Tuesday, December 10, 2013

What not to say to a parent of a child with special needs, my take on it

It seems to be all the rage these days for parents of kids with special needs to write blog posts stating their opinions on what to say, or not to say, in regards to their children with SN.

Here's my take on the subject:

ENOUGH ALREADY!

When did we, the SN parents of the world, get to tell other people how to talk to us? I mean honestly, unless you are being outright rude and mean (for example I will be forced to confront you if you use the word, "retarded" in front of me), I have no right to tell you what to say to me. And, in my own personal opinion, all of these well intentioned blog posts are doing the opposite of what the authors of them are intending. It is furthering the divide between parents of kids with SN and the rest of society, not bridging it. I mean, who would want to strike up a conversation with someone when there seems to be so very many things that they are not "allowed" to say to us lest they inadvertently offend us?

And let's face it, it can be a little intimidating to talk to someone who doesn't talk back or who you're not sure of their ability to communicate. If someone is making the effort, even if it is a bit clumsy and awkward, to talk to Tess, I am not going to berate them and tell them they are doing it wrong. Frankly, I am just happy that Tess is being acknowledged because so many times people act as if she isn't even there.

So go ahead, ask me questions if you're not sure what to say or how to approach Tess. Ask me anything within reason and I will gladly tell you probably more than you ever wanted to know about Tessie. And don't worry that I am going to be offended if your child is staring. It can be confusing for kids to see people who need wheelchairs, or make strange noises or odd motions with their hands. They will follow your lead with it so if you are nervous and "shushing" them and making them feel bad for being curious, they will be less likely to want to include our kids later when they see each other in social settings like school or the playground because they were told to "stop staring" and "don't ask that" as if our kids are too different to be approached. Encourage your child to come over and say, "Hi" and even ask questions if they have them. Kids are almost always staring out of simple curiosity and when allowed to ask questions, are very accepting.

Then there are the "rules" of not saying certain cliched phrases to us. No, "God only gives special kids to special parents" or "I could never be as strong as you." Yes, there are days when I hear those and want to scream at the person saying them that they have no idea what they are talking about. Thankfully, most days I can hear those cliches and just nod and smile or joke with them about it because people are saying them to me in an attempt to make me feel better, not bad. Got that? BETTER not bad.

Long story short, we, the parents of kids with SN, need to lighten up just a bit and stop trying to set rules on how we can be talked to. Most people aren't trying to be offensive, they are trying to be kind. How about we be kind in return and allow them a little latitude, not a lot of rules.

Monday, October 28, 2013

Who I run 4

The title of this post may be a tad misleading. I mean, let's be honest here, I don't run. Well, unless you count the time Ellie and I were in Rangeley and got out of the van to get a closer look at a moose on the side of the road only to have it sort of shake it's head, snort and stamp it's foot much  like a bull does before it charges you. Then I ran. Oh, yes, I did. I might have even left Ellie in the dust although, in my defense, I did yell to her to run so it's not like I totally abandoned her. Besides, we all lived to tell the tale so that's what really matters here. Am I right? Thank you.

At any rate, one of my new friends from the 4Paws organization where Tess will be getting her seizure alert dog in January sent me the link to the WhoIrun4 website and told me they thought it might be something I would be interested in for Tess. After looking over their site and then reading the many posts on their Facebook page, I knew I wanted Tess to be a part of it.

The idea is, a child with a special need or health issue gets matched with a "running buddy" who in turn dedicates their runs to that child. It is really an awesome idea. Now Tess, who has never been able to run a day in her life, goes on runs often by way of her buddy who posts to Tess thru their Facebook page and tells her how many miles, and where they ran, that day. Oftenvtimes the runner will take photos of things they saw on their run that they think their buddy will like. It's totally a win-win situation. The runners will tell you that often, when they feel like they just can't complete their run or their marathon, they will think of their buddy and all of the challenges that their buddy has to go thru everyday, and it gives them the extra motivation to continue and not give up. And the relationships that they forge are really quite heartwarming to read. Dare I say, you might even get the warm fuzzies from reading them.

Tess was matched last week with a running buddy and it has already been so fun to read to her what her buddy posts and show her pictures that her buddy took for her while out running. And I must say, Tess seems to really enjoy it as well. She gets her excited head bob and big eyes when I bring her my laptop and tell her that Cathy (her running buddy) has posted something for her. Below are some snippets taken from posts and pics Cathy has shared with Tess just this past week. (I share with permission from Cathy-because she is awesome in case I haven't mentioned that fact before.)













I mean, really, how great is this?! I love the idea that two people who were strangers just a week ago, are now buddies and cheering each other on. 

And once again it reaffirms my faith in humanity and just more proof that there are way more good people in the world than bad. 

And the warm fuzzies are especially nice when it’s your own child who gets to be a part of them. 


Tuesday, October 8, 2013

Choosing thankfulness

It's been a tough week and I am tired. Exhausted would be the word, if I had to pick one.

Last Sunday Tess developed an upper respiratory infection which quickly escalated to a trip to her pediatrician on Tuesday, which then led to us leaving his office and immediately heading over to the ER where he met us to admit Tess into the Special Care Unit of our local hospital. While there she ended up being given IV antibiotics, IV Potassium and a second antibiotic thru her gtube. She also required a lot of suctioning and oxygen. At one point her temperature went as high as 104.5 and her heart rate was in the low 180's while her respirations hit around 50-60 breathes per minute. Scary stuff.






Then, about two days after she was admitted, I got sick with it. Let me tell you, it was not pretty. I have not felt that miserable in so long that I can't even remember the last time. Luckily, the hubs came and stayed with Tess so I could go to the hotel and sleep for the night. Blake was coming home for the weekend so she decided to drive up that night and went to the store to buy me "sick" food and spend the night with me. And since no good deed goes unpunished, as she was leaving Hannefords, someone she did not know at all hollered to her in the parking lot to, "Put some clothes on you f^*#&^g whore!" Good thing she has her mother's sense of humor and just laughed it off.

 At any rate, by the next day I had decided that even though I felt horrible, I was in fact going to live, so I dragged myself back to Tessie's bedside to help with her care so Charlie could leave. Pretty soon, the doctors and nurses who were coming into her room began asking me how I was feeling. One sweet nurse even made me a cup of her peppermint tea and told me to drink it and then lie down while another nurse asked if I wanted to use their private locker room to take a shower. I'm pretty sure I must have looked absolutely gorgeous by this point.

Tess was taking her sweet time getting better but was finally released yesterday (Monday) morning at my and the hubby's insistence that we thought she was better and we were comfortable bringing her home. However, she is still quite sick. As in, sitting right next to me with her oximeter alarm on her toe all day to keep track of the level of oxygen in her body and the suction machine right next to that to grab all the gunk that she struggles so hard to cough up. Behind me is the oxygen concentrator which is currently pushing O2 into her lungs because she is not maintaining a safe level on her own. Next to that is her pulmonary vest that we have to put on her every 4 hours to try to loosen up all the congestion in her lungs. So. Much. Medical. Equipment.

It was a long night and has been a long day so far and I just want her better already!

Needless to say, my attitude could also be better. I have been grouchy and short and feeling quite sorry for myself. Not very attractive and something I would very quickly tell my girls was not very becoming if they were acting like that. So if I wouldn't allow them to have this kind of attitude, why should I allow myself to have it? Naturally, it got me thinking about how to change it. I am a firm believer in the old adage that you may not be able to control what happens to you but you can control your attitude towards what's happening to you. A friend recently made a comment to me that has stuck in my mind and it is along those same lines. She told me I could choose how I wanted to feel. I could choose to be angry, sad, bitter or any other negative emotion, or I could choose to find the good and the hope and the joy that, even if I had to look really hard, was sure to be there.

Well, huh.

So while I was finding myself setting up a nice little pity party as I was hooking Tess up to the oxygen this afternoon, I decided to try to change my attitude; I decided to practice being thankful in that moment.

And it dawned on me, all the things that just a minute ago I was feeling so sorry for myself about could be spun in another way;

What if I was thankful that when Tess got so sick last week, Sheila was here to help me just when I needed her the most and works in the very hospital we were going to and was able to help Tess while she was there?

What if I was  thankful  that we have a hospital that Tess can stay at that is pretty close to home so that Charlie can come and go when we need him?

What if I was  thankful  for the oximeter that keeps track of Tessie's O2 so that I can accurately be able to monitor how she is doing?

What if I was  thankful  for the oxygen concentrator because it means I can help keep her safe at home, at least for the time being, whereas without it, she would surely need to be in the hospital right now?

What if I was  thankful  for being so tired because it meant I was able to help take care of Tess and she is still here to take care of?

Although I am fairly certain the pity party train hasn't been completely derailed and will rear it's ugly caboose on occasion, in this moment at least, I am choosing my attitude.

And I choose to be thankful.


                              photo credit:Google Images







Sunday, September 22, 2013

Testing...1,2,...7?

Well friends, my little Toodle Bug has really gone and done it now. She has ruffled the feathers of some people in pretty high places and I have the letter to prove it. Well, I did have the letter but I threw it away in a fit of hysterical laughter. Because I'm a rebel. And, unlike the people who sent us the letter, I have some common sense.

The letter was from the school but really not. They were just the messenger. No, it was actually from a State agency that oversees school-wide testing and then sends the results to the school in your district.

I didn't realize when I opened the letter what was happening. Because Ellie's scores were the first to fall out. Naturally I read her letter and basked in the glow of words like, "Exceeds proficiency" and "top 5% in the State".  Yes, I must confess to being unabashedly proud and feeling awesome by association like all mothers do when their child shines at anything. It's like you want to say, "That's right people, I gave birth to her and isn't she just magnificent?!" Admit it, we all do it.

But I digress.

As I was smugly rereading Ellie's scores, another letter fell out. What was this? More bragging from the State? Okay. I guess I can deal with that. Only upon closer inspection, this didn't quite read the same as the previous one. And it wasn't Ellie's name on the top; it was Tessie's.

And then I saw what was clearly intended to shame me into some quick action on behalf of my poor child. In big, bold typeface were the words,


"YOUR CHILD IS SEVERELY BELOW PROFICIENT!" and below that the number: 7.

Oh, how the mighty had fallen.

Yup, The Toots had scored a measly seven on her PAAP test and the State was none too pleased about it.

Forget that the kid had been hospitalized countless times last year, forget that her seizures had gone crazy so she was on enough medications to put down and elephant, and forget that she had physically been in school 4 days out of the whole year (she did have a little homebound instruction but was too sick and/or medicated to be able to really do much of anything despite the best efforts of her ed-tech), no, we were catching hell because Tess was just not doing what the State, in all it's infinite wisdom, thought she should be.

The school did try to appeal to the State to have some common sense and give Tess a waiver so she wouldn't have to take the test. And once again, in all it's infinite wisdom, the State refused to grant the waiver.

It is all so ridiculous that I can't even believe I am writing about it. You cannot, with any validity whatsoever, test a child like Tess. It just isn't possible. Between her illnesses, meds and quite frankly, diva-like attitude when it comes to anything school related, she cannot be depended upon to reliably show her knowledge on any given subject even if she knows it. The lack of empathy and understanding from the State on this is very telling. They just want statistics regardless of how inaccurate they are and the kids' needs come second to that, or not at all.

Plus, to be honest, it still stings to see stuff like that. I know what she should be doing at ten years old! I don't need a letter with bold print yelling at me to tell me she is not up to even what other kids her age with special needs can do. And it is so unfair to Tessie. She is smart. She is witty. She understands so, so much and this number reflects none of that. And while the school and I have had issues in the past, I have to say, this is also very unfair to the school because it makes it seem as though they should be able to do a better job of having her learn what the State thinks she should despite the extenuating circumstances of Tess being, well, Tess.

But ultimately, my sick sense of humor has won out and I just think it's funny. Ludicrous, but funny.

And I did make sure Tess knew that the State was on her tail as I waved that paper in front of her. Because I'm certain that that information will totally change her illnesses, seizures, and attitude for future tests.

You're welcome State of Maine legislators. You're welcome.





Tuesday, August 20, 2013

Make A Wish

As many of you already know, several years ago now, Tess was granted a wish through the Make A Wish Foundation of Maine.  After talking with her wish granters over the phone and going over possible wish ideas, it was time to try to make a decision. What would Tess wish for if she could have anything in the world?

It was a daunting task simply because, as much as possible, I really wanted it to be Tess's wish. Not mine. Not Charlie's. And not Blake and Ellie's (sorry girls-no caribbean vacay for you!)

I also wanted her to ultimately make the choice for herself so, before the wish granters came to visit us, I had already spoken with them and told them what to bring for options for Tessie. We were so excited when her wish granters arrived with a basket of goodies and the official Make A Wish certificate! Then it was time to officially make a wish. The first option was a trip to Orlando, Florida to go to the Nickelodeon Studios and see Spongebob in person (her infatuation with Toy Story 2 had not yet taken hold and she was a total Spongebob girl) and possibly swim with the dolphins, or, option two: get her a seizure alert dog so we could all have some peace of mind, and she could have a very best friend that was all hers. Someone who could be with her through the good times and the bad and just love her up whenever and wherever she needed it.

The wish granters came prepared with photos. One of a couple of gorgeous service dogs, and one with Spongebob. Of course, we couldn't be sure she fully understood what was being asked of her, but she repeatedly chose the photo of the dogs after being asked, "Would you rather go see Spongebob or get a doggie to play with?".

Personally, I was thrilled with her choice. So were the wish granters. And as it turned out, it was a very good thing they were so thrilled because we ended up needing their support to get the wish granted because of the cost. The cost of which I had no idea when asking, would be so much.

As in, it was three times the cost of the usual wish granted. THREE TIMES. Yikes! When I got the call telling me that we may have to go with the other wish we had been thinking of, I immediately agreed and told them that I would have never asked to begin with if I had known how much it would end up costing. But Tess's wish granters weren't ready to give up. They, with our local Make A Wish chapter went to the State chapter on Tess's behalf, who in turn, went to Make A Wish's National Board to get the necessary support for this wish. We were feeling the love, let me tell you!

It took quite a while to get the approval but in the end, boy did they support us. They called to tell us that they loved the idea of a service dog as a wish and really wanted Tess to be able to have it granted. Right down to paying for all expenses involved with our trip, including a nearly two week stay to Ohio where we'll train with the dog, as well as paying for any and all dog related expenses for the first year. From vet check ups to dog food to toys and bedding. Everything. I cannot tell you how amazingly awesome the support from Make A Wish has been to see this wish come true for Tess.

Due to the money needed and extensive research to find a place that would allow someone with the level of disabilities that Tess has to get a service dog, this wish has taken an unusually long amount of time to fulfill. The usual wait is six months. For us, it will have been nearly three years from the time the wish was granted to when Tess gets her new furry best friend. And I just know that the wait will have been worth it.

We are slated to be in the January Class at 4Paws for Ability in Xenia, Ohio. We will train for ten days with Tess's dog and at the end of that time, if we (both the dog and us) pass the test, we get to bring the dog home with us.

It is amazing what 4Paws is training the dog to be able to do in order to help Tess above and beyond the seizure alerting. The dog will be trained to get Tess's "seizure emergency bag" and bring me the phone when she is having a seizure. It will be trained to pick up toys that Tess drops and "give" them back to her. To press the handicapped door buttons (on buildings that have them) so the door will open for us without me having to try to lean around her wheelchair to try to get at it. To help her when she is sad by giving "loves" and "kisses". To lay beside and comfort her when she is in the hospital. To be her one"constant" in a world that is often filled with uncertainty.

As for me, I am praying that Tessie and her dog bond. That they become buddies. Pals. Besties. Every person should get to have a best friend and I cannot think of a little girl who is more deserving of one. Who has more love to give than The Toots?!



I am so grateful to 4Paws and Make A Wish for giving my Toodle Bug that opportunity.


4Paws January Class of 2014, here we come!

*images grabbed from Google Images*

Saturday, July 27, 2013

Ignorance is bliss

For the past couple of months (maybe even longer)Tess has been crying at night. And I'm not talking a little fussiness here and there. No. I'm talking every 15-20 minutes ALL NIGHT LONG she will break out in pathetic, heart-wrenching sobs. This in turn escalates her heart rate which then proceeds to set off her heart/oxygen monitor alarms. So between the crying and the alarms, sleeping has become quite a poor joke around here. And I am one exhausted, grumpy chick.

So irrationally grumpy that when I see anyone on Facebook complain about their lives, I have to physically walk away from the computer so I won't respond with an inappropriate, snarky comeback something along the lines of, "ARE YOU FREAKIN' KIDDING ME?!?!  YOU THINK THAT'S A PROBLEM??!! COME SPEND SOME TIME AT MY HOUSE AND THEN WE'LL TALK!!!"

So yeah. That kind of miserable, irrational attitude is not exactly beneficial for keepings friends. Especially since everyone's problems are relative to their own lives and shouldn't be compared to the abnormally huge and constant problems we are faced with on a daily basis in my house. It's just not fair to them. So I close my laptop and wait until the urge passes. Luckily, it usually passes pretty quickly.

But in my defense, since Tess's surgery in May, nothing has been the same. She has been way more unhappy than usual. And not just at night. Many, many days she is crying and unhappy and not engaged in her little world.  And there has been all this agitation from Tessie. This is so not the little girl that I have known for the past ten years. Your guess is as good as mine as to what is wrong. We have wracked our collective brains, along with whining to her pediatrician countless times and even to her surgeon to try to find the solution. Any solution.

We have literally changed her bed, bedroom, who she sleeps with, medications, posters on her wall, night time rituals...anything and everything we could think of to help her. Last night I even let her go to bed (with me) without her knee immobilizers, cast and wedge to see if it would help. And she slept like a log. But I am not ready to get too excited that we may have found the answer just yet. She has fooled us before into thinking we had it figured out only to cry and cry a couple of nights later.



This is where having a child who cannot talk really, really sucks. WHAT IS WRONG?!?! If she could just tell us. And I'm sure she's thinking the same thing. Like, "Mama, why can't you figure this out and help me?".

Some say she is spoiled and they would be right. Tess is spoiled and I am the first to admit it.  But every "mother's instinct" that I have is screaming at me that that is not what is going on here. There is SOMETHING wrong. I can't help but wonder if she has been traumatized by the surgery and then the pneumonia and spending so much time in hospitals between May and June and now she is scared. Sort of like a Post Traumatic Stress type deal. I mean think about it. Tess is smart, and I'm quite certain she can put together that one day her daddy and I left her in this hospital and she was happy and feeling good, then BAM! She wake's up and is in major pain and doesn't know what the hell has happened other than mama and daddy weren't there when she fell asleep and when she woke up she hurt. Then, to top it off, she gets very, very sick and is whisked away in an ambulance that mama and daddy aren't allowed to go in and gets admitted into yet another hospital all alone (until we showed up about ten minutes later). To a little kid, that has got to be pretty dang traumatizing.

Then I feel guilty, because ultimately, I am the one who agreed to put her through all of this. She had no say in it at all. And I must confess, I have moments where I totally regret it. I know in my heart is was necessary and is what she had to have done for her own health benefits, but right now, in the thick of whatever this is,  I can't help but think longingly back on my pre-surgery Toodle Bug and how well she was doing. What is happening now actually hurts my heart. Rationally I know it's not my fault but that part of me that's in every mother, the part that takes on all their kid's problems, says, "Oh yes it is your fault, Joanna. If you hadn't agreed to it, she would be fine right now".

I just want Tess to feel good and be happy. And right now it has become painfully obvious that I don't know how to make that happen whereas, in the past, I have been able to do that for her. I guess what it all boils down to is this: I feel like I am letting her down and that is not a good feeling for the person who supposed to fix everything for her.

I'm sure this is all part of her recovery process but dang! When I thought about this surgery in the early stages, none of this ever even entered my head.

Sometimes, ignorance really is bliss.


Wednesday, July 3, 2013

Blog Love

I read several blogs on a daily basis and one of my very favorites is TellingDad. Greg Zellers is the author of TellingDad and I am here to tell you, the man is one giant (literally, the man is tall) goofball. If blog crushes were a real thing, mine would be on TellingDad.

Last summer he did a series of posts called Take Me With You in which his readers, like myself, printed out a cartoon version of him and took it with them for photo ops to random places. Personally, I took him to New York City for Ellie's Sweet Sixteen and got our photos featured on this post here. Fun and Silly? You bet. Totally worth making people wonder why we were holding up a paper doll for photos? Absolutely.

He also travelled to Chicago for a blogging adventure and offered to send postcards to his readers upon request. He did not realize how many readers he had and suffered the hand cramping/disfigurement to prove it. I love my postcard just because, once again, it was silly and fun.

Although for the most part his blog is hysterical, there are some posts that tug, pretty roughly, on the heartstrings. He and his wife started the Sweet Dreams Fund after his wife's cousin lost her mother and children at the hands of her abusive ex-husband.

And just this past spring, he wrote a funny yet touching love letter to his wife while she was away taking care of her dying mother. See? He's a good guy.

Now he is asking for our help to get flip flops to kids in a Village that he and his wife help support in Malawi. They were going to do a campaign where you had your kids walk one mile barefoot while people pledged money to their efforts. Then the concern of what could happen to the kids' feet became a factor. They could get hurt, blisters, cuts, and infections. The idea was scrapped due to those concerns. But do you see the irony here? We wouldn't want our kids walking even a single mile without decent footwear while these children in Malawi walk EVERYWHERE barefoot. And what really struck home for me about this was when I thought about the number of shoes that Tessie has. Her shoe collection at times has rivaled Imelda Marcos'. And she cannot walk. I must admit, it made me feel a little bit uncomfortable when I thought about it in that context.

So I made a monetary donation and offered to spread the word (even just a little) here at Travels with Tessie Toodles. I'm hoping those of you who can will click the link below and make a donation as well and/or copy the link and share on your preferred social networking site.  This is not meant as pressure or guilt. It is simply an, "if you can and want to, then here is the info you will need to help".

Whether you are moved to help with this campaign or not, I hope you take some time to read some of Greg's posts. You won't regret it.

Here is the link to the flip flop campaign(or you can click the word link):

http://www.tellingdad.com/2013/walk-a-mile-for-their-shoes/

TellingDad himself in all his goofball glory.  *photo credit to TellingDad*

Thursday, June 27, 2013

Turn left

I have a sick sense of humor, as I'm sure I've mentioned in other posts.

A very sick sense of humor.  As in, when someone trips and falls, my initial reaction isn't the normal, "Are you alright?" It's more uncontrollable laughter. The type of laughter that is so completely inappropriate that when I try to control it, it gets even worse. And while I'm not exactly proud of this character flaw of mine, it has saved my sanity on many occasions. 

Like when Tess was so sick a couple of weeks ago and back in the hospital for the second time in a three week period. 

The hubs and I have a pretty good system worked out when Tess is in the hospital. Usually, I spend the days and nights with her while he tries to stay home with the older girls and go to work. He comes to the hospital the first day of her stay and then, if we can manage it, not again until she is ready to be discharged. However, when she had her bilateral hip surgery, it was such a major deal that we booked a hotel room right down the street from Children's Hospital and switched off at night, every other night, and we both stayed with her during the day.

Then, after we had come home and she got sick with a post op pneumonia and ended up needing to be transferred from our small, local hospital to a better equipped one, I was too scared and she was too sick for me to feel safe enough to let him leave us, so we were both spending the days in the hospital with Tess and at night, he would drive to his parent's house about a half hour away to sleep while I stayed with Tess. 

Along with our super duper hospital stay system, we also have worked out a meal system because other than our local hospital, they do not provide parent trays unless you want to be charged a fairly hefty fee for it. And take my word for it, the food is just not good enough to warrant that. Anyway, our deal is, if the hubs has spent the night away and is coming in in the morning, he brings breakfast with him. Then I would go get lunch, then he would get dinner and so on and so forth. 

No problem when we are at Children's Hospital because we have been there enough that, even though it is a huge hospital,  I finally have got my bearings about me for the most part so I can get to the cafe,  or Au Bon Pain or CVS, or you know, the gift shop, not to mention the laundry room, the Prouty Garden, etc. It's all very familiar to me now, enough so that even when I get "lost", I can quickly right myself. 

But Maine Medical Center? Forget about it. It's like Dr. Suess was the architect and Mr. Magoo was his assistant. The place makes no sense and seems to have no rhyme or reason to it's design. 

Have I mentioned that along with my sense of inappropriate humor flaw that I am also directionally challenged? 

VERY directionally challenged. Ridiculously challenged. Like Zoolander challenged (remember from the movie? He can't turn left). Yeah, it's that bad.

So after we had been at Maine Medical for a couple of days with the hubs going to the cafe to get every meal because I would whine like a toddler that I just didn't know how to get to the cafe and he did so it only made sense for him to get the food, he decided enough was enough and it was time for me to put on my  big girl panties and go. get. the. damn. food. already.

Sigh. I did my best martyr routine but to no avail. If I wanted food, I had best go looking for it. He did however, very helpfully, give me exact directions.

"Turn right out of this room, go down the hall, out thru the double doors, down a little ramp and right again. The elevators are there. Then hit the B for basement and head left, then left again and then left again and you're at the cafe."

 Simple. Easy peasy lemon squeezy. Even for the directionally challenged. I was confident. Ready. Good to go as it were.

I headed out of the room and made it to the elevators without any mishaps, pressed B and exited out into what appeared to me to look like the way we had come in a couple of days before. Near the ER. Hmmm....And when I went down the hall, after turning left, the only left appeared to lead out to the parking garage where I was positive we had parked our van. To my right were signs reading ER and Day Surgery.  Nary a Cafe sign in sight.

Curiouser and curiouser.

I felt my heart start to speed up in that fun, panicky little way it does when I know I have zero idea of where I am. But I was a girl on a mission. I would not turn back at the first signs of trouble. I forged ahead towards Day surgery and found a maintenance worker. I very politely asked which way to the cafe? She looked at me like I had just dropped in from Mars and shook her head as if to say, "Lady, you are nowhere near the Cafe." Then she started pointing back down the hall the way I had come and proceeded to tell me, in a foreign language, how to get to my destination. The only word I understood was "elevator".

Well, crap on a popsicle stick. Elevator? Really? Then what? I pretended to understand what she was telling me and reversed direction. Screw it. I went to the elevator and prayed that I would find someone who spoke my language. The language of the overwrought and directionally challenged. I was in luck. A very nice man told me that I should have gotten off on the ground floor not the basement.

  GROUND floor, Charlie. THE GROUND FLOOR and not the basement. I was ready to kill the hubs. But I made it, finally, to the cafe and set about foraging for something to eat all the while muttering under my breath about what a rotten, dirty trick that was to play on me and oh yes, he would pay for that one. Pay dearly, thankyouverymuch. I could just picture him sitting up in that room chuckling at the mental image of me aimlessly wandering through the bowels of the hospital. Because I am not the only one who can have a sick sense of humor. Yeah.

After paying for my meal and then literally getting lost leaving the Cafe, I headed back to the bank of elevators but what was this? They weren't the ones I stepped out of. I figured they had to go to the same place so I hopped in and pressed 6, very relieved that my ordeal was almost over. When I got out and headed down what I thought was the right hallway, I saw that I had somehow made my way to the Psych Ward. Was God trying to tell me something, I thought in my haze of panic? And by this point I probably looked quite deranged what with my humongous tray of food overflowing, the limp I had now developed from new sandals that had chafed a lovely blister on my heel, and what I am sure was a crazy look in my sunken in, exhausted looking eyes. Plus, let's face it, I was still sort of muttering to myself about the very real possibility of hurting the hubs. Yup, in hindsight it's a wonder I got out of there at all.

After a very kind nurse took pity on me and practically walked me all the way back, I finally made it to our room, handed the hubs the tray of food with a murderous glare and shrieked at him, "BASEMENT?! BASEMENT?!" His response? "Did I tell you to go to the basement? Whoops. Sorry. The Cafe is on the ground floor. So what'd ya get me good to eat?"

The man is lucky to still be breathing.

The next afternoon the hubs seemed to think it would be a great time to try to take Tess off of the oxygen because she had been having a good day, and after discussing it with her doc, with me telling both of them I thought it was a bad idea and that she wasn't ready, they removed the oxygen from her to see how she managed on her own. I want you to remember that I TOLD the doc and the hubs that I did not think this was a good idea and I got overridden.

We moved Tess from her bed and into her wheelchair for a change of position and put her movie on then went and sat on the bed/couch and started messing with Charlie's cell phone. It used to be Blake's but she had upgraded to an Iphone so the hubs got hers by default so it still had her outgoing voicemail message on it. We figured it was high time to change it. After messing around trying to figure it out and a few different attempts at leaving just the right message on there, we heard the monitor alarms start to scream. Both of us jumped up (you know, after remembering that oh yeah, there was a very sick kid in the room who, just maybe, we should be paying attention to) and realized her oxygen had dropped down to 86 while we were playing with a cell phone. Poor Toodle Bug was laboring to breathe as we fussed with just the right wording of an outgoing message on a cell phone. Because we know what's important. That is called good parenting, my friends. Or neglect. Whatev.

Charlie grabbed one side of Tess as I grabbed the other and within seconds we had the oxygen on her and turned up all the while bickering about whose fault it was. The nurse came running in and found us like that. Holding on to Tess and bickering. And both turned to her and started telling her our versions of what had just happened. In my version, I never wanted her off the oxygen to start with so clearly this wasn't my fault. In the hub's version, he didn't give a crap about the outgoing message on the phone but I distracted him with it so clearly it wasn't his fault. The nurse was cracking up at us and needless to say, no lasting harm came to The Toots from that little slip up.

After the nurse left, I must admit, Charlie and I laughed pretty hard as well. It was just so surreal. And stupid. And scary. And so not the life we had envisioned. But there we were. And ultimately, if you can't laugh at the scary stuff, it will swallow you up.

So yeah, I have a pretty sick sense of humor. And thank God I do. Now, if I could just figure out how to turn left....

Monday, June 10, 2013

Just keep breathing

Okay. Where to begin? Oh, I know.

"Let's start at the very beginning. A very good place to start." (a little Sound of Music nod here)

If I recall correctly, when I last left you, Tess was on the road to recovery from her bilateral hip and tendon lengthening surgery.  We were able to bring her home after about eight days in the hospital. She seemed to be doing quite well. She was requiring some supplemental oxygen at night but we thought it was due to pain medications that, when mixed with her seizure meds, suppressed her breathing a little. We were told it was all  a normal post-op reaction. And it was. Until it wasn't.

Sigh.

After we were home for three days, Tess developed a cough. My radar went off slightly but I was so very tired I just couldn't fathom anything else to have to deal with. I mean, she had survived a major surgery without any big complications. We were over the hump. We had to be.

Suffice it to say, I couldn't have been more wrong. And thank God, Sheila was here when Tess got really sick. We came home on a Wednesday and by Sunday afternoon my  livingroom was full of EMT responders and our Dr. Jen while our home suction machine was whirring and the oxygen concentrator was going trying to get Tess's 02 sats up to a decent level. It was chaos. Controlled chaos but chaos nonetheless.

The ambulance crew got Tess loaded up and took us by ferry to our local hospital on the mainland. At first the nurses and docs didn't think much was wrong with Tess. Her sats in the ER looked great. Her chest x-ray? Wonderful. Blood work showed a slight white blood count elevation which is an indication of an infection but given how great everything else looked, everyone was pretty calm about it all. Still, the pediatrician on call wanted her admitted into Special Care for observation. Thank the good Lord. We had no more got her settled into her bed than she had a coughing spell so bad that her oxygen level dropped to 61. Did you get that? SIXTY FREAKING ONE!!

They slapped the oxygen on her and suctioned her out while I stood back and had a small stroke after practically shrieking at them to "DO SOMETHING!" because you know, I am helpful like that. I just know that Sheila (who, God bless her was still there with us) and the nurse on duty were so thankful I was there to tell them to "do something". I am quite sure they wouldn't have been able to grasp that "something" (mind you, I had zero idea what) needed to be done without me. You're welcome, Sheila and nurse on duty. You're welcome.

By early (like 3:30 am) Monday morning Tess had spiked a fever. They repeated the blood work and her white blood cell count was quite high. She was immediately given a shot of antibiotics and her regular pediatrician was scheduled to come in and see her in the morning. When he got there, he ordered some IV antibiotics. Tess had gotten a little worse but we figured it was pneumonia and her doc really didn't want to repeat the chest x-ray because he figured why expose her to more radiation when it was quite obvious what was wrong.

By 9:00 Monday night Tess was requiring more oxygen just to be able to maintain an okay level of 02 in her blood and she was breathing super fast. Like 51-61 breaths per minute fast. Not good. We had an awesome nurse who came in to tell me that she did not like how Tess was doing and had called her pediatrician to let him know. He ended up ordering another chest x-ray and was on his way to the hospital. My spidey senses were tingling. Especially when we were moving her around to position her for the x-ray and she never woke up. Not once. Not even a flutter of her eyelids. I had stroke number two right around that time.

We were back in Tess's room when her pediatrician came in with two x-rays in hand. He showed me the difference between the two, the first one taken the day before when she was admitted, and the second one from that night. Even I could see from them that Tess was in a whole lot of trouble. On x-ray, her left lung was a "total white out". In other words, full of pneumonia. Her right lung was also affected but not nearly as bad. He then proceeded to tell me that as soon as he saw the x-ray he had made a call to Maine Medical Center in Portland and, after discussing it with their on call pediatrician, had made the decision that Tess was too critical to stay at PenBay and would be transported to Maine Medical Center ASAP. And to add insult to injury, she couldn't go in a regular ambulance because she was too sick and that Maine Med was sending their Intensive Care team/ambulance for her and I wouldn't be allowed to ride in it with them.

I just started crying. I looked at him and told him that I had never left Tess's side when she was sick. What if she died and I wasn't there to hold her hand and tell her that I loved her one more time? Poor doc Stephenson. He was patting my back and telling me that he thought Tess would make it but that she was very, very sick and might need to be intubated to have a machine breathe for her. I told him I needed Charlie and asked how much time did I have before the ambulance showed up. He informed me it would be about two-three hours before she was transported and that if I thought I could get Charlie here in time, then I should call him. I got on the phone to my dad. He has a lobster boat. He could get Charlie to the mainland. To me. To us.

By 11:30pm Charlie was at the hospital with me and at 1:20am we met the Intensive Care team that would take Tess to Portland. The doctor in charge came to talk to me and the inevitable question came up...Have you signed a DNR (do not resuscitate) on her?  I looked that doctor dead in the eye and said, "You need to hear me. She is a FULL CODE. If the worst should happen, DO NOT stop working on her until you see me again." Then it was time to say goodbye to Tess and I leaned in and whispered to her that I loved her and was so proud of her and that I knew she was very tired but she needed to keep fighting. Don't stop fighting. Just keep breathing. Mama needs you.

Then I kissed her goodbye and they were gone. And it was like deja vu from the night she was born. Right down to the whispered words of, "Just keep breathing. Mama needs you."

Charlie and I loaded her things up, thanked Doc Stephenson and her nurse, and got in the van to head to MMC. It was about 1:40am. We arrived at MMC about five minutes after Tess had gotten settled into her room. Her transport went without a hitch and the team was very happy with how she was doing.

Tess needed another 2 x-rays and 2 ultra sounds of her lungs over the course of the next eight days. There were many worries and she was the sickest I have ever seen her. Regular discussions of the possibility for needing chest tubes and intubation were happening. When the doctor's making rounds kept asking me if she looked like she was back to baseline after the second day I had a small spell and proceeded to instruct them to not ask me that again. To stop comparing her to the stereo type they have in their minds of "kids like Tessie".  I then told them to keep in mind when comparing her to "kids like Tess" that this, in fact, WAS Tess. Not a kid like her. There is no other kid like Tess. My Tess is smart, funny, engaged in her world, giggly, loving and on and on. She is NOT this listless, lifeless lump that is laying in the bed struggling to breathe. Next I showed them photos of Tess with her sisters and said, "Look at her! Look at her eyes, her expression, her level of engagement and then you tell me if you think Tess looks back to baseline.

They did not ask me again until about five days later.   Yes, I was probably a little harsh with them but if I don't stand up for Tess and tell everyone who she is and what she can do, they just assume that she is happy to lay in bed and stare blankly into space. Such a stereotype and one that needs to stop.

Alas, it was a scary few days and ones that won't be leaving my memory anytime soon, if ever. I pray to God she won't slip back and end up sick again. She still technically has pneumonia but we are managing it at home now. She has not needed oxygen for the past two nights which is a good sign. Her nurse is here today and said her lungs sound better. Not super great but definitely better. Once again Mad Eye Moody comes to mind with his favorite saying, "CONSTANT VIGILANCE!!"

And we're on it. Poor Tess can't get a minute's peace. We run in with every cough or yawn. We take turns sleeping at night in her bedroom so that one of us is literally always right there to help her if she needs it.

And when I get sick of it, and feel so tired I just want to cry, I think to myself, "You suck it up, ya big baby and be grateful she is still here to do it for. Because there were a few dicey moments when it looked like a very different outcome was going to happen. Then I remember leaning over the ambulance stretcher and whispering into her little ear, "Just breathe. Mama needs you."

And I send a prayer of thanks up to God along with a plea to keep her well and please, oh please, give me strength and courage. They were both in short supply last week. At least, it felt that way.

Just keep breathing. Good advice for both Tess and me. ;)



Saturday, May 18, 2013

Catching my breath

Okay, I might be a little overtired, overstressed and  cranky so fair warning to the loud, obnoxious jerk in the room next to mine...
Turn off your stupid speaker phone and shut your idiotic pie hole before I come in and shut it for you! If you interrupt my sleep tonight I am going to bring a rain of crap on you the likes of which you have only witnessed in psychotic horror movies.
In the words of Bobby, "The bear as awoken from it's slumber." Be afraid. Be very afraid. 


I wrote that last night as I was laying in my hotel bed trying to get some desperately needed sleep. I was going to post it as my Facebook status but then decided that I might come off sounding a little, well, crazy.

So I deleted it and wrote it here instead so that everyone has the joy of reading an overwrought woman's rantings.

You are welcome.


Tess finally had her bilateral hip surgery and tendon lengthening on Tuesday morning. 


                   After being moved out of ICU to a regular room


I finally had my breakdown yesterday. And that was before I wrote the above rant. And the anxiety?  Can I just tell you I have experience with anxiety in my life so it's not like I'm unfamiliar with it, but the level that it has reached this week has been scary. I feel like I'm in a body I can't control. My heart will literally lurch in my chest, my breathing quickens, I start to sweat and feel all shaky, and then I feel like I'm walking on the deck of a boat that is in choppy waters.  To top it all off, I have been exhausted from the stress and lack of sleep so it was like the perfect storm for a creating a breakdown. You can only imagine how completely DONE I was. 

It wasn't pretty but it was necessary and I felt much better after sobbing over the telephone to my best girlfriend for about thirty minutes. A good night's sleep didn't hurt either.

Thank you, Kellie, for listening and my noisy neighbor for shutting up.

Right now, everything is moving along as it should be. Tess is FINALLY starting to come around. For the first three days post-op she had an unexplained tachycardic heart rate (about 160-170 beats per minute), a low grade fever, needed suctioning because she was having a hard time managing her own phlegm, kept dropping her oxygen stats at night which required putting her on O2 to help her, and was so zoned out on drugs she couldn't even begin to focus her eyes. 

Then on the second night she had a seizure. 

I would ask every team of specialists who came in, from her surgeon to the pain management team, to the complex care team to the epilepsy team, "Are you sure this is all normal? Why is her heart rate so high? What is causing the elevated temperature? Why can't she seem to focus her eyes? Is it normal to be so unresponsive? Are you sure she isn't developing an infection?"

"She looks good."

"Kids will look like this after such a major surgery. Imagine how you would look and feel if we had just rebuilt both of your hips and then lengthened your tendons. You wouldn't look good."

"Kids like Tess take a little longer to recover because she has so many other medical issues that come into play."

"We do need to watch her very closely but we think she just needs time."

GAH!!!!!!!

I like black and white answers and not the vague ones that basically mean, "Watch and wait and respond accordingly".

But of course, all these docs have been right and I have been a stressed out train wreck over what basically amounts to an overactive imagination that focused on all the bad that could potentially happen.

How have these other mom's done this and seemed to keep it all together? I have been so scared! 

But today Tess has turned the corner. She has smiled some. She can focus her eyes (we have backed off the pain meds some) on me and respond and she has been excited (not her normal level of excitement but getting there) to watch her favorite movie.


                  Small smile there while watching her movie


In other words, per usual, my Toodle Bug is handling all this far better than her mother.

And now, with these improvements, I finally feel like I can take a minute to catch my breath.

Ahhhhhhhh.

All this week there was a quote from Elizabeth Stone that kept popping up in my head...

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”

Truer words were never spoken.
                         Seeing Tess for the first time after surgery




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 of...by 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.

But....

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* 

Sunday, March 31, 2013

Easter Stories

Today is Easter and it is the first "real" holiday that we haven't been able to celebrate in our traditional way. Not bad considering we live with a medically fragile kiddo.

On Friday, Tess started having what looked like petit mal seizures but they looked so totally different than I was used to seeing with her that I just didn't know for sure so I called Sheila. We Facetimed so she could watch Tess. She didn't like what she was seeing and called the pediatrician. She was instructed to tell me to go ahead and give Tess her rescue meds to try to stop the seizures.  When that didn't seem to stop them, I called her pediatrician back and was told to get her to the mainland on the next ferry. As I rushed to get ready, she finally fell into what looked like a comfortable sleep and since we were told we could stay home if she stopped, we didn't bother getting on that boat. However, she woke up around 3:50 and started in again with the weird twitches and jerks.  I debated about what the heck was going on with her and then, at 4:05pm decided that I did not want her on the island for the night. My Tessie radar was going off fairly loudly. So after rushing around like a maniac, we boarded the 4:30 (and last for the day) ferry to Rockland.

Yes, I am impressed that we actually made the boat in that short amount of time. I had to pack for myself and Tess and try to think of the possibilities:

Will she be admitted into the hospital?
Will we end up at Sheila's?
Will we get home tomorrow?
If not tomorrow, when?
How much clothing will she need?
How many diapers and wet wipes?
How much of her enteral food and supplies do I need to pack?
Grab extra oxygen for boat ride.
Grab oximeter and plug.
Don't forget daily meds in the pantry. 
Don't forget jump bag.
And for all that is holy, don't forget to bring Baby Tad!

The hubby kept asking me if I wanted him to come with me but I figured he was better off staying home because Ellie was there plus Blake was coming home on the last ferry from college for Easter and I didn't want her to come home to no parents around. 

So Tess and I rode the ferry. Alone. With her seizing. I will not make that mistake again.

For the hour and fifteen minutes we were on the boat, she seized. Small ones that cycled over and over and over again. 

Stressed? Yeah, you could say that.

I got off the ferry and drove straight to the ER where we met Sheila. The doctor agreed that it looked like she was in a seizure cycle and called the on-call pediatrician as well as Tessie's regular pediatrician. They were told to administer IV Ativan  which seemed to calm her down (and make her start giggling at LaLa Loopsy on TV). They then did a chest Xray that came back as "suspicious" for pneumonia so she got a shot of antibiotics. The hospital had no empty beds and the docs wanted her admitted so we spent the night in the ER and were moved to a room early the next morning.


                   Just chillin' out in the ER. No big whoop.

When Tess woke up the following morning, she started cycling back into seizures so more meds were given and we were told we would definitely be staying another night which meant we would not be getting home for Easter. 

When the girls found out we couldn't come home they offered to bring all the "Easter Bunny" supplies here so they could have their Easter baskets with Tess. Yup, my girls are awesome. 

They arrived this morning with the hubby, loaded down with Easter goodies that I had to get ready for them. After giving them strict "No Peeking" instructions, I laid everything out. Not exactly the pretty display that the Easter Bunny usually puts out for these girls but hey, it got the job done.

They dug into their loot, laughing at the tags still on everything and the way things were falling all over the place then they showed Tessie her stuff. Tess really didn't care and was basically very irritated that her movie got turned off so she could visit with her sisters. So she did what she does best when she is mad. She went to sleep. 

             Tessie is not impressed that her movie got turned off for this.

We were all sitting around discussing Blake's latest essay I had helped her with for a scholarship and then she asked if I would help her with her paper for her Lifespan Development Class. This paper was basically exactly what it sounds like it would be. An autobiography spanning Blake's life and development.  So we all got to telling our favorite stories about when the girls were little and man oh man, the things you remember that you had sort of forgotten about. For example her fascination with The Lord of the Dance when she was three and her total obsession with carrying around a small Bible in a purple, velvet Crown Royal Bag when she was about four. Then there was Ellie who used to dress up EVERY DAY in a Belle costume complete with tiara and scepter and wear it downtown and when people would tell her she looked pretty, she would reply with, "I know."  Needless to say, we had lots and lots of laughs. 


                           We're ready for our closeup, Mr. DeMille.

And after they left I was thinking. Would we have talked like that if we had been home? Just spent time hanging out with only the five of us, enjoying each other's company and telling funny stories about the girls? I don't think so. Between laptops, boyfriends, TV, work, and just life in general, we would have done our usual Easter morning but then probably have sort of broken off into different parts of the house until it was time for dinner. 

So you know what? THIS Easter? This HOSPITAL Easter? Crazily enough, it was a happy one. 






Saturday, March 23, 2013

The Thief

I am a thief.


I can steal your independence.

I can steal your ability to learn.

I can take possession of your brain and not let it go until I am good and ready.

I can steal your courage.

I can steal your dignity.

I can steal your joy.

I can steal your baby, your mother, your father, your sister, your brother; even you. Whoever I want, whenever I want, and make them mine.

I do not care about your age, your race or your religious beliefs.

I can steal your "normal" and replace it with complete and total chaos without warning. 

I can steal your life.

I am one of your worst nightmares. 

I am Epilepsy. 






Sunday, March 17, 2013

How three days of appointments turns into five days away from home

As previously mentioned in my last post, Tess was given two possible dates for her bilateral hip surgery. Either May 16th or June 25th. As it turns out, it will happen on neither of those days. I got the call from the OR scheduler last week that she has a definite surgery date set for May 14th.

Gulp.

In order for her to proceed with the surgery, Tess needs to be given the green light from the rest of her "team" of specialists, which basically means they have to agree she can physically handle such a major (6-8hrs) surgery. Which means they all need to see her, which means many, many appointments in Boston.

This coming Wednesday she is scheduled to see pulmonology. This will be a new doc for us at Children's because her past pulmonologist was at Maine Medical Center so I am not sure what to expect for this appointment. I'm guessing chest x-rays are a real possibility.

After that appointment we are scheduled for cardiology which includes an EKG as well as a "tentative" echocardiogram because her heart rate has been noted to be a tad jumpy and irregular. She also has been known to suddenly just look terrible and break out in a cold sweat and be all cold and clammy as if she's had a sudden drop in blood pressure. In fact, for years her dad and I had mentioned to many different doctors that we thought she needed to see a cardiologist with all of them basically shrugging off our concerns by saying things like, "Kids like Tess tend to do their own thing. Their bodies just don't regulate themselves like ours do."

Really? I hadn't noticed.

Even after the nurses at Children's Hospital had mentioned it to the doctors because they had noticed the odd fluctuations when monitoring her during some of our stays as an inpatient and also thought it was a little abnormal. Even after her pediatrician finally agreed with me that maybe it was time to see a cardiologist down there and made the call himself to talk with her developmental pediatrician at Children's to express his concerns. Still it was ignored.

Well, I am here to tell you that I am willing to let things go for only so long and I can promise you, when my baby is facing such a huge surgery and I am not convinced her heart is up for it, I am not going to let it be shrugged off any longer.

So I made the call myself. And got blown off.

Oh, no you didn't! (insert finger snap and head weave here)

I decided it was time for that grumpy old beast "Mama Bear" to make herself known.

I called again and might have, somewhat angrily, told the developmental pediatrician's nurse something along the lines of, "Her father and I have requested an appointment with a cardiologist for years and we've gotten nowhere. Her pediatrician in Maine agreed with us that she should see a cardiologist and still Dr. M (her pediatrician at Children's) didn't feel it was necessary. Now Tess is getting ready to undergo a major operation and Dr. M still doesn't think it's of any concern?! Okay then, here's the deal. You tell her I said that I want a signed note from her stating that I repeatedly asked for a cardio appointment prior to surgery and that SHE denied my request and that she can personally guarantee that Tess's heart will withstand the surgery with no problems whatsoever!"



The appointment was made later that day along with the EKG and ECHO.

That Mama Bear can be a real b*$%#, can't she? An effective one though.

But I digress.

As I was saying, her appointments are on Wednesday, Thursday and Friday. I have "karate chopped my way to a better price" and booked us a room for two nights in Boston.

I just checked the weather forecast and guess what? There is a snow storm heading our way. On Tuesday. As in, the day I had planned to leave the island. Did I mention the wind is supposed to blow really hard as well? Because it is. Making the ferry trip very undesirable if it even runs.




I had originally thought we might try to leave on the 7:00am ferry on Wednesday which would put us on the mainland around 8:15 and allow us just enough time to make the first appointment in Boston at 12:30. That is if the first boat runs. And Tess doesn't have a seizure on the way. And there is no traffic.

So yeah, Tuesday ended up being the day to leave based on all the above variables possibly coming into play on Wednesday. And now a storm. Are you freaking kidding me, Mother Nature???

My new, revised plan, is to leave tomorrow. Get as far as Biddeford and bunk in with our beloved nurse Sheila and Tessie's, excuse me, I meant, Sheila's, boyfriend for a couple of nights in order to get ahead of the bad weather and insure our safe and timely arrival in Boston on Wednesday. I guess I should call and let her know that, shouldn't I?

And that, my friends, is how three days of appointments turns into five days away from home.