Thursday, October 28, 2010

Amsterdam International

You may remember me posting a poem/essay a while back about Holland. Please, take time to re-read it before reading through this post. It will help when trying to understand this essay. 

As nice as the "Welcome to Holland" essay is...."Amsterdam International" is real

I wouldn't call us "new" to the special needs world. But after 8 years of navigating ourselves through this journey, we have felt, at one time or another, much of what is mentioned through this real view of life. And there are times that I still experience parts of these very same powerful emotions.

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

This was written by a fellow Mommy blogger who blogs at Uncommon Sense .
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Wednesday, October 27, 2010

Busy Bunch

It's a wet morning. The air is thick, warm and heavy in our small part of the world today.

I'm currently awaiting a return call from the substitute IEP coordinator for Wyatt. We've been doing a lot of thinking about school and what's going to work best for our boy right now. He's been having his usual one on one instruction at our house two days a week, but we're still working out the rest of the school week. If he returns to the school setting he must have a 1:1 nurse with him. Which will be up to the school to provide, from what I'm being told. Our other option is to have him go homebound full time for the time being. One big factor is the district and what they are willing and able to provide him. I hope that putting our minds together during the IEP meeting will result with a plan that we're all content with.

Ultimately, we're happy when Wyatt his happy and well cared for. I trust (or try to) that one way or the other that will all come together. I have faith that we'll know what to do when the time comes. 

In the mean time we are a busy bunch! This week is packed full for us and Halloween is quickly approaching. With our Halloween there are always pumpkins to be decorated, parties to enjoy, costumes to disquise, large amounts of candy to be consumed, sticky hands needing wiped and lots of festive fun to be had!

Jilliana started baton twirling classes in the beginning of October and her group will be participating in the towns Halloween parade tomorrow evening. She's very excited and we're all looking forward to watching her perform the choreographed routine and seeing her strut her little stuff! The little ones (3-5 years old) will be twirling their performance batons with lights placed in the ends, while we've been told some of the big girls will be twirling FIRE. Yikes!

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Thursday, October 21, 2010

Never a dull moment...

Tuesday morning we awoke to the boy in his bed sitting in a large puddle of TPN. After a few groans and "What in the world?!?'s" were expressed we began assessing the situation and finding exactly where things were leaking. We quickly began the process of un-hooking him from all the wires and tubes that were extending from his body. We paused the pump and after what seemed like a long while of grunting and applying brute force while twisting, we were able to loosen the end cap of the IV tubing. The large amount of dextrose that is added to his TPN acts much like a glue when it finds it's way into the threads of the tubing and then dries! We swabbed and began flushing his line and watched as most of the saline dripped onto the paper towel laying beneath his arm than actually flushing through the line. We found the leak. We called the nursing company and after a process of elimination it was determined the nurse must come and take a look himself. We promptly received a phone call and our nurses voice on the other end of the line saying "I'm on my way".

He arrived and determined that it was indeed a crack in the line itself. How?!? That's the question of the week. He went to bed with a perfectly working and non-leaking line and woke up with it cracked. We secure the IV tubing onto his arm to avoid pulling on the PICC line directly...the tape and tubing was exactly where I positioned it at bedtime. It's a mystery...

We put a call into the doctor and the doctor said "No more jumping on the bed!"  'We need to get fluids/sugar into him until I figure out when we can get the line repaired or changed.' So, we had to resort to a very slow drip of pedialyte and the Jtube. They got him on the schedule the next day, Wednesday, at 11am for a new PICC (or re-wire, if possible). We decided to at least try to tough it out at home with the pedialyte and Jtube until the next day. Even though it was sub-optimal hydtration, the doctor understood our wanting to try to stay home. But in the end Wyatt lasted until 1pm and he was asking to go to the hospital for an IV because he was hurting so much. We tried working with the magic of distraction until 2:30, when he was really miserable and repeatedly asking to go. So, we admitted defeat and called the GI doctor who started the admission paperwork and told us to come in.

 They eventually started fluids through a peripheral IV (and he was able to stop them through the Jtube) and he received a new PICC line in his left arm (the previous was in his right) the next day. We were able to come home yesterday afternoon. A quick trip!

What I didn't mention....after figuring out the PICC leak early Tuesday morning, Bryan decided to try to get a few hours of work in while we waited for the doctors to call. He left and a short while later I received a phone call. His car broke down and he was waiting for a tow truck on the side of the road. "Seriously?!?"...yes, he was very serious. We got our jackets on and went to pick up Daddy. Tuesday was not a good day for us!

But Wednesday was much better! Wyatt got the new PICC line placed, discharge home was quick and it was Bryan's BIRTHDAY!                    

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Friday, October 15, 2010

Another normal...

We're adjusting to our "new normal" once again. Though, this one has been the hardest for me to adjust to yet. It's safe to say that the PICC line and infections make me want to sanitize EVERYTHING. The nerves I feel when needing to hook/unhook him from the line are abundant. I get hung up on the possibility of contaminating the line in one way or the other, even though we've been taught the steps of how to safely do it. I've been scrubbing my house in an effort to get it as clean as possible. I realize my scrubbing efforts may not ward off potential infections, but it does make me feel better. And, the side effect is that I get an extra clean house. I've also been on an organizing streak trying to get all the new medical supplies organized and in their own little spots. There has been so much to learn, so much to do...

But Wyatt has been feeling fantastic! It's amazing to us, really. The last 2 days we've been able to keep the drainage bag un-hooked from his G-tube even. I don't know what that specifically means, except that he's feeling great and nothing is bothering him in that fickle GI tract of his. Right now he is getting TPN 24 hours a day. I'm unclear of the plan from here on out, the discharging GI team was leaving that up to his regular GI doctor who I am supposed to touch base with via phone next week. Though, yesterday I did talk with the scheduler from Dr. F's office. Dr. F is the GI doctor in Boston, Mass. Wyatt is on their cancellation list right now as the doctor is booked until December 30th. They will open the January-February 2011 schedule in the middle of November. And if we are still waiting on the cancellation list at that time she will call us to schedule the appointment for the beginning of the new year. I'm going to take a guess that not many people cancel appointments with Dr. F, but you never know.

In the mean time, we've started thinking about and working on getting Wyatt back to school again. I have emails into the special education director and the nurse about attending school while having a PICC line w/ TPN running. There was some uncertainty of him needing a 1:1 nurse because of that.

The girls are doing very well, too. We met with Maggie's teacher on Wednesday evening for parent/teacher conferences. She's doing great in school. She currently reads 151 words per minute...the highest in her class. Her teacher told us they like the 3rd graders to be reading 110wpm by the end of the school year, so there is no worry in that area for her. Overall, the teacher was very happy with how she was doing and didn't have any concerns. I love hearing that! Jilly is thoroughly enjoying Wyatt being home. They have been spending large portions of the day playing together with playdough and various playdough sets that we found when re-organizing. My floor is proof of this with little pieces of playdough scattered about. Playdough is an ageless and therapeutic activity for this household. I love it just as much as the kids, I do believe.

A shout out and very big "Thank you!" to the Grandpa's this week....
On Monday as the hospital staff was scurrying around to get us set up for discharge, the Grandpa's were ripping out the floor of our downstairs bathroom. We've had a worsening sag in the middle of the floor since the spring and the bathroom was "out of order" as it was in the beginning stages of Bryan's repair. We needed that bathroom to be fixed ASAP and the Grandpa's dove right in, after contemplating exactly how they would need to do it. After a few days of labor the downstairs bathroom has the sturdiest floor EVER....and it's pretty too!

A very big, appreciative "Thank you" to the Grandma's for helping with the house and kids, as well. We couldn't do this without you.
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Tuesday, October 12, 2010


We arrived home late last evening. I'll update after we get settled more. And I get all the new supplies and house organized. But, we're very happy to be home!
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Sunday, October 10, 2010

We're moving in the right direction...

Yesterday after I updated the blog we took another trip to the Child Life Playroom. Upon entering through the doorway and 'washing' our hands Wyatt aimed himself directly for the air hockey table. While we were playing a riveting game of air hockey a group of students entered from the University of Delaware. Most of them carrying two pumpkins and others carrying bags of Halloween themed arts and crafts. We meandered in the direction of the pumpkins after watching them set up the table. Wyatt sat down and very carefully painted a pumpkin to it's perfection. Only later did we find out the design inspiration for his creative craft.

We then borrowed the games Battleship and Sorry from the play room game closet. And with the games and sticky painted pumpkin in Daddy's hands, his IV pole under control in my hands and Wyatt steering his wheelchair we made it back to his room.

Daddy and Wyatt played a fun game of Battleship and ended the game just as Dr. B, the neurologist, entered. We had an intricate conversation about Mitochondrial disease and what has been going on with the boy. He then asked Wyatt why his pumpkin looks mean and Wyatt said "He's mad because he has chicken pox on Halloween!" Well, there you have it. That would certainly upset me too!

A short time later Grandma and Grandpa arrived with the girls and we took another trip down to the Child Life play room. We had a grand time crafting Halloween themed door hangers and treat bags. By this time Wyatt was becoming very tired....he had a busy day and was moving about much more than he has been recently.

Once he got to sleep in the evening (which was no easy feat with a cranky, very particular, exhausted boy), he slept well and even slept in this morning later than he has been. He woke up smiling and feeling great again. We saw the GI resident and fellow already this morning, and they informed us that they needed to tweak the TPN a bit because of a high level that came back, but otherwise they are increasing the calories today to what they believe to be optimal for him. And then tomorrow we, hopefully, can start training how to prepare/use all the stuff that is new to us.

Today, we're on the hunt for more fun!
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Saturday, October 9, 2010

Seeing smiles again....

Last evening, at 8pm, Wyatt was started on TPN (IV nutrition) through the newly placed PICC line. He's much more comfortable and back to his smiling and laughing self. He has times that he's uncomfortable, but they are only occassionally and he is not nearly as uncomfortable as he was. Bryan and I have both commented on how refreshing it's been seeing him smile and hearing him laugh again. We haven't seen "happy Wyatt" for awhile....we love seeing happy Wyatt!

Right now he's looking through the DisneyWorld book for Kids and telling Daddy to put certain rides on the list of things he wants to do/see when we visit. If you don't know, Wyatt loves anything about DisneyWorld. He's had an obsession with the place for many years. He's thoroughly fascinated and enthralled with the Magic that is Disney!

While they were placing the PICC line the Child Life specialist stayed with him while we were asked to wait in the waiting room because of it being a sterile procedure. They had numbed the skin with Emla cream and also gave him versed to help him get through the procedure. They were thinking he would fall asleep. But instead, the Child Life specialist (who is absolutely WONDERFUL!) told us afterward that he talked about Disney World the whole time. That's our boy!

Did you know Wyatt wants to be a roller coaster designer when he grows up? But he says he will have other people test them because he doesn't like riding them. ;-)

The girls are having fun spending time with the grandparents while we are here. Earlier this week I had emailed Maggie's teacher about Wyatt being in the hospital. To just let her know that if Maggie seemed distracted or out of sorts, that may be why. Well, her teacher had a talk with Mag's and said if she wanted to talk or needed to step out of the room or get a drink, to just let her know. Anything that Maggie needed she would be there. It was really nice of her teacher and when I was talking with Maggie that evening she commented to me "I don't think she knew this wasn't the first time he has been in the hospital!" She sounded a bit confused as to why her teacher would think she'd be that upset about it. Yep, that's our girl, this is our life.

We just talked to the weekend GI team and the plan for today is to optimize his TPN with the nutrition/calories/electrolytes that his body needs. And once everything is where it needs to be then they will start training us on how to do it at home. Discharge date sometime next week if all goes as planned. Cross your fingers, say a prayer and think good thoughts that this plan doesn't change on us!
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Friday, October 8, 2010

Update from the boy's bedside...

Wyatt will be taking a trip downstairs to have a PICC line placed this morning. He'll also have another dye study through his gj-tube to make sure that it's placed where it's supposed to be. We checked it last week and they did an x-ray yesterday to see where it's at again, but they want to double check and make sure there are no leaks.

That's all of the plan that we are aware of at this point. We should be seeing his regular neuro today or at least over the weekend, as he's working the floor. We have yet to see the GI team this mornng. After the doctors reviewing the testing results from Atlanta, we have been told that Wyatt does have Mitochondrial Disease, complex I. This has been suspected for a lot of years, so it doesn't come as too much of a surprise to us, but we are still taking the time to process and adjust to having this new "label".

Like I mentioned, his GI doctor is working quickly to get an appointment for Wyatt in Boston to see the motility specialist, Dr. F. He is aware of Wyatt and his current status. And has requested that a central line be placed and he be nutritionally stable before traveling to see him. This was also in agreement with his neurologist and his current GI doctor's reccomendations. So, we are moving forward with a PICC line for now and if needed will place a port/broviac when the time comes.

It's a new day, a new adventure.
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Thursday, October 7, 2010

In the hospital

Wyatt was admitted to the hospital yesterday. He's being looked over and worked up to get a plan in place. It looks like we may be taking that trip to Boston to see the GI motility specialist earlier than we thought. Things are in motion and our GI doctor here is doing what's needed to get us there. In the mean time he needs adequate nutrition. There is a bit of a power struggle happening between a few of Wyatt's regular doctors who all agree with one way of treating him and the doctor who is actually doing rounds on the inpatient floor, who we have not met before yesterday. It's proving to be incredibly frustrating!

I will update when I know of the solid plan that all agree with and what will take place. Right now even the plans that they are telling us are randomly changing without notice to us.
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Wednesday, October 6, 2010

Wordless Wednesday: Birthday party fun

She's Queen of the world (or the park!)

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Friday, October 1, 2010

The one that started it all....

My heart was forever changed 9 years ago today. 
The day I became a Mother. 

My baby. My baby girl. 6lbs 3oz of pure joy.

We've learned together.

We've celebrated together.

She's the one that started it all.  

Still and forever, my baby girl.

In what feels like a blink of an eye and here we are, 9 years later. Our lives forever changed, our hearts forever loving.

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