annmarieda
DIS Veteran
- Joined
- Feb 10, 2010
- Messages
- 8,548
Ok... so yesterday really sucked. I mean... I am trying to stay positive. But man I am just starting to feel a bit beat. Thank God we had some happy times yesterday too or I think I might have sunk into some deep dark place. As it is... I didn't sleep much last night and spent much of the night crying. 
But enough of the pitty party 
.. so here is how the day went
Zoe has been getting increasingly agitated as the tubes that have been in place for the last month have been irritating her bladder. It is also possible that one of her medications is altering her mood. Either way... she is not her normal happy self a good deal of the time. This in and of itself is a bit wearing on me. Another back ground tid bit... Since Steve has chrons and stress sets it off worse.. he has been pretty ill lately. He spends his night vomiting or at bare minimum in the bathroom. Since I need to be able to help Zoe should she need me...and because I also don't want to disturb or be disturbed I have been sleeping with Zoe in her room.
So yesterday morning I woke to her trashing about and screaming. She was in pain and just in an over all bad mood. (I should have seen this as a sign of things to come) I did what I could to make her comfortable and to irrigate her remaining working tube. This caused screaming and fighting. Now, you would think that the male humans who also live in this house would be a bit understanding, and aware of these struggles since they have been around Zoe her entire life... but they were not. So they too were moody.
After getting Zoe and I ready, we loaded up the car and waited for Kira to join us. It is a long drive to Childrens Hospital and traffic didn't help. We were almost one hour late for the appointment.
Since Zoe's doctor was seeing her in between surgeries he agreed to still fit her in. First though, a nurse came in to talk with us.
So.. in most ways i tend to be able to see the positive side of things. I try to remain positive.. but I can get down from time to time. Overall though.. I would think that I am a pretty positive person. My biggest complaint I have with Children's Hospital... is the way they sugar coat everything and only tend to want to give "best case" Please.. just give me what I should expect. Don't make me drag out of you any negatives you don't want to share. I promise I cope much better that way.
So we have this nurse sitting with us. She is giving us very little information and all the while when I bring something up that is a bit challenging I am getting a "hmm.. well...hmm yes" I am not sure I mentioned that the catheters that Zoe needs have been quoted to me at $5 each. Ok...so while my insurance will cover some... they won't cover all and since Zoe will need at least 5 a day.
I gave that as a reason as to why I had not ordered the caths yet. The first company they had put me in touch with had wanted me to order so many that I wanted to make sure that we were actually going to need that many.
See... lets go back. Dr. had told us that Zoe would be dry and no longer need pullups after the surgery. (not true) He told us that we would only need to use a cath in the morning and at night to make sure any residual urine had been drained and to irrigate the bladder to "keep it clean" (also not true) In my mind we were going to be simplifying our life. (again, not true)
So after finding out all this we had to move on to get her tubes out. It is a simple procedure where a few stitches are snipped and then the tube gets pulled out. In the past, Zoe has always handled this well. In fact, last year she helped to remove hers. This time though, we had to chase her around and hold her down. She screamed as though we were killing her for almost all of it.
Once the tubes were out, it was time for the Dr. to make sure the channel was working and show me how to cath her. Again... holding down a screaming child who was sure we were killing her. It was horrible and they looked to Kira and I to make her comply without saying that we needed to just do this. In fact, prior to taking out the second tube the dr just sat patiently. He asked Zoe if she would like to finish getting them out. (as though she really had a choice) In the end this being the "good cop" I think made Zoe really hate me since I had to be the "bad cop" but I will get to that later.
After the doctor was able to cath, it was my turn to try. I guess we couldn't' leave until I proved I could.
Again, more blood curdling screams and... i did it (with a halfhearted. 
) I had to DRAG information from them. Like "how long will her belly button bleed when we do this" Wouldn't you think that telling the parents how long would be important. I can't imagine they don't' get dozens of panicked calls when something "expected" happens that is kinda a negative thing and the parent or parents get worried. Anyway... this was just a good example of not being given the information but having to ask for it.
And with that, we were given some supplies and allowed to leave. Even that was weird though. As we sat there with the nurse just looking at us i finally just kinda said "ok, well... thank you then" Thank God I thought to ask if we were coming back so they could set up an appointment. God forbid they tell us that we have to come back in a month right then and there.
Continued in next post....
But enough of the pitty party .. so here is how the day went Zoe has been getting increasingly agitated as the tubes that have been in place for the last month have been irritating her bladder. It is also possible that one of her medications is altering her mood. Either way... she is not her normal happy self a good deal of the time. This in and of itself is a bit wearing on me. Another back ground tid bit... Since Steve has chrons and stress sets it off worse.. he has been pretty ill lately. He spends his night vomiting or at bare minimum in the bathroom. Since I need to be able to help Zoe should she need me...and because I also don't want to disturb or be disturbed I have been sleeping with Zoe in her room.
So yesterday morning I woke to her trashing about and screaming. She was in pain and just in an over all bad mood. (I should have seen this as a sign of things to come) I did what I could to make her comfortable and to irrigate her remaining working tube. This caused screaming and fighting. Now, you would think that the male humans who also live in this house would be a bit understanding, and aware of these struggles since they have been around Zoe her entire life... but they were not. So they too were moody.
After getting Zoe and I ready, we loaded up the car and waited for Kira to join us. It is a long drive to Childrens Hospital and traffic didn't help. We were almost one hour late for the appointment.
Since Zoe's doctor was seeing her in between surgeries he agreed to still fit her in. First though, a nurse came in to talk with us.
So.. in most ways i tend to be able to see the positive side of things. I try to remain positive.. but I can get down from time to time. Overall though.. I would think that I am a pretty positive person. My biggest complaint I have with Children's Hospital... is the way they sugar coat everything and only tend to want to give "best case" Please.. just give me what I should expect. Don't make me drag out of you any negatives you don't want to share. I promise I cope much better that way.
So we have this nurse sitting with us. She is giving us very little information and all the while when I bring something up that is a bit challenging I am getting a "hmm.. well...hmm yes" I am not sure I mentioned that the catheters that Zoe needs have been quoted to me at $5 each. Ok...so while my insurance will cover some... they won't cover all and since Zoe will need at least 5 a day.
I gave that as a reason as to why I had not ordered the caths yet. The first company they had put me in touch with had wanted me to order so many that I wanted to make sure that we were actually going to need that many. See... lets go back. Dr. had told us that Zoe would be dry and no longer need pullups after the surgery. (not true) He told us that we would only need to use a cath in the morning and at night to make sure any residual urine had been drained and to irrigate the bladder to "keep it clean" (also not true) In my mind we were going to be simplifying our life. (again, not true)
So after finding out all this we had to move on to get her tubes out. It is a simple procedure where a few stitches are snipped and then the tube gets pulled out. In the past, Zoe has always handled this well. In fact, last year she helped to remove hers. This time though, we had to chase her around and hold her down. She screamed as though we were killing her for almost all of it.
Once the tubes were out, it was time for the Dr. to make sure the channel was working and show me how to cath her. Again... holding down a screaming child who was sure we were killing her. It was horrible and they looked to Kira and I to make her comply without saying that we needed to just do this. In fact, prior to taking out the second tube the dr just sat patiently. He asked Zoe if she would like to finish getting them out. (as though she really had a choice) In the end this being the "good cop" I think made Zoe really hate me since I had to be the "bad cop" but I will get to that later.
After the doctor was able to cath, it was my turn to try. I guess we couldn't' leave until I proved I could.
Again, more blood curdling screams and... i did it (with a halfhearted. ) I had to DRAG information from them. Like "how long will her belly button bleed when we do this" Wouldn't you think that telling the parents how long would be important. I can't imagine they don't' get dozens of panicked calls when something "expected" happens that is kinda a negative thing and the parent or parents get worried. Anyway... this was just a good example of not being given the information but having to ask for it. And with that, we were given some supplies and allowed to leave. Even that was weird though. As we sat there with the nurse just looking at us i finally just kinda said "ok, well... thank you then" Thank God I thought to ask if we were coming back so they could set up an appointment. God forbid they tell us that we have to come back in a month right then and there.
Continued in next post....
In every way. I wish they would just let us know what's up instead of talking in circles. 
Starving we decided to go ahead and eat and then just deal with it at home.
If it doesn't get better I will have to cancel. I can't have her SCREAMING like I am killing her while in a stall... or even in our room. As it is... we have bad neighbors. Once Kira was pitching a fit when she was a preteen.. Her window was open and she was sobbing. Well, the neighbors called the police. I am sure if this doesn't get better soon... I will expect the police on my doorstep within the week. 
from across the country! 
) but I think she has to "learn" how to be potty trained. I mean, given that she leaks out when full... we know her urethra works. I think just like little ones who have to sit on a training chair for a long period to figure out what they need to do, I think she does too. So with a book in hand...I sent her to the bathroom this morning. Guess what???? She went. Not a lot mind you and I know she still needs to be cathed, but here it is almost mid day and she has been taking potty breaks instead of being cathed. 
