29 September 2010

Scary words

So, it has been another long day.  Ben was a sick monster most of the day.  He seemed to get a bit better as the day went on.  Unfortunately, that did not last long.  My poor baby is just so sick and we cannot get a grasp on this whole thing.

I took him back to the doctor today. Dr. Lee saw us and was not happy with us.  She is feeling the same way I am these days.  What the hell is going on?  She is just as frustrated and has gone over all the usual suspects for this problem.  So, we are pulling out the heavy guns.  In we bring: ENT, Cardio and Pulmonary.  I am not happy about any of them, but if we have to do it, we have to do it.

It scares the hell out of me to use the word Cardiologist in the same sentence with my son's name.  I really want to have a perfectly healthy baby.  He has been so good this far.  I know that we will get it all figured out, but it is scary as hell right now.  SpO2 levels are in the low 90s but his heart rate is in the 140s.

Where does this put me?  I am in a lot of pain these days, but my child comes first.  I was feeling sorry for myself several months ago.  Now, I am worried to death about my child.  I am in pain, but I cannot imagine what it must be like for him.  Pain is okay, but when you cannot breath or your heart rate is through the roof, preventing you from doing things....that must cause serious pain.

I have been here on earth for 35 yrs, but my baby has only been here for 3 yrs.  Poor kid.  He has so much to look forward to...why does he have to be so sick.

The words cardiologist, ENT and pulmonologist are pretty scary when they are used in conjunction with your child's name.  It is also scary for me to think it could all be my fault.  Well, not exactly my fault, but could EDS be the responsible for my babies illness?

Lord, please watch over him and make him healthy.  I know it is selfish for me to want him here when his rightful place is with you.  I cannot change that fact....I really want him to be happy and healthy.  Please take him into your arms and do what you feel is necessary for the good of my child.

Ready to Crumble

I don't know how mommies do it.  Ben has been sick on and off now for more than 3 weeks.  As I posted earlier this week, we took an ambulance ride on Friday and were sent home with an oral steroid.  We did have an x-ray and we were told that there was no pneumonia.

Matt and I decided to purchase an oxygen monitor at that point.  We had it overnighted and it got here on Monday.  Monday morning Ben has school for 2 hours.  His fever was gone and his color was good, so I wanted him to go to school.  After dropping Max off, Ben looked at me and said, "I just want to go home."  I took him to school anyway and he did just fine.  He was not his normal jumping around self, but he did okay.  Yesterday he was home with me all day.  When we went to get Max, he was back to acting a little funny.  He did not run with the kids, but rather sat on the ground at my feet.

Swim lessons were last night and they both wanted to go (Matt went to Denver for a meeting).  So, I thought I would just take them.  Ben seemed okay, but not great.  I gave him some albeuterol and out the door we went.  As I left, I decided to grab the O2 monitor.  I put it on him and his level was 88.  Normal is 92 or above.   So, I called the clinic and was told to bring them right in.  Mind you, the after hours clinic is almost 1 hour away.  We got up there and he was holding at 92.  Which was good and bad.  The nurse practitioner basically told me that because he was looking at the toys and his stats were good that we should just go home and take an antibiotic.  I told them that we were on the edge going down, not up. So much for listening to a parent.

As soon as we got home, I started him on a nebulizer treatment.  His heart rate ran up to 180 and off to the ER we went.  Mind you, that between the time we were at the clinic and the time we got home...you could visibly see the difference.  We got to the ER and things looked to be stable.  They did an x-ray and told us that he had viral pneumonia.  They sent us home with decent stats.  I feel like no one listens to me.

I am a mom, I know what I am talking about when it comes to my kids. Ben is pale and unhappy today.  He does not want to eat (hello, it is Ben) and he is not wanting to drink a whole lot.  I am pushing juice, but it is not working.  We have had less than a cup in the last 12 hours.  We are off to see the doc again this afternoon.

I am beyond frustrated.  Poor little guy is tired and so am I.  He is lying no the couch... dozing on and off.  I did see the first semi smile in the last 24 hours.  Hopefully that is a good sign.  I just wish someone could have done something before we got to this point.  I am currently terrified about the pneumonia setting off the asthma and us going through it all again.  Right now it seems like we are on and endless cycle.

Wish us luck today....hopefully we can get out in front of this and it will all work out soon.  I hate seeing my baby like this.

28 September 2010


I have deleted a post from yesterday.....it obviously upset someone.  Not that I really care what this person thinks, but it is just easier to let it go.

It is sad to loose a friend in such a way.  I am, however, finished with it all.

27 September 2010

good morning world

Good Morning World,

Long weekend....Friday night started it off with a bang.  Okay, not a bang, but flashing lights.  About 9:30, Ben woke up crying and coughing.  It was so scary.  He started vomiting shortly after I got him up.  When he started struggling to breath, I decided it was time to dial 911.  My poor baby.  I have never been so scared in my life. The little man started to turn a little blue.  Matt and I gave him all the medicine we had.  When the paramedics got here, they gave him some more steroids.  We took a short ride to the hospital where we got x-rays and such.    He got some more oral steroids and we were able to come home.  His little cough got a bit better while we kept him quiet on Saturday.  I did take him to a birthday party on Sunday.  Bad idea.  While I did keep him tame, he still did too much.  He slept in this morning.  I did get him up in time to go to preschool, but he was so tired.  I felt bad for him, but did make him go.  I hope that all goes well.  We shall see.

Last night was bad too.  At 3:30 this morning, I was awakened by the door bell ringing 3 times.  It was so bad.  Scared the crap out of me.  I got Matt up and he got the gun.  We did not answer the door.  We had no idea who it was.....we did peek out and notice that we did not know the car or the person.  I then called 911 and they sent some patrol cars through the neighborhood, but we have no idea what ever came of it.  Needless to say, neither one of us really slept well after that.  I made Matt sleep on the couch.....so he was close to the door and the boys.  A bit freaked out......and very tired.

So, I am enjoying my few minutes alone.  Matt is downstairs working and the boys are both at school.  I have taken the time to sit and enjoy a cup of coffee and play on the computer a bit.  Now, it is time to follow my flylady rules for the day.  Off to shine the sink and change the laundry.

Let's hope that this week goes better.

11 September 2010

To Curl or not to Curl

Okay, so I am going today to get my hair permed. What an awful word, permed.  It sounds totally 80's.

I have talked to the woman who is going to do my hair and she sound professional.  I am looking for big curl...not the tiny ones we got in the 80's.  I actually looking forward to this, but totally frightened at the same time.  My hair is just past my shoulders and so hard to take care of.  With my EDS, it is very hard for me to dry my hair.  I have learned to do it in sections, but it still takes me forever because I have to stop and let my arms rest.  I am looking for this to be so much easier.  I really hope that I can wash it and just let it dry.  Hopefully the curls will be beautiful without me having to do much.

I really like the idea of a wash and go style.  I have tried so many before.  My hair has a funky wave to it.  It is not straight and it is not curly, so I have to do one or the other things to it every day.  I have taken to washing it every three days and then dry it.  It looks really good the first day....I usually wear it down then.  After that, it is two days of pony tails.  It is just easier that way.

So, here is hoping that it turns out the right way.  I will make sure to post a picture tomorrow after I have gotten it done.

Here is what it looks like now.......

10 September 2010

Mom of the week (not)

So, this was a totally weird week.  I must have been thrown off by the long weekend and not taking Max to school on Tuesday.

I am completely mortified that I actually forgot that Wednesday was early release for school.  He was suppose to be out at 1:30....and I forgot.  I took a nap.  I set my alarm to wake me up in time to get Max at 3, like I normally do.  At 1:45 my phone rang.  I sleepily answered it and then woke straight up.  It was Max's teacher letting me know that I had forgotten to pick up my son.  I was told that Max sat down out front and cried because I was not there.  OMG!  I felt my heart just drop out of my chest.  Thank God my friend Kim was there and brought him home.

I swore I would never do that.  My family had forgotten me before at school.  It was one of the worst feelings ever.  I did not want to be that mom.  I guess it happens sometimes.  I suppose I should not be so hard on my family, but still, it was a horrible feeling.

I still feel awful.....I probably will for a long time.  Matt says it is just some thing to learn from.  I am sure that it was a mistake on my part.  It was on my calendar, but I was so busy getting the rest of life together that I forgot to look.  My calendar is now color coded and I look at it each day.  I pray that I never do that again.

I love my kids and I want them to know that I love them and always will.  I really hope they know that I will always be here for them.