Long Story...Happy Ending
Yesterday morning we were not allowed to come into our home hospitals ER. It was in a word...RIDICULOUS. I can't even really go into all of the details except that after having them treat Ash as a patient over the last 5 years to have a physician not give us the courtesy of getting on the phone to explain her reasoning but to have a message sent to us saying, " I would never treat a child under the age of 6 with TPA, tell them to schedule to have her line replaced Monday morning," was RIDICULOUS. There is no line replacement options left to us. THIS IS IT! Honestly, all she had to do was open her chart and she might have had a clue about the patient she was sending away. Anyway, we will attempt to meet with the hospital administration this week and have a protocol or some consistency in care worked out. As a parent it is very frustrating to never really know if they will or won't take care of your daughter. We just need an answer. Either you do use TPA (which we know they do and have on other occasions for us) or you don't. We just need to know where to take her next time.
But...the nurse on the phone relaying the messages told us to go to the other hospital in town. I'm sure the administration would love to know their patients are being sent out to their competition. Anyway, Dave got on the phone with the nurse manager of the other ER and they were absolutely WONDERFUL. Arranged a room to be ready upon the moment we entered the hospital with her. No sitting our waiting exposing her to the population in the waiting room. They took excellent care of her. Asking us exactly how it had been done in the past. They were more nervous than we ever were. I guess Dave and I are so used to it that it really isn't a big deal, but if your not accustomed I can see how unsure you might feel. By the end of the afternoon we did have some blood flow. Not perfect, but some. They shared with us their willingness to care for Ashley anytime and even told us they had gone so far as to write up an entire protocol and place it in her file so that if we called again anyone in the ER could open it up and do exactly what needs to be done to dissolve a clot in the line. Such a blessing.
We have many personal, privacy reasons surrounding the birth of Ashley Kate that have kept us from going to this hospital, but we have to have a care team locally that will help us when we need their help. Yesterday, this team was more than willing where the on duty physician at our hospital was not. That has to count for something.
The thing is that we are residents of Longview, TX. We live here not in Shreveport and not in Omaha. Dave and are not foolish. We know the issues that can be treated here locally and we know the ones that can't. Treating clots at the end of her central line...can. Removing and replacing her central line...can't. Ash has to grow up here. We need professionals around us that are willing to help us raise our daughter for the life span that God blesses her with. There will be lots of plans to do just that being made this week. Something like yesterday just can't be allowed to happen again. Its too dangerous and too irresponsible. We as her parents have to find a team to surround her with that can and will help.
Thank you for your prayers. Yesterday was long, but ended somewhat happy for now. We know more clots will form. Its the nature of living with central lines. Maybe next time we will be able to go straight to get help instead of wasting 3 hours on the phone lines.
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