What a whirlwind...from 12/27

Long story short...from 12/27
He now has RSV and aspiration pneumonia AND a major pocket of infection in his back. They are listening this time. They are taking steps to help and monitor the incision and check for his body rejecting the implant. He is in NICU. I am told to expect him to be there at least 5 days. The worst possible thing would be a stap infection now...

All of you were right about camping out at ER. I am ticked that it took so long to get him the help he needed. I believe he had RSV last weekend. I believe he had pneumonia last weekend too. I also believe that the pocket of infection came from the skin glue and that there are other issues going on too..thanks to all of you.

On the 24th he began to cough and wheeze and I thought asthma and started breathing treatments...his temp would not go away. He turned a tint of blue on the 25th and I took him in again. They put on the pulse ox and it was 81...they said "oh its not that..its broken" and I turned into a bear...they gave him oxygen because I demanded it. I called his ped and she had another doctor come in and she looked at him and said we cant handle this...call for transport. Finally they called for transport to Egleston.

It was like winning the lottery...in walked the best EMS team I have ever met. They checked him and asked the ER people have you done A B C? Nope, no RSV testing, no chest Xrays, not wound cultures..nothing but the oxygen mom demanded. So we were on our way. Fog so thick you couldnt see 10 feet ahead...very poor visability.

We made it and when we walked in some of the same doctors were there...the EMS guys began reporting. The docs started questioning me as to when it begain and why we waited so long. I had say that we were there last weekend and the same tests were NOT done then too. I told them that we had been calling and IMing and emailing pictures and updates to all the doctors and told to wait. They kicked in with the testing.
*****
So far he has pulled out the IV four times. They called the EMS guys back in to help put it in this morning and they are using seditives to calm him down. He is screaming at the top of his lungs when someone comes in. They can hear him in the parents waiting area down outside of NICU and down the hall. Ken went in to give me a break and I cant stand it...I have to go back to him. I am going to call a few people and get back but I will update again as soon as I can. The IV antibotics are going to be our best hope for improvement and we will deal with everything as it comes.

Just an update...He is staying at 99.4 to 100.8 right now. I am giving him lots of fluids and he hasnt vomited (which is supposed to be impossible but is not) or had to be vented since before lunch. He is not dehydrated because I am giving him an ounce or less of pedilyte every half hour by tube.

His local Ped declares that on top of everything going on that he has the stomach flu..hence the nausa and continued fever. She said that it has to run its course.

I agree that he is reacting to something. I think the fever is related to the incision too. It is a pocket of infection. The doctors say it is not the titanium.

The implant goes along the scar and beyond at the shoulder blade and along the spine to the point of the recent incision. They feel like it would be all along the site of the old scar too. They only went in at the base to lengthen the rod.

I think there is bacterial infection from the surgery and a reaction to the material used to close. I have to find out what was used. I think it was skin glue. So far no calls returned on that question.

They want me to wait another 24 hours for the antibotic to work. He is in less pain but still hurting so we are on top of pain management.

I am cleaning it with a weak solution of peroxide and putting fresh bandages on with bactroban and mepilex every three hours to monitor it. I have outlined it and measured it and my thoughts are this:
If it increases in size one tiny bit, his temp goes up again or if it begins to drain we are going in.

ER said they would keep readmitting me as long as I kept coming back. The ER here is useless so we have to drive up to Atlanta. And we will.

Keep praying for lil Ty man...

Running to the ER...Prayers please!

Ty has his expansion surgery for his VEPTR rod on the 11th. The incision is swollen and inflamed. It looks so bad and sticks out about two fingers thick from his spine and is so red all around. He can hardly lay still and cant lay on his back.
We went to Atlanta to the ER on Saturday. They did blood tests and said the infection was surface, gave us antibotics and bactroban and released him. His temp spiked up to 104.3 that night and I was alone with him. He was in such pain! Moaning and crying and I could not comfort him. I couldnt drive the 15 miles to the ER not knowing if he was going to have seizures. In retrospect I should have called an ambulance. When I got his temp under control (102) with Tylenol and Motrin and cool baths I took him back to ER at 3:30am. By the time I got there his temp shot up again. On Sunday morning they redid the blood tests and it showed his white count up. They got his fever under control and gave him pain meds. They reevaluated him and said that I needed to take him to the ortho surgeon. We left the hospital and went there asap...
The rod is not broken. He has a pocket of infection in the incision NOT surface infection. We have the right meds. Thats it. We came back to south GA, four hours away. If the pocket of infection does not go away or continues to swell, we go back to ER. Hopefully in 48 to 72 hours it will begin to clear.
This morning although faithful to the routine of tylenol/motrin rotation his temp was over 104 again. Cool baths and cloths continued through the next dose of motirn...about 45 minutes after the last dose it came down to 101.
I am with him today. His G tube started leaking soaking his clothes so we just changed that and his temp is spiking again.

Pray for him...how long can he take this? I want to scream at the ER folks for letting him go twice! Poor sweet baby...I have to stay on top of that fever.

VEPTR II expansion surgery

I know its been hard to follow along but Ty just had his second VEPTR expansion surgery at Egleston and was in and out in quick fashion. It was wonderfully brief~ He did so well we were able to go right home!!! YES!

Now the worry news. This one is going to take prayer.

Dr Oswald says he doesnt like the way it looks. It looks to me like the "hook" attached to his lumbar spine has shifted or migrated. He wants to remove the bottom part of the device and move it to the pelvic bone. Another long incision?



This is not what I want to hear. I have to ask for a second opinion. So off we go to get one. Meanwhile his surgery is supposed to be scheduled for April.

The day after!

All I can say is "wow"!

There is more to this than I knew and now I have to figure it out. All important documents have to be changed and nobody seems to know what to do! LOL!

I can see this too shall pass!

Meantime...he is having a blast! LOL! We had a lot of family time yesterday and he just wasn't ready for it to be over with!

The day before...

Can I do this? Will I be able to give him what he needs? Can I prepare him?

I go into this very humble. I don't know what the future holds. I do know that he is home and has been for most of his little life. When I first saw him at three weeks old and he was so weak and tiny I felt like a mama bear.
He did not deserve what had been done to him and he did not deserve the pain he endured and continues to endure. I became a fierce advocate for him, seeking medical help that would give him life and hopefully an environment that would be conducive to healing. We went through so much together. His surgeries alone were enough to convince me he was a fighter. He tolerated therapies and tolerated my efforts to help him recover. There were times he would fight me, but after a few times it was almost as if he said "oh, the harness and treadmill again?" we would get on with it. Soon he walked again and we rejoiced.

It hurts to say his battles are not over.

And the singing. All of his life, I rocked him and sang to him so music was a big part of his healing. It took his mind off of the pain I suppose. And now, he loves music of all kinds.

His laughter is wonderful, full of all the possibilities and hope. His smile is amazing. His heart is bigger than he is. When he cries and I hug him he pats my back and soothes me as I try to soothe him.

We are going to step forward tomorrow and confirm what we have already lived and will continue to live. We will take him for our son and cherish, care and love him.

Can I do this?
At my age? All I can do is keep doing what we have been doing. Hugs all around every morning, kiss mama goodbye and family dinner when we get home. The pit stops at the hospital, the disabilites will never get easier, but he will always have family around him now. There will not be the ever present thought that if something happens to me he would go to strangers...he is home. The rest will have to come together as we look for ways to help him find happiness and satisfaction in his life.

A naughty day at nursing care...

Ok what do you say to the adult?

I called to tell them Artie has a doctors appointment tomorrow and the nurse/therapist tells me he is very very naughty today.

When she signs, he turns his head away. When she lays him down he gets up. When she puts him in the high chair, he climbs out. VERY naughty! And to frustrate her more, he laughs at her!

She says to me "dont be surprised when you get a note sent home about this"... ? Did I mention he is two? Typically he loves her...but today there was something going on!

During the course of our conversation I find that she used peanut butter on his favorite oral stim toy this morning. Peanut butter? On his toy? And tricked him into putting it in his mouth? Oh, I say...and when did this behavior begin? Right after therapy? And she doesnt know why he is naughty? I suggested that from now on she should call in a third party to do that!

He is mad at her. He holds a grudge. He is a two year old with a grudge against his nurse. Terrible two, dont touch me two, growling no napping for you two!! And now...a tired two!

Lets see, where does that put us? Hummm...if I go get him I am re-enforcing his behavior. If I let him stay, he will nap on the bus. He will be ILL tonight (thank goodness we dont have to go anywhere!) and really fuss.

LOL! Choices I get to make!

Gottcha Date!

WE HAVE ONE!!! WE HAVE ONE!!!

Prepare for MANY pictures when we get there!

A Trip to Boston...just thinking

Our trip to Boston was so fulfilling. Finally we were able to see children of all ages with Down syndrome. Now this doesnt seem like such a big thing to other people but to us it was comforting. We enjoyed loving on all the babies and talking to the kids. It was so much fun watching the teens trying to be cool and the adults reaching goals.
And other parents...there were other parents like us, insecure, not sure if we able to or evem deserve the privledge of raising Artie...

One thing I learned about this journey we are taking is that joy is everywhere, as is sadness. There is common thread among humans, the feelings and hopes. It is life. The life of a special little boy who wandered into our arms and grabbed our heart. The theme was well stated..."more alike than differnet"

Enter the drawing for a Blackberry and Bring Raina Home!!

Someone with a kind heart posted this...
The day that I first met my son, Xander, is fast approaching and I wanted to do something to honor that day and to also raise money for Reece's Rainbow. So, I'm giving away my Blackberry Curve. All the details are on my blog, but basically it's an auction. A $5 entry will get your name in one time for the drawing. Every penny in the auction will be given to Reece's Rainbow to be placed in the grant fund for little Raina who is waiting in Bulgaria. I chose Raina because she, like Xander, has Down syndrome and clubbed feet. So, if you'd like a chance to win my Blackberry and also to help out RR, check out my blog! And, if you have a blog, PLEASE mention this on your blog too. If you don't need or want the Blackberry, you can still enter and if you win, you can resell it on ebay Help me help a waiting angel on Reece's Rainbow!
Here are all the details:

Check it out!

Last Wednesday's notes

My little one is in OR now.

He will be in for about 4 hours they say.

He is doing well and is strong so I feel it will be a success.

An interesting note...the OR nurse felt she had to share. She said her daughter graduated with a degree in something (I am a tired mama) and couldnt get work. She said she took a job as a house mother for 5 men in their 40's that had Down syndrome about 5 years ago. She said she always felt sorry for people when she heard they had "that". It seems her view changed when her daughter asked to bring them over for a cookout. She said she was very nervous but they were the most delightful well mannered men she had ever met. She found it interesting that they were dedicated to each other and taking care of each other. She said that they were a family and very close. She also noted that none of them had parents living or extended family. I reminded her that every child was full of possibility and thanked her for her story.

I realized later that one of my fears as an older parent is just that. Knowing my child might be alone in later years. As I thought about it I felt better. Of course I teach him life skills and encourage independence. I just have to keep remembering that he can do it. He will be fine today and he will be fine in the future...but I still need prayer!

Tears of a touched heart

Artie had his surgery and it was wonderfully successful. Thanks to the hospital and staff and doctor. And thanks to everyone here for their prayers.
The daycare/preschool that he now attends showed such loving concern. We were just getting in the room the day out of surgery and in comes a beautiful "get well" balloon and a stuffed "shining star" frog with a link to the international star registry to name a star for him. LOL...now we all know they dont own the stars to sell the rights to name a star...but isnt that cool?

And today when we got home the director called and said she wanted to drive the school bus by and beep the horn for him. They came out of their way and drove the little white school bus by as we sat out front singing "wheels on the bus" and when they came by they beeped the horn! He had a fit!! He wanted to get on the bus! To top it off they stopped the bus and hand delivered a card his class made for him.

Did I cry? Yes, silly tired mama that I am. I boo hooed big time.

Long time wandering!

Okay I know its been 7 months...and 7 months ago the adoption should have been done. I went into a freeze out because of surgeries and paperwork...

I will have an announcement soon so hold on everyone! Its going to be soon!