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 picclinenursing.com**) 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?
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You are so right about putting things into perspective. Not only the little boy who is getting a new heart but little Tessie who is always being rushed to one hospital or another. I was sort of troubled by something before all this and I now just think who even cares. Life should not be wasted on small things but every day should be spent putting out good energy into the world by being kind, loving, helpful, giving to those in need.....and doing whatever we can to make someones day better. Blakes post on FB sayng how happy she is you are back home was so touching. You and Charlie are the best parents and I am so proud of you both ....and of course Tessie the Trooper, Blake and Ellie. What a great family!!!
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