Monday, March 10, 2014

Spine, Lungs and Poop, Oh My!

So last week was Tess's appointments with Orthopedics and the Aerodigestive Clinic at Boston Children's Hospital. It was also our first real trip with Oreo.

Overall things went pretty well. Oreo was a dream. She had a couple of days of some pretty long periods of just having to lay down and wait and she did it like a champ. Even when kids came over to play with her, or crawl on her as the case may be. At one point, a little girl had accidentally stepped on Oreo's tail and Oreo never even flinched. A lady in the waiting room, who had been watching remarked on it and I went on to say that, yes, Oreo was a good girl, especially given that she had just turned a year old two weeks ago. The lady then removed her glasses in shock, looked over at us and said, "Now that is a GOOD DOG! I thought she was like a week away from retirement based on how well behaved she is!", which of course was very nice to hear.

Oreo chillin' in the waiting room. See that shadow to the left? That's a little girl on her tail. :)

Next we moved into the little exam rooms to wait for the Pulmonary and GI doctors who were part of the Aerodigestive Clinic. The rooms are tiny so we had Oreo go in first and put her in a DOWN. Then we had Tess's wheelchair right in front of her. The Pulmonologist saw Oreo right away and remarked how cool it was for Tess to have her. We then proceeded to discuss all of the issues Tess has been having with her lungs and not once during that time did I have to speak to Oreo.  After she left the GI doctor came in and we all talked for about a half an hour. When it was time to leave, Charlie got the wheelchair and I grabbed Oreo's leash and said, "HEEL". The doctor did a double take and told us he had no idea that a dog had been in the room the whole time. That is how good Oreo can be. Of course I later remarked to the hubby that the doctor probably thought it was us that smelled like dog the whole time he was talking to us up until he finally realized an actual dog was in the room.

The hospital had a place where I could take Oreo out to go to the bathroom but the hotel, oh the hotel, nary a speck of grass or dirt to be found! What was a girl to do?! I ended up taking Oreo out to the sidewalk and tried desperately to coax her into peeing in the teeny, tiny patch of mulch that circled around the trees on the sidewalk. And considering that everyone who saw her stared at us with a look of "awwww" when they saw the service dog vest, I knew whatever she did we were going to have an audience for. I was completely stressed out. Oreo tried, God love her, but she didn't quite hit that mulch and suffice it to say, there was a puddle left on the sidewalk that I couldn't get away from fast enough.

By the next morning I had come up with a new plan. I would sneak her into the hotel's parking garage to do her business in an empty parking space. It was a good plan except for when anyone would enter the garage. I would dart out of that empty space and pretend to be leisurely walking the dog from "my" car. When the coast would clear, we would start all over again. I felt like a criminal! Like I was trying to score some crack or something. My heart would leap in my chest whenever I heard voices or a car's engine coming my way and I must admit to even ducking down between vehicles at one point in order to hide while screeching at Oreo, "DOWN!".  The dog finally peed and I raced out of there like my ass was on fire! But she still hadn't pooped and there was no way I was going to take her into the hospital later that day with unattended business waiting to happen at any minute.

Cut to another parking garage, this time Children Hospital's, about four hours later and about one hour until it was time for the appointment. In other words, GO TIME. Literally and figuratively. I grabbed Oreo and snuck over to yet another empty parking space and all but begged her to GO POTTY! Bless her little doggy heart, she did. Sweet relief for both of us.

At the Ortho appointment I had to finally fess up to Dr. M that despite the fact that he was looking at an xray of Tess in her scoli brace taken not an hour earlier, I was not putting it on her at home. Ever. I then appealed to him as a dad, not a doctor. I spoke of quality of life versus quantity and of how miserable Tess was in that brace and that, ultimately, I couldn't, and wouldn't, force her to live like that. I told him she had enough battles to fight in her life and this, in my opinion, was not one worth fighting for and that if it was his baby, would he make him wear it given all the reasons (there were more than I've written here) Tess hated it? He said to throw the brace out. He did give me other instructions on PT therapies and stretches we would need to do if she was not going to wear it but that no, if she was that miserable in it than it just wasn't worth it. Hallelujah!

The next day was the Aerodigestive Clinic which would tell us all about her lungs. I can't say I was too surprised (although still bummed) when the doctor confirmed that yes, Tess's lungs had become damaged from all of the pneumonias and pneumonitis that she has had. It explained why her oxygen requirement has increased so much the past year or so. She went on to say that in "kids like Tess", this is also the age that their lungs start to show the wear and tear they have taken. She explained that while she wouldn't be able to get Tess's lungs back to what they were like even a few year's ago, she could hopefully give us a new daily regimen that would help them a lot and at least get them working better than they have been lately. Next she asked us if we had plenty of nursing help. I wondered why she was asking and she told us that this new regimen was a lot of work and many families admit they can't do it all because it is so time consuming and pretty intense. We insisted that with or without nurses, give us everything and anything that would help Tess breather better and we would do it. Gratefully.

I am here to tell you, she wasn't lying when she said it was a lot of work. Twice a day we have to give Tess 2 breathing treatments via her nebulizer which take about 25-30 minutes or more, then she has to have her chest therapy vest for 20 minutes, then her inhaler. Then a separate inhaled medicine at some other point in the day. Everyday. And this is when she is well. It will get ramped up when she gets sick.  And this does not include all the seizure meds that she gets three times a day. So yes, it's pretty intense but I can only imagine how much harder it is on Tess and she doesn't even cry. She just takes it like so many other things in her life. And her ability to just keep going helps keep it all in perspective for me as well. Because if she can have it done to her, than I can at least make sure it gets done, even when it feels like I have just finished and it is time to start all over again and all I am doing is giving medicine. And let's face it, though it does take up a bulk of the day when totaled, it certainly isn't ALL day so I can just get over it already! ;)

I recently made the remark to someone that Tess is truly a child of modern medicine. It also helps that she has one of the most positive spirits I've ever met. She's a the best possible way.


  1. Love it....I love that there is something you can do for Tess to make it easier for her to breathe. I simply can't imagine what it's like being on guard constantly...never truly knowing if she's struggling because she can't use words to express her discomfort. I also found it interesting when you mentioned that "She just takes it like so many other things in her life.". When we who are born without limitations fall ill or have to endure a treatment that is uncomfortable or time consuming we usually complain but Tess....well, it's all she's ever known. She's the strongest little girl I know. GREAT POST!!

  2. Tessie hit the jackpot when she hot you and Charlie for parents and you and Charlie hit the jackpot when you got Tess, Ellie. and Blake. All of "Charlie's Angels" are exceptional and you are and have every right to be proud of them all. I am proud to be your mother, mother-in-law, and grandmother. You all care and take care of each other with such love and dedication. It doesn't get better then that.