package and after many tears, we got the job done. As Dean was cleaning up, he asked me how much of the medication I had given, when I showed him, we saw the dosage on the package of syringes was twice the amount on the bottles of medication! I called her doctor and they said she should be fine, just skip the next dose. They told me what to watch for and what we should do if there was a problem. That was the last straw for me....I was done!
The ups and downs, trying to be strong and convince Kiana to go through with the various procedures plus all the brain power I had put into trying to figure out the logistics for daily IV treatment was just too much.
Dean stayed home this morning and left me get some much needed sleep. Now it is back to the computer to do more research because depending on the test results, Kiana may not be eligible for another PICC line. We were already seeing a bit of a difference after the few infusions she had, and while she and I both hated that PICC line, I was devastated to see it go.
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