Morganism

I was in a hurry.  I rolled through a stop sign. My fab back seat driver (lil miss Mo) announced that what I did was"totally an eagle!"

Easter and sick boy update

It's been an entire week that Mr. J has been sick. Yesterday was rough. He woke up with tons of energy, or maybe it was just the excitement that there were eggs hidden and Easter baskets to be found! Mo was stunning in her yellow Easter dress and her huge smile. She found her basket right away, and was ready to dig into some Easter bunny pancakes! When J found his basket he immediately dove into the peanut butter candies and I just let him. He hadn't eaten in a few days and I was glad to see him putting something into his mouth. Bad idea. As soon as we made it outside for the egg hunt he threw up. Yuck! Morgan did the Easter egg hunt and Jonah was ready to get back in bed. His oxygen needs continued to go up. It was touch and go for a bit. we headed over to my Gmas for a nice Easter dinner and yes, more eggs to be found there as well. Jonah just crashed on the couch and got more healing Zs.



Today was better. He is still up on oxygen but he has some energy, only needed to lay down a few times through the day. Deep suctioning has become priority, he is a mucus factory. Crossing my fingers that tomorrow will be even better.

I took J to the doc this morning while my grandma took Mo swimming.  J is hanging in there but after a night like last night (or shall I say early am hours) I thought for sure he would be admitted again. His temp is still high and a rotation of Tylenol and Motrin are a must. His cough sounds junky and he is forming an abundance of secretions. So much that when I went to vent his feeding tube it filled instantly up to 5ml's of snot! 

Sleep.  That's what he needs.  Lots and lots of sleep. Why won't he sleep???? He must sense that I am dying of sleep deprivation.  Do our kids do that? They know we want to do something and find extreme ways to make that want simply impossible?  Food for thought.

Home but still sick

We busted out late last night.  We left but not without one last dose of Viagra!  We had an awesome nurse who stayed to make sure Jonah was given it because she knew that his insurance is continuing to deny him of the med. Like I said, she was awesome!

J is still sick.  His temps have been running high through the night but with some breaks as the Tylenol and Motrin are tag teaming him. Oh man.  It was a long night! He was up every hour so that meant I was too. Alarms sounding off not because he was desating but because he would pull the thingy off his foot. Then to top it all off, his concentrator went all crazy and started alarming as well, so I had to hook him up to a portable tank. My fear is that the portable tank will run out of air, or turn off with out me knowing and that J will be asleep and well, you get it.

I made an appointment for him to see his pediatrician tomorrow. The hospitalist was concerned about where these viruses might lead him, so I am doing my best to fully stay on J with every breath he takes.  J is just exhausted. He wants to sleep but is having a difficult time getting comfortable. He is not being shy about the fact that he is sick and irritable. The biting is just getting worse due to the frustrations. Sad.

He has had his 3rd dose of Tamma flu and so I hope to see him start to turn a corner soon. Continue sending blessings and love his way. Thanks all.

Back inthe Hospital

Yeah, you read it right. J is back in the hospital.  Yesterday he was admitted through the ER. 

His morning went well.  He woke up, refused 2 different breakfasts (not uncommon) and played with Mo  and I for a a bit, the I took him in to see the energy healer. He was fine the energy healer did his magic (working with the priapism issues) and off we went to do some "extreme couponing" at the grocery store. While in the store J kept asking for "arter" over and over again so I got him a bottle, opened it and he downed it! (Two rules were broken.  1) I opened water before paying for it and 2) he only supposed to have thickend liquids, especially if he is drinking that fast!) When he finished the water he bagan to shiver and his pink lips turned to blue. BLUE! I threw my food items on the check out stand hurried and payed the lady and rushed him out to the car to hook up his oxygen...totally forgetting to give the cashier my coupons of course!
We got home I lifted him out of his car seat and he was smoking hot. Took his temp, and he was burning up at 103. I Then hooked him up to his sat moniter and was mortified when I saw that he was only sating at 81 on his base line needs. I turned him up to a half then a full ltr.  I knew he was going to need some sort of intervention as he kept desating on the lower amount of O's.  So, I called one doc and she was on vacation called the other and she was not in the office.  Called my fellow medical mommy and a my friend who is also a nurse.  The decision was made...take him up to the hospital.  So we hung out in the ER had a VRP and a chest Xray done and he was still burning up and now he has developed a wet cough and had begun throwing up.... everywhere!

He was admited by one of our favorite docs up here one that has litterally stood by his side from the begining of J's journey. I trust her. I didnt argue, and Im so glad I didn't because last night his fever was still going strong and he was up to 2 ltrs of oxygen.  Poor guy!

This morning he has been doing much better.  His fever is gone and so is the throwing up.  He still has not had anything by mouth but he has a feeding tube and we have slowly been feeding him pedialite through it.  Im telling you NEVER a dull moment with my J!  he is back to his base line oxygen needs but has desatted a few times.  All tests thus far have come back negative, but as we all know there are so many viruses they can't possibly test for everything.  But yes, they are suspecting it to be viral. The resident and attending are waiting to see how his day goes to decide if they want to keep him another night or to let him come home. I will do what ever they want willingly.  J is so important to me I just want him to be healthy.

I did it!

I'm not sure what I'm doing wrong on trying to make my blog private but it seems that after all my hard work of adding emails no one is able to log on.... What ever, I'm over it.

Today I ran in my first 5K and did well! I did well considering I finished in 49 min pushing a double stroller (not a running stroller mind you) with almost 80lbs sitting in it! Needless to say that my arms are hurting more then my legs! It was so much fun! And I'm so glad I did it! It was a 5K put on by M's school. I, started last. We started last place, Isaac started the race with me but as he had already did a long bike ride earlier in the morning he pooped out on me (not even half way) and so I went at it alone. It was great passing people, high fiving others and enjoying the beautiful mid morning. I had the best coach (Jillian Michaels style) as M was constantly yelling at me to go faster! I was so out of breath I could hardly get in 2 words, when I started getting requests to sing the baby bumble bee song! C'mon!  Who do these kids think I am? LOL! Like I said it was so much fun and I think I have caught the running fever!  Looking forward to participate in many more through out the summer.

A moment of weakness, that's lasting too long.

I wrote this post for another blog I belong to. I have gone back a few times to reread it.  It was written in  a moment of weakness. Im reposting it on this blog, as this is a journal of my journey with a special needs child.

Tuesday, April 5, 2011

      S.O.S

Im a little upset as I tried to hop that last plane to Italy, but due to some malfunctions on the plane they asked me to exit and return to my life in Holland. The flight attendents had no word on when I would be able to catch the next flight out, but she said that I should run for shelter as a storm was rolling in..........



I dont think I have prayed this much in a long while. Im feeling so beaten down by this jouney and I honestly have no one who can relate. Im trying to keep it together but ladies it's so hard. I hate being "strong" and having a smile on my face when inside Im a mess. I have not a clue as to help my child, but I need to get one as he is spiraling out of control.



This morning by 8:00am I was in the ER because he was so upset he started head banging, headbanging so hard that he needed to get his head glued because he had mannaged a gash, smack in the middle of his forhead. We were out of the ER by 9 only to return again hours later as he had another fit and started bleeding out where the doctor had just fixed.


This has been my life for the past 3 weeks. Okay, well no ER but the fits! Holy cow! It is creating chaos in my home and in my brain. I can't imagine what my lil guy is going through. He has become physicaly abusive to all around him and even worse to himself.


I need support. I need ideas of how to handle him. My fear of losing him is happening and I feel the need to hurry. Hurry doing what I'm not sure about. I know he is a unique situation as he has Lung disease, and PDD-NOS. But Im so deperate for something brilliant to be thrown to me.


He currently goes to an ABA based facility to which he thrives in. HOWEVER, as soon as he is home, in public places, well, gee, I guess anywhere then at school, he loses all control. What therapies and such do you know about that have helped other Autistic kiddos? I feel like I have him in everything available in the 801, but maybe he needs more focus in each session or more freequent sessions? Ugh, did I sign up for this? Really?