Well, we have made some progress but are still no where near where we should be and this morning has brought a lot of drama already!
It all started when Nathan went to the bathroom and decided to fill the toilet with blood, as if he had control over it. First, i paniced and over-reacted, and then the nurses and docs over-reacted. Poor kid. They are running all kinds of test and cultures and in the meantime we are on isolation now. I can't tell you how many times the attending has already been in here this mornig.
Since his PFT's were still down by more than 11% yesterday, they decided to do a CT scan, sputum induction, and pending those results a bronch on Tuesday. This tune-up is looking more and more like a month long thing or more if things don't change soon.
So, we went to his CT scan this morning and here is where the next drama scene occurred. I am sooooooooo blonde sometimes! I was in the room watching the screen and him through the window with the techs when all of a sudden a took one of those deep breaths that everyone around you panics as I proclaimed "OH NO" before I could finish my sentence they all were jumping thinking he fell off the table or something. I said no, I just forgot about his insulin pump, he is still wearing it. Turns out that the only issue with the pump is when and if they are doing an MRI, scans are fine. Poor techs, I scared them to death.
We came back to our room and the attending came in again and decided to order yet more test. This is where I told the nurse don't bother telling me his counts are low, I already know that based on how much blood you all have been taking over the last week, that should be a given.
After that was finished it was off to do the sputum induction. Wish I could say no more drama, but it is Nathan we are talking about. The induction was going really well and we were on the last set of huff coughs when he picked up the sputum cup and almost lost it along with all the junk he had gotten up. The RT and I both almost had heart failure on the spot. Luckily Nathan was quick and caught it and didn't even spill a drop! Way to go Nathan! Lisa, the RT, told him she almost had to find out if she had done a good job of teaching his mom CPR or not.
We finally got back to our room and are trying to sneak a rest in before our next treatment. I should say his next treatment. He seems exhausted and the day isn't over yet.
We are just now waiting for all the results to come back and see what we are going to do and where we go from here. I really am just hoping for some answers! We have been working on this Tune-up since the 9th of this month and we really aren't seeing an end in sight as of yet. The docs were all really surprised that there wasn't any improvement with his PFT's yesterday, I think they really thought I was exaggerating but they now know that I wasn't.
I'll update this post as I learn more about the test results and what is next.
Thanks,
Update:
Getting information around here is near impossible. Nathan isn't doing things according to the textbook again so they don't seem to know what to do with him or for him.
I do know that the bronch has been put on the back burner for the time being, though that came from the resident and it certainly would not be the first time the resident gave me wrong information. However, lets say he isn't NPO yet either so I don't think its happening today at any rate.
The team is suppose to be by at some point today and we are suppose to talk about a plan. Not sure when or if that will happen as they were suppose to have a plan yesterday and it didn't happen. I was so glad that I decided to go to work and leave Nathan alone for the first time as I would have been out of my mind crazy waiting for someone to make a decision yesterday, thats not to say it won't happen today. I still think that we need to get the CFF to make a standard of care practice for CF parents to get valium upon their childs admissions.
This has been the worse of the "hurray and wait for a decision" than I can remember. Will post again, when and if I finally find out anything to report.
Oh yeah, his PFT's are still about the same as they were last week.
Still Waiting,
WE'RE HOME!!!
They decided to change some of his oral meds and give him a week or two break from the IV's then depending on how is doing at that time maybe do a 2 weeks course of IV's again to see how that works for him.
In the meantime it is likely that we will just have to 16% hit on his PFT's. Taking his baseline of 112% to 94%.
We will be going to clinic every 2 weeks for a year or so and doing cultures each time we go. This will hopefully allow them to stay on top of things better and will be able to treat him before things get so far out of hand, at least that is the idea and hope of it.
Thanks,
It all started when Nathan went to the bathroom and decided to fill the toilet with blood, as if he had control over it. First, i paniced and over-reacted, and then the nurses and docs over-reacted. Poor kid. They are running all kinds of test and cultures and in the meantime we are on isolation now. I can't tell you how many times the attending has already been in here this mornig.
Since his PFT's were still down by more than 11% yesterday, they decided to do a CT scan, sputum induction, and pending those results a bronch on Tuesday. This tune-up is looking more and more like a month long thing or more if things don't change soon.
So, we went to his CT scan this morning and here is where the next drama scene occurred. I am sooooooooo blonde sometimes! I was in the room watching the screen and him through the window with the techs when all of a sudden a took one of those deep breaths that everyone around you panics as I proclaimed "OH NO" before I could finish my sentence they all were jumping thinking he fell off the table or something. I said no, I just forgot about his insulin pump, he is still wearing it. Turns out that the only issue with the pump is when and if they are doing an MRI, scans are fine. Poor techs, I scared them to death.
We came back to our room and the attending came in again and decided to order yet more test. This is where I told the nurse don't bother telling me his counts are low, I already know that based on how much blood you all have been taking over the last week, that should be a given.
After that was finished it was off to do the sputum induction. Wish I could say no more drama, but it is Nathan we are talking about. The induction was going really well and we were on the last set of huff coughs when he picked up the sputum cup and almost lost it along with all the junk he had gotten up. The RT and I both almost had heart failure on the spot. Luckily Nathan was quick and caught it and didn't even spill a drop! Way to go Nathan! Lisa, the RT, told him she almost had to find out if she had done a good job of teaching his mom CPR or not.
We finally got back to our room and are trying to sneak a rest in before our next treatment. I should say his next treatment. He seems exhausted and the day isn't over yet.
We are just now waiting for all the results to come back and see what we are going to do and where we go from here. I really am just hoping for some answers! We have been working on this Tune-up since the 9th of this month and we really aren't seeing an end in sight as of yet. The docs were all really surprised that there wasn't any improvement with his PFT's yesterday, I think they really thought I was exaggerating but they now know that I wasn't.
I'll update this post as I learn more about the test results and what is next.
Thanks,
Update:
Getting information around here is near impossible. Nathan isn't doing things according to the textbook again so they don't seem to know what to do with him or for him.
I do know that the bronch has been put on the back burner for the time being, though that came from the resident and it certainly would not be the first time the resident gave me wrong information. However, lets say he isn't NPO yet either so I don't think its happening today at any rate.
The team is suppose to be by at some point today and we are suppose to talk about a plan. Not sure when or if that will happen as they were suppose to have a plan yesterday and it didn't happen. I was so glad that I decided to go to work and leave Nathan alone for the first time as I would have been out of my mind crazy waiting for someone to make a decision yesterday, thats not to say it won't happen today. I still think that we need to get the CFF to make a standard of care practice for CF parents to get valium upon their childs admissions.
This has been the worse of the "hurray and wait for a decision" than I can remember. Will post again, when and if I finally find out anything to report.
Oh yeah, his PFT's are still about the same as they were last week.
Still Waiting,
WE'RE HOME!!!
They decided to change some of his oral meds and give him a week or two break from the IV's then depending on how is doing at that time maybe do a 2 weeks course of IV's again to see how that works for him.
In the meantime it is likely that we will just have to 16% hit on his PFT's. Taking his baseline of 112% to 94%.
We will be going to clinic every 2 weeks for a year or so and doing cultures each time we go. This will hopefully allow them to stay on top of things better and will be able to treat him before things get so far out of hand, at least that is the idea and hope of it.
Thanks,