You know the saying "If you don't have anything nice to say, don't say anything at all"?? That's what your mom always taught you, right? Well, now you know why I haven't been blogging lately.
No pictures.
No updates.
No stories.
Nothing.
Because I don't have much nice to say.
We had about two good days.....in the past couple of weeks. In general, I would say that most days find us frustrated, overwhelmed and anxious. All of us.
Wednesday was a good day. Start to finish - it was good. I was very hopeful that we had turned a corner.
Today was another rough one and I started this post with tears in my eyes and a heavy heart.
Ava looked at me today and said in a mournful voice, "I never wanted to do this in the first place!" and I just didn't know what to say. *I* didn't want to do this either. I remember the first time I saw the ex fix on a forum for Perthes and I showed it to Ryan and distinctly remember saying, "We are NOT doing THAT to her!"
Yet here we are.
We are 6 weeks post op. And still struggling in much the same ways and with most of the exact same things as the very first week. Which is very frustrating.
I am most frustrated with the fact that her pin sites don't seem to be healing as quickly or as well as all the other kids who had surgery around the same time that she did. I am finally seeing some healing in the top three and the big, long pin is closing up from the large, gaping wound that is was. Hallelujah. But she still complains of pain in all of them - and the bottom two pins hurt her the most and look the worst. I have had Dr. Standard's cell phone number for a while now, but haven't wanted to be 'that mom' and text him. It just seemed too invasive or something. But finally on Monday, I texted him with pictures of her pin sites asking for advice. He got right back with me and said that the bottom two (distal) pin sites have GRANULOMAS on them - which is basically hyper-healing tissue that will not heal without corrective treatment. He said that his PA would be in touch with me the next day for further instructions. Well, as has become normal, I didn't hear anything back the next day...so I emailed her the following day. Still heard nothing. I emailed and called the next day after that and still didn't hear. So finally on Thursday evening I texted him again to say that I hadn't heard anything yet and wasn't sure what to do to proceed. Finally, this morning I heard back that the recommend a silver nitrate treatment. She said is 'wouldn't hurt' in her email, but when I went online to do some research, I found that silver nitrate is a cauterizing agent! The sticks basically look like matches and you rub them on the wound and it turns the tissue black. Ummmmm...my freaked out child who is super anxious if anyone even gets close to touching any of the pin sites? Yeah - she is not going to tolerate that well. I also read quite a few commenters who said that it does, indeed, sting/burn and they recommend lidocaine or other anesthetic agent first if you are going to do this. I also found that the silver nitrate sticks are prescription only. So we have two options, really. Either we try to get our pediatrician to do this - which isn't going to happen...I called their office and spoke with the nurse and she pretty much acted like I was crazy to even suggest it - or we travel back up to Baltimore to have their office do it.
I don't know what we are going to do. This weekend, we are going to apply an over the counter drying agent to those granulomas to see if we can help them heal without the silver nitrate and make a decision on Monday, I guess. :/
Today I'm kinda feeling like having a big pity party. We have 11 weeks left of the ex fix and then we go back for removal surgery and she has to wear a brace for 23/24 hours a day for the following 6 weeks. I think we are far enough into this process to be frustrated but not seeing the end of the tunnel....kinda feeling like it will never end.....
I hate to admit this, but I knew that Ava was not my child who could withstand something like this. I knew it would be a horrible process if something were to ever happen to her. She's just not my easy kid. She's never been one to 'roll with it'. And I feel like we are all just sludging through each day of frustration and tears, anxiety and depression.
I don't want to stay positive.
I don't want to hear 'it's only temporary'.
I don't want people to tell me how good she looks. (when they don't see her meltdowns)
I don't want to 'look on the bright side'
What I want most is her pin sites to heal so that she isn't in constant pain when she moves and so that she can get sponges on and off without all the screaming. I really feel like if they were more healed, she wouldn't be so damn anxious about every.little.thing.
And I want her to eat and drink so that she is hydrated and nourished (which will probably help with her bad attitude).
But really, I don't want to do any of this.
Friday, July 25, 2014
Tuesday, July 8, 2014
It's hour-by-hour
At this point, we are taking Ava's recovery and our daily life hour-by-hour. There is literally no way to tell how things are going to go from one moment to the next. I had a friend message me and say that it looked like the transition home went really well....and I had to laugh. Because at that very moment, I had just finished an hour and a half long pin care routine with my 8yo literally screaming at the top of her lungs. I was in one of those 'this is absolutely terrible and I can't imagine it getting much worse' moments. But there have been good moments - where Ava has laughed, we've had wonderful visitors, and even gone on some outings. But our days are filled with contention. She is mostly whiney with a side of belligerent.
Ava was doing really quite well until late last week when she decided that she was going to absolutely refuse to take her medication....pretty much ALL of her medication. Luckily for us, she doesn't have any infections or anything and doesn't need antibiotics. But what she's currently taking is to manage her pain and keep her comfortable (as well as a few vitamins to keep her healthy, her bones growing, and things to keep her bowels moving). But pain is a very interesting thing when you are talking about a child. My sister, Amber, and I were talking about how not only does a child not have the language to express their pain type and level, but they simply don't have the life experience to understand what they are feeling. I have never had six pins in my body - I don't know what that feels like. And I don't know if what she is feeling is truly pain from the pin sites, or pain in her bones, or vibrations or just general uncomfortable feelings. She has only ever had pain from a scratch or scraped knees before....or a stubbed toe! So this isn't anything like any of her previous hurts and she probably has no idea how to describe what it feels like.
What she does know is that she hates the taste of medicine. Which sucks because she's never really had to take medicine before, and now having to take something every 4 hours for a full 4 weeks now is probably getting really old. We have experimented with stretching out the hours between dosages and/or cutting her dosages in half to see if she feels better, but nothing really is working. And it's a 10-15 minute struggle to get her to drink the damn medicine no matter what we do. I've tried all the suggestions - I've bribed her, I've explained to her what the medicine does and why she needs it, we've offered her anything to eat or drink with the medicine, etc. etc. So, late last week when she absolutely refused to take it anymore, I didn't know what to do. One of the Perthes moms that I've been in contact with suggested that we try the tablet form of oxy in order to get it in her system. While she hasn't been able to swallow pills before, we've been working on it and she can chew up some food, put the pill in, and swallow the food and pill together.
But I had no idea how hard it would be to get it for her. First, it was a holiday weekend, so the PA wasn't in and didn't respond to my emails until today. Because oxycodone is a narcotic, I have to have the actual paper prescription in my hand to take it to the pharmacy - they cannot call it in. So, she said she would put it in the mail and it would be to us in a few days. Well, that doesn't work for us between now and then. She has to be able to sleep at night, all night....she has to be able to go to physical therapy and do the exercises...she has to be able to stand pin care every day. So, waiting 3 days is just not feasible. The PA said she would call our pediatrician to see if he would write the script. Here's where the story gets even more crazy. Apparently, our pediatrician is on vacation this week and she said that none of the other doctors in the practice felt comfortable prescribing a narcotic because they haven't seen her. For a moment, I felt defeated, but understood. But then I got mad. I mean, I get that a narcotic like oxycodone has rules around it. I get that they have to be more careful because people will do anything to get their hands on this stuff. But the fact that good people have to suffer and jump through all these hoops is kind of crazy. So, I called the pediatrician's office myself. I spoke with the nurse manager and gave her a piece of my mind. It is hard to balance trying to be polite and respectful of someone's job and standing up for my child. I asked her if it was in their records that her pediatrician saw her in May and filled out all her pre-op paperwork. She said yes, the file indicated that. So I asked her what more we could do besides showing that my child was having this surgery and the surgeon's office calling them today to ask that they write this script for pain medication. I explained that they are sending me a paper prescription and we just need a few days to get us by. She said she spoke with the doctors on staff and they just wouldn't do it. I said, "Do I need to bring my child into the office in her wheelchair in the morning to see one of the doctors?" Finally, the night doctor on call agreed to write the script for 7 pills to get us by. I went to the office to pick it up - one of the nurses was a bit short with me, barking that she 'needed my ID' and I had to sign for the script - but the other was very kind.
So, I finally got what I needed and headed to the pharmacy around 7:15pm thinking that I could quickly get it and get home to put Ava to bed. But I didn't realize that I'd have a hard time actually getting the script after that! The pharmacy was also kind of short with me - needing my ID three more times *roll eyes* - and the pharmacist told me it would be an hour to hour and a half because she 'had to put her information in a VA state database and jump through all these hoops because it's a narcotic. Geez Louise!! 7 measly pills of 5mg each?? The whole process was absolutely ridiculous just to have a few pills to keep my kid out of pain for a few days. Ugh.
We have had such wonderful support from friends and family so far during this journey. I can't express how much it has helped to have my mother here to help with pincare and Ava's shower, how amazing it was to have Donna (my mother-in-law) stay here for the last week so that I could get some sessions shot and a few edited (although I'm still really behind on that!), and my sisters for being there for me to talk to, get advice from, and laugh with occasionally. Having meals delivered to the house every couple of days has also really been fabulous. I am so tired, honestly, and I can barely think straight anymore, so trying to figure out a dinner plan is just more than I can do at the moment. I know that sounds crazy, but it's true. And we've had some wonderfully sweet gifts too. This week, Ava opened one of the sweet presents that one of my clients gave her and she was so excited to see this set inside! Super-Ava!
WARNING: Graphic photos of her pinsites below.....be forewarned!
This is the 'long pin' - the one in the middle of her femur:
The first picture was last week. I was a bit worried about the greenish-yellow color of the inside. I sent this picture to them at Dr. Standard's office and she said that the greenish-yellow color is fibrous material, like a liquid scab and to leave it alone. The middle picture is the one that hurts me to look at. It looks like the pin is being pushed forward on her little body and the hole is opening up more and more. The last picture was today - it looks bigger and more 'angry' than before. :/
And these are the two knee pins. See the stitched up areas on both of the knee pin sites up to the front a bit? That is where they went in to find the places to put these pins and then decided that those were not good for her. So they came out and stitched those holes up. I call them the 'oopsies'. :/ But apparently they can't find the exact spot until after they are in there. (what?!?!)
Okay - I'm trying to type this and falling asleep as I type, so I'm heading to bed. Will try to keep updating as we go along here.....night, all!
Ava was doing really quite well until late last week when she decided that she was going to absolutely refuse to take her medication....pretty much ALL of her medication. Luckily for us, she doesn't have any infections or anything and doesn't need antibiotics. But what she's currently taking is to manage her pain and keep her comfortable (as well as a few vitamins to keep her healthy, her bones growing, and things to keep her bowels moving). But pain is a very interesting thing when you are talking about a child. My sister, Amber, and I were talking about how not only does a child not have the language to express their pain type and level, but they simply don't have the life experience to understand what they are feeling. I have never had six pins in my body - I don't know what that feels like. And I don't know if what she is feeling is truly pain from the pin sites, or pain in her bones, or vibrations or just general uncomfortable feelings. She has only ever had pain from a scratch or scraped knees before....or a stubbed toe! So this isn't anything like any of her previous hurts and she probably has no idea how to describe what it feels like.
What she does know is that she hates the taste of medicine. Which sucks because she's never really had to take medicine before, and now having to take something every 4 hours for a full 4 weeks now is probably getting really old. We have experimented with stretching out the hours between dosages and/or cutting her dosages in half to see if she feels better, but nothing really is working. And it's a 10-15 minute struggle to get her to drink the damn medicine no matter what we do. I've tried all the suggestions - I've bribed her, I've explained to her what the medicine does and why she needs it, we've offered her anything to eat or drink with the medicine, etc. etc. So, late last week when she absolutely refused to take it anymore, I didn't know what to do. One of the Perthes moms that I've been in contact with suggested that we try the tablet form of oxy in order to get it in her system. While she hasn't been able to swallow pills before, we've been working on it and she can chew up some food, put the pill in, and swallow the food and pill together.
But I had no idea how hard it would be to get it for her. First, it was a holiday weekend, so the PA wasn't in and didn't respond to my emails until today. Because oxycodone is a narcotic, I have to have the actual paper prescription in my hand to take it to the pharmacy - they cannot call it in. So, she said she would put it in the mail and it would be to us in a few days. Well, that doesn't work for us between now and then. She has to be able to sleep at night, all night....she has to be able to go to physical therapy and do the exercises...she has to be able to stand pin care every day. So, waiting 3 days is just not feasible. The PA said she would call our pediatrician to see if he would write the script. Here's where the story gets even more crazy. Apparently, our pediatrician is on vacation this week and she said that none of the other doctors in the practice felt comfortable prescribing a narcotic because they haven't seen her. For a moment, I felt defeated, but understood. But then I got mad. I mean, I get that a narcotic like oxycodone has rules around it. I get that they have to be more careful because people will do anything to get their hands on this stuff. But the fact that good people have to suffer and jump through all these hoops is kind of crazy. So, I called the pediatrician's office myself. I spoke with the nurse manager and gave her a piece of my mind. It is hard to balance trying to be polite and respectful of someone's job and standing up for my child. I asked her if it was in their records that her pediatrician saw her in May and filled out all her pre-op paperwork. She said yes, the file indicated that. So I asked her what more we could do besides showing that my child was having this surgery and the surgeon's office calling them today to ask that they write this script for pain medication. I explained that they are sending me a paper prescription and we just need a few days to get us by. She said she spoke with the doctors on staff and they just wouldn't do it. I said, "Do I need to bring my child into the office in her wheelchair in the morning to see one of the doctors?" Finally, the night doctor on call agreed to write the script for 7 pills to get us by. I went to the office to pick it up - one of the nurses was a bit short with me, barking that she 'needed my ID' and I had to sign for the script - but the other was very kind.
So, I finally got what I needed and headed to the pharmacy around 7:15pm thinking that I could quickly get it and get home to put Ava to bed. But I didn't realize that I'd have a hard time actually getting the script after that! The pharmacy was also kind of short with me - needing my ID three more times *roll eyes* - and the pharmacist told me it would be an hour to hour and a half because she 'had to put her information in a VA state database and jump through all these hoops because it's a narcotic. Geez Louise!! 7 measly pills of 5mg each?? The whole process was absolutely ridiculous just to have a few pills to keep my kid out of pain for a few days. Ugh.
We have had such wonderful support from friends and family so far during this journey. I can't express how much it has helped to have my mother here to help with pincare and Ava's shower, how amazing it was to have Donna (my mother-in-law) stay here for the last week so that I could get some sessions shot and a few edited (although I'm still really behind on that!), and my sisters for being there for me to talk to, get advice from, and laugh with occasionally. Having meals delivered to the house every couple of days has also really been fabulous. I am so tired, honestly, and I can barely think straight anymore, so trying to figure out a dinner plan is just more than I can do at the moment. I know that sounds crazy, but it's true. And we've had some wonderfully sweet gifts too. This week, Ava opened one of the sweet presents that one of my clients gave her and she was so excited to see this set inside! Super-Ava!
We had a good day at PT last week and Ava walked all the way in and out without any tears or frustration. That is progress for sure!
We went to a friend's house for a BBQ for the holiday weekend and it was wonderful for Ava to get in the pool and play with the kids. She did a LOT and kind of overdid it a bit. She was a tired mess when we got home that night - and pin care is always worse when she is tired or upset to begin with.
WARNING: Graphic photos of her pinsites below.....be forewarned!
Here's a snapshot of the exfix on her leg. We are experimenting with the blue clips and sponges vs. sponges alone or sponges with gauze. It's a juggling act for sure! The two pins on the right that you see are the 'knee pins' - they are closest to her knee and cause her a lot of pain. The middle pin (under the pink arrow and the blue zip tie) in the middle of the picture, is the one we are having trouble with - and she doesn't like it to rub anything. The top three pins are to the right in this picture and you can see the incision scar going from the front hip pin up to her groin area. The incision is nearly completely healed - but there are still stitches in it that need to fall out.
The first picture was last week. I was a bit worried about the greenish-yellow color of the inside. I sent this picture to them at Dr. Standard's office and she said that the greenish-yellow color is fibrous material, like a liquid scab and to leave it alone. The middle picture is the one that hurts me to look at. It looks like the pin is being pushed forward on her little body and the hole is opening up more and more. The last picture was today - it looks bigger and more 'angry' than before. :/
And these are the two knee pins. See the stitched up areas on both of the knee pin sites up to the front a bit? That is where they went in to find the places to put these pins and then decided that those were not good for her. So they came out and stitched those holes up. I call them the 'oopsies'. :/ But apparently they can't find the exact spot until after they are in there. (what?!?!)
Ava is so tired after PT that she has been taking a nap. One day this weekend, she asked to read a bit first and I told her she could for 10 minutes. I came back to find this. <3 My little bookworm!
Today, we had a pretty good day. We went to Cinema Cafe and watched Rio2 which was funny! Pincare wasn't quite the complete nightmare it has been, although it wasn't great either.
Okay - I'm trying to type this and falling asleep as I type, so I'm heading to bed. Will try to keep updating as we go along here.....night, all!
Sunday, July 6, 2014
Strong Willed Rough Days
We have now been home over a week and for the first 6 days or so, things seemed to go pretty well. We were making progress, however slight, with pincare and getting around, we transitioned to PT here at home, and we had friends bringing us meals every few days which took a lot of stress away.
Ryan's mom spent a week here and was a huge help since I needed to be at the studio for sessions and appointments nearly every week day this week. Funny how things stack up when you take time completely off!
But the past 3 days have been just awful. We are now in the battle of the wills. I'm not sure what changed or how attitudes have shifted, but it seems like Ava has decided that she is just unhappy all the time and she's going to take it out on us. She is currently refusing to take pretty much any medication on schedule - even just the Tylenol that has been keeping pain at bay. What can you do when someone refuses to take meds? We can't literally pour it down her throat! It is absolutely infuriating and frustrating. As her mother, I want to be kind and loving, but after 3 weeks of kind and loving and all I'm getting is whine, whine, cry, complain, and rude behavior toward everyone, it's really hard to want to be kind. Yes, I know her world has been rocked but at some point, she's gonna have to 'suck it up' and deal. This is our new normal. I don't like it either. But sitting around whining doesn't change anything. And refusing to take the medicine that will help you feel better? That's just cutting off your nose to spite your face, kid.
Sigh.
I'll do a more positive, picture post soon. Just can't manage it at the moment. I'm working on getting all my orders done (burning 9 flash drives today!) and editing the 8 sessions that are sitting in the queue now so that people don't start emailing me with "When are my photos going to be done?" I want to say, "As soon as I have a full 5 minutes to focus on anything but whining!!"
This is kind of like having a newborn again - she can't do anything completely independently. I have to help her every time she has to get up, reposition, go to the bathroom, get something to eat, get another craft/book/activity/game......it's a constant thing. I get about 10 minutes (maybe!) of something accomplished and then I am interrupted to get something else for her or deal with whatever crisis has popped up. Then, when she finally goes to sleep at night, I manage about an hour before I'm literally falling asleep sitting up on the couch with my laptop open. :/ I think the stress is just catching up to me. I'll get it together this week.....I know I will. It's just me and the kids this week, so I'm going to get a schedule together and we are going to stick to it. Hopefully that will help!
Ryan's mom spent a week here and was a huge help since I needed to be at the studio for sessions and appointments nearly every week day this week. Funny how things stack up when you take time completely off!
But the past 3 days have been just awful. We are now in the battle of the wills. I'm not sure what changed or how attitudes have shifted, but it seems like Ava has decided that she is just unhappy all the time and she's going to take it out on us. She is currently refusing to take pretty much any medication on schedule - even just the Tylenol that has been keeping pain at bay. What can you do when someone refuses to take meds? We can't literally pour it down her throat! It is absolutely infuriating and frustrating. As her mother, I want to be kind and loving, but after 3 weeks of kind and loving and all I'm getting is whine, whine, cry, complain, and rude behavior toward everyone, it's really hard to want to be kind. Yes, I know her world has been rocked but at some point, she's gonna have to 'suck it up' and deal. This is our new normal. I don't like it either. But sitting around whining doesn't change anything. And refusing to take the medicine that will help you feel better? That's just cutting off your nose to spite your face, kid.
Sigh.
I'll do a more positive, picture post soon. Just can't manage it at the moment. I'm working on getting all my orders done (burning 9 flash drives today!) and editing the 8 sessions that are sitting in the queue now so that people don't start emailing me with "When are my photos going to be done?" I want to say, "As soon as I have a full 5 minutes to focus on anything but whining!!"
This is kind of like having a newborn again - she can't do anything completely independently. I have to help her every time she has to get up, reposition, go to the bathroom, get something to eat, get another craft/book/activity/game......it's a constant thing. I get about 10 minutes (maybe!) of something accomplished and then I am interrupted to get something else for her or deal with whatever crisis has popped up. Then, when she finally goes to sleep at night, I manage about an hour before I'm literally falling asleep sitting up on the couch with my laptop open. :/ I think the stress is just catching up to me. I'll get it together this week.....I know I will. It's just me and the kids this week, so I'm going to get a schedule together and we are going to stick to it. Hopefully that will help!
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