Friday, February 10, 2012

The Silent Queen...

Once upon a time, in a land far, far, far, oh so very, very far away, there lived a Queen.

This Queen was kind, loving, and full of light and laughter. Everyone in the Kingdom worshipped her. But this Queen was different from any Queen who had ever ruled.

She never spoke a word.

This might lead one to wonder how such a Queen could rule effectively but the truth was, though she was silent with her words, by the tinkle of a laugh or the furrow of her brow, everyone knew how she was feeling. And because this Queen was so beloved, her subjects would do anything to make her happy. In fact, they were all putty in her tiny little hands. Yet she never abused that power.

Well....almost never.

The Queen had only one demand that must be followed immediately and without complaint.

She must have her favorite movie whenever, and wherever, the mood happened to strike. Which was pretty much every single time her eyes were open.

Oh, how her Kingdom began to hate that movie. Sometimes they would even pretend not to notice the Queen's scowl when they tried to watch a different movie but it was no use. The Queen would become so displeased that she would bang her arm down on her throne and refuse to look at any of her subjects even when they would promise her that they would put her movie on for her later.

"NOW!", the Queen would silently "shout" as her brows shot together and arched upward and her lips turned down in obvious fury.
The Queen is clearly displeased because her subjects have not flipped down the DVD screen in her Royal Chariot to show her movie and is now refusing to acknowledge them

And when her subjects would try to distract and cajole her with kisses and bribes of toys, the Queen would dismiss them with a flap of her hand and a roll of the eyes.

But the Queen's subjects could not stand to see her unhappy. Even for a moment. For their Queen had been through so much in her life that surely she should be able to have something that brought her so much joy! So her subjects would rush to put on her movie and soothe her inflamed temper and wounded feelings.

And as the opening credits rolled, The Queen smiled her approval and acknowledged her subjects with a regal, if not slightly coy, batting of her beautiful brown eyes.
The Queen is pleased

All is forgiven they seemed to say. But do not test me again.

Yes, my Queen.

Thursday, February 2, 2012

Conversations from a Hospital...

Last week was awful. No beating around the bush. It just plain sucked.

Tess was admitted to Boston Children's Hospital to try to find out why she had spent the previous five weeks looking and feeling like crap.

Naturally, for the first two days, The Toots laughed and giggled, even when being poked with IV needles, to the point where I just know all the docs were questioning my sanity. And quite frankly, so was I. Let's face it, sick little girls just don't act that happy.

Or do they?

Day three. Tess awoke with a fever of 101.5 which rose over the next two hours to 103. 3 even with Motrin and Tylenol in her system. And I had the proof I needed to say, "Told you so!", even though the docs had been awesome and never made me feel like I was a freak for bringing a seemingly healthy kid in for a full work up. And while I must admit it was a relief for her to finally show them that she was indeed sick, it was a hollow victory as, over the next two days, she became so sick that even the two separate teams of specialists that were providing her care, became very concerned.

So Tess was scheduled for an MRI of the brain, ultra sound of her belly, chest xray and bone scan. Pronto.

And just like that, Bingo. The bone scan lit up an area of concern. It looked like she had an osteomyelitis (bone infection) in her left ankle/tibia. The question was, how did she get it? Trying to find an answer, another MRI, this time of her pelvis and ankle was ordered, along with xray of same area and CT scan of belly (to rule out possible GI infection).
I took this picture Sunday night when Tess started looking a little better

Once the docs were positive of what they were dealing with they very quickly brought out the big guns of antibiotics. They had done a MRSA swab of Tess since the chances of her having MRSA were very high given the number of hospital stays she has had in her life along with the bone infection which apparently, often times, is a MRSA infection. The upside to this? Tess was immediately put under precautions which meant a private room. The down side? By Friday night I was starting to think we were losing her. I have never, ever, seen her so sick.

She had not responded to really anything in going on 36 hours. They were still struggling to keep her temperature below 103, her heart rate was up to 170, and to top it off she had had an allergic reaction to the antibiotic they had given her. Due to the seriousness of the infection, the docs decided the allergic reaction was better than actually taking her off of the antibiotic because she was so sick. They needed to get it into her and fast.

Around 11:00pm Friday night, I had the doctor paged out to come to her room to look her over. Again. I had seriously started questioning whether or not I would be leaving this hospital without The Toots. I don't think I have ever been so scared for her. The doctor came right in and reassured me that, yes, although things were very serious, Tess was holding her own and there still was more they could do if they felt it necessary.

By the next morning Tess was still very sick but I could see a small improvement and by Sunday, she looked even better and her MRSA tests had come back and luck seemed to be on our side because they were negative which meant the docs could change the antibiotic to something less harsh on Tessie. The PICC team came in (a picc is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access**info taken from**) to insert the line so that I could take her home and she would still be able to get her IV antibiotics every 8 hours.

Needless to say, I have learned how to administer the antibiotics through the picc and take care of it (because you have to be super careful to keep it sterile because you DO NOT want an infection in that line as it goes close to the tip of the heart...yeah, no pressure there) and the docs felt that by Monday, which would have been day 8 in the hospital, she was well enough to be released. We went to Sheila's in the hopes of making an early morning boat home the next day.
Tessie leaving the hospital and yes, that big cart behind her with the balloons is all her stuff

Then on Tuesday she spiked a small fever so phone calls flew back and forth between her pediatrician and Boston and more blood work was ordered and finally, on Wednesday, we got the green light to bring her back to the island. Of course, we need more blood work done tomorrow, then Monday and another follow up appointment in Boston on Wednesday so we are still very early into the recovery portion of the program. But she is recovering. Thank God.

She will be on IV antibiotics for at least six weeks (They are guessing. It could be as long as eight weeks) and will have to go the the mainland at least once a week during that time for dressing changes and blood work. But that's okay. She's home and on the mend.

Which, believe it or not, leads me to the title of this post. As the hubby was in the hospital elevator on his way to The Toot's room, he struck up a conversation with the man next to him. This man told the hubby, "If all goes well tonight, by tomorrow morning my son will have a new heart."

Sort of puts things into perspective, doesn't it?