Monday, July 27, 2015

Potayto, Potahto....

The other day I got a phone call from Tessie's "boyfriend"...aka Dr. Stephenson. He has been helping me to fight against the State to get in-home nursing reinstated for Tess because, per usual, the State was actually trying to deny us yet again.

In fact, when the nurse who works for the State called to tell me why they were denying, I quickly reminded them that since we had last had nursing Tess has become more medically compromised and their policies hadn't changed so they couldn't deny us. They still told me "no".  I then reminded them that the last time the State had tried to take away nursing hours I had called the Governor's office and threatened to bring Tess to his home with a sign that read, "My Governor does not care about me" attached to her wheelchair and invite the media. When the nurse replied, "That doesn't frighten me.", I quickly responded with, "I'm not telling you this to frighten you. I'm telling you this just to give you fair warning of you you are dealing with, and trust me, I will fight this as far and as long as I have to and do whatever I need to do in order to win." Good times. Good times.

But I digress.

Dr. Stephenson had written a letter to the doctor in charge at the State level on Tess's behalf as well as called him several times (with no answer or return calls) to rattle his cage because he was so appalled that the State had the gall to try to deny Tess nursing care. Long story (sorry!) short, his letter did the trick and we got all the nursing hours we requested.

Huzzah!

Anyway, as I was talking with Dr. S, he wanted to hear about how Tess has been doing because he hasn't seen her in his office in a while. I told him that I thought her seizures were increasing, most likely as a side effect of puberty, and then went on to tell him about her having a cluster of small seizures around 10pm the night before and how a few hours later, Tess's 02 dropped down to 86% and I had to work a little to get it back up into the 90's. I told him that I repositioned her, suctioned her and...wait for it...did chest compressions to help her to breathe better.

He quickly interrupted me at that point and said, "Wait up, wait up. You had to do CHEST COMPRESSIONS on her?!?!".

It took me a few seconds to work out why he was sounding so shocked and frankly, a little freaked out. Then it hit me...Yup, I had actually used the words chest compressions when I meant to say chest therapy, which is basically using your hand to pound on her chest and lungs to move around the gunk in there, as opposed to say, oh, performing CPR, which is what I had said I did.

I laughed and quickly corrected myself as he laughed with me and said, "Now Mama Reidy, I know you are super comfortable doing a lot of scary stuff alone with Tess but I really would think that you'd be a little bit more, well, excitable, when telling me about it if you'd had to perform chest compressions. Also,  I hope you'd at least give me a phone call!" (he was joking...he knows me well enough to know that I would be a total basket case if any sort of chest compressions were involved.)

We laughed a little more over my stupid, and very dramatic blunder and I told him, "What can I say? We haven't had nursing help in ten months and I. AM. TIRED."

He very nicely let me off the hook for being such a drama queen with my story and I hung up feeling just a teensy bit like an idiot.

But an idiot who can still laugh at herself.

Chest THERAPY, Joanna. Not COMPRESSIONS.

Meh, Potayto, Potahto..... ;)











Wednesday, July 15, 2015

Casa del Cray Cray...

Howdy! It's been a while, hasn't it?  Well lucky you, I'm about to catch you right up on what's been going on here at Casa del Cray Cray! Settle in.

We'll start with Tessie's 12th birthday! My little baby is twelve years old. TWELVE. And what did mama do to celebrate? Why threw her an awesome Frozen party complete with Princess Anna's Coronation dress for my little Princess. She. was. too. adorable. If I do say so myself. And I made her chocolate pudding with whipped cream and even let her have about a teaspoonful. Because I'm finally acting on what I say, I want Tess to have a great QUALITY of life, not just quantity. And once in a while, that even means risking an aspiration pneumonia on your birthday in order to taste something delicious made just for you. When her eyes lit up and she started grabbing that spoon trying to get More! Faster! It was all worth  it.  And I can say that now because she didn't get sick.  Phew! *wipes brow*


Princess Anna with Elsa and Olaf


featuring Oreo as Sven ;)


Let's see.  Oh yes, amidst the daily crazy I got to go with my Yaya to see the one, the only, Glennon Doyle Melton *cue angels singing from Heaven* when she spoke at the Old South Church on Boylston Street in Boston. I LOVE her! If you haven't read her blog, Momastary, or her book, Carry on, Warrior, then all I can say to you is CHOP CHOP! Get on it! So. Good.

Kellie, aka, Yaya, Glennon, and me! :)


The next day I left my Yaya and met up with the hubs and Tessie to take her to her appointment in, where else...Boston, you know, the place I had literally JUST BEEN not twelve hours prior, for her infusion of bone strengthening medicine. While this was already on the books, I did call the day before to question whether or not she REALLY needed it. After all, this stuff is heavy duty with some fairly crappy side effects and I was having major guilt about injecting Tessie with something that was going to most likely make her feel terrible after.

Ugh.

The constant battle between helping and hurting Tess. So many times the help has to come with the hurt, and as a parent, it's unbelievably heart wrenching to make those decisions for her.

But I digress.

I was told in no uncertain terms that Tessie's bone density scan came back and that she most definitely needed the infusions.  Roger that.

We got Tess to her appointment and the nurse struggled (as almost every nurse does) to find a vein to insert the IV into. While I had to look away lest I get a tad whoopsy feeling, my little warrior girl giggled and giggled as that needle dipped and bobbed trying to hit the vein. Of course it helped that the nurse was a riot, they had her favorite movie playing, a warm blanket on her, and Oreo snuggled right up with her on the bed but still...I most certainly never feel like giggling when I get a needle in the arm, and I don't think any amount of "comfort" things would help me feel like laughing.  I tell ya, this kid constantly amazes me.


getting her infusion...happily

The infusion took just a little over three and a half hours then we were sent on our way. Tessie did great and all that afternoon into that evening I was thinking that for once, Tess was going to catch a break and not get the side effects that so many do.

When will I learn?

Around midnight Tess started fussing and her o2/heart monitor was alarming. When I got up to check her, I noticed her high heart rate, around 150, and decided to check her temp. 101.6. She was also very clearly in pain. We had been warned about all of this and told that it was all normal side effects so I didn't get too worried. I mostly just felt very guilty because I had agreed to the medicine that was now responsible for her misery. Hurt to help.  It has to be this way but it sure does suck.

feeling like total crap :(


Tess slogged her way thru it and after about day five, she was totally back to her happy little self. Sweet relief, let me tell you. And bonus, we were on our yearly family vacation in Rangeley. Moosing, speed boat rides, pontoon boat picnics, bowling, strawberry festival, we did it all. And this year, Oreo got on the pontoon boat without any trouble. We joked that she knew it was safe this year where last year, when she refused to get on, we later realized one of the pontoons had had a small hole in it and that Oreo was so smart, she had most likely sensed the danger and was trying to warn us.  The guy who runs the marina was cracking up when we told him.  Good ol' Oreo Cookie.






So now we're back in the daily grind. Tess's seizures seem to be amping back up and I am thinking that it most likely is because she is starting to go thru puberty. Yee haw, cowboy!

And speaking of seizures, I'm about to tell you two things that, without a doubt, will secure my spot as Mother of the Year.

The other afternoon, the hubs and I were sitting out on our deck enjoying the gorgeous weather as Tess was napping like she does about every day, when we heard Oreo whimpering. We both thought that she was whining so we would let her out to be with us and we, rather sternly, told her, "No! You stay with Tessie!".   Cue more whining and more "NO'S!". Then, a VERY panicked sounding whine. The hubs looked over and saw Oreo literally standing, looking and whining AT TESS in her bed. "Is she alerting?!", the hubs sort of yelled as he and I both jumped up and ran into Tess's room.

Yup, as her parents were literally only FEET away (her bedroom is the room right next to the deck that even has two windows that open directly onto it),  Tess was having a small seizure and poor Oreo was all, "A little help, please!".  Have I mentioned how much I love that dog?

Then, today, as I was giving Tess her daily breathing treatment, (nebulizer with xoepenex & hypertonic saline, chest vest, cough assist, suction and flovent inhaler), I noticed that she appeared to be, maybe, possibly, having a small seizure. I assessed her as much as I could but decided it wasn't serious enough to stop all of the treatments that were happening. That's right, my friends, I just kept mercilessly on. At one point, I did decide it was looking serious enough to start dealing with the seizure rather than the breathing treatments and I did remove the nebulizer mask and shut down the vest but then she came out of it and smiled at me. Back on went the neb and the vest fired back up.

I know it sounds harsh, but by now I can prioritize pretty efficiently and quickly what needs to happen and when.

Besides, to be honest, days like that are pretty much business as usual when you live here in Casa Del Cray Cray...  ;)