Sick Son

I do not want to send a sick child off to college. But that is exactly what will probably happen. John started with a fever 2 days ago. He occasionally has a headache. He feels poorly. Not terrible, but lousy. He is eating and drinking and taking tylenol, which helps him feel better.
He hasn't been sick with a fever since I can remember, but here it is-right before he leaves for school :( I will not be able to take care of him....
So I will pack him up tomorrow and off he will go. I mentioned the possibility of his waiting a day or two but he is not going to allow that.
Uggh. He did tell me he wants to take the thermometer :). I told him he will be getting lots of phone calls from his worried mom. He smiled.

A New Quilt

During the chaotic events of this past week, there appeared, on our doorstep, a gift. A beautiful quilt made for Sarah from an organization called 'Love Quilts'. To read more about them go here :http://lovequilts2macs.homestead.com/LQHomepage.html

Sarah's quilt, made just for her, is lovely. It is so bright and cheery! Thankyou to all the thoughtful, talented stitchers. Each square is stitched by a different person in response to our request for 'flowers'. Each flowered square has the stitchers name and state stitched in each corner. Then these are all compiled into the twin size quilt you see here. I asked for bold, contrasting colors so Sarah could easily see the quilt and the resulting royal blue pattern is perfect!

It was awful

I have been holding off on this post because I didn't want to relive it in the telling and I wanted to be (pretty) sure that Sarah is actually on the mend.

Sarah just went through, what, for her, was the most traumatic thing in her little life so far :(

She went downhill in the vomiting department and was admitted to one hospital by her pediatrician, but they couldn't get an IV into her. So she was sent by ambulance to Children's Hospital Boston. And they could not get an IV in her. So she was admitted to Children's for observation and antinausea meds. They drew blood and xrays. She stayed for 2 days and then I took her home.

Right now, she is showing a few little smiles, is pale and apprehensive. She is shell-shocked for lack of a better term. She is wide-eyed and easily frightened. It is heart breaking to see. Why is she such a mess, you may ask?

Sarah lives a little life out of necessity. Most things are overwhelming to her, most situations are overwhelming to her. She needs little events with lots of explanations, lots of reassurances. This was not possible for her this week. Everything was loud, busy, moved quickly. It was intrusive, frequently painful and confusing for her. Too many people, too many doors opening and closing, machines beeping and alarming, babies crying. Too many people introducing themselves to her, touching her, moving her. Truthfully, it was Sarah's version of a living hell.

So now we are home and she is doing nothing but drinking, eating a little bit, napping and watching her tapes. She goes from bed to rocking chair and back to bed again. It is all she can do. Just the sound of my crinkling up a paper bag sent her into wide-eyed panic. I started to talk to her this afternoon about the hospital and how hard I knew it was for her and that she was a good girl....but that's as far as I got as she burst into tears. She can't talk about it right now. It's too fresh, too raw, to painful.

Above are a few pics taken in the few rare calm moments. Tomorrow will be a better day.....

And about the inability to get an IV into her....she has ONE vein that will take an IV. That's it --just ONE. It was used earlier this week when she had the injections under anesthesia, so it was not available for meds or hydrating her when she went downhill on thursday. Other various sites were tried and once the IV Team got one in but as soon as any fluid was run into it, it broke and infiltrated. No more tries after that.

So here is what I have learned from this dreadful experience. I always like to learn something from a disaster :)

1. If Sarah requires any hospital attention, I will only take her to Boston. No more fiddling with the local hospital as they will NEVER get an IV in her.

2. The IV attempt can only be done by the IV Team. Period. The End.

3. They can only try ONCE, in the right foot(the only place it is possible to get one in)

4. If that one attempt is unsuccessful, then there will be no more attempts at peripheral IVs.

5. A NG tube will then be placed to deliver fluids/meds into her stomach. Not the most comfortable procedure but definately doable and much less painful than multiple IV attempts.

6. Use different anesthesia to try to prevent ileus.

7. And of course, there is all the more reason now to keep her out of procedures requiring anesthesia if at all possible.

Not a good day

It started with vomiting. Sarah. I called the doc and anesthesiologist. The consensus is
that she has a small ileus. This is when the intestines have not quite awoken from the anesthesia yet. So they dont move food along very well and you throw up.
So now she is on zofran to stop the vomiting and I am trying to keep her hydrated so we dont have to go back to the hospital for IV hydration. Ileus will resolve itself. But it can take time and you don't want to get dehydrated in the meantime.
Sounds fun, huh?

A Long Day

Sarah had her botox/phenol injections today. I decided to do them to protect her back from scoliosis and to try and hold off a hamstring surgery.
It went very well. John came to help out. We were up at 4:30 am, out the door at 5 and at the hospital by 7. She was scheduled for 8:30 am, in recovery by 10 am and home by 1 pm. Whew!
She is pale and tired but doing OK so far. I had them give her tylenol in the OR for the leg discomfort and zofran for any nausea. She napped a bit and just had a little cereal and 1/2 of a banana.
The report on the hamstrings was that the right one was mildly tight and the left one was "TERRIBLE with capital letters". Uggh. The doc is not sure if the injections will be enough anymore but we will see how she responds. It usually takes a couple of weeks to see the results.
So that's it for now. I am beat.

A few shots from her day and wearing Celine Dion

Happy Birthday Sarah Scott

Twelve years ago today SHE was born. The trajectory of my life changed that day although I was unaware of it at the time :)

Celine Dion

This is who I saw in concert in Boston last night. It was more than I could have ever imagined. I cried through the first song and through the last song. She was amazing! I am speechless. Words do not do her justice. She put on a fabulous show. My sister got Sarah a T-shirt. Pictures soon! I wish we could have had Sarah come too but it would have been too loud.

I still can't believe I saw Celine Live. Every day Sarah listens to her sing. Every day she watches some part of her DVD. Celine moves us. What a show!!!!

This is what I saw....

In Sarah's room...

And on the couch...

...repeatedly, throughout the week that Jimmy was home....

And now for the candids(see previous post)...

This is Sarah after the family photo session...

Cousins Chris and Gavin(who had his wisdom teeth pulled two days before), John texting on the cell

All 6--Jimmy, Sarah, cousin Brian, cousins Gavin and Chris, and then John(who now has a cell phone full of sand)

Me, Ali and a reluctant Sarah

John, Jimmy, Sarah ...I live for these 3 kids :) ...what a motley crew...

I see a couple of family traits here....let's just say--hair and hands?

The 'Official' Family Pics

Here are Jimmy and John heading to the beach

These are the six grandchildren

Here are the four of us--poor Sarah- she is not a fan of the beach!

Here is Johnny

Here is Jimmy

The five boys

And Jimmy and John

And jimmy carrying Sarah

And then there were four

TaDaaaaaa! Four toothbrushes!

While I wait...

...I have decided to take a picture of my latest morning glories. I love morning glories. They are BLUE. I love blue. Every morning there are new blooms that collapse by the end of the day. The thing about my morning glories is that I really don't get many blooms until they have climbed to their highest heights..as far up as they can go. When they realize they can go no further, its like they have some sort of caucus and finally decide to let all the blooms go forth. Until then, they are pretty tight-lipped and just climb. Lots of vines and green leaves but few flowers.

Today I noticed a few rebels among the vines. They are still actively climbing but a few blooms decided to make the break and shine early. These are they :) Just a tease for things to come.

Three hours

Need I say more :)