Friday, March 30, 2012

Happy it is over

This past school term was stressful for me and I am not even in school!   LOL!!

This two weeks ago was the end of the term and Rhett was trying so hard to pull his grades up.  He only had to go to school Monday through Thursday since they have Friday off when it is the end of the term.  Well Thursday he had a dentist appointment and so did Dylan so I took them to the dentist and when I took Rhett back to school I told him that if he was staying late to finish some papers that were due last term he had to call me because I was responsible for picking him up from school and making sure that he has enough oxygen to last.  Well no one called me and by 4:30 I started to panic!  I was trying to call the school to find out where he was and no one answered the phones!

CRAP!!!  WHERE ARE YOU RHETT!?!?!? 

So I called the bus driver to find out if he was on the bus and they were for a reason or something like that but when I called there was no response so I left a message and tried the school again.  I was doing all this while getting ready to get in my car and head out to try to find him.  As soon as I was about to walk out the door the phone rings and it is.... the bus driver.  He told me that all the boys that he picks up from the school decided to stay and no one called him.  I told him that I would have called him if I had known but my son didn't call me like he was suppose to have called me.  So when I found this out I was so mad it was not good.  I was way past my breaking point.  I had changed his oxygen when I dropped him off after the dentist so I knew he was almost out of oxygen.  When I told that to the bus driver he was kind enough to offer to go give Rhett another tank since he was close.  I told him that would be great and to let me know if he saw Rhett, since I wasn't even sure he was still at the school.  But I never heard back from the driver, I think his cell phone died. LOL!  Oh well.  I was driving toward the school during rush hour and I was panicking, really angry, and stressed.  Those are not a good combination to have while you are diving, so I was on the phone with a few people trying to calm myself which did work and we got to the school safe.  I go in and he is standing there in the class where he stayed after to work on some papers.  It did help his grade.  That went from a C- to a A- just by staying after and finishing some work.  At least his teacher can get him to work on things that I cannot get him to do for the life of me.  But I was still really mad at him for not calling since I had told him over and over again to call me if he was going to stay late.  I took him home and told him he was grounded forever!!  Wah ha ha!!  I can do that since I am the mom!

I will have to post more later since there are pictures that go with the next one.

Saturday, March 17, 2012

What a week

Rhett came home from school Monday with a little fever and very lethargic.  He just laid there and didn't move for the longest time.  Well it sure seemed long to me.  I talked with the bus driver and he said that when he got on the bus he was shivering a whole bunch so the bus driver let him have his jacket to keep him warm.  I am so glad that he has such a great bus driver!  So I need for Rhett to get healthy and stay that way until his surgery at least.  Too bad he cannot go to school since they have a policy that you cannot send sick kids to school.  I think it is a great rule and everyone should follow it, since that is normally how kids get sick, they share with other kids.
So every morning I would take his temperature to see if he can go to school and if he still had a fever by Thursday I would take him to the doctors office.  But no matter what day it was he continued to have a fever.  He was up and moving around by Wednesday but with a fever still.  I am grateful that it wasn't a high fever at least.  But he would be zapped of energy by the afternoon and that is with just doing a little homework and resting.  I have no idea how that it is possible to not do very much but still get tired.  Thursday he still had a fever so it was off to the doctors that we went.  He had no sore throat, no ear infection, nothing in his lungs, and no other problems.  So he is thinking that it might be a mild case of the flu, or a virus that we have to wait out.  I was glad that he didn't have something really serious.  But still the doctor agreed that if he still have even a slight fever to keep him home.  So instead of worrying about things we just started to work on the science fair project that he has to turn in Monday at the latest.  The teacher wanted it by Friday but are willing to take it Monday.
By Friday the fever was gone and he was so excited to be able to go to school.  They were going to be doing some very fun things at school and he could hardly wait.  So I sent him on the bus and was grateful that I could do everything that I needed to do.  I ran to one of Rhett's schools to give them the note for him being sick.  As soon as I finished that I raced to the school of Nikole and Gavin to help with a class party for one if the classes there that earned it.  I got there just in time.  As I was helping I couldn't help but wonder how Rhett was doing and all the things that I needed to do.  As soon as I was done helping I took off to go back to the school that I went to first to see if one of Rhett's teachers were available to talk to since I had questions on how to help him.  Lucky for me she was still there and I was able to talk to her and get some help figuring out what I need to do to help him do better.  We had a good talk and then I went to the other school to take the note for Rhett and as soon as I was done I called the doctors office since we have been playing phone tag for a while.  We talked about getting him the Flovent that Rhett needs and also getting another opinion.  As I am driving around thinking about everything that is on my mind and looking for a UPS store.  LOL!  Not like I know where any of them are, which I really don't know.  But I found one and dropped off a package that needed to be sent out.  After that I went running to the store to get more things that Rhett needed for his science fair project.  I was suppose to stop at the car shop again and have something on my car fixed again but I ran out of time and headed home.  I had to head home to help Rhett with his project to see if we could get it done before Monday.  After the store I headed home with Dylan in tow.  We got home and my sister came over to visit with her kids.  We got home and started painting Rhett's project and then Rhett informed me to that his fever is back and he rested all afternoon.  DANG!  I cannot believe I sent him to school and his fever came back!  I am so frustrated.
We finally finished his project now all that he has to do is watch it for 2 days and make up his project board.  Then Monday he will be able to take it to school if he is better and if he is still sick I will take it to his school for him since it is due and it is also required.  He just better be better that is all I have to say.

How is it that this last week was a calm week and I am still feeling like I need to rest and recover from all the stress?

This next week better be better than this for sure!

Wednesday, March 7, 2012

My breaking heart!

So Rhett had his pre-op today while I mean the 6th so it might have been yesterday.  I went running to get him from school.  I get there and they go to get him, but I am not sure if they remember that he has oxygen and in a school with no elevator and 3 floors, I have to help him get everything down the stairs and get him to the car.  Well after we get to the car it was one of those moments that I was super stressed since I was sore from moving things around at my house the day before and Rhett was very not good attitude.  I was frustrated since in my heart I knew that this visit to the doctors was going to be very "bad".  Not in they way you may think but bad as my mind was going through everything that I found out not too long ago.  The more I thought about it the more nervous I got.  We get to the hospital and go up to see Dr. Smith his orthopedic surgeon.  We get there and check in with the front desk, and they tell me that my appointment was cancelled.  HUH???  What the heck why is that?  I never cancelled it.  They said that someone called and cancelled it on 12-8-11.  Then why the hack when I said that I had a pre-op on that day they said yes??  Man I am confused!!  I did call and cancel his surgery that was set up for April but then I set it up on the right day.  So I wonder that because I cancelled that one appointment they cancelled both and then forgot to set up another pre-op for us.  I asked what the heck am I suppose to do.  So the person at the desk that was helping me got Rhett's info and went to talk with Dr. Smith's assistant.  She came back and I asked so what am I suppose to do.  She said that they would talk to us.  So they worked us in and when I saw her she asked how we were doing and I told her that I could do without the drama but I understand.  She told me that we were not the only people that had an appointment and it was cancelled and came anyway.  LOL!  At least I wasn't the only parent there that came to a cancelled appointment.  So we are taken to a room and waited.  My nerves were a wreck!  I was so nervous that I couldn't stop moving.  The thoughts running through my head we so bad and depressing.

My thoughts:  Rhett's PFT dropped.  Why?  Not idea.  They said that they think the medicine will help him but that is only a maybe.  Do a even think that a maybe is a good enough reason to spend between $100-$200 for that every single time he needs a refill?  Can I afford the medicine?  Well if we get it and then it doesn't help then what?  He has taken the medicine better between September and Now then he did before September.  If has taken it more better between those times then why did it not help any?  He has had so many breathing treatments, and the medicine  more then ever before but still his numbers dropped.  I just don't understand.  If we are doing better but it isn't helping then what can we do to help him?  He is going to be on oxygen for the rest of his life and he complains about it often.  What is the doctor going to think about this and what is going to be his thoughts on what he thinks will help Rhett?  The more I think about this the more I want to cry because in my heart I know it isn't looking good.  Do you think he is going to have to break the ribs and pull out the chest cavity more, since all the rings are not holding anything?  Can he do that to both side at the same time or can they only do that one side at a time?  I am sure they cannot do both sides at the same time.  So what side would it be?  It better be the side that has something loose in Rhett's body.  If I remember right we are still planning to put pins in his left knee since his right knee has them already in there.  Oh boy my head is killing me!

When the doctor came in and saw us he asked if we had seen Dr. Uchida (The pulmonologist/lung doctor).  I told him that we had seen him, and he said "So what did he tell you"?  I said "He said that the lung volume is the same but the function of the lungs has decreased".  He told me that is what he had just read, I think he wanted to make sure that I had the same info and he wasn't going to surprise me with anything.  He had such a grim look on his face it was not helping my nerves any at all.  So he gets his computer out and looks over everything.  I did bring up what Dr. Uchida had said about the medicine possibly might help him, but isn't sure.  He was quiet for a while and I let him know that Rhett's had more medicine and breathing treatments between September and now then he had before September.  He suggested that if we give him the medicine and expand the chest have another PFT to see if has helped.  If it still goes down more then they have done everything that they can for him.  I asked about getting all the doctors together to have everyone on the same page.  He said that was a great idea.  I am going to work on getting all of them together.  We went over what the doctor wanted to do and we explained it to Rhett to make sure he understood.  Then we asked him if he wanted to have the surgery and if he was ok with what the doctor wanted to do.  Rhett said he wanted to have the surgery done.  So we are planning on having the ribs broken on the right side and than expand the chest on top of having a plate put in his left knee.  They won't expand the left side or do anything with the left side until a later time.

Sunday, March 4, 2012

Surgerys that came and are coming update

The things that we do as a parent you do many different things to take care of your family.  Lately I have felt torn between so many different things trying to help my family that I wonder if it would help if I were 2 people.

Dylan had surgery on the 28th of February to get the putty he put in his ear on Christmas out and to make sure his ears were all cleaned out and put new tubes in his ears.  I was so worried that the surgery wasn't going to happen because Dylan has been sick for a while.  He has had a cough that hasn't gone away for a long time.  Just a few days before going into surgery he had some crackling in his lungs.  But because he just got off of 2 very strong antibiotics the doctor didn't want to put him on anything.  We tried a breathing treatment at the doctors office and it didn't even help anything at all.  Frustrating!  So by Friday before surgery he was put on steroids and breathing treatments trying to get what he has under control.  When we got to the hospital Tuesday morning I was praying so hard that they wouldn't hear anything in his lungs and that his lungs were clear so they could take him into the OR.  Gratefully his lungs were clear and he went into surgery.  They took him back right before 9 am and as soon as he went back we went down for breakfast.  We were starving since we didn't have breakfast either so that way Dylan didn't feel left out.  By the time we were done with breakfast and headed back to the waiting room they were done and Dylan was ready for us to go back and see him in recovery.  We went right back and he was sitting there drinking some apple juice.  What a cutie he was sitting there like that.  He wasn't quite sitting straight up he was trying to.  Then after a little while he starting coughing and it sounded like he was going to throw up, but glad that he didn't actually do that.  They told us that we could take him home about 10 am!!  Holy cow that was fast I have never in all my life as a parent had a child that had surgery ever left that soon after surgery.  We drove away from the hospital at 10:30 am.  The only thing that Dylan wanted all morning was pizza.  So we got him a little personal pan pizza from Pizza Hut.  He loved it!!  He could not even believe that there was one just for him.  LOL!  He just gobbled it down.  So daddy, Dylan and I hung out together all day.  We went to the store, we took daddy's work car to the shop and then we went bowling. Then we got lunch and did a little bit more running around that we needed to do and headed home.  All the kids were excited to see Dylan they were worried about him and wanted to go to the hospital to see him.  He still has the cough but at least we don't need to worry about him having to go in for surgery right now.

Rhett is working on a science fair project.  He has to turn it in before the term ends and he also has to his math project which was to sign about his VEPTRs and his small chest.  Too bad he didn't get all the requirements when he signed it in front if the school, well not suite the whole school but a lot of 9th, 8th, 7th and 6th grade students.  They had some awesome questions and it looked like they thought about the things they asked.  The term is almost over for him and he has got so much to do before it ends.  I had to show him on a calendar tonight what was all that was due and when it was due.  He just looked like so what about it...  Grrrr...  I cannot believe the attitude that he has sometimes.  Then I remember my youth and me giving my parents a hard time but when I did that I would get in huge trouble but I feel like my hands are tied because there are so many things that I cannot do as a parent that was ok for parents to do when I was growing up.
He had a PFT (Pulmonary Function Test) this past week.  He is results are not that good.  His function has gone down some more, and his volume has stayed the same since I don't know, maybe this last fall.  The doctor THINKS that is he takes his Flovent everyday morning and night that it MIGHT improve.  The problem is that the medicine is over $100 and that is with insurance.  I have it and then he doesn't take it.  I seriously feel like I am wasting money when I get it and he doesn't take it.  I can't hold him down and force him to take it since he is 12 years old.  It is just 2 puffs 2 times a day but it seems that it is too much for him.  LOL!!!  That cracks me up!  Yeah right I know he can do it, he just thinks he can't.  But with this PFT we are going to find out what the doctor is going to do for his surgery coming up this month.  I am nervous since there are many rings on his VEPTRs that are not holding the ribs that they are suppose to be holding.  So I wonder if they are going to have to break ribs or not to attach them back to the VEPTRs.  I am not sure it is all a mystery.  I guess I will find out later when the doctor sees him and goes over everything.  I guess I wish my child was not the doctor's guinea pig and they knew everything there is to know about how to help him.  But then I wonder if he was sent here to help the doctors learn more and help people know that there is always good in ever obstacle that comes your way.

Nikole and Gavin have been a little frustrated with each other, oh wait that is Gavin with Rhett and sometimes Dylan too often.  Nikole is doing great and I have been giving her more responsibilities to help teacher her about life.  I hope that she learns from it.  We are working on trying to get her to get her homework done and then help around the house.  I have had her help with Dylan more she is still a little nervous helping so much but I just remind her that if I didn't trust her I wouldn't allow her to do so much and that helps her feel very important and respected.  So every now and again she asks what more she can do to help.  But then she is again only 10 years old and wants to play often just like all the other kids too.  She is still doing great in school and we only have to tell her a couple of times to get her homework done.  She is one of the best in the house to get her homework done.  She puts forth effort to make sure her hand writing is good and that it is correct.  I am super proud of her.

Gavin has been acting up lately and it has been making me crazy!!  He and his siblings fight more and more but he seems to be the one who cannot control his temper no matter what.  There has been some problems getting him to complete his homework but then when he does it and works really hard on his hand writing he does a great job.  He just told me the other day when he was fighting with Dylan and I asked him if they can just get along, I just about died when "I will only be nice if I get to do what I want to do." came out of his mouth.  I was so very upset with that attitude and informed him if he didn't change it then there were going to be serious consequences.  He can be really great and helpful when he wants like any other 6 year old.  He is doing better in school and his teacher is going to be coming back from maternity leave this month.  I hope he can be on his best behavior for her.  He was happy to have a book from the book fair to give to her.   He loves writing about angry birds and coloring his pictures from the story he has written.  He has even written a letter to all of us meaning to his family, mom, dad, Rhett, Dylan, and Nikole.  They were sure funny and cute.  He wrote pretty much the same thing in each of them.  You are the best in the whole world.  LOL  Best brother, best little brother, best sister best family, best dad, but mine was different he told me that he loved me so much and that I was the best mom.  I wish he thought that all the time, but I guess it comes and goes.

I will have to post later about Rhett's Pre-op appt that is happening soon and let you know what is going to happen and what the doctor thinks would be best for him.
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