AWESOME!!!!

Nikole started swimming on the Jr. Panthers swim team the beginning of October.  She practiced Monday, Wednesday, and Friday.  The first week of practice she had a meet that Saturday and did AWESOME!!!  It was her first swim meet and I was so happy that she did her best!!!

 

This was right after a great race!

Gavin is taking swimming lessons on Tuesdays and Thursdays.  He is trying to beat Nikole so he is working extra hard at swimming so that he can get on the swim team.  Ha ha ha!!  Too bad boys and girls don't actually compete against each other.  They are going to kick some butt when they get better!  I cannot wait to see how they do, and how amazing they will be  together on a team with each other.

Rhett had his surgery on the 18th of October.  Then we had a pleasant surprise and Rhett was released from the hospital on the 20th!  Holy cow!!!  Seriously this was a VEPTR revision meaning they broke ribs on the left side and expanded it out all at the same time.  When he had the same surgery in March/April he wasn't released from the hospital until the Monday following the surgery.  But for every revision he has always been released the Monday following the surgery.  I was so happy that he was doing so well.  He also told me that he wanted to go to school on Monday after surgery to see the faces of everyone.  HA HA HA HA HA!!!!  I bet some of their faces looked shocked that he was at school.  I know I was sure surprised to see him go to school so soon after surgery.  I know that his name was in a few temples and there was family and friends all praying for him.  So he had a few hundred thousand people praying for him the week of his surgery and especially on the day of surgery.  To see his recovery was amazing!!  We went to a Halloween party since the other kids really wanted to go and Rhett was a great sport and went along too.  He did stay in his wheelchair which was fine by me I was just amazed to see him up and out of the hospital.  He went back to school the following Monday with a doctors note and medicine.  He has done great!

The kids picked out costumes that we already had at the house since we didn't have the money of the time to do anything else.    Dylan picked out a dog, Gavin was Darth Vader (again), Nikole picked out a costume that I got for myself a long time ago(was a witch), and Rhett decided to be Phantom from Phantom of the Opera.  Wow was a lucky to get out of this holiday so easy at least that is what I thought until Halloween.  Ha ha ha!!!

Aren't they cute!!

This is less than 2 weeks after surgery.  I am just glad that we had everything at home and we even made Rhett's mask.  So on Halloween this is what I get when Rhett comes home.

Do I looked like I was burned by acid?

Does it cover my make-up?

It was funny to see him really worried about his make-up. LOL!! He went with Nikole, Gavin, and Dylan with daddy out trick or treating.  When he came back he starting peeling off the make-up and when I saw his face it was swollen and itchy.  It was like his whole half of his face was covered in hives.  Found out that the make-up was latex.  I guess that latex precaution that he has had at the hospital is now an actual allergy. :(  How frustrating!  I called the nurse the very next day and let her know so know they know at the school.

By the beginning of November we were on a roll.  All the kids were back in school and things were back to normal, except the kids were playing with the on off cold thing that keeps going around.  Grr... those nasty cold bugs.

I have actually needed to put everything that I do in my calendar so I can see what I do and where all my time disappears too.  Ha ha ha!!  I honestly didn't realize how busy I really was until I did do that and now I am amazed that I have time for anything.

On November 9th I noticed there was some infection in Rhett's incision from this surgery he just had.  I called the doctors office Monday sent some pictures to them and they called out medicine for Rhett hoping that would help.  When we went to go get it from the pharmacy it wasn't there!  Holy cow so the next day when I called the doctor's office we played phone tag all day.  I did find out where they called it in at.  I called the doctors office to see if they could call it in to the pharmacy closer that I asked them to the first time.  After that they did, I called the pharmacy to find out if they got it and find out how much it was going to cost that way I could be prepared.  That is when I was told that the insurance wasn't going to cover the costs until Saturday.  I was really frustrated and found out that it had been filled out at the other pharmacy.  It was a MESS!  But we got it worked out and got it but it wasn't until Wednesday morning when he got his first dose.  By then it was half way up his back and for a few days he was in quite a bit of pain.  I felt horrible for him but there was nothing that I could do other than give him his medicine and hope for the best.  But even by today it was still gooey and yucky red and inflamed.  At least he isn't in pain that I know of but he hardly tells me unless it is really bad.  So I am just not sure if this infection is going to go away on it's own or if he is going to have to go back into the OR to be cleaned out.  Just his luck...  I guess I will find out this week.

Look at my cutie! He was helping daddy clean out his work car. 

I will do a follow up post after I find out what is going on with Rhett and after I get some great shots of the Festival of Trees.

Rhett's Performances

This was the showcase performance(sorry about the quality I am not sure what happened) that Rhett was in at the Shakespeare Festival this past weekend.  I am trying to get the video where you can see it better uploaded it is giving me grief.

As soon as I can I will see if I can get the other videos that we have uploaded so you can see how funny Rhett is, and when I say he is dramatic I mean he is dramatic.  But until I can get that loaded you can watch it this video or you can locate it on youtube at

https://www.youtube.com/watch?v=5831ofwUAag

Enjoy Rhett and his friends!

The big meeting and more

Well we finally had this big meeting that we were waiting for with all of Rhett's doctors and heck it was a long meeting.  It lasted 1 1/2 hours.  One of his doctors could only be there for a 1/2 hour since he had another meeting to attend.  But I was glad that he was there even if he had to leave early.  So my husband and I were the first ones to show up to the meeting since we were told that they had to start on time at 12:00pm since the pulmonologist had another appointment at 12:30pm.  That is cutting it close.  We had the cardiologist(heart doctor), the pulmonologist(lung doctor), the pediatrician(his normal doctor), the orthopedic(bone doctor) surgeon, the geneticist(not sure how to describe his job), one of the cardiologist assistants, two deaf school social workers, and the primary children's social worker(the one and only helper getting the meeting pulled together).  It was crazy having all these people in one room at the same time knowing that they really want to help Rhett and they are working together to do what is best in their minds for Rhett.

The pulmonologist presented his piece of information and then had to leave early as the rest of us discussed everything. His lung volume, his pulmonary function, and his lung capacity all decreased since the last surgery.  But they said that by the graph that we received from the doctor it has only dropped once so they said that wasn't a very good thing to go by.  In order to go by that drop on the graph it would have to drop again after surgery again.  So the doctors agreed that Rhett should have another surgery and then be tested again after surgery to see if he does in fact drop again.  If he does drop then the doctors all agreed that he wouldn't need anymore surgery and we go into medical maintenance.  Meaning a hospital bed for him to help make sure he is sleeping well and wearing his bypap, taking his heart medication, and taking his lung medication everyday.  They talked about the possibility of Rhett maybe being depressed which he has been tested for and is not.  We are still trying to figure out how to help him.  I have a few at least 3 social workers helping me which is great because trying to do all of this by myself was so not going to happen very easy or fast.  We finally got out of the meeting about 1:30 to 2 pm.  It was stressful at least for me anyways.

After leaving we had been told to bring Rhett in for a pre-op appointment so they can decide what it is that the surgeon wants to do.  We set that appointment up since he is already on the schedule for surgery.  But the pre-op appointment was set up soon after the meeting, but the worst part for me was that normally I know a month in advance what kind of surgery Rhett or any one of my kids will be having but this time it was not that much time.  So by the time the pre-op came around I was super nervous.  We went in and talked with the doctors had the normal x-rays taken and an extra to get a bone growth survey done too.  The bones are growing at the same speed he is aging.  That is a good thing.  The doctor then told us what he feels would be the best thing in his mind to do for Rhett.  It was Rhett, daddy and I who were in the room talking discussing the surgery.  The doctor said that he would like to revise the left side meaning breaking ribs on the left side of his body and expanding and pulling the chest out.  After the doctor told us all of this and daddy asked some questions I turned to Rhett and said, "Ok Rhett what do you want to do, the doctor said he thinks this might help if he revises the left side and doesn't do anything to the right side.  What to you think?"  As he looked at me I just wanted to cry seeing his little mind working to understand he is deciding to have surgery or not.  He nodded his head.  I had to clarify, "So you are ok with that and the is the surgery you want to have?"  He nodded again and I looked at the doctor and said, "Did you get that?  He is willing to do the surgery."  The doctor said ok and we are all ready to go.

Now the wait is on.  Surgery is approaching and it is going to be a big one again!  It really sucks but I guess there is no way around it. 

I also have to figure out some fundraising things that I can do with my family to help us get the money we need to finish our basement.  That way I can move Gavin out of the bedroom Rhett and he share so that way we can get the bed that Rhett needs to have in order to sleep better at night.  I could totally use some ideas and help.  If you have any ideas I would love the input.  I will be talking to someone at a bank or something like that hopefully tomorrow to see if I can open an account to have all the money that is raised placed into, and as soon as I do I will have something on my blog where people can donate.

I will update after the surgery it won't be a long wait I promise.

Nerves are going to end right?

It is coming up the meeting with all the doctors and to be perfectly honest I am scared of what the doctors are going to say.  We are getting the orthopedic surgeon, the cardiologist, the pulmonologist, geneticist, the pediatrician, a few social workers, and a case manager.  I am just wondering what the doctors are going to say and what that will mean for us telling Rhett the decisions that he is going to have to make.  The bad part is that I am going to have to give all the information that the doctors have to Rhett and then asking him what he wants to do with that info.  Then I and daddy will have to enforce what Rhett's choice.  How many people have said that they let their 13 year old make the decisions about their life.  That is basically letting him decide if he is ready to be done with everything and let life run it's course or keep going and doing what we have been doing all this time.

Oh man I am so nervous....  I would love to know what others would do in my place.

Little quick update

Dylan was so cute the other day he walks in and says to me, "I need my oxygen."  When I turned and looked at him I asked why he needed that he looked at me and said "I needed to be like Rhett."  He was such a cutie getting his oxygen out and putting it on.  Then he got so frustrated when his cord would get stuck on the things on the floor and the walls.  It was super funny.

On a totally different note...  Gosh waiting for doctors can be so stressing.  I am still not sure when we are having this huge meeting.  I think that they are going to have the meeting this month but man the stress is mounting.  I cannot wait!!!

Rhett is tired and the teachers have noticed and have told me that he doesn't even want to walk from his chair to the board.  That just about broke my heart when I was told that.  He is struggling in school getting things done and turning them in for full credit.  Why can't he just get stuff done on time?  He has been treated like any other child and that is how it is going to stay as long as possible.

I have to post pictures of everything latter today.  It is going to take me a while to get them all up so please be patient.

It is so hard!

People have often asked how I am doing and to tell you the truth I just want to cry!  No there are very few people who know what it is like facing what I face every day but most of them are different issues since I don't know of anyone who has what my boys have.

You have no idea how hard it is to talk to these doctors and get as much info as you can and then understand that said info.  But when the doctors finally see the results and they can see how bad the results are... you still have to smile because you have your children right there and there is nothing that you can do about that but the doctors face drops into an almost grim face.  After going through what I have to go through I often tell people that I don't care, I also will tell people what I think most of the time if I am in one of my moods that let's me just get it out.  I feel like such a horrible person sometimes for being honest and mean with people, but heck the petty problems that they face compared to mine are so just that petty.  Yes I know that there are many people out there that have their challenges and I know it is hard for them, I understand.  I know everyone has problems and they are all different, and that is a good thing.  But when you ask for my opinion and you want me to be honest do be so put out if I don't tell you what you want to hear because I can only take so much before I just snap.

You have to understand where I am coming from.  We struggle everyday with just getting by not only with money, food, and everyday things but also with the health of our boys.  No we don't get help very often because we know of many people that could use it, and feel that they could use it more than us.

But man when we get the rug pulled out from under us so many times often I am ready to throw in the towel and say "screw you, I am done!"  How many times do I have to watch the faces of doctors drop and then have them tell me that they don't know?  I would love a straight answer for once instead of this I don't know, or we might be able to...

So Rhett asked me the other day when it was just him as me... "Mom if I pray hard enough and want it really bad and have the faith to get it will the lord give me the ability to fly?"
As I looked at him and tried not to laugh since I wouldn't have thought he wanted to fly, but then I remember he does love planes and wants to go on them more.  But because of fund not going to happen anytime soon...  I looked at him and said... "No sweetheart.  The Lord doesn't have the power to give you the ability to fly.  You see, people were not created with wings to fly on their own and that is why we have airplanes and not wings."
After he thought about that for a little while he said... "Well if I pray really hard and have the faith will the Lord be able to help get me off oxygen?"
As I looked at him and wanted to cry I said without crying..."Yes honey the Lord has the ability and power to help you get off oxygen.  It might not be the answer that you expect but he can do that if that is what you really want."
As I thought about that answer that I gave him I wonder if he really knows what is going on, I mean he is a smarty pants.  He even told the doctor that without oxygen he turns blue.

What would you do if you had to face everyday watching your child not breathe right and then find out and have the knowledge that the lungs of your child are not functioning the way that they are suppose to meaning that the lungs are slowly not working anymore?  How would you handle it?

Happenings

I know it has been a while since I posted and there have been many things that have happened.  So forgive me while I catch up on everything that has happened.  Let me see where was I???

So the kids have been going stir crazy being at home almost all the time.  Swimming lessons for Nikole and Gavin was through the month of June and into July.  It has been hard on Rhett and Dylan watching their siblings swim and they have to sit out.  Dylan has had it really hard not wanting to go and always saying swimming lessons for him.   Luck for them they started a set of lessons the end of the month of July.    While Rhett was at scout camp with daddy and my car we had to ride our bikes to swimming lessons which wasn't bad it was great seeing Nikole, Gavin, Dylan, and I go to the lessons.  Of course Dylan was in the bike trailer and Gavin was just learning to ride without his training wheels.

Rhett had his exercise study the end of June and he does get higher levels of pressure in his lungs.  So they have put him on some medication to help with the pressures.  He is still taking his breathing medication.  We are also working on getting him to wear his bypap, but he really doesn't like it since it blows air out his ears.  I hope that I will be able to get him in to the audiologist sometime to get really good ear plugs just for him to wear at night.  I hope, but I am not sure he will since he loves hearing the music playing at night. 
Rhett has some very special friends in a non-profit organization that we are with, and they emailed me and asked if they could do a picture for him.  Mural is more like it, since when they contacted me they said the picture would be about 4 feet by 6 feet.  I measured the wall next to his bed and it was a perfect size!  They said they wanted to present it to him at the motorcycle ride that they have every year.  He was so excited!  When they presented it to him we just couldn't help but grin.  He loved it!!!  They said that they needed to get it framed and then they would deliver it.  While he was at scout camp the first week of July they called and told me that they were going to be able to deliver it!!  Holy cow!  When we got home from swimming lessons they were there waiting for us.  How exciting Rhett was going to to come home and his mural was going to be at our house.  He had a lot of fun at scout camp and was able to do many things.  I was just happy that he could go since it is lower in elevation, so this was the first scout camp that he was able to attend.  He came in and couldn't stop smiling when he saw the mural.
As he was taking swimming lessons these last 2 weeks he has learned to float better, elementary backstroke, and front float.  He still cannot go very far since his oxygen cannot let him go very far but still he had a blast.  He has had a great teacher that is so excited for him to progress even so slightly.

Nikole was taking swimming lessons through June and half of July.  She is starting to swim laps!!  I am super excited!!  I thought that my kids would never show an interest in swimming like me.  I told my kids that when they could keep up with me swimming then I would take them swimming with me.   She has been a good helper.  She has been spending sometime with her cousins in Idaho and she loves it since they have a cat and girls!  She is a little homesick but you know that just means that she really loves us!!  She loves drawing pictures and is a great little artist.  She draws pictures for Dylan that he just loves!  There have been a few times that she doesn't want to help and it makes her frustrated when she has to push the wheelchair, or watch her brothers.  I just guess that it is just because she wants to be a normal sister.  I can understand.  She is going to be starting 5th grade this fall and I know she is sure excited to be going to school again.  I guess she has had way too much summer.  Ha ha ha!!!

Gavin is doing great at helping around the house and being a great big brother to Dylan.  Every now and again he just doesn't want to be the big brother.  As he had swimming lessons, he is actually getting better at learning to swim.  He wants to swim better than Nikole.  I asked him how bad he wants to swim better then her and he said a lot.  I told him that he needs to practice lots, so that is what he is going to do according to him.  He can be a frustrating little skinny dude but he is sure a cutie when he isn't throwing a fit like a normal child.  He will be starting 2nd grade and he is looking forward to it I think.  LOL!!  Ok so I am a little nervous about him going since he has always had a little bit of a hard time at school.  But this year it is going to be better, thinking positive thoughts.

Dylan is a cutie!  He has sat patiently through Nikole's and Gavin's swimming lessons.  He had a few out breaks of sadness because he wanted to swim.  But who could blame him I wanted to go swimming too. :)  He was great riding his bike, but while we were riding to and from swimming he had to be int the bike trailer since a little over 7 miles on a 12 inch bike is just too far for that little boy to go.  He also had a exercise study and I am still waiting to hear back from the doctors about the results.  He is funny and he loves to dance.  He was telling me the other day "I am shaking my booty." and I wasn't even sure what he was saying until he had said it at least 10 times and then he was showing me.  What a crack!  He has been saying things that Gavin has said so not I am in the process of correcting both of them.  Of course it is really hard to understand what he is saying until he has said it  over and over again, but still.  He loves running and he always wants to be first.  I think he has learned that from the other kids too.  I just found out not too long ago that Dylan's friend from school Autumn is not going to be at the school next year.  I don't have the heart to tell him since he has already had a few of his friends graduate and move on the the next school.  But there are so many deaf kids at the school they have no room for the hearing kids.  He is going to have a broken heart when he finds out.

I will post some pictures next to catch up on everything that has happened.  I hope that I have a video of Dylan dancing that way you can see him shake his booty as he calls it.

The boys are going to have a few more appointments this month and we are going to get some answers to so very big questions.  I will go into more detail as soon as I can, but for now this is all I have.

End of School

Well the end of school came so fast I hardly had anytime to breathe. And now it is almost the end of June!! Oh crap! I have not had time to update this in a while. So I guess I will have to start at the beginning of June.

Dylan's last day of school was May 31st. He had a cute little graduation ceremony that Rhett attended since Rhett couldn't go to the field day. Rhett and daddy took lots of different pictures and it was sure cute. He got the little explorer award or something like that. He was sad when he was finished with school and kept asking for his friends.

Rhett's last day of school was the first of June and he was late to school because they were planning a surprise birthday party. I helped his teacher decorate the room the night before and it looked great for being a classroom. Actually I dropped him off at school late so that way everyone was ready for him. It was like a great big party for him and his school friends. I know not every junior high student has this kind of thing but I am glad that he does. On June 4th I took Rhett and Dylan to see some of Rhett's friends and they had a blast!!! They were great and it was fun for everyone.

On June 6th Was Rhett's birthday!! He is now officially a teenager!! We had a party for him and it was fun, and the kids had fun well at least I think that they did. LOL!!

The 6th of June was also the last day of school for Gavin and Nikole! Now all of them are out of school.

Then it was some appointments starting on the 7th with the dentist and the 8th for a well child and also another follow up since Dylan got croup again!! I could not believe that he had it not even a month after he had it before. The doctor said that Rhett looked great and cleared him to be able to go to scout camp. Which is great for him and makes me more nervous like any parent. LOL!! Oh well. Next was a cardiology appointment on the 12th. It was a exercise study and he did great for him but... We are still waiting for the doctor to call and give us the info on what the test results showed. Then there was another doctors appointment on the 19th for Rhett lucky for us it was just a normal orthodontist appointment.

Nikole and Gavin started swimming lessons on the 18th so hopefully they will be swimming better before the end of summer. LOL!!

I promise I will post pictures of the end of the school year as soon as I have them, since I don't have most of them.

The fire that broke out not even 100 miles from here have made it hard for our family to be able to do anything outside for obvious reasons. I am sad to have to cancel so many things but there is nothing that I can do about that since the fire is still there burning. Even though we are stuck inside my thoughts and prayers go out to those who have been forced from their homes. We still have appointments coming up and hopefully they will all go smoothly.

On a side note... The last post was just info I was frustrated and needed to vent, and also it mostly happens with kids. No one that I know personally acts this way towards us, because they have gotten to know our family and they don't treat my kids "weird" like others have done. I will update next with photos!

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!

Update

So I get a call Friday from the pediatrician and he tells me this, "The doctor that looked over Rhett's x-ray from Wednesday and compared it to the last one that he had taken said that the hazy stuff in his right lung is worse than it was when he was in the hospital.  There is also more fluid gathering around his lung.  The left side looks better though."  Man this is going to be a conversation.

He continued, "I want you to take him in Monday to the hospital and have another x-ray taken to see what has happened since Wednesday.  I am sending the order up now." 

I reply, "If it is worse meaning the fluid build up around his lung or even the haziness in his lung than what am I to do?"

He sighed and said, "Well if that is the case we could be looking at having him back in the hospital.  But we are going to have to watch this ever so close."

As I am sitting there trying to absorb everything that is getting dumped on me as I try to shield my family, thinking 'Oh that really SUCKS!!  Can I swear a few times???  No fine I will smile to the world and everything is going to be fine.'  I ask, "What time will I have to take him in?  Since they are testing and I cannot pull him from school he has already missed some tests and he really needs to take these tests."

"You might be able to go in anytime, but they should be calling you.  This surgery has been one of the hardest ones that he has gone through huh?"

Me thinking 'Really?  Not so sure since that first one was a HUGE one and he was in the hospital for 2 weeks.'  "You might be right."  'Seriously I crack myself up!

So more test needed.  More blood drawn in a week and a half hoping that the iron helps, but seriously not seeing anything yet.  I thought Iron helped fast, but maybe I am giving it too much credit.

This is my life I have apparently signed up for this and I handle it the best I can.  If I don't smile and laugh even in sad moments I cry and I have a hard time stopping.  I know that the Lord is in control even with this, sometimes that helps but there are those moments that it hurts.  I try to always remember that the Lord has suffered my pain but still I feel it too.  He knows what is best and I hope that I can always remember that.  I listen, watch and read things to help me get distracted and take me out of my reality.  Like fiction, cartoons, and zumba.  I know I should read, watch and listen to uplifting things but sometimes that brings out those feelings that make me cry lots.  They bring me back to reality, when I just need a break.  I hope that I am doing a good job, but I guess I will have to wait and have the Lord tell me one day, "You were sent to earth and you did a great job."

Family Pictures

Well the Young Women were doing a fundraiser today for camp and what they were offering was too good to pass up.  They were doing family pictures up to 8 poses and walk away with a CD for only $20!!  Since we normally cannot afford family pictures we just use our camera and have someone take our pictures or one of us is usually missing from the pictures.  So we decided to splurge on pictures today and help the Young Women raise money for camp.  It was so much fun but we got some great pictures too!  Here they are.  Some of them not so great others AWESOME!

Not sure if I like this one.  I guess it could be worse, but my kids sure look cute!

Honestly this one isn't any better. LOL! Maybe I am just a hard person to please since I am judging myself.  I do think it is cute that my older boys are sitting the same way. :)

Then we have this one I think I might just like this one. LOL!!

Ok So I like this one too I think. :)

So I just love this one!! My kids are so super cute!!! :D Proud mom moment!! 

This is also one that I just LOVE!!! 

Not smiling so much but still cute!! :)

Me and my sweetheart. Not sure I like this picture. I am so critical of me, why can't I get over it? 

I really like this one of us more then the other two. 

Last one. Still I like the other one better. LOL!! 

But for just a little bit a money to help some wonderful girls get to camp these were great!!!  The pictures have been long over due and I am happy about the results.  I hope they do this every year that would be totally AWESOME!!!  I will have to get more people there and make it super busy for them if that happens.  he he he!

Not happy!

Man I am one mad momma!!  

I have had this gut instinct that there was something wrong with Rhett from the time he was in the hospital and wasn't eating anything.  Normally he is eating often and he is excited to eat pudding, ice cream, and much more.  I mean heck he has a menu where he can order anything that he wants from the book anytime from about 7 am until 8 pm.  But no he wasn't eating hardly anything.  That is so very weird for him.  So when I brought it to someones attention like a nurse, or a doctor they would just tell me that he is doing ok and leave it at that. 

They had done a crit test(basically a test telling how much iron is in his body) Thursday after his surgery and then again Friday really early morning and it had gone from 36 to 31 which is really not good.  Sent the nurse into a little fluster trying to help him.  They had to contact so and so and they told them what they found asked if he needed a certain thing and found out they are just going to watch him for now and see if it goes up on his own.  Well they checked it again I want to say Friday afternoon or Saturday.  It had gone up to 33 from 31.  That is good at least it is headed the right direction.  They decided that they didn't need to take another test since it was headed up.  Then it was work on getting him up and moving so we could get home.

Saturday he showed his back and he had this hole in his back on the site where he had surgery near his shoulder.  It was almost 10 pm so I decided to put a band-aid on it and wait until Monday to talked to the doctor.  So I called this Monday and had to take him in Tuesday morning.  So I took him in and the hole had started healing very well so the doctor said that he is healing well.   I told him that he still isn't acting himself and describe what has been going on, he said to give it time.  So I gave it less than a day and talked to my husband about it and when he said that Rhett was pale and I should take him in I decided that I would and called the doctor Wednesday.  He said to come in and that he would check Rhett out and possible get a crit again.  The doctor asked me when he had surgery and I told him that it had only been about 2 weeks.  Told the doctor my concerns and informed him that he is still not acting himself.  Not eating very much, tired a lot, weak, etc...  So the doctor listened to him and looked in his ears, nose, mouth... the normal thing doctors do.  He said that he was breathing harder then normal and asked me if I thought he was and I said yes.  He said he has had a little infection and need to put drops in his ear, also said that he wanted to get some x-rays too.  Then he looked at Rhett and said something like, 'Rhett we try to avoid this, but we are going to need a little bit of blood to do a test.  You have a choice to either have it taken from your finger or your arm.'  Of course he said finger.  So we headed to have the lab work done then the x-rays done.  Some of the lab work came back before we got back from getting the x-rays done.  So I found out that the crit was 33 and he needs to be on iron.  Also there is some hazy stuff in his right lung.  Not sure what it is or what it is from, but the doctor is going to have the hospital person compare the x-rays from Wednesday to the ones he had taken in the hospital when he was up there for his surgery.

So apparently his crit never went up after they last took and tested his blood in the hospital!!!  What the crap!!!  Why didn't anyone listen to me while we were at the hospital???  I have a PhD in Rhett they should take me more seriously.  So now we are on iron and ear drops for now and will find out a little later today about his lungs.  I am not sure if this iron is going to work but if it does great, if not... I don't even want to think about what would happen if it doesn't.  I guess I will have to keep you posted.

I QUIT Spring Break!

So my spring break was a little like living a nightmare.  Grrrr.... 

Monday Rhett came home from the hospital, which was the first day of Spring break.  Of course he was really sore and needing to sleep on the couch since he can lay up not flat.  Poor boy, it has got to be so hard on him to have to deal with all of this.  But it was nice to be home with all the kids and help Rhett recover.

Tuesday morning Dylan was up at 4 am throwing up.  Poor boy.  Why is this happening?  He isn't suppose to be sick!  But then he was fine all day long.  No one else was sick at all.  Nothing all day and then that night in the middle of the night he was throwing up again!  I was thinking that maybe it was something that he ate but everyone ate the same thing.  Then he was throwing up all Tuesday. :(  This sucks!  I hope no one else gets sick.

Then Wednesday I decided to take Dylan to the doctor for his vomiting and found out that he had intestinal flu.  Man that really sucks because Rhett and Nikole had a orthodontist appointment.  So I prayed that Dylan would not be sick anymore and headed to the hospital for the appointment.  As we were there Rhett got another bracket on one of his teeth, and Nikole had a visit with the doctor.  She was terrified that she was going to get them that day.  LOL!  She was crying and everything.  He said that she doesn't need braces yet but she will need them sometime.  Oh yea!  After we left there we headed to home care to see if we could get some non-tippers for his wheelchair.  Right before we turned on the street to home care Dylan woke up from a little nap and threw up all over himself and his car seat.  Poor baby!  I was really hoping that it was a night thing but I guess not.  Now what to do.  I take Rhett in and they tell me that they have to order them since they don't carry them.  OK why don't you carry them they are just attachments to the chair, and it isn't even a special order wheel chair.  It was a rental until the insurance bought it for us.  So I get back in the car and ask Dylan if he needs a bucket or if he can wait until we get home.  He said he needed a bucket.  So I went to a different office at home care to see if they had a bucket.  They did and Dylan looked so much happier with the bucket even though he was gross from throwing up earlier.  So after we left there we headed home to clean up the house and car.  All the kids wanted to clean the house and not the car.  LOL!  Don't they realize the car is smaller than the house?  Oh well I took all the car seats out and washed them all.  But after I took them out I work at cleaning up the car a little bit and then I took my car to the shop since the brakes seemed to be smoking all the time. :(  I hope my car doesn't blow up yet.  But now that the car was in the shop there was no where that I could go so we all stayed home and cleaned.  Wednesday was a long day with 2 sick kids well only one that is recovering and one throwing up that is what I meant.

Thursday I was hoping that I could have taken the kids to a fun thing happening that evening, but Dylan by that afternoon was telling me that his tummy hurt and he was sick.  What the heck he was fine ever since Wednesday afternoon.  He wasn't throwing up but he just didn't feel well.  So I had to cancel the fun thing that we had planned but my sister did come over with her kids and played.  So Nikole and Gavin had a ton of fun with her kids while Rhett and Dylan just relaxed and tried to feel better.  I did get my car back that day and found out that my brakes have been rubbing the whole time I was driving. :(  Oh well at least it is fixed ad now I have a working car I do believe.  Good thing I got it back since I needed it Friday.

Friday came and Nikole had an eye doctor appointment first thing in the morning.  Since I had washed the car seats I had them and need to put them in the car.  Trying to get all the kids up and out the door in time for the appointment.  As I am headed to the car with the car seats I had Gavin take his and Nikole take Rhett's to the car and I carried Dylan's.  As I was trying to open the car I hear a low thump.  In my mind I am saying, "Are you serious?  This cannot be happening!"  I turn around and Dylan had fallen down some of my front steps and hit his head on the concrete.  His poor head!  Nikole had run over to help him but started to back up with a frantic look on her face.  Sure scare Dylan a little more will you.  I hold him while I take the garbage cans out to the street.  On top of that we were running late so I couldn't drop my kids off at my parents house so I got to take all of the kids to Nikole's appointment.  That was something I wish I don't have to repeat anytime soon.  Thankfully Dylan was better he sometimes still told me that his tummy hurt and that he was sick, but no throwing up!  Yea!!  The eye doctor said that Nikole doesn't need glasses yet (her sigh of relief) but she is headed that way.  So she will need glasses sometime probably soon but not yet.  By Friday night I had declared that spring break was over!

Just for the record I am never having spring break ever again!!

This was Dylan Friday.

It is now starting to change color to purple, green and yellow.  At lest it is getting better.  The doctor saw him Friday since the school nurse said I needed a note for Rhett to return to school.  So I stopped by the doctors to get a note for Rhett and have the doctor also see Dylan.  He said that I needed watch him and just make sure that he doesn't injure it more.  He did say that there was trauma to the head. REALLY?  LOL!  I am so glad that he told me. :)  We did go to U-fit Friday night and Dylan had such a fun time but I think that is because daddy was there and playing with him.

Hospital Life

So Rhett had surgery this past Thursday and because nobody really comes with us I figured I would take some pictures and show you what we go through when he has some major surgery.  Fair warning some of these pictures contain things you might not want to see but I made sure they were all appropriate and nothing too graphic I think.

Our day started early we had to be at the hospital at 7:15 am.  Dang the one day that I could sleep in, and I have to get up super early.  Oh well I guess the other kids had school anyways.  So I told Rhett to get ready to leave since he had to leave our house about 6:30 am just to be on the safe side.  He took his own sweet time getting ready which was frustrating since I really didn't want to be late.  I hate being late to things hence I have the clocks in my house set ahead at least 10 minutes.  LOL!  Oh well.  As he was finishing I figured I would start with the pictures.  This was before we left to head to the hospital.  How is it my kids are this happy in the morning?  I just don't get it.

Gosh they look happy.  Gavin didn't want to participate since he had just gotten up he was kinda grumpy.  Oh well missed out on a cute photo.  Nikole and Dylan are sure cute!  After that we were headed to the hospital.  Daddy said that he was going to stay home and make sure all the kids got out the door for school and then come up to the hospital.  Great!  I do that everyday and sometimes it really sucks.  So I got to the hospital with Rhett on time I was surprised since we were running late according to my clocks.  LOL!  It is a good thing that they are at least 10 minutes early.  So I check Rhett in and as I did that this is what Rhett did.  Look at that concentration.  LOL!

He clams that this is the only thing he comes to the hospital for and the best part of it too.  What a funny boy.  Well I checked him in and then gave him the buzzer.  You can see it on the arm of the chair.  I told him that when it buzzes it is time to get all the vitals and get ready for the surgery.  He said ok and put it in his pocket.  The funny thing was that the nurse called his name before the buzzer went off. LOL!  Oh well this was what followed.

After that we found out he is heavy and for the first time in his life he is over 4 feet tall!!!  He smiled so big when he heard that.  LOL!  I cannot believe that he is finally over 4 feet tall.  He is getting so big.  We were then taken to a room where he really gets prepped for surgery.  He is so goofy when he knows what is going to happen.

And now he has a band!  See that smile?  What a funny boy.  I was teasing him.  I like to tease him since I can and he understands that I am not making fun of him I am trying to get him to smile and it works every time.  Now it is time to change.

I asked him if he wanted me to leave and it took him a while for him to answer. He said yes and I left and really wanted to take a picture of the nurses station but didn't want to get in trouble. I stood there and waited for Rhett to open the door and let us all know that he was dressed and ready for people in the room. When he did we had fun with the camera while we waited to be moved to another holding cell, oh I mean waiting room. LOL!

Really like this picture! It is cute! My first cute self portrait. LOL

Than we are off the the next waiting room. There are at least 3 waiting rooms for pre op here at PCMC.  There is one where you wait before you check in for surgery, then there is on right before they go back for surgery and finally there is one for the parents to wait while their child is in surgery.  Rhett sure knows his way around here like no one else.

This is the hall way looking back to the post op area. We walk down that hall toward the OR when they take Rhett back.



This is the last hall way to the OR.  Past the post op area and waiting rooms.  This is where it gets emotional and you know soon your child will be with doctors and nurses.  At least the Lord is watching since they don't allow parents in there.

This is the door to the OR.  We walk up to this door and let him go with the doctor.

As you can see the first thing that Rhett does when he gets there is get the game.  He tried to stand as long as he could but it is a long wait and he decided that he should sit.  LOL! This last picture is the anesthesiologist talking with Rhett about his game.  He is such a great doctor!  He really cares for my boys, since he has worked on both of them.  He has a gift and I am glad that he shares it with our family.  When the doctors start coming out that means they are almost ready to take him back.

OK so this hardly ever happens. We see both the surgeon and the anesthesiologist at the same time. So here is Dr. Smith our surgeon and Orthopedic doctor and Dr. Hannon our anesthesiologist. They are really good guys!

Dr. Smith had just marked up Rhett so that way they get the correct sides, since there has been a mix up before.

This is the last picture before surgery. He had taken some meds so he was a little loopy and he was still playing games. LOL!

Then we head down that lonely hall way about ready to give Rhett's life over to the Lord and in the hands of these men. Yes it is a little nerve racking but I know that the Lord is in control of everything. Even the things that are really hard to deal with but I know that the Lord will not give me more than I can handle. There was a time that I would just break down and cry after walking that short walk to the OR door, but now I say a quiet pray letting the Lord know that he is there and that I have faith everything will turn out the way it is suppose to no matter what the doctors do. I still have a lump in my throat and a urge to cry but I don't maybe because I know that it isn't going to help anything.

After we go and say good by at the OR doors to Rhett we head to the final waiting room. We check in and then let them know we are going do to eat since we never eat if our child is going into the OR. It just isn't fair if we ate but they didn't so we just don't eat until they are in the OR. We grab some food and head back to the waiting room. As we sit there and wait in the final waiting room my nerves are shot and my body finally relaxes and most of the time I collapse from exhaustion. I rest knowing that soon he will be out and I will have to be there for him no matter what. But the chairs suck to rest in just saying.

Finally the surgery is over and the Dr. Smith comes and talks to us about what he had done and let us know soon we will be able to see him in the PICU(Pediatric Intensive Care Unit). We actually watch the clock at that point since often the PICU doesn't call the waiting room to get the parents sent down there. After about 5 minutes Dr. Hannon walks in and also talked with us. He tells us that it is again a very difficult intubation like we had talk about before surgery. He let us know that the tube was out and he is in the PICU and we could see him again very soon. We gather everything and head down there. I cannot wait to see him knowing what the doctor had to do. I mean Rhett told the doctor yes I will have this surgery so me and daddy just enforced what Rhett had decided to do. Finally they were ready for us to be by Rhett's side in the PICU. We head in there and this is the first time he has a room right in front of the PICU doors! This is what we found when we got there.

My tired man!  He was like this until Thursday night kinda late.

The little thing with the blue square is his pain button.  He gets this from the pain team after surgery.  That way they can give him some pain meds through his IV as needed and make sure he doesn't get too much.  He was getting a sister drug to Morphine, I cannot remember the name of the med.  But we had to convince him to push his button.  Just shows he still hates medicine.
We found out that the right lung had collapsed a little and he was struggling.  It was a good thing that he was on a c-pap already.  There was some air trapped in the plural space and the JP drain that he normally has was filling up with air and so they hooked it up to the suction machine trying to get the air out and the fluid that it was suppose to get out anyways.  Lucky for us right after the x-ray Dr. Hannon walked in to check on him.  I told the nurse if they thought they needed to intubate him there was the doctor that could do it.  Dr. Hannon did inform the nurse that he is a very difficult intubation.  They finally got all the air out and he started to do better and wake up a little.  Happy to have that little bit of drama over now on the the next drama.

He woke up for a little while and watched some tv but then it was right back to resting.  What a good boy.  LOL!  At this point I realize that his home oxygen tank and regulator are missing.  They were last seen heading into the OR with Rhett but they never made it out.  I let the nurse know and they contacted the OR hoping that they could find it but yet to no avail nothing. :(  Well we cannot leave without it so they better figure out something before we have to leave.

Right after this picture they found out that the lab work that he had done had dropped and so they decided that they needed to deal with the drain again.  They hooked it up to a different suction machine but didn't realize that it was on a normal setting for suction.  So when they turned it on pain shot through his body and it was very intense.  That poor boy suffering like that.  Not sure what I could do to help him since they had promised it would not hurt him and then it does.  Oh man that sucks!  So they got permission to give him more pain meds to help him sleep better, since he was in too much pain to sleep at all any ways.  It was great to see the relief on his face to the point that he could relax and he finally fell asleep!

Then Friday comes along and it was a very long night.  I was just glad I could finally sleep.   Since I was interrupting for Rhett all day and night for him Thursday after surgery.  I was exhausted and it was great to sleep even if it was in a reclining chair that sucked and was not comfortable at all.  In the Morning the asked about playing video games since that is his favorite part about going to the hospital anyways.  Then he had a great volunteer that came and played with him for a little while.

Not sure how he can pull of such a great smile in the condition he is in but I love this picture. I told him that I am documenting the whole thing and he just smiled. I told him that not everyone comes to see him through surgery but this is going to give them a good idea what we go through up here.

This sweet dog and owner were awesome. It made Rhett's day to be able to give the dog a treat and see the dog say a little prayer for him.

After seeing the dog he played games with Caleb(the name of the volunteer) and had a great time. It was cute to see them playing and Caleb letting Rhett win if he wasn't going to win. When Caleb had to leave I played with Rhett for a little while but then I told him that he needed to take a break and rest. He wasn't to happy about that but there was nothing that I could do but let him know that his body needed to rest in order to get better. After he took a break he had another visitor come and see him. She is a professor at the U of U named Hester Henderson. She is the director over U-fit and such a wonderful person! Rhett was so sad that he didn't see her Thursday night so he was glad that she came Friday. Soon after she left they had decided that Rhett could be moved to the floor which means out of the PICU! (happy dance) So as soon as we got a room number I called to let daddy know that he is being moved and that he can bring all the kids up to see Rhett.

We got to his new room and was happy to see there was somewhere for me to rest better than the chair that I rested in the night before. I let everyone that I knew that Rhett was out of the ICU and into a room. We had a couple who were waiting for their son to get out of surgery come by and brought him a balloon.
We have known this family for a while, they are with Angels Hand's Foundation like we are. You can see there site by going here: http://angelshands.org/ and you can see more at what this group is all about. They are such great people, anyways.
But after they came when their son came out of surgery he was placed in the bed space that Rhett just got out of in the PICU. What a surprise that was. We were happy to have a room where it was less noisy and more room. The rest of the kids came up with daddy and they we sure happy to see Rhett and know that he was ok and recovering. They sat there and watched movies with him and had such a fun time running around. It is really hard keeping all 4 kids contained in one room for a long period of time. Daddy's parents have come to visit a few times and Rhett seems to love having visitors. My parents have called a few times along with my brother since my parents are visiting my brother and his wife out of the country. They have Skyped with me several times since we have been here. They wish they could be here to support us but it is good that they are able to visit my brother too. I have an amazing family. Well we get all settled and then we were able to relax a little hoping that they will find the oxygen set soon.

Wide awake and playing video games already!

Nikole made this great poster for Rhett Thursday at the after school program.  She called to tell me about it and I told her to bring it when she came to visit.  That made her so excited.

Good night kids!  They are headed home from their first visit.  What cute kids!!!

At night I have been leaving the movie station on for kids that way when they come in and wake him up he actually falls asleep faster then he would otherwise.  I think he really enjoys the noise and it is a comfort to him.  I am good at letting him have those comforts.


Saturday finally get here and we get more visitors!!  We had the Star family come visit, which was super nice of them.  They brought him a game, some candy and a card.  They stayed for a little bit and visited.  They have got to be one of the most thoughtful families that I know of.  After they left Rhett turned to me and said, "That was really nice that they came".  I hope that he realizes that others do care for him besides family.  He has never had so many visitors for a very long time.  He has missed it.  Most of the time it is just family, but having others come has been so good for him.  After they left we waited for PT (Physical Therapy) to show up which they did around 2:45 pm and they worked with Rhett for 30 minutes.  We didn't get too far it was stand, walk to the door, turn around and walk back to bed.  But after that he was out of it for a few hours. While he was sleeping my family came and of course the kids all went a little wild, but as soon as they saw Rhett sleeping they were quiet and let him sleep.  After they came my aunt Katre and uncle David along with their children Tolen and Lynea came to visit us.  They were in town and stopped by to say hi.  It was great to have everyone there at the same time.

What is he going to play today?  Hummmm......

Lunch before PT.  Not that good if you ask him.  LOL!

Up and walking!   Having a really hard time but at least there is someone here to help.

What it normally looks like at the hospital when we are there.  Kids all here and watching things that they could never watch at home since we don't have cable.  LOL!  Happy that they love Rhett enough to come visit when they can.

After everyone left for the night we had a peaceful night with the nurses keeping on top of  the pain.  Yes he or I didn't enjoy being woken up in the middle of the night but I was glad that they stayed on top of the pain for his sake.  But in order to leave the hospital we had to have him poop and need to find his oxygen.

Happy April Fool's Day!  This is a lovely view that we saw from the hospital window.

Sunday they come and do a little PT but not a lot.  We tried pushing liquids but Rhett was just not up to it very much.  He only ordered some lunch and then he only ate half of it.  Rhett conquered the stairs and darts in the PT room.  He really doesn't like throwing with his right hand because the doctors had pulled on his shoulder blade more then they have done in the past to get to his ribs.  We cannot leave just yet since they still cannot find his oxygen.

Time to wake up but not wanting to.  It is a good thing he is getting his rest since he is going to be doing PT again.

This is my sleeping space.  It is so much better than the recliner in the PICU.

Medicine before PT.  Trying to make sure he isn't in too much pain while doing everything they want him to do.

One last drink before we head out walking.

 

Walking even better than he did yesterday.

Not sure if he can do it by himself.  You can do it Rhett!

 

Asked him if he remembered Dave.  He said no but Dave has been in that unit for years and remembers Rhett from the first time he was there in 2003.  As he looks trying to see if he can see Dave.  LOL!  You need to be a little taller dude. :)

Dave is the Nurse Coordinator for the unit.  He is an awesome person.  He is great with kids!

They left this up all day long.  It made me smile.

Headed to the PT room to work on all the things that he needs to work on.

I wonder if it a comfort having his hand next to his face?

Getting ready to throw the balls at the target.  I told him that he had to use his right hand to throw and he looked at me like "WHAT!"  LOL!  yes Rhett you do need to use that arm to get it to work correctly again.  I am sorry that they pulled on your shoulder to get to your ribs, but there is nothing that I can do about that now so just use your shoulder and make it work again.

Good job Rhett you hit the target with all the balls.

Here are the dart boards.  You can do it Rhett!

Yes as you can see he did miss some of the time and they landed on the ground.  But he threw them all and made sure he didn't stop until they are all on the target.

Last one Rhett.  You can get it on there.

His score!  Good Job Rhett!

Look at all the dents in the wall. LOL! Man these kids not know how to hit the target, I guess that is why it is called therapy huh?  At least they are dents and not holes like they would be at my house. LOL  I guess that it is why we no longer have a dart board at my house. he he he!

Walking back to his room after darts.

So nice to have pain killers and relax after working so hard in PT.

Having to change the bandages and make sure he is healing well.

Do I really have to get out of bed?  I just want to stay here and play games.

I walked to the playroom with him since no one else came up to visit.  He had to pushed a wheelchair as far as he could before I would let him sit down.  LOL!  I am just a mean mom.  He pushed it down the hall around the corners in the elevator and then again down another hall to get to the playroom.  I was amazed that he made it all the way there all by himself.  Super proud mom right here!

There were a few kids in the playroom and they opened up to Rhett and let him play with them willingly.  They were super nice. 

I know a little blurry, but he wouldn't hold still.  LOL!  After being there for a little while daddy came with all the other kids and they had fun playing. 

We were up there for a few hours, which was a surprise to me and the nurses. LOL!  But when Rhett was ready to go back to his room he was really ready. 

We walked all the way back to his room and he did it again on his own pushing the wheelchair .  I cannot believe that he made it back to his room without sitting once in the chair!  I was happy.  It is great to see the progress.  He pooped!  Yes one step closer to going home!!  I can't wait.

Checking out his leg to make sure that it is healing good.

Bed time FINALLY!

Monday is here and now it is time for some more PT!!  Maybe we can go home if they find the oxygen tank that we brought to the hospital.  I mean we cannot leave the hospital without oxygen.

Worked on trying to get up and down the stairs.  Man that was painful to watch. :(  But he did a great job and even wanted me to take a picture of the saying at the top of the stairs.

Here is the saying at the top of the stairs.  I think it is very appropriate for all those that struggle every day.  It puts everything in prospective.

Than it was time to shoot baskets.  LOL  He has a good left arm, oh wait we need to work on getting his right arm working correctly again.  He is improving.

Last shot!

Look they found the oxygen tank!  Oh good now we can leave!  YEAH!!!

In the car finally headed home!  

Man this was a trip.  I never realized how much we go through when we are at the hospital.  It is overwhelming!  No wonder I was stressed and so was Rhett and daddy.  Glad that it is over for now.
Now it is a wait and see if this surgery worked, but we won't find out until August when he has his next PFT.  That will show to us if this surgery has helped or not.

Thanks for all the prayers that were said for our family during this time.