Thursday, February 3, 2011

Why, why, why...

First off let me say I hope everyone out there is stay safe and warm. It is hard when bad weather hits and you have sick babies. Also, thank you for your continued prayers for Annabel.

WHY do we feel bad when we speak up for our babies and cause other to be angry with us? This was my experience today. I hate sometimes who I become when I feel I have to do this for Annabel. I do admit that sometimes I am wrong, as I was earlier this week with one of Annabel's school therapist. I did have to admit I was sorry, even though embarrassing, but once it was done I felt better. None of us are right all the time. Actually probably most of the time I am not right.
But today the hospital called and told us that Annabel's urine grew three different bacterias. We always grow one and we treat if needed. I realize there are two schools of thought on UTI's and the over use of antibiotics. If you are someone who has these experiences please comment and tell me how you handle the infections and the possible over use of the antibiotics.
We have two different thoughts here, and locally our sweet pediatrician, Dr. B gets the results and depending on the numbers, bacteria, or whatever she sometimes prescribes the antibiotic. She is very aware of the overgrowth situation but she is listening and seeing Annabel and knows she needs some relief. All the while keeping in mind the central line issues. On the other hand our urologist in Houston basically wants us to ignore the UTI's until almost septic. There is such a fine line with Annabel. There isn't much warning when we are crossing that line. It is a little more critical now that we have the central line. Before we had more time to play around but not as of late. Let me also say I understand the urologist thinking about over treating with antibiotics and the overgrowth. He doesn't see Annabel that often unless well for checkups due to the 2 hour drive which isn't fun when ill.

So as I said the hospital called today to give the results. Her bacterias are enterococcus faecium, enterobacter cloacae and serratia marcescens. Tuesday Dr. B prescribed Supprax until the culture returned and showed sensitivities. After the hospital called and gave me the results since these were done in the ER, I waited a couple hours and phoned my pediatrician office. I love their office and everyone involved. But after a call there and speaking with someone that I had to be more than aggresive with, which left me feeling so bad. I hung up very rudely after being told everyone else was waiting on their results also. I was told they have 48 hours after receiving the results to call the patients and give results. The hard part was that I already knew the results and looking at Annabel knew that the antibiotic she was on wasn't doing what it should fast enough. She wasn't worse she just was very tired and still having her painful spells.
Soon after this another nurse who we are use to dealing with called back and the doctor had looked at it and was calling in another antibiotic to go along with the first one due to the bacterias.
She said that he was calling in furodantin and because I had already had an issue with the other nurse I didn't feel I could share that this antibiotic make her very sick. She has been on this in the past but basically in the last year I just say we are "allergic" to it. She vomits and can become so sick from it. No, I don't know if she is truly allergic or not but it is the only one she cannot take and becomes so much sicker just trying to finish the 10days of it. Well this afternoon after starting it (within 30 minutes) the nurse brought her to me and said she was becoming very pale and not doing well. She wasn't really wanting to play, laugh, but only lay on my chest. Within about 15 minutes she was vomiting and doing poorly. The nurse said that we can't give this to her since it makes her so sick that quickly. Each time we do give the antibiotic it takes less and less days for her to become sick. I have decided from now on for Annabel's sake I WILL say she is ALLERGIC to furodantin.
Of course, I will call tomorrow and speak with Dr. B's nurse and explain that she can't take the antibiotic and she will understand. What I am most upset about is that I questioned myself because someone else didn't understand Annabel and her case. I have to remember that I know her better than anyone else, that she doesn't have a voice. I felt I let her down tonight because I let someone else make me doubt myself. I know other feel this way, so I am not the only one. Wow, what a long rambling post all to say "How do you treat your childs infections? Do you use the antibiotic or do you withhold them?

We should hear tomorrow about the blood cultures from the central line. I truly don't believe she is looking sick enough to have it in her line.


Michelle and Sean said...

Hi Cathy, Just thought I would leave a comment.

Maggie doesn't have problems with UTI's but she does have something similar with bacteria in her lungs. So we also have to weigh the risks of treating with antibiotics or letting a certain bacteria try to ride itself out and possibly turning into pneumonia. I wish I could tell you the best way to handle that. We don't know what to do for Maggie either. Its so frustrating because it also sounds like Annabel and Maggie are similar in that they can get sick very quickly without much warning signs. This is one reason we chose not to put another central line in Maggie for now. She would be septic with no symptoms until BAM she was dying. Each sepsis would get quicker and quicker.

Oh and about the no urine thing. Maggie doesn't take any meds for secretions. Only an antibiotic if she gets a lung infection. But unfortunately her kidneys have been declining for a little while now we just can't figure out why. Well I guess we know why, its part of this disease. Anyway I want to say thank you for thinking about Maggie and for your help. Sometimes its nice to be able to talk about things with people who actually know some of what one another are going through.

I will pray you will find the right answers for Annabel. And its true mothers do know best and I can totally relate to this post!

Anonymous said...

I am so sorry that the nurse made you doubt yourself and feel so bad. I have been known to let others do that to me, too, but I have been on the wrong end a time or two also, believing I knew what was going on and I was not right.

Morgan does not get infections like you are experiencing with Annabel. He has had an ongoing mycobacterium infection in his g-tube site (you have probably read about it on his website. We did it treat it a couple of years ago and ended up in the hospital with c-diff infection because he had to be on the antibiotics for such a long time. This past year he got the same infection again. This time we saw an infectious disease dr. & the surgeon who did the g-tube, both agreed not to treat with antibiotic, just topical treatments. Again, this is a different kind of infection and does not cause Morgan any pain or other issues.

Morgan does get very ill very quickly, like Annabel. He can go to bed seemingly fine and wake up so sick he ends up hospitalized. I know this doesn't really help much. I have been reading and keeping up with Annabel, just don't have much to offer by way of help. I think of you guys often and you all are in my thoughts and prayers.

Holly McCormick

Kathy said...

You are and always will be Annabel's best advocate.

Praying for wisdom and peace.

Love you girls!!!

connie said...

Makes me sad reading this, because I know there were times when I caved in to pressure to try something we already knew Mal couldn't tolerate, just to be "agreeable" and waited to see if the same bad results happened, ... and they always did. And then I wondered why I had been such a wimp or cared what other people thought. But don't beat yourself up ... there is just no way to know what is right each time. Sometimes the things I was SURE were wrong (tylenol to treat pre-seizuring activities instead of ativan, or getting a fundo) were actually the right thing for her. So you actually do sometimes have to try something someone suggests and see (EVEN if you know it never worked before) ... So that means sometimes we get a result we wish we had avoided and we think it's our fault for considering it. Instead, try to see it as more of an experiment, and now everyone involved, your home nurses included, will agree that she can't take that med. No way the other pedi could have known this ... no way they can know everything you remember because sometimes it's like you live-breathe-sleep Annabel's care ... but each time you have a situation like this, trash the guilt and say OK we learned for sure. And in our house we'll pray you have the courage & strength to stand up when you're pretty sure something never works.

.... to accept the things I cannot change .... having to deal with a huge variety of medical people, not all of whom will adore you the way Dr. B and her sweet nurse Beth do ... that you cannot change. What you can change now is just asking for Beth or someone like that to call you back if you have more "questions." :) Before you end up on the edge of the cliff with me, right?

If I could go back through the past few years with you, I could start a long list of really neat things you have tried with Annabel, times when you have reached out to other parents, times you have done more than once a week trips a couple of hours away for therapies, things you have bought hoping they'd work (remember Fruit-eze?), so many things I remember that would tell anyone else who heard my stories that God chose really, really carefully when He wanted someone to be Annabel's mom. Who else would be so crazy? Hannah just said the fact that you are worrying over this just shows your love. The things you cannot know, or cannot change? Let those ones go.

Your turn. Now you gotta tell me the same things. :)

Anonymous said...

I am horribly allergic to the family of drugs furodantin(macrodantin, macrobid). I started out the way you are describing the symptoms with Annabel. Nausea and vomitting and then, as I continued to get UTI's, I developed hives. The last time I ever took any of these drugs I almost died. I took a dose and within about 20 minutes I vomitting and passed out. Then, my throat closed on me. I am concerned that you say that Annabel is you think it may be the drugs?