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!

Tuesday, April 9, 2013

I want to go to bed

I feel like a kid who is overtired, cranky and whiny. I want to kick my feet and throw myself down on the floor and and cry and basically have the ultimate little kid temper tantrum. Gross, runny, snotty nose included.

But I won't.

Because I have to be a grown up. Whether I like it or not. And right now, I can assure you, I do not like it. Not. one. bit.

In case you couldn't tell, today has really been a poopy one (yes I am purposely using the word poopy because I am still in little kid temper tantrum mode).

My day started with a phone call from Boston telling me that Tess could not get her botox injections due to her recent pneumonia. That's right. I found out TODAY, two days before the appointment, that because Tess had pneumonia within the past six weeks, she can no longer get the Botox injections that she was scheduled to get on Thursday after MONTHS of waiting, not to mention that she was diagnosed with pneumonia ten days ago and they got the doctor's notes in Boston right away so they must have KNOWN, not to mention they have already been rescheduled TWICE and her hip surgeon really wanted her to have it done prior to surgery. And let's not even get started on how it would have drastically helped to decrease the pain that she has been in for the past, oh, I don't know, ten months or so. 

This all led to the conversation of her surgery. "You need to keep her well", the nurse all but scolded me as if I have any real control over aspiration pneumonia. Now I will be a bundle of nerves if someone even sneezes within a five mile radius of Tess. I plan on building her her very own plastic  bubble out of Saran Wrap and Duct tape. Not sure how she will be able to breathe in it but at least no germs can get through if no air can, am I right? Can I get an "Amen!"? 

I'll make sure it's a Toy Story Bubble. Because I am a good mother like that.

Yes, I am kidding. And clearly going insane which I am willing to bet is more fun than being a responsible grown up.

Then there is the issue of one of her feet getting ice cold and turning a lovely, dusky color. How bizarre. No answer as to why this has been happening so a doppler study has been scheduled for both of her legs tomorrow in Boston to make sure her circulation is okay especially given that she has a major surgery coming up. 

Oh, and have I mentioned the small issue of her "slight heart arrhythmia" that was found after her most recent cardiology appointment? No? My bad. Yes the EKG showed a little blip that requires further testing so we just finished up a twenty four hour Holtor Monitor EKG test last night. I am Fed Ex-ing the results tomorrow.  The cardiologist isn't too worried and suspects that, per usual, it's just Tess being Tess.

My poopy day got even poopier when Tess started cycling in and out of seizures around two o'clock and didn't stop, despite all the meds I dumped into her little body, until nearly three. During this time I made a frantic phone call to Boston basically telling them that I would be there tomorrow for a different appointment so PLEASE PLEASE PLEASE fit Tess in for an appointment with her epilepsy specialist!

And like my very own fairy godmother ready to grant my wish, the nurse called me back and said the doctor wanted to fit her in.

One appointment granted.

                             *fairy dust*fairy dust*fairy dust*

Then she ordered more meds for me to give to Tess tonight, a "loading dose" they called it, along with directions to get her off the island if she seizes anymore tonight (uh-huh-no sweat-yeah right) and now we have to take the first boat rather than 8:45 in the morning in order to make it all work.

So for my next wish, Fairy Godmother...

Can today please be over with already? Pretty please with a cherry on top?


                       *fairy dust*fairy dust*fairy dust*