Tuesday, January 7, 2014

Catching Up

A lot has been going on here at the Reidy House during the last several weeks. Some good, some fun, some frustrating and some scary. In other words...more of the usual.

Since Charlie's mom passed away in September of 2012, we've had to come up with a new Thanksgiving tradition. The first year it was just us and to be perfectly honest, it was awful. We really missed "Grandma Reidy" and our tradition of gathering at her house with most of Charlie's nine other brothers and sisters as well as their spouses and kids. It is all Blake, Ellie and Tess knew because we went there every year for Thanksgiving. And when the kids got old enough, after the big meal had been consumed, Heather and I would take our kids out to see the latest movie that was playing and then go back to our hotel to swim and hangout. I used to really grumble about having to go every year, especially after Tess was born because it felt like so much work to pack everything up for just a couple of days plus having to take the ferry and then drive for two hours in often really rotten weather. I wished we could just stay home and have Thanksgiving. Well, you know that old saying, "Be careful what you wish for" because when that finally happened I realized how much I missed the tradition. And Of course Charlie really missed getting together with his family and so did Blake and Ellie. Long story short, we vowed after that first "home" Thanksgiving that the next year's would be different.

Enter Joel and Robin and their two kids, Keegan and Katie. Add in Heather and Norman and their two kids, Joe and Jack and well, let's just say that this past Thanksgiving was a lot more fun than the previous year and we hope that maybe a new tradition has begun.






Then my best friend, Kellie, and I took our two girls, Ellie and Hannah to see P!nk at the TD Garden in  Boston. If you are a fan of P!nk but have never seen her in concert, I highly recommend you get yourself to one, tout suite! It was awesome! And it was such a nice getaway for a night. A break from my normal routine that was very much needed.




It was also around this time that Tess started in with her junky cough which usually signals a major illness is on the way. After many, many home visits by Dr. Awesome, aka Jen, and a few consults with her mainland pediatrician, it's safe to say that Tess was on some pretty heavy duty antibiotics most of the month of December.

This is also the time that she started really requiring oxygen on almost a nightly basis. Sometimes even to the point of us having to get up more than once to increase the flow that she was getting. It was starting to freak me out a bit. WHY was she requiring the oxygen and WHY was she never fully getting her lungs clear?

Then on December 19th Tess just sort of crashed. I had literally been up with her all night trying to help her manage her cough, which she was choking on which meant lots of suctioning as well as trying to keep her oxygen sats above 90. I knew when we had the oxygen concentrator up to 3 liters and she still wasn't maintaing a good O2 sat that we were in some real trouble. And bonus, it had stormed the day before and we had lost power for a bit and even when the power came back on, my phone and internet did not. So there we were, with a very sick Toots and no way to call anyone for help. Good times. Good times.

By five o'clock that morning I had her bags all packed and ready to get on the ferry. I drove over to my dad's house because my phone still wasn't working and called Jen and she met us at the boat and did a quick check and agreed that Tess needed to be off the island. We got to her pediatrician's office and after checking her out he deemed her well enough to take home.

I wanted to throat punch him.  (even though I really do love him)

EXCUSE ME?! Did you just say take her home?! As in back to the island?! After the night we just put in with her?! Surely you jest.

But no, he was not joking and Tess, being the little stinker that she can be, actually looked really good in his office so I couldn't argue too much without looking like a totally neurotic mother. I did question the fact that Tess is notorious for acting well in his presence and then crashing again when home but the hubs and I got reassurance that she probably wouldn't have another bad night like that. So off we went like a couple of idiots.

And of course, back home as the weekend wore on she got sicker, and sicker and sicker and I had to keep calling Jen and Jen had to keep coming to my house until finally, on Monday the 23rd, both Sheila and Jen assessed Tess and said she had to go to the hospital. Most likely with pneumonia.

I burst into tears. I love Christmas. LOVE it. I was supposed to be having around 35 people at my house the next night for our annual Christmas Eve party. And I just KNEW, once Tess got admitted, we would not be able to be home for Christmas. I'm not gonna lie. I was devastated. To their credit, Blake and Ellie handled it far better than me when they found out that we may be spending Christmas in the hospital.  I am not proud of the way I handled it but they were being such good sports about it I figured I should too, so I once again put on my big girl panties and dealt with it. Or at least tried to.

Once at the hospital, after the ER assessment, Tess was admitted into Special Care and we were told that is was very, very "unlikely" that we would be released the next day in order to get home for Christmas. I cried again like a little baby. Yup. What a wuss.





Tess was given some IV antibiotics and actually had a really good night. And the next day she looked and sounded so much better. And, has luck would have it, a different pediatrician was on call and even though the notes he was given from the pediatrician the day before clearly stated that Tess was to remain in the hospital for another couple of days minimum, I began to prepare for my defense of getting her out that day. Let's just say, I should have been a lawyer.

Did I talk my way into getting her released in time for Christmas? You bet! Was it smart of me to do that? No, not at all. Did I pay for that selfish little mistake later? You bet!

We got home around 6:00pm on Christmas Eve. The hubs stayed home with Tess while I raced to change my clothes and get to my family's party where our two other girls already were.

Christmas Day was fun although I did have one of the worst migraines I have had in ages all that day. But Tess seemed to be doing better. Jen was coming every day to check on her and even came over on Christmas Day to give Tess her shot of antibiotics. Above and beyond once again.




But by the 30th, Tess was back to having a junky cough (it had never really been gone but was becoming more intense) and was requiring oxygen at night again. Sheila came out and put in an awful night with Tess once again trying to get her lungs to clear. By morning we were back on the ferry heading to her pediatrician's office. When he came in the room and sat down and looked at me and said, "Mama Reidy, what's going on with my girlfriend?", I just started crying again. I told him I didn't know why she wasn't getting better, that I was exhausted from not getting much sleep due to the alarms and oxygen, etc, and that I was, "DONE!".  I even raked my hand across my throat when I said it in the universally recognized "cut" motion for emphasis. Very dramatic. And I wonder where Ellie gets her flair for acting.

Poor Dr. Stephenson. He just looked at me and said, "Let's just admit her." I'm willing to bet that he probably really thought it was me who should have been admitted. And he wouldn't have been wrong. ;)

Off to the hospital we went. Tess was once again admitted into Special Care for two nights where she proceeded to prove once and for all just how crazy her mother really is. She couldn't have been healthier. I was so mad! Not that I want Tess to be sick but because I really wanted them to see what we had been dealing with at home. No dice. That little stinker just refused show them. So we came back home on Jan 2nd and bingo, right back to junky cough and requiring oxygen. Although in Tess's defense, she did have a cough the whole time we were in the hospital.

Now we are waiting for appointments in Boston. Dr. Stephenson, along with her Complex Care pediatrician in Boston, both agree that there is SOMETHING going on with her lungs and we need to try to find out what. They have put her on an inhaled steroid in the hopes that will help, and there has been talk of putting her on an inhaled antibiotic that is the same one that kids with Cystic Fibrosis use. Gulp. That doesn't sound too good to me but hopefully doesn't mean what I fear it means. That her lungs are starting be damaged from all the pneumonias and infections and she is now reaching a point in her development that this will be a new normal. That she will always need extra help to breathe properly. That she will always have a junky cough from now on. I PRAY that that is not what is happening but instead, it is something that can be fixed once we find out what is causing the problems.

But for now, Blake is on a very cool trip to Dominica with some kids from her college and Ellie is in the last part of her final year of High School and has received her first acceptance letter to a college in NH along with a pretty sweet academic scholarship. She will wait to hear back from all of the colleges she has applied to before making any decisions but the process is exciting.

And the hubs and I (and Tessie) are gearing up to take her to Ohio to train with her dog along with the rest of the January class at 4Paws for Ability. We'll be away for a little bit and I am very anxious about having her so far away from the docs who know her best. I am trying so hard to not let the fear of the "what if's" steal away the happiness of Tess finally getting her service dog. I want to try to focus on the adventure of it rather than the potential problems that could very easily come up.

So. much. to. think. about.

And so much to be happy about. I just need to keep reminding myself of that when the worry tries to creep back in.  One of my favorite Bible verses helps me keep things in perspective when I get too overwhelmed with all of the "what if's" in my life:


Pretty reassuring, isn't it? :)






2 comments:

  1. Not gonna lie...this one got me teared up. It's so generous of you to share Tess's life with all of us who truly care about all of you. As I was finishing up reading this I was scanning my brain for scripture to share with you to calm your anxieties and low and behold you already has one there. God bless you all!!

    ReplyDelete