The things said

So this might sound like a little rant but this has really been bothering me and I am sure I am not the only person out there that feels this way.

I am not perfect but I try my best to treat others the way that I would want them to treat me and my kids.  Here is the point...

If you have mean things to say DON'T!!!  Yes I know you are entitled to your own opinion and that is great, but why don't you think before you open your mouth?  Think how is this going to affect the other person.  There is a good chance that you don't know what is going on in their life right now, or you are not sure how they are handling everything that they have to in balance.

I know I have been hurt several times by people ranging from family to total strangers not thinking before they speak and really hurting me.  They will never know how much they have hurt me because I refuse to stoop to their level and let them know they have hurt me.  I know they don't mean to be hurtful to me, but that doesn't make the hurt go away.  There are lots of people that just do not understand that when they open their mouth and say what they want they are bound to hurt someone.  They think that it is something that needs to be heard, but most of the time that isn't the case.

I know that this also applies to me but I am trying to keep my opinions to myself and then if someone asks then I will share but until that person actually asks too bad I refuse to share.  I don't want to hurt others like I have been hurt.

This also applies to parents teaching their kids on the correct things to say.  I have seen several kids come up and ask me(usually) and Rhett(sometime) point blank, "What is wrong with him/you?"  He looks at me with a broken heart.  I turn point blank doesn't matter what age the child is or adult, "There is nothing wrong with him what is wrong with you?"  I know mean but get it through your head!  This boy has been through so much and he thought you were his friend until you opened you mouth and didn't think about asking why he has oxygen, or why he is shorter than normal kids his age.

You should teach your kids how to approach someone with a disability and ask questions appropriately.  I know I have done that with my kids and I correct them often  and we go over situations where I might not be with them but if they are curious and want to ask questions ask them with the feels of the person they are talking to in mind so they do not cause unnecessary heart ache.

Going on with my little rant...

Even if you think you might have the persons best interest in mind understand you do not know them as well as you might like to believe you do.  I am tired of defending myself from all the closed minded peoples attacks verbally.  I understand that we are all human but please think before you speak.  Even if you know the persons background and you know what is going on in their life it still gives you no excuse to say anything you want to them even if you think it will make them feel better.  Well guess what it doesn't help and it makes the person you are talking to feel horrible!!!  Often times I just want people to let me know that they care, I don't want pity or drama from them

I let people know what is going on in my life so that way my sister and brother stay informed and that is the only reason if I help others that it great.  They both live so far away and it easier for me to just put everything here so they know what is going on since I normally have so much going on that it can be hard keeping track of everything.

On a different note I have had a few people ask me how I handle everything all the time.  It really isn't that hard.  Either I laugh or cry but if I start crying I never stop.  I put a smile on my face so no one knows what is going on, and trust me I am a great actress.  I only go day by day.  I am thankful that I am able to get up in the morning and to be able to get things done that I need to do.

Hope everyone has a great day!

Rain is pouring

Man I am not sure I am going to make it.  But then I think about my little saying... "When it rains it pours and when it pours you just need to dance in the rain."

I am not holding my breath but I spoke to the pulmonologist about Rhett's CT scan and he read me the whole scan.  This is what I came away with, compared with the previous study it didn't sound too good.  So get this a mL and a cc are the same thing as far as anyone has ever told me.

There is scattered air sacks in the right lung that will no inflate as much as they should be, because he just doesn't have the room and the negative pressure to fully inflate all the way.  According to the CT scan it is similar to the prior study.  There is still a tiny bit of fluid around his right lung, but nothing too serious.  So far so good I guess.  I mean there isn't a big difference from the previous study done in October 2010.  I am glad that they have something to compare this new CT scan taken in May 2012.

They were also able to compare the lung volume and this is what they informed me of, in 2010 his right lung estimated to have 520 cc and the CT scan he had taken just this month his lung volume is estimated to be at 391 cc.  His left lung in 2010 estimated to have 389 cc and now it is estimated to have 326 cc.

WHAT!!!!  You have got to be kidding!!!  He had surgery on his right side of his chest to help open up his lungs and give him more lung volume. 

 When I was getting all this info from the doctor he was not convinced that they are accurate but they have always, and I mean always have gone up after ever surgery to expand his chest, but he is still wanting to get another PFT to be more accurate on what is really going on in his body but we have to wait and have that test done in August to give his body some time to heal before that happens.  Well now I know why his oxygen has increased and he struggles more.  But still his lung volume should not have dropped with them opening up his chest and have 7 broken ribs on top of that too.  What the heck!!

 I am not sure what it is going to turn out to be but I am also working on trying to get all the doctors in one place at one time and that isn't any easy feat.  On top of which I am trying to move up the genetic appointment that he has since it has been over a 6 month wait just to get in to see the doctor.  SUCKS!!!  I hate it when I try to get into the doctors office and they are like well the first available it 9 months from now.  What good is that going to do?

So now it is a waiting game I do believe.  I will for sure keep ya up to speed if things change.  I am grateful for all the support that we have received from so many different people, some that know us and others that are people that we don't know but just know us by this blog.  Thank you.

Update to CT scan

Ok so I got the news from the doctor that the fluid around Rhett's right lung has decreased which is great! Knowing that I asked about the hazy stuff they could see in the right lung and the doctor said that the hazy stuff that they saw on the x-rays were pockets in his lung that were still collapsed.  SERIOUSLY!  Apparently he doesn't have enough negative pressure to inflate it all the way.  So now I have to figure out a how to get his lung inflated again.  I was also told that I need to take him in and find out from the pulmonologist and get his opinion on what to do.  So it looks like he has never gotten it up and working since the collapse from after surgery.

Gosh I guess I can say that this really sucks.  But I guess I can handle it right, or maybe He has too much faith in my abilities.  Not having a good time right now with all this drama but most of it is emotional drama.  Not sure how to juggle all of this on top of everything else.

Oh Vey!

Ok so I have been using that saying lots.  It has made my kids crazy!  Wah ha ha ha ha...  It is about time they are crazy and not me.

I know I am totally playing catch up but that is because when things happen they never go slow they always seem to go so fast that I have no control over what I am able to get done or not.  Sorry it took me so long to get to this but heck at least I was able to get to it.

So This week has been a roller coaster ride for most of us, who am I kidding I mean to say all of us.  LOL  The saying is when it rains it pours right well I think that 90% of the time it is raining here.  At least that is how I feel right now.  There is also another saying April showers bring May flowers right?  Well can we skip the showers and just have the flowers?

When Rhett came home it was like normal he laid down next to his concentrator to warm up but it was nice and warm out.  Not sure what to make of all of this.  I helped all that kids make dinner and get them ready for bed as I walked to help get Dylan's clothes I looked in the bathroom since everyone except Rhett and I had eaten.  Rhett was there throwing up that poor boy.  Not sure what happened, but I took his temp and found out that his temp was out of control high, and that was even a hour after he had take some ibuprofen, Oxycodone, and iron.  I just didn't understand since it had been a hour since I had given him the meds, he shouldn't be carrying that high of a temp after those in his system.  I called the doctor since he was very pale and tired.  I had him lay down and check his stats(oxygen in his blood).  Guess what it was 98 which is great!  I mean heck it only goes to 100 right?  Well he was doing wonderful.  As I was talking to the doctor I notice that he was working pretty hard breathing and let her know that and as we went over everything I notice that his oxygen was on 3 Liters!  HOLY COW THAT IS DOUBLE!!!  CRAP!!!  After that we both the doctor and I decided that he needed to go to the hospital.  So I packed up a bag and was getting ready when I remembered my car was in the shop.  Why is this happening to me?  Oh wait it isn't me it is our family.  But I sure feel like it is me since I face the force of it everyday as I am the one that takes care for the the kids so I get it in and out everyday.  Well anyways off my rant...LOL!  I get a ride up to the ER with Rhett and as we get close to the freeway he decides that he needs to throw up.  We pull over and let him out of the car just in case and yep he did throw up.  Glad that it wasn't in the car.  But after he felt better for a while and we headed up to the hospital.  We arrived there around 10 pm so I know both of us were pretty tired.  I took everything in and pushed Rhett in his wheelchair.  As we were checking in there appeared a tech that said, "Hi Rhett."  I was surprised and asked him if he has worked on Rhett, he said he wasn't sure but that Rhett did look familiar.  Doesn't surprise me since there have been many people that have worked on Rhett. 

I have figured out if I am ready to spend time at the hospital by packing a bag then they usually send us home and I figure that I will be ready they will say "ahhh.... yep go home". 

 We get into a room at the ER and the Nurse Practitioner and nurse came in very soon after we got there.  I was surprised the ER was super slow and very quiet compared to other times when we were there.  He didn't want to get another x-ray because Rhett had just had one taken the day before.  He wanted to get some blood work and run some tests.  He also wanted to start an IV.  No idea why since I knew he had been drinking quite a bit and was so not dehydrated.  But then the doctor decided that even in one day there could be changes on his x-ray and he needed to have it taken again.  So before the blood work was done and the IV put in we went down to get the x-ray and had to even get a change of pants since he had a accident.  I don't understand that they want to put him on fluids even after that happening.  FRUSTRATING!!!  Oh well that is what happens in the hospital.  Too bad that he couldn't be out like when he had surgery.  They came in to get the blood and start the IV.  It took them a little while and he was sad and crying.  But after they were done the nurse came in and started the IV.  After that he was just in so much pain and was always crying and telling me that his IV hurt and he could feel it in the middle of his arm and it hurt really bad.  The nurse came in and turned it down and then left.  After a little while a different nurse came in and turned it off after Rhett had pushed the button several times and told them that it hurt hit.  They also wanted him to give a urine sample to see if it was something the blood didn't show.  We were the only ones in that wing of the ER because it was so slow.  It was nice and quiet.  So After all the tests it was just a waiting game.  After a few hours the Nurse Practitioner came back in and said well we know what it is very matter of factually.  He had determined that it was a UTI.  Ok, then why isn't he showing any symptoms other then a fever?  I mean heck there is nothing but that!  So they sent us home on antibiotics and that was at 3 am.  Wow what a long night that was.  His fever went away.  The x-ray showed nothing had changed and the blood work showed that his iron was still low and his white blood cells were high.  There was NO REASON for him to have that high of a fever!  Not a happy momma!!!  We get home at 3:30 am and hit the hay hard trying to get some sleep before getting kids up and out the door for school at 6 am.  Oh boy!  Rhett fell asleep very quickly which I am grateful for since I knew he had tests the next day at school.  After only 2 hours or less of sleep I got all of the kids up and got them out the door.  Then I did what I needed to do that day and by that afternoon both Rhett and I were exhausted!  We all went to bed early which was good for us.  Still no change in the x-ray so the pediatrician talked to the pulmonologist to see if he would recommend CT scan of Rhett's chest.  Of course he said yes and so then it was a fun try to get a hold of the surgeon since he was out of town on vacation.  The doctors said that they wouldn't do anything without the surgeon's input in the matter since they thing it is having something to do with his last surgery.

Well we got the results from the ER visit Monday the 30th of April and there was no UTI and not infection anywhere according to the blood test, urine test, and the x-ray.  WHAT!!!  Now then why did he spike a temp and why did he double his oxygen and struggle to breathe?  Go figure let's just cause a little bit more stress.  Ok Lord it is in your hands since i cannot handle the stress.

Well Tuesday May 1st was the follow up with the surgeon and apparently his wound it opening at the top by the shoulder, and at the bottom under his arm.  Holy cow child would you just leave your wound alone!!!  So now he has steri strips on both the open parts since the doctor doesn't want it to open any more than it was.  He cannot stitch it up since it is infected but it looks like just a surface infection.  Of course he said that if we did get a CT scan to also get the lung volume measured and that might help with when we get the doctors all together and have a nice discussion about what is going on with Rhett.  We had a CT scan on Friday after I took Rhett to the doctor to get some blood work done.  We got the results of his blood work, but we are still waiting for the results of the CT scan.

The blood work came back good.  His iron is finally coming up and his white blood cells are normal.  His glucose is normal after the doctor thinking that it might be high and that he might even be diabetic.  Well that is great that everything is normal!!!  I just wish that I had that CT results.  I won't get those until Monday and that is TODAY!!!  I cannot wait!!  I will post another update very soon promise!