This week was supposed to be very low key, we didn't have any plans, just taking it easy so Journey could heal. She had other plans. If blood and stitches make you squeamish, you may not want to read this.
I mentioned in the last post that the doctor said the surgery went so well that she didn't need hand casts, just soft bandages. Her hands were padded all around with cotton, then wrapped in ace bandages. There wasn't any wrapping on the tips of her hands, so the nurse told us to 'try to keep her from eating the cotton'. We put socks over the bandages so she couldn't nibble at them, and all was good. For a few hours. While playing that evening, her bandage on her right hand (I'm guessing because she is right handed) started coming loose. We rewrapped it but it was coming loose again, and she was in pain as the bandage was moved around. I called the number on the after care sheet we were given at the hospital. Little did I know this would be the first of many phone calls this week in which I would feel like I was talking to a brick wall. The conversation went something like this:
Me: Hi, my daughter had surgery today on her hands, and one of her bandages keeps coming off and causing her pain.
Resident on call: Well, you definitely want to try to keep her from getting them off.
Me: Yeah...but she's 18 months old. We were supposed to have hard casts and I'm starting to think that would have been a better idea.
Resident on call: Hm, well...maybe you can come up with some kind of contraption, maybe with a towel or something, that will keep her arms at her sides.
Resident on call: Yeah, she probably wouldn't like that would she?
Me: No...we did have socks over the bandages, but that didn't help.
Resident on call: Wow, socks are actually a really good idea!
Me: .....but they didn't help...
Doy! Anyway, he ended up saying to try to keep them on her for the night and if they come completely off we should take her back to the clinic so they can check it so it doesn't get infected.
Twice during the night I was awakened to Journey gasping in pain and the bandage laying next to her on the bed. I was pretty angry at that point that she was having to go through all that pain when she should have had a hard cast instead. Around 8am, we called our trusty number again and told them what happened and they said someone would call right back. After awhile, nobody had called back, and Journey was still acting like she was in a lot of pain, so I put her in the car and drove the 45 minutes to the clinic. I went in all mama-bear and demanded to be seen right away. We were able to see the same doctor who did the surgery and she took off both bandages and said "these really don't look bad, I think we can just put bandaid on it." Seriously??? We argued a little about it and she said she could put some gauze over the bandaid. I said I still didn't think that was enough and she left to go talk to a nurse who is a 'dressing expert'. In the 2 minutes she was gone, Journey was trying to pull and nibble out her stitches. I told her that when she came back in and she didn't say anything. Then, just to prove my point, I said "and, my husband passes out at the sight of blood or stitches". I swear she rolled her eyes before giving me a look and saying "it isn't going to bleed". The nurse came in, looked at her hands, and gave her some nice gauze wraps that she made nice and thick around her fingers. On the drive home, 2 hours later, we got our 'immediate' call back from the number we called that morning.
I realized at that point that we were on our own for wrapping, so we bought some bandages and tape at CVS, and we had been given antibiotic cream at the hospital, just in case. That night, Journey started wheezing, similar to what she sounded like in the recovery room when they put her on oxygen. I gave the recovery room a call and they said to go to the nearest ER. Eric wanted to go to one of his hospitals because we get a discount, so we drove out, and when we got there, she was hardly wheezing. We checked in anyway, and as she started running around with Vivi, she started wheezing again. I started making small talk with the people around us and found out that the people next to me had been waiting for 2 1/2 hours. Yikes! We tried to wait it out anyway, I was hoping that her surgery the day before might bump us up on the list. But by the time we hit our 2 hour mark, Journey fell asleep and wasn't wheezing much, so we decided to just go home and call the pediatrician in the morning. The next morning she was wheezing again, so I called the pediatrician, but they couldn't get us in until later that afternoon. Of course as soon as the appointment was made, she stopped wheezing and hasn't wheezed since :)
We went out to lunch with my mom and while Journey was sitting in the high chair playing, she somehow got her bandage off of her right hand and her incision was bleeding. She suddenly burst into tears and was shaking from the pain. There was too much blood on the incision to tell where exactly it was coming from, so, again, I called the clinic. Just the day before, I had been given a look and told that it wasn't going to bleed. When I got my call back, I spoke with someone on behalf of the doctor, and explained what happened again. She said
Nurse "ok, so I guess when you were here yesterday there was some kind of disagreement with how much blood you thought there was and what the dr. saw."
Me "No, there was a disagreement with how well covered her hands should be-she wanted to put a bandaid on it and I wanted something more protected since she just started walking and falls a lot."
Nurse "The dr. says you told her that your husband passes out at the sight of blood, so maybe it isn't as bad as you think."
Me "I just said that as another reason her hands should be well wrapped, and that doesn't even matter, my husband isn't here and there is blood dripping down her hand!"
Nurse "Ok, how much blood is it?"
Me "I don't know! It's soaking through the napkin I have over it. The dr told me it wasn't going to bleed so I just wanted to call and make sure everything was ok"
Nurse "Is it soaking the entire napkin?" (this was said in what sounded like an almost sarcastic voice). I described how much blood I saw and she went to talk to the doctor.
Nurse "Ok, the dr says all they did was release the amniotic bands, they didn't do any deep cutting that would cause bleeding."
Me "This is her right hand, where they DID have to cut down into her hand. She needed a skin graft. And she IS bleeding!"
So apparently they thought I was some crazy mother who enjoys calling doctors while holding screaming children! She ended up saying "well we are open until 4:30 so if you can get here before then we'll take a look". But she totally sounded like she didn't even believe me. I was livid! I had Eric meet me at the restaurant and we were going to go up to the hospital, but by the time he got there, she had pretty much stopped bleeding and wasn't acting like she was in a lot of pain anymore. I told Eric what had happened and he was mad too, so we decided to just wrap it up at home and Eric called and cancelled our appointment for that afternoon and our post-op appointment and asked for the dr to call him personally.
When the dr called him back, he told her that we were going to find another doctor who would treat his patients and their parents with respect and that we shouldn't have had to PROVE that she was actually bleeding before they would agree to see us. She sounded like she actually didn't understand why we were mad, and kept arguing that we were welcome to come in to the clinic any time if we had questions. Did you get that message from the above conversation? I didn't either! Then he told her that we could have avoided this whole thing if she had just done the hard casts she said she was going to do. She said "we never do hard casts, we always do the soft casts" (hello?? 3 weeks before she was the one who told me about the hard casts!) Eric said "well that might work for most of your patients, but it doesn't make sense at all for an 18 month old!" She was still acting totally oblivious and never even apologized for how we felt. Eventually she said we could come in and get hard casts if that was what we really wanted, after Eric had said multiple times that we would not be coming back. He finally just said "ok, we are finding another doctor, thank you for your time" and hung up.
So...we are now a family without a hand surgeon. Maybe canceling the post-op was a bad choice. Obviously we want someone to check her hands and make sure everything is healing right. I have a friend in Ohio whose daughter had hand surgery recently, and they go to the best guy in the state. She mentioned us at her daughter's appointment the other day and he said he gets a couple of patients a month from our surgeon because people are unhappy with after care. He said we could give him a call, so we are going to do that today and maybe we'll be making a trip to Ohio for her next surgery.
This was so not the week I had planned! But, Journey is feeling much better and isn't taking pain meds every 4 hours around the clock anymore, just 2 or 3 times a day. She doesn't like having her bandages changed, but loves moving her fingers independently and looks so amused by that!