This week we've gotten a lot of questions on whether or not we have taken Faith to see the doctor. The answer has been a "no" because well...once again it's complicated.
Faith is seen 100% at The Children's Hospital. Our primary insurance is Kaiser, which is an HMO. When Faith came home from the hospital we had to fight to get Kaiser to refer us to Children's. On our end we usually have to make calls to Kaiser to get referrals in order to go to Children's. It just so happens that this week the referral expired and I have been on the phone many, many times during the week trying to get it renewed.
The other complicated part is that Children's is a very busy place and Faith's doctors only have clinic appointments on certain days. If we wanted to get her to be seen on a none clinic day (or a day when they are full which is pretty much everyday) we have to go through the Emergency Room. We would do this if Faith was really sick, but we have not felt like this has been necessary this time around.
After another difficult night on on Thursday we decided that it's time to call. Fortunately the pulmonary doctor on call at Children's said he'd call in a prescription over the phone (Pulmonary docs are the best at doing that)! This was a huge relief. Getting scripts filled through Kaiser is always a headache (which it was...but I don't have the energy to go into why it was...) so we were dealing with that all day on Friday. The doctor did want Faith to get a tracheal aspirate to see what kind of junk she is growing. He suggested that instead of going into Children's for the 10 second procedure, we go to the lab at Kaiser. This sounded like a great idea because:
1.) Driving to children during rush hour can take one hour each way. Although I did drive with Faith by myself last week I would not drive with her alone on the highway...especially when she has lots of secretions. If she disconnected from the vent or need to be suctioned it may be difficult to pull over on the highway.
2.) We knew that since the referral had expired the lab wouldn't take faith anyway (we've had to wait 3 hours before to get approval for an x-ray!) I know my trach friends are thinking this is nuts, especially since we have Medicaid as a secondary, but they won't process anything until we've gotten a denial from Kaiser (ridiculous I know).
Ok on with the story...so we planned to drop by Kaiser, get the script filled, get a culture and be on our way. We even decided to make a fun night out of it and go out to eat with Faith (something we rarely ever do).
So we get to Kaiser and of course there is drama with getting the script filled. So while Brian dealt with that I took Faith to the lab. Before we got there we knew that they wouldn't know what to do with her. That was OK with us. As long as they'd let us get the aspirate ourselves we would be OK. So we roll up and I hear them whispering to each other..."oh it's that baby....no one called them?" I cleared my throat and they greeted us. They admitted they didn't know how to get the culture and I told them I would do it, I just needed a suction catheter with a specimen vile. We had our own suction, all I needed was the catheter. They looked at me like I was nuts, and came back with a cup for urine. OK...this was not going to work. I drew a picture of what I need and further explained why I couldn't suction into a cup. They came back with a bulb syringe. That's when I knew I was on my own on this one. I had several Macqyver-esq attempts at making my own catheter. I thought about emptying the canister, suction and dump the contents into the urine cup. Even with saline I knew I wouldn't get enough. A few months ago a situation like this would have given me an anxiety attack. This time I just didn't care. After speaking with a few more nurses (and even doctors) I gave up. At this point all we needed was the antibiotic.
We ended up waiting another hour for the antibiotic. Apparently they were waiting for "approval" (whatever that means).
As you can imagine we get lots of looks when we are out with Faith. This usually does not bother us. I love it when people come up to Faith and acknowledge her or ask questions (which usually doesn't happen...we just get stares..) but like I said it doesn't usually phase us. On this occasion the stares did bother me. We were in a place where we didn't belong. We were in a health care facility that couldn't help us. Lab. techs, nurses and doctors didn't know how to get a simple culture from our daughter. I felt like she was an alien and we were far from our own planet. We felt helpless.
This wasn't the first time I've felt like this. I will never forget the two times we called 911 when the paramedics showed up and on both occasions and told us that we knew more than they did. While I taught the paramedic how to suction in the ambulance I remember feeling so alone...so isolated. Is our child so complex that we are the only people who know how to take care of her?
2 1/2 hours later we left Kaiser. As we were driving to the restaurant ("Sooper Salad" hardly a restaurant but for three people who do not get out much it was a treat...) I got a phone call. It was Apria. They were waiting outside our door with the ventilator we had been requesting all week. Faith's secondary vent had been malfunctioning (which is a whole 'nother post) and needed to be replaced. No one ever told us they were coming. 99% of the week someone is home with Faith. Of course the night we spend three hours at a clinic and make plans to go out as a family they come.
Every time we go out I am reminded of why we don't go out.
We got home to find one more person (a respiratory therapist) who does not know the first thing about ventilators. Not a problem. We can set everything up. This all came a few hours after my "sometimes" post. I guess sometimes everything falls on us.
The propose of this post is not to complain or "go off'" on people or the medical system. If I wrote about everything that happens to us on a daily basis with this type of stuff I'm sure we'd lose every single blog reader we have. I wanted to write about this so that you might get a tiny glimpse of what families like ours go through just to keep out children alive.
As we drove away Brian said, "You are blogging right now aren't you? (implying that I am doing it in my head). I told him.."Honey, I've been blogging since we left Earth."
If you made it this far, thank you for listening to my rant. Sometimes it helps just to get things off your chest. :)
Brian and Jen
PS: To my fellow trachesto-mommies: You are probably saying to yourselves...Jen why didn't you have a Delee? On this occasion I didn't bring the usual trach bag filled to the nines because I thought it would just be a quick trip (I'm such a novice, I know). We do have a delee in that bag, but of course the one time I need it we don't have it! Such is life.
Ok and I just have to add this- as I was finishing up this post I happen to look up from the screen only to see Faith and her g-button (feeding tube) laying on the floor five feet away from each other. When it didn't go in right away and we thought it had closed. Oh no, here we go again- time to go to Children's....well maybe we'll finally get that aspirate! Fortunately it did go in. Maybe sleep is in the Lord's plans. ;)