frustrated with hospital experience...wdyt?

[julieinva]

Hello, this is my first time posting here. I just had a bad experience with my daughter's medical treatment and wanted to get some thoughts and find out how others would have handled it.

My daughter Lily is 4.5 months old. She had been feeling kind of warm for a couple of days, but I dismissed it thinking it was just from the hot weather. On about the third day of her feeling warm I decided to take her temp and it was 103. Had she been one of my older kids, this wouldn't have bothered me at all, but because of her age I thought I should call the Dr's office and see what they said.

Of course they said because she was so young I should bring her in to be checked. So I brought her in and she had no other symptoms except the fever. She was just starting to be mildly fussy, but not much. We did not see our primary Dr. but another one in the practice. The Dr. was concerned and decided to give her an antibiotic shot and have me bring her back in the next day for follow up.

The next day we came back in Lily's fever was down to 100.something but she was much fussier. She was actually in distress and crying hard. So the Dr. thought because of the fever and the amount of distress she was in she should be admitted and have some tests run. I was beginning to suspect that she might have Lyme because I had it about a month prior and Lily seemed like she felt the same way I felt. (Which was fever, chills, body aches for about 4.5 days) Dr. felt like that was a reasonable suggestion.

So we went to the hospital where we worked with a different Dr. (Dr on call). Baby had blood drawn and some x-rays. I told the Dr. that I suspected Lyme and had just recently had it myself. I told him I wanted the "good" test done and not the quickie. I didn't get the feeling he was taking me seriously.

Was told that if they found nothing they would do a spinal tap as a last resort. Then all of a sudden they were ready to do a spinal tap right then! I called our primary dr. and left a message saying I was not comfortable with that and I really wanted to talk to her.

Nurse came in and explained that the spinal tap was to check for menengitis. Well, okay then I guess that sounded reasonable so I consented. Dr (different one this time) comes in to do it. Was told by nurse he was the best around. He ends up sticking my baby at least 8 times with a needle trying to get it in the right place. Finally succeeds and begins to draw fluid of which he got very little and lots of blood.

So we spent 2 nights and 3 days in the hospital where they pumped her full of several different kinds of antibiotics. By the second day her temp was down to 99.something and the fussiness almost gone.

Dr. said spinal tap was inconclusive because there was too much blood mixed in. If it was so important to do the tap in the first place, wouldn't they want to do it again if the results were inconclusive? I am soooooo mad!!! I think they did it because it was protocol, not because they really felt like she had menegitis!

They lost the stool for the stool tests, then found it the next day!

So today I called to find out the final results of the stool tests and the Lyme since I didn't hear anything in the hospital. All negative the Dr. says. Then he said the Lyme result came in while I was still in the hospital and they forgot to tell me. How can that be?? They didn't draw the blood for the Lyme test until Sat. morning and we left Sun evening. It is a 48 hour test!!!! So this means that he ignored my request and sent it for the quickie, less reliable test! So mad again.

My only consolation in this whole thing is that if she did have Lyme as I suspected that all the antibiotics they pumped in her should have killed it. Although I don't even know if that is true.

So that's my story. Thanks for reading till the end. I would love to hear what you would have done. Was it really necessary to take my baby to the Dr. simply because she had a fever? Is better safe than sorry always the best course of action?

I may schedule a follow up with our primary Dr. (who is usually great and I really respect her advice) and tell her how I felt about Lily's treatment. She never returned my call. She was actually leaving for vacation the day we were admitted, so I assume she just forgot in the chaos of getting ready to go, so I am going to let her slide on that. Although I do wish she would schedule her vacations better around my crisises!

Julie

[poppan]

Just wanted to give you a hug mama. Hospitals are a hard place. My experience with the hospital was for myself (2 week stay after my water broke at 32weeks pregnant) and then 6 weeks in the NICU for DS. And I gotta say, they act like they know what they're doing and you're being a bad parent if you don't agree to it, and sometimes you aren't even allowed to make the decisions, literally. Like, I don't think I could have refused the antibiotics they pumped my babies full of for 5 days right after birth, I literally think they would have called CPS on me.

What would I do next time... other than knowing what they are going to want to do (hard to research ahead of time right), I think the only thing we can do is ask a lot of questions. Oh, you're recommending a spinal tap to see if she has meningitis... how many cases of meningitis are there a year in the US (i.e. statistically what are the chances of my child having meningitis)? What are the other options if I do not want to do the spinal tap? What happens if she does have meningitis? What symptoms does she have that cause you to suspect meningitis? Etc. Ask questions until you get a clear picture of every option you could possibly have, and the possible outcomes on each path and the probability of each. Then I'd probably still say I need to think about it first, unless it was an emergency situation. Even if it's just 20 minutes to step outside and call my husband--I would take that time to think it over. It's OK to be a PITA. I actually found some of the doctors and nurses respected me for it because I was one of a few apparently rare patients/parents who was so interested in my/my children's care. Of course others were completely exasperated with me.

[Kirsten]

My firstborn at 4 months - yep, I might have taken her in to be checked over for a fever of 103. My third - no. I mellowed a lot; I had more experience with little ones being sick; I trusted myself more and worried less.

If it was just a fever and baby was doing ok, I'd give infant Tylenol and watch her at home. If baby had 103 fever and seemed either listless or in distress, I'd take her in.

If you feel unable to stand up to medical employees, you should take your dp or a close friend or sibling with you. They can't MAKE you do anything. Take a few minutes to decide.

I agree that the whole thing didn't go well at all. But you took her in and agreed to further testing and procedures. You can't really be mad that they did them if you signed off on it. I can totally understand your anger at the situation though.

In the future, I'd certainly take her in if your mama instincts are telling you something is wrong. But I'd try hard to get your own doc, take someone with you, and feel free to decline what YOU think is unnecessary.

I'm sorry you and your baby went through that!!! She is doing ok now?

[mbravebird]

Learning in medical situations is so hard. In my experience, it's taken having some bad experiences to learn how to avoid them. It's not a fun learning curve. I have a son with a medical condition that used to land him in the hospital many, many times a year, and it is hard to get out of there with your boundaries intact. It's sort of like a runaway train.

There is a certain "presence" you can develop that helps them respect your boundaries. And there is a way of asking them questions without giving all the power to them. Sometimes just your attitude will allow them to respect your questions more. And sometimes it won't help at all, and you'll just have to say no to things in the face of them getting angry with you. As long as you stay calm, thoughtful, and respectful, you'll find your way through.

I would have questioned the first shot of antibiotics -- why is that indicated for a fever of unknown origin? Was her white blood cell count up or something? To me, that treatment seems like a doctor wanting to do something, but not knowing quite what to do.

And meningitis is usually accompanied by a very high fever that does not respond to fever reducers, as well as several other symptoms. I suspect that there was something in their protocol that suggested they do a spinal tap, and they were just following protocol rather than really responding to the details of your daughter's symptoms.

I probably wouldn't have allowed any antibiotics, even in the hospital, unless there was some diagnosis or indication for them. Experimental antibiotics are not kosher in my book.

One time when my son was in the hospital -- he had been hospitalized because he had a central IV line and a fever over 102.5, which means they have to check for a blood infection from the central line -- they found out that he actually had the flu. So they automatically ordered a chest x-ray to check for pneumonia. Now, if we had been at home, our doctor would certainly not have ordered an x-ray. He had no chest congestion or any other indications of pneumonia, and they were checking his chest several times a day, as well as monitoring his oxygen. He was having a very, very mild flu. When I asked why the X-ray was warranted, they said they just always do it, for every person who has the flu who is in the hospital. It is protocol. When I pointed out all the reasons it seemed not necessary in this case, they finally agreed and said they'd cancel it. Then, a couple of hours later, the x-ray tech showed up, and insisted she HAD to do the xray. She was very insistent, saying she had gotten no cancellation orders. I had to go find the new resident and re-confirm with him and the attending doc that there was no need for the xray. In each case, in each conversation, there was much resistance, simply because it was not what they usually did. It took a lot of energy and persistence to avoid that simple thing that everyone, in theory, agreed on. When people actually disagree, it's even harder.

But disagreements are OK. Keep that in mind, even when they're fear-mongering, and stay respectful, and, yes, try to stay out of the hospital at all costs. It is like a runaway train.

I'm so sorry you had to go through this, and I do think you should express your dissatisfaction to your primary doc if s/he is someone whose opinion and advice you trust. You did everything you were supposed to do; the situation you were in was just hard, and it sounds like the docs were really not hearing you or responding to you.

Can you give your sweetie some probiotics for the next month or so? That will help replenish her after the antibiotics. Now's the important time to do it, before any other bacteria take over.