Friday, December 30, 2016

Toodle Bug Update...

For those that read my blog and are not my FB friends, I'll give a quick recap:

Around the beginning of December Tess came down with a respiratory infection. We treated her at home with antibiotics and she appeared to be getting better. Then, about eight to ten days into that particular course of antibiotics, she started to become symptomatic again so we switched her to a different antibiotic and once again, she seemed to be getting much better. After that ten day course of antibiotics, she seemed good until about three days after they were finished. She woke up this past Monday morning with all of her symptoms only they were worse, and by Tuesday was running a fever. I called out the on call island doc who came to the house and agreed she needed a shot of antibiotic. He said he would be back the next day to listen to her lungs again and decide where to go from there. After a couple of pretty rough nights with lots of suctioning and the need to put her on oxygen support, the island doc came back, listened to her and said he really felt like she needed to go to the hospital and at the very least, get blood work done and a chest xray. Me being me and really hoping to buy some extra time to pack, actually asked if he thought we had time to wait for a later ferry rather than the next one that was due to leave. Long story short, I got packing and we got on that next ferry.

We went thru the ER at the local hospital that her pediatrician works out of on the mainland and they did the blood work and got her right in for the chest xray.



It wasn't ten minutes later that the ER doc came back into Tess's room and told us her xray was not good and that her whole left lung appeared full of pneumonia. He then said he wanted her transferred to a bigger hospital, especially since there was a storm coming the next day. So they loaded Tess up in the ambulance and I managed to talk the hubby into riding in it with her (because I absolutely hate riding in the back of those things) and they were off with me following behind in our van.




Tess was brought into the ER at Maine Medical Center and it was confirmed that she had a nasty pneumonia and would need to be admitted. They were also worried about a plural effusion because there was just no breath sounds in that left side. Luckily, that was negative so Tess was moved to the regular children's floor in the Barbara Bush Wing rather than the PICU.

Per usual, Tess has done what Tess does best. Which is to say she takes three steps forward then two steps back. She will seem like she is rallying, then all of a sudden it's like the pneumonia is starting to gain a little bit of ground, then she fights back and seems a teensy bit better again.

Needless to say, my nerves are shot.

But, as I type right this minute, she seems a little better and her doctor is hopeful that by Monday she will have really gotten ahead of this and may even be able to be released. Of course, because it's Tess, he also has a plan B. If she isn't markedly better by then, he is going to perform a procedure on her called a bronchoscopy and literally go into her lung and pull that gunk out himself as well as take a small camera to look at the lung to be sure there's nothing else going on in there that would be making it harder for her to heal up from this. He will also get a sample of the mucus to send off and see what particular bugs might be growing in it (again, only if she isn't better by Monday).

This morning I was able to take the oxygen off of Tess for a little bit and when I asked her if she was feeling a little bit better, she stuck her tongue out (which is one of the ways she "says" yes).



Then she proceeded to destat, requiring oxygen again, and then have a nice big seizure during her breathing treatments.

See? Three steps forward. Two steps back.

But it's the forward that I'm holding on to.

And now I will leave you with a few little extra insights into our hospital stay:

Yesterday, about 2:00 pm.
Me to the nurse after looking at how high Tess's heart rate and respirations were: Are you giving her Tylenol or Motrin preventatively for her fever?
Nurse: No, but we can.
Me: Well, I think we need to take her temperature now. She's very hot and her heart rate and respirations are really high.
Nurse: Sure. (She then proceeds to take it under Tess's armpit which is COMPLETELY INEFFECTUAL and I've told them this repeatedly)
Nurse: 99.4 No fever.
Me: That's not accurate. I know she has a fever. You need to do a rectal temp.
Nurse: Well, we'll just give her the Tylenol.
Me thru gritted teeth and fake smile while really wanting to shred this nurse into little pieces because with a sick child, we NEED to know how high the fever is and not just treat it without knowing: Sure.
The nurse leaves to go get the Tylenol and I rush to my bag and grab Tess's rectal thermometer, pop it into her little bum and get the reading.
The nurse walks back into the room.
Me: It's 101.7 NOT 99.4 I took her temp.
Nurse didn't even bat an eye at the total screw up of trying to tell me that Tess didn't have a fever only minutes before. ARGH!

Last night: Respiratory therapist for the nightshift comes in to do breathing treatments. I swear to God, she looked like she had just stepped right out of an 80's music video. Seriously guys, bangs for DAYS totally teased and hair sprayed into awe-inspiring heights complete with heavy purple eye shadow and a take no shit attitude.

I loved her.

And then Tess's nurse today was one who took such good care of her a couple of years ago when we were here with another nasty pneumonia. She's an older lady;full of piss and vinegar and always laughing.  I was so happy to see her come in today and she remembered us as well and was all excited to have "her island family" to take care of. She's a gem.

So as usual, the hospital stay is full of highs and lows and Tess is being her little warrior self. Honestly, the stuff that this kid has to have done to her would break an adult but she just takes it and keeps on going. She even got giggling at one of the CNA's who came in to help change her bed and started singing Let It Go to her.

Man, that kid is something.

Saturday, December 17, 2016

A contrary case...

So I figured I'd give a little update as far as the Toodle Bug, her seizures, and the cannabis trial is going.

It's not.

There! All caught up!

Okay, okay, there may be a little more to the story than that.

Back near the end of September, you may recall we started a trial of cannabis to help get control of Tess's seizures. We started her out on a teeny tiny dose three times per day plus a rescue med to use immediately when a seizure hit (she was still on all of her regular daily seizure meds and rescue meds as well).

At the beginning we thought maybe it was working. Huzzah! Tess's seizures weren't lasting as long and it seemed like there was a longer period of time between the big ones. Instead of every four to seven days, it was every eight to ten and once, almost two weeks.

Needless to say, we were cautiously optimistic.

Then she started to go backwards and the seizures were lasting for a longer time and the rescue med seemed to not help at all.  After discussing with the doc in charge of the cannabis treatment, we were told to increase the dose of the daily cannabis by 100% every two weeks until we saw a change. By 50% every two weeks if we saw some change but not a lot.

Welp, we saw a change; just not the one we were hoping for.

For those who aren't super familiar with Tess, she is a constant study in contraries. For example, Tess used to be treated with Ativan as a rescue med for her seizures but her reaction was the opposite of what most people's are when they take ativan. Instead of calming her down, it would jack her up. Another example would be that most people who have a seizure disorder have a spike in seizure activity when they are sick. Not Miss Contrary. Her seizures disappear when she is sick (something we are super thankful for since she struggles so much when she is ill without throwing seizures into the mix).  Another contrary Tessie trait is that she isn't bothered by her enteral (gtube) feeding when she is sick or even has the flu. You know, like most people would be. I can't even use it as a guide to how crappy she is feeling because she just does fine with it when most of us can barely stomach a popsicle.

See what I mean? A case of contraries.

But I digress. Back to the cannabis trial.

We had been warned by her Epileptologist in Boston (who is not in charge of the cannabis but of everything else seizure related) that some kids react badly to cannabis. It can actually increase their seizures and she was adamant that we needed to be on the lookout for that because it could cause Tess to go into Status Epilepticus , which is very dangerous.

Guess what Miss Contrary did once we started to increase the dosage? Yup, you guessed it. Her seizures got WORSE. They were more frequent, lasting longer, and were more violent. Plus, I had started feeling bad about giving her the cannabis about a month prior but was determined to keep trying so I just pushed that feeling aside. I can't really explain why except to say that desperation is a tricky master. But I know that whenever I get that feeling, I need to trust it. My instinct with Tess is pretty finely tuned in at this point and I just knew I was giving her something that not only wasn't helping, it was actually hurting her. A bad combination. The doc in charge of the cannabis trial wanted me to try going up again on the dose but I finally outright refused and said I was pulling her off until we could get to the mainland to buy a different strain to try. They agreed since I was so adamant about it (plus her Boston doc had been supportive of this trial on one condition; that we would be honest with ourselves if we saw signs that Tess wasn't reacting well to it and pull her off of it). We made a plan with the cannabis doc to try a different strain of cannabis as well as the rescue one, but for now she's not on any since we haven't had the time to go to the place on the mainland to buy it.

So that's where we are still at and, interestingly enough, she hasn't had a bad seizure since we pulled her off of it.  Of course, she also has been fighting a respiratory illness for a couple of weeks so that could explain the lack of seizure activity but still...too much of a coincidence for us to ignore. Plus she just seems more "with it" since we've taken her off the cannabis (even though the strain she was on wasn't supposed to have any mind altering affects, it would seem that it did).

Miss Contrary.

As her pediatrician likes to say, "My girlfriend plays by her own rules and makes them up as she goes along and just when you think you've figured them out, she changes them and you're back to trying to figure them all out again."

Preach, Doc S. Preach.