Saturday, April 27, 2013

Just another week in...well, you know the rest.

Per usual, Tessie Toodles has thrown a few curveballs our way this past week. Seriously, I cannot remember the last time a full week has gone by in which I was able to just sit back, look at Tess, and feel like things were okay. I'm not saying this to whine or anything, it's just a matter of fact. The kid likes to keep me on my toes.

And we have the big, huge, panic-inducing, double hip surgery looming in the near future and as you may recall from my previous post, I was told to keep Tess well by a nurse at Children's Hospital.

Okay. Keep medically fragile child well. I'm on it.

And I have been on it. There is basically a "no fly zone" around Tess that no one, other than her nurse, therapists, dad, me and her sisters are allowed to enter. As in, I shriek like a crazy woman at anyone who even, ever so slightly, crosses those borders, "DON'T TOUCH HER!" Because I'm a caring mother. Or just a harpy shrew. Either way, it's an effective, if not slightly annoying, strategy.

Even when Blake came home for college, with a cold no less,  to celebrate her 19th birthday, I showed no mercy as far as the rules went. Yes, she is a sister so the rules are a bit more flexible BUT, not when that sister has a cold. And also has a boyfriend with a cold. Funny how that always seems to happen, isn't it?

But I digress.

Blake had to wear a mask and so didn't Bobby. At least they were really good sports about it because they love Tessie.

                 Wizards in Masks! Beware the germs!

 Tessie giving Blake the present she got for her (a Gryffindor t-shirt)

And me, being the awesome mom and total Harry Potter geek (just like Blake) that I am,  had a lady who also lives on the island make her a Harry Potter cake. And holy cake, Batman! This was a work of art. We actually hated to cut into it but you know, we forced ourselves for the sake of not wanting to waste all that cake. And the Hedwig? Hedwig was made out of Rice Krispie treats. *Drool*   Here's a photo because words cannot articulate the awesomeness that was this cake.

               Cake by Cathy of Cathy's Comfort Creations

So we got through the weekend and Tessie never caught their colds. On Monday Sheila came and noticed a loose tooth which I had also noticed over the weekend. I did not, however, notice how loose it actually was. As she was changing Tessie's diaper I heard, "Joanna, come in here please." Of course when I hear that I always assume Tess is seizing but when I went into her room and got close to the changing table I saw blood on a piece of paper towel. Um, eww. Sheila was working on getting that tooth out and needed my help holding Tessie's head still. *side note: We have to be aggressive with getting out loose teeth in Tess because if we wait for it to get loose enough to fall out on it's own, chances are Tess would aspirate it into her lung and wind up with a nasty pneumonia.* Anyway, I tried. Really I did. But there is just something about loose teeth that totally grosses me out and add the blood and well, let's just say I was not very helpful. Luckily enough, the hubby was home and came in to rescue me, er, I mean, Tess. But here's the thing, he also has a pretty weak stomach and just as we were both at our wit's end with the whole pulling out the tooth business, bam, it was out! Charlie and I both got out of there like our asses were on fire and left Sheila, and well, Tess to fend for themselves and put pressure on the hole where the tooth had been so the bleeding would stop. Yes, I know, Sheila is so lucky to get to work in this house with awesome parents like us.

Once Tess was all fixed up and I couldn't really see any blood, I got in her recliner and held her while she watched her movie. Basically, I ran from the problem and then swooped in to save her after it was all taken care someone else.

But here's the thing, I KNOW my weaknesses and I embrace them. I can do any number of gross and disgusting things in order to help Tess but I also know what I CAN'T do and knowing your weakness is ultimately a strength. And yes, I am going to stick with that story.

Then, that evening, during yet another viewing of her movie, I noticed a little blood in her ear. Well, huh. I had Sheila come and take a peek and we decided to get out the otoscope to get a better look. "There's blood pooled in her ear.", Sheila told me as she handed me the otoscope to see for myself. Sure enough; blood. Ick. The really odd thing about this little trauma was that Tess has never, in all her medical crisis', had blood in her ear. I was freaked out! Sheila, while concerned, had a much more laid back approach. I insisted we call Jen anyway and she basically said everything Sheila had already told me which was there wasn't much we could do about it given it was night time and not exactly an emergency. I was reassured that if Tess seemed to be in pain or started to have other symptoms,  that Jen would come and check her out, otherwise we would see her first thing in the morning. And bonus, she would come to my house so we didn't have to get Tess up and out early.

Tess did fine throughout the night (the Tooth Fairy even made a visit) and when Jen came by the next morning she confirmed an ear infection with the possibility that Tess had a perforated ear drum which would explain the blood. She gave Tess a shot of antibiotic and, after listening to her lungs and discussing with me the high risk of Tess getting an infection in her lungs which would delay her surgery,  prescribed a ten day course of antibiotics.  I was actually very happy about that because Tess NEEDS this surgery and her pulmonologist at Children's is all set to put her on a strong antibiotic a week before surgery as a preventative measure so basically this means Tess will be on an antibiotic right up until surgery at this point. As Martha Stewart would say, "And that's a good thing."

                                       You said it, Martha!

Jen also booked Tess another appointment to be rechecked Friday (yesterday-and, once again came to my house so Tess wouldn't have to go to the medical center. I ask you, who else would make house calls?).  After checking out Tessie's ear, Sheila and Jen decided that it really needed to be flushed so Jen called the medical center to get Sheila the necessary supplies to flush Tessie's ear. After Jen left,  Sheila, myself, and Fay (Tessie's ed tech from school who is game for anything we throw her way) got Tessie's ear flushed and I am here to tell you, it hurt. The poor kid was crying real tears and Sheila, who loves Tess like her own, was beside herself and raced up to the medical center to get numbing drops to put in it. Once the drops took effect, Tessie happily watched her movie.

That has been this week. I am praying that this will be it until it's time to leave for Boston for Tessie's surgery. I think we have her as ready as we can health-wise. At this point, we are still titrating up on Tessie's seizure meds from when she was hospitalized for them last month (if we didn't get some control over them, the surgery would have been delayed). And dare I say it? Right now, the meds are working. Hallelujah! Of course she is now taking 29 pills a day to try to control the seizures. You read that correctly. This little, nine year old girl who weighs all of 54 pounds, takes 29 pills a day WHEN SHE IS HEALTHY.  This does not include her daily pain control meds for her hip or her antibiotics or her rescue seizure meds.


I am not complaining, because when the seizures are absent, MY Tess is back. Back to being engaged in her life. Back to making her happy noises. Back to smiling and giggling and being happy. Just...back.  Aside from being extremely worried when her seizures get so bad, I really miss her when she is "gone" and man, oh man,  am I happy when I get her "back".

                      She's back! Now THAT'S MY Tessie!

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