Saturday, September 27, 2008

Out of this world...

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 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 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 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. ;)


Marissa said...

Jen & Brian:

I am at a loss for words. I wish I could say or do something to make this all better. Please know that I am praying SO hard for all of you. Please don't hesitate to write or call and let me know if I can do something to help... an ear to bend or shoulder to cry on.



Tina said...

Oh Jen I'm so sorry.As if things weren't stressful enough when Faith is sick, then you have to go through the whole ordeal with Kaiser. Why can't things be easier? Well thank you for coming today even though your last few days have been overwhelming. Please don't feel bad for venting, when you deal with so much on a daily basis (not to mention with no sleep) you have to be able to vent to keep going. I think you and Brian are amazing parents and I pray that God does have some sleep for all three of you soon. I miss you already,
Love you guys,

Ann said...

Jen - what an absolutely insane day. I hope you are rewarded with a decent night's sleep.


Karen said...

Hi Jen,
I don't even know how to comment on this one except that I hope you never start to filter your blogs - you tell it like it is and I love that. When I got to the g-tube part at the end of the entry, I actually said out loud, "Oh my gosh!" Icing on the cake, for sure.

Not that it does you any good now, but do you have (or have the ability to get) your own suction culture traps from the DME? We have a bunch and I'd be happy to send you some to keep for those lovely moments like you had at Kaiser. (Not that I would ever wish a repeat experience for you guys!) What is Faith's status as of late? Does she have a fever? Just curious, is she on Tobi nebs? If she isn't, and you want to know more about that, ask me - I think they are good for keeping Quinn a little healthier from a respiratory standpoint. Enough of that, take good care. Please let me know if there any supplies you guys are having trouble getting - that is actually one area we are pretty lucky with. Take care and good luck this week.

Faith said...

Karen: I'm glad we can all find humor is these types of situations. I know we did! I think that's how we cope with all of this!

Faith is doing "better." She slept better last night than she has in the last 2 weeks (thanks to everyone's well wishes!!) No, she does not have a fever. However she never has fevers. Only once in her life has she had one. Which makes it difficult when we do call the docs. She just has a lot of yellow tinged secretions. We also noticed a new smell this morning from her trach. We usually can diagnose her based on the smell but this one has got us!! The Tobi neb is a great idea. Does it helpt with secrections? Faith isn't on any nebs right now- she just gets albuterol PRN. She is not working or retracting- if she were we'd be asking for some nebs. We have an already scheduled pulm. appointment tomorrow so we'll see what they say.

Thanks for the offer for the traps. I had never thought of asking our DME for some. Great idea! I am going to ask them this week and if they can't get some to us. If they can't I might take you up on your offer. I know it's going to be a looooong winter and I am not a big fan of driving across town just for a culture, especially when the bad weather starts.

How's Quinn? One of these days you need to start a blog so we can all keep up on you! I know it’s time consuming….. so you can just keep us in the loop via comments for now.

Thanks for checking in,

Marissa, Tina & Ann: Thanks for the good sleep vibes! I think it worked! :)

Faith said...

LOL- Alicia I didn't mean to call you Marissa! Boy maybe I didn't get enough sleep last night!!

Marissa said...

That's o.k., I forgive you Faith. I mean Jen :)

Oops! LOL


Karen said...

Hi Jen,
We started continuous nebs (healthy or sick) when Quinn was 18months after a lot of sickness and hospitalizations. He is now on Xopenex, Pulmicort, and Tobi (the Tobi is every other month). He gets them every morning and every night and then also during the day if he is thinking about getting sick. We are having his school nurse do one every day at school just as an extra safety measure to keep him loose with all the new germs he is exposed to at school. I do think they help him stay healthier. The Xopenex is the same as Albuterol but without the "hyperactivity" agent (supposedly). It loosens things up so that generates secretions but our philosophy is better out than in if something is brewing. The pulmicort is a steroid and the Tobi is an inhaled antibiotic. Tobi is really expensive so it might be a problem from insurance but who knows. I wonder if having Faith on nebs during the winter month might be something to consider? Just thought I'd mention it since you said you were going to the pulm. tomorrow. As far as secretions, I'm not sure about that one. I have read other trach moms talk about how secretions slow down as kids get older - not the case for us - it is just different as he gets older. He coughs them out a lot better than he used to - requiring less suctioning and more frequent shirt changes - go figure. Let us know how tomorrow goes! Take care of you, my friend.

Hope said...

I know I will never fully grasp what you all go through on a daily basis, but I think of you often and pray for you daily. I hope it gets easier for all the trach families.

Hope and Ava

Paula said...

Some times I'm embarrassed to be an RN. Thank God there are moms and dads out there who are so smart and confident and whose brains, hands and hearts are guided by God to keep these precious ones alive and loved. I too can never imagine how complicated your lives are... Stay strong!

Dana said...

Wow, Jenn What a day! How stressed life gets when our kids are sick. I was toatlly laughing at the idiots in the Kaiser office. That's really scary. I guess if you ever needed a nursing degree you'd be qualified right? I am so sorry you had to go through all this. I hope Faith gets better soon. You are so lucky to have a PULM. doctor that will call anything in for you. They ALWAYS tell us we need to go the ER. We also couldn't be seen on any kind of emergency basis unless we go to the ER. Our regular 3 month appointment is the only way they will see us. I can't even talk to my doctor on the phone.

Ann said...

Jen - Jack is on maintenance Pulmicort. I'm surprised with Faith being a BPDer that she is not on any maintenance meds. I've been giving a lot of Xopenex and Atrovent this last week (and, of course, the Benedryl)to keep on top of things. Jack has been on TOBI as well, but we can tell when he is growing Psuedomonas (which TOBI treats) because there is this lovely green slime in the vent circuits.

I also keep suction culture traps on hand and just drop them off at the lab after Jack's doctor faxes in the order. Ask Apria for some - they supply mine without giving me any grief.

I'm glad to hear you got some sleep.


Karen said...

How did yesterday's appointment go? Please let us know when you have a minute!

Rachel Marini said...

Hey Jen,
Wow. Did you happen to read Ann's post about chronic stress? Yikes! These are the kinds of situations trach/vent moms have to go through that just make you want to pull your hair out. What a great metaphor that it's like being 'from out of this world.' It is so difficult to be the parent of a medically fragile child but you are doing a great job and although Faith can't thank you, you must know what awesome care you are taking of her. You can care for her like no one else can..... even doctors, nurses, paramedics, etc. Keep persevering ... it helps to know that there are other moms going through the same struggles even though truly it is so isolating and we all feel like aliens :)
Hope you have a better week
Love, Rachel