Sunday, October 31, 2010

Trick or Treat...

I was trying to decide what to dress The Toots up as for Halloween this year and it got me thinking about her last six Halloweens.

Her first Halloween is seared into my memory as if it were burned in by a branding iron. And for all the wrong reasons.

At the time I had not yet been diagnosed with a thyroid problem or cancer. I only knew that I was in a lot of pain and was so tired all the time. I was trying my best to be a good mommy and had the kid's costumes all ready to go and was even acting as if I couldn't wait to go out trick or treating.

Late that afternoon my sister-in-law stopped by with a friend to visit. As I was sitting, holding Tessie in my arms (she was about four months old) I got the strangest feelings in my body. First my feet got all hot and tingly, then my face and then my heart started to beat really fast. I thought I was going to pass out. But me, being me, I pretended like nothing was wrong and simply had Blake take Tessie and said I had to use the bathroom. I pulled myself together enough to get through the visit (I should get an Oscar for that performance) and after they left I went down to my room and called my mom. She came right over and told me I was having a panic attack.It was horrible. If you are lucky enough to never have had one then, as the saying goes, you are lucky enough.

Anyway, my mom helped the kids get dressed up as I waited for the medication that the doctor had given me to work. We told the kids that I had a bad headache so that they wouldn't be scared that I was laying in bed. Finally, the meds did their job and I felt like I could actually function and take the kids out for trick or treat. It was such an awful night for me but my kids never knew it and that's what counts. The Toots went as a little pumpkin and was adorable.

I learned later that my thyroid being so out of whack was what had caused (and still does to this day on occasion)such a bad panic attack. I also have learned, that once those nasty little attacks get a foothold on your psyche, they do not leave easily. Stress is not a friend to panic attacks either. I used to be embarrassed at what I thought was a weakness but now I know that neither weakness, nor strength, have anything to do with it.

Anyway, by the next Halloween I had had my first surgery (the second surgery came six months later and removed another 15 lymph-nodes) to remove my cancerous thyroid along with fifteen lymph-nodes. And I was feeling quite a bit better mentally thank god.

I decided to dress The Toots up as her favorite little stuffed toy, Ghostie. This was a little stuffed ghost that Ali had given to her the previous Halloween and Tessie loved it. We took it everywhere and anywhere she went. It soothed all of her problems. I thought it was an odd thing to be so attached to because it was literally just a five or six inch stuffed ghost. Then again, I have never professed to understand much of what The Toots deems awesome and why. At any rate, Gram made the costume and again, adorable.

Halloween 2005 saw Tessie as Raggedy Ann. Anyone who knows me knows that I have a pretty good sense of humor that can lean a bit toward the sick side every now and again. The reason I dressed her up as Raggedy Ann was because by this point we were full into the 'special needs' process and had been diagnosed with "Global Developmental Delay with Hypontia". Hypotonia is a fancy word for low muscle tone and was known as the 'Rag doll syndrome' because of how limp these kids bodies were. Hence, dressing her up as the world's most famous rag doll. Sick, I know. But I still chuckle about it. And, yes, she was adorable.

2006 Tessie was a chicken. We are talking feathers and all. My inspiration? Her thin little chicken legs. In a word; adorable.

2007 I dressed Tessie up as a doctor complete with scrubs, cap, lab coat, mask, and stethoscope. Can you guess why? Again, just trying to find the humor anywhere that I could and she was just so damn cute all dressed up like that.

By 2008 it was getting really hard, and if you will excuse the pun, tricky, getting Tessie in and out of the car in a full on costume. She was getting big and lugging her in and out of the car repeatedly took it's toll on my hubby and me. We would start bickering about where we were going to take her. It was very exhausting, plus, she couldn't eat any of the candy and on top of that, anyone who did not know her really well would comment on how "shy" or "tired" she must be because her head would be down and daddy was carrying her. Trying to explain to someone that she was disabled was awkward for everyone to say the least. We decided that this would be the last year we would take her around trick or treating. I dressed her up as an Angel for obvious reasons. She is a little Angel.

Last year I dressed her up as her most favorite character in all the world. No, not Spongebob, his 'frenemy', Plankton. I found a home made costume on Ebay and it was awesome. She thought she was just great in that costume. It was so cute to watch her when we showed her herself in the mirror. And I came up with, what I still think is an ingenious solution to the trick or treating dilemma. I take her to my dad and Ann's in costume to help hand out candy to all the kids that come. And because my stepmom is a teacher, they get quite a few kids for Tessie to see. So she still gets to dress up and go out and see other people, it is just in one place. It works for us and eases my guilt about not taking her door to door.

This year she will be a witch. What can I say? I got lazy.

Happy Halloween!...

Tuesday, October 12, 2010

What will be, will be...

It was supposed to be a fun, family trip to the White Mountains. You know, leaf peeping, Santa's Village, Storyland, Clark's Trading Post. Time spent as a whole family unit, not divided into me and Tessie in one place (like a hospital or doctor's office) and Charlie, Blake and Ellie in another. Just like in previous years, we would be going with Dad and Ann and my brother's family. This is a trip that I have been going on with my dad since I was a little girl. Some of the players have changed through the years but the trip itself is still the same. And I love it.

I should have saw the first warning sign on Friday night when I was packing. I was just getting everything all together while my hubby was getting The Toots ready for bed when I heard the call come through the walls..."Joanna, I think she is having a seizure." Translation, "Joanna, get in here now!".

I ran into The Toot's room and sure enough she was hard into it. My hubby and I did the usual soothing talk, stroking Tessie's arms and legs, getting the oxygen, timing the seizure, and basically waiting it out while trying to remain cool and casual as the minutes ticked by until we would have to give the emergency medicine. At that point we gave the med, gave her oxygen and hoped it would break the seizure. That, for me, is the worst point out of the whole event because what if the medicine doesn't work? The wait is almost painful in it's intensity.

But work it did so we put The Toots to bed and I finished packing. Was there just a little squirmy feeling in my gut that maybe something was brewing? Sure. Did I ignore it? Absolutely.

We got up and made the first ferry which is no small feat when trying to get five people out of the door by six-thirty a.m., one of whom is in need of total assistance.

We got to the mainland and ran a few errands before striking out for the White Mountains. I insisted that I had to get The Toots some Tylenol suppositories (she cannot take any fever relievers other than those because of her special diet) because I had only bought a small package of them and wanted to have more on hand in case she developed a fever unexpectedly. Was she showing any signs that she was getting sick? No. What prompted my insistence that I get those suppositories? Like I told my hubby later, "I'm just that good." Haha...

We finally hit the road and were about thirty minutes into our three and a half hour drive when I turned to my hubby and said, "I don't remember seeing the big, black suitcase. You packed it, right?". Dead silence. Then a very slow and grim shaking of his head. I thought he was messing with me. He wasn't. I was so mad I almost couldn't get the words out to give him hell. But I managed.

After several minutes of listening to us bicker back and forth about who was to blame, Ellie, the voice of reason, piped up from the back seat and basically told us to suck it up and stop arguing because it didn't matter who forgot the stupid suitcase. We had to go back and get it. That's my girl.

We turned around and went back to Rockland while I frantically called my mom and asked her to get it to the next boat which was due to leave in about seven minutes. We figured she would never make it because there just wasn't enough time but she pulled the rabbit out of the hat and got it there with a minute to spare. Anyone who has ever seen my mother drive will understand how she accomplished such a miraculous feat.

Blake insists that forgetting the suitcase was a sign that this trip was not meant to be. She could be on to something.

An hour and a half later we picked up the suitcase and hit the road. Again. Then we got to Fryeburg. It was the weekend of the Fryeburg Fair and the traffic was backed up for miles. It was almost surreal. We waited and waited and waited. Moving about ten feet every five minutes or so. Finally, we got the hell out of there as I cursed every person who ever went to the Fair. Then we got to North Conway. But wait, what's that? More traffic? Nooooooooo.......

It took us just under two hours to travel the eight miles to our hotel. I started talking about buying an Oozie (not sure if that is how you spell that type of gun?) and taking out other people. Ellie and I were laughing quite hard over it but my hubby seemed a bit concerned for my sanity. Or his life. Who knows?

At any rate, while sitting in traffic I noticed that Toodle Bug was doing an awful lot of sneezing and going into uncontrollable coughing jags. I tried so hard to shrug it off. But I knew. I knew, I knew, I knew. After all, this was not my first time at the rodeo as far as The Toots was concerned and I had heard her make those sneezy, coughy noises in the past. Always right before she got really sick.

We finally made it to the hotel around five-thirty which meant that we had been in our car for eleven hours. Blake had jumped in with Dad and Ann earlier that morning to ride with them so they, along with my brother's family, had gotten there hours before us and had even gone to Storyland and had some fun. No biggie. We would have fun the next day and that was what I really wanted to do anyway...Santa's Village and Clark's Trading Post.

After we all had dinner together in my brother's room, I took Tessie to our room for bed. By this point I could no longer ignore the fact that she was getting sick but I was just hoping she wouldn't get much worse. Dare to dream, I guess.

Around four-thirty in the morning I was awakened by some kind of animal barking. No, wait a second, that was Tessie making those god awful noises. I jumped up and told my hubby to get up and poor Tessie was struggling to breathe. We grabbed the oxygen and gave her that for a minute and then we ran the shower on hot to try to get the steam to help her break up her cough because it was so bad. We were debating about going to the ER when I bit the bullet and called nurse Sheila.

I frantically told her what was going on and asked her for some advice. Thank God for Sheila. She eased my quickly growing panic and told us what to do. We got Tessie settled back down and all went back to bed still foolishly hoping that by morning she would rally enough for us to be able to finish our trip.

102.5 degree fever at seven meant our trip was over. The Toots was so sick she could barely keep her eyes open and I did not want to be alone to take care of her in a hotel room in a city where I did not know where to go for help. Sheila to the rescue once again. She told us to bring Tessie to her and she would take care of her.

We told Blake and Ellie that we had to leave and that was the worst part for me. Most people do not understand how very little we really get to do with them anymore. Partly because they are growing up and are doing their own thing but mostly because Tess requires so very much of our time and attention. And it is something that my hubby and I frequently ask ourselves, "Do Blake and Ellie resent the time that Tessie takes up?" They love their sister dearly but it must get old for them. It must get frustrating. But they never complain about it other than to ask when I have been away for more than a night or two with Tessie, "When are you coming home?".

As usual, they took it like the troopers that they are and smiled and kissed and hugged us goodbye as they went off for a day of family fun without their family (well, sister and parents).

I smiled and joked with them as they left and told them to have fun and then sobbed all the way back through North Conway. My hubby, obviously thinking that I was worried about Tessie, reached over and patted my leg and said, "She'll be okay." I looked at him like he had just dropped in from Mars and said, selfish to the core, "I'm not crying about Tessie (of course I was, in part). I am crying because I wanted to go to Santa's Village and Clark's and because I never get to do anything with Blake and Ellie!"

I sobbed and carried on for a while about the unfairness of it all and then decided to put on my big girl panties and just deal with it. This is my life now and fighting what is happening and feeling sorry for myself only makes it that much harder on me and everyone around me. I also thought about the saying that tells how we can't change what happens to us but we can change our attitude toward what happens.

And like my NanaBelle used to say, "What will be, will be"...

Sunday, October 3, 2010

Gee, a tube...

Tess has been fed through a tube that goes directly into her belly since she was four years old. Up until that point she was given formula in a bottle as a baby and then as a toddler we put her formula into a cup and fed her baby food. She never was able to handle anything more than the number two baby foods and yogurt or she would choke. And bonus, she regurgitated everything she ate up into her nostrils and it would literally flow out of them as she was eating. Sort of like the old soda out of the nose trick only this was definitely not funny.

She was also having aspiration pneumonia because she was swallowing pretty much anything she ate into her lungs. It was a living nightmare but we kept doing it because we did not know any better. I think back on that time now and shudder. We could have so easily lost her to those pneumonia's. I've said it before and I'll say it again, Denial...it ain't just a river in Egypt.


But luckily for her, and us, Tessie has many angels in her life that watch over her...both figuratively and literally.

One of those angels is Kellie. She was Tessie's speech therapist from the age of about one and a half to five. Through meeting with her once a week every week during those four years, Kellie and I became very close. She let me cross the professional boundary lines with her and now she is one of my dearest friends. I don't know what it was with Kellie but I felt a connection to her right off the bat that went beyond the 'therapist' title and she felt the same way about me. When our girls, Ellie and Hannah, became bosom buddies, that sealed the deal. Call it fate or destiny or whatever you want but Kellie was one of those people that was meant to come into my life. It was no accident that she became Tessie's speech therapist and I am thankful for that every single day.

Anyway, my point is, Kellie and her family came out to the island to visit us a few months before Tessie got her Gtube surgery and she freaked out when she saw Tessie eat. In her words, "I felt sick. I couldn't believe that nobody had told you after seeing her eat, that she needed as Gtube ASAP. I knew in my gut that if you didn't get that kid feeding through a tube soon she would die from pneumonia." Of course Kellie didn't come out and say that then. She only told me this later. After Tessie had the surgery. At any rate, unbeknownst to me, Kellie went home and called Tessie's pediatrician and talked to him about it. Poor Kellie, she really went to bat for us but got nowhere with Tessie's pediatrician and I honestly believe it was because he didn't want to believe it himself. We had gotten quite close to him through all of the many trials and tribulations of Tessie's health and I think he had a little denial going on himself as to how bad things were getting with The Toots, or "My girlfriend" as he calls her. At any rate, Kellie very gently began to talk to me about the idea of a gtube. Just little hints here and there so that I would not be completely blown away when it finally did happen because she knew that I was in a lot of denial about it.

The gtube train rolled out of the station when Tessie had a surgery date set to have ear tube replaced and her adnoids removed in the hopes that the 'food out the nose trick' would stop. When we got to Maine Medical Center Tessie was recovering from yet another aspiration pneumonia and the ENT doc was pissed because they weren't sure if they dared give her anesthesia while her breathing was already compromised by the pneumonia. He simply could not believe that she didn't already have a gtube. In the end, after taking all the precautions they could, they went ahead with the ear tube/adnoid surgery. Then the doctor made a special visit into Tessie's room to talk to us.

He sat on the edge of her bed and proceeded to bombard us with appointments that he had set up for her to go ahead and get a gtube. He had scheduled a visit from pediatric pulmonology, pediatric surgery, and pediatric GI. They would all coordinate
and make a surgery date for Tess and he had put it under an emergency basis so that it would happen pretty quickly. Then he left and I jumped up and told Charlie that I had to get out of there for a minute. I grabbed the cell phone and went to the family lounge and called Auntie and bawled my eyed out while telling her that I would no longer be able to feed Tessie by mouth.

I was heartbroken. Tessie's cure-all for anything that was wrong was her sippy cup. How could I take that away from her? It was cruel to do that to her and I would be the one doing it! She had so much that she could not do and this was yet another thing that would now be added to the list. Besides, I loved snuggling with her while she drank her formula. I guess I was mourning for what I would lose as well.

But here is where doing what is best for your child verses what is best for you came into play and I knew in my heart that the doctors were right. So we visited with all the docs and the surgery date was set for three weeks later. The GI doctor asked me if I wanted her kept in the hospital unit the surgery? I asked why would I? He replied, "I am required by law to tell you that by taking her home you are risking her life. She may get another aspiration pneumonia and die. If she were kept in the hospital, we would insert a nasal gtube into her and feed her through that until the surgery." I was at a loss. How do you respond to that? So I posed the question that I always ask doctors now when deciding life and death issues, "If she were your daughter, what would you do?". That always makes them stop and think. And I really respect that doctor's honesty that day when he said, "Take her home. I feel like you are doing a really good job keeping her relatively healthy and she is more likely to catch something in this hospital that would make her sick while waiting for the surgery."

We took her home.

After three more consult appointments over the next two weeks it was decided that she should also get a procedure done while she was already under anesthesia called a Nissen Fundoplication. This would stop her from refluxing food from her belly up her throat and eliminate the chance of her swallowing that back into her lungs. It also would mean that she would no longer be able to vomit and would retch instead when she got air trapped in her belly from gas. I was very hesitant but agreed.

We brought her to MaineMedical for surgery and her surgeon came out and told us the surgery could take as long as five and a half hours. What??!! No one had warned me of that. He also said it could take as little as an hour and a half. It all depended on whether or not they could do the Nissen laparoscopically or would have to really cut into her stomach and they wouldn't know until they got into the OR.

They wheeled her away and Charlie and I were left to wait. Constantly checking the board in the waiting room that tells when a patient has gone in for surgery and when they are out and in recovery.

It was an exquisitely long wait even though in reality it was only just under two hours.

We went up to Tessie's room which, thankfully, was private and were told that she would probably be released in two days. The surgeon did not want her new gtube touched at all for at least twenty-four hours which meant we were still feeding her by mouth until the following day. I was happy about that because I so dreaded the time when they took away her sippy cup for good.

Tessie was doing well so Charlie went to his mom's for the night and I stayed in the room with Tessie. Around three in the morning I heard her whimper and am ashamed to admit that I had the gall to be annoyed. I was just so tired! I lay on my little hospital 'bed' and hoped she would go back to sleep. She whimpered again and I dragged myself up to see what could be wrong.

The blanket over by her belly was soaked through with blood. I quickly called the nurse's station and told them to come now and when the nurse arrived she took a look, told me she'd be right back, and ran out of the room. She returned with two other nurses and told me that Xray was on the way up to Xray Tessie's belly. I asked if Tessie was okay and she said everything was fine. I looked at her and told her that I did not want the pat answer that she was trained to give scared parents, I wanted the truth. I asked her if I needed to call my hubby to get him on his way to the hospital. She said not yet but they would know more as soon as Xray came. She also said she had paged out the pediatric surgeon and the OR and told them to prep a room just in case.

Xray came and the pediatric surgeon and thankfully, Tessie just had a lot of gas trapped in her belly and it had distended it much like a balloon about to pop. The belly distention had put so much pressure on her belly that the fresh gtube site was bleeding. All they had to do was to vent the gtube and let out the air.

We got Tessie cleaned up and her bed changed and while we were doing that I asked the nurse to tell me honestly how scared she was when she first came in. She looked me dead in the eye and said, "When I ran out of here and called downstairs, I yelled into the phone for them to get their asses up here right now!" We laughed for a minute and I said, "Well, you're very good at hiding your panic. You're sort of like the stewardess in a plane that is nose diving out of control towards the ground and you keep telling the passengers that everything is fine." "Yep", she said. "Pretty much."

Everyday the pediatric surgeon would come in and tell us not today. As in, I cannot release her today. She had to hit a very specific calorie intake and was not managing it due to slow stomach motility. Until that goal was met for at least twenty-four hours, she would remain in the hospital.

It was awful. Remember how, in previous posts I've said Charlie is like a hyper active little boy trapped in an eight by twelve cell and I am his only toy? Yeah, try it for eight days....that's right. Eight days we had to stay in that hospital while Tessie recovered from the surgery. Even the doctor was feeling bad for us. He would make rounds and come in at the end of the day, slowly enter the room and sort of shake his head and Charlie and I would slouch back in our chairs in defeat. I though I would kill Charlie by the end of it. I really did.

On day eight the doctor came in and before he could say anything I jumped up from my chair and said, "If you don't release us today, by the time you do we will be leaving this hospital and driving straight to a divorce court!" I was only half joking. The doctor laughed and said, "You're free. I'll go fill out the release forms now."

Hallelujah!!

It took me a while to fully accept the gtube and it took my hubby a bit longer. Naturally The Toots accepted it right away without a single tear shed...except from me.

Imagine if everybody accepted their lot in life as gracefully and joyfully as The Toots does.

Just imagine...