Thursday, December 30, 2010

The year that was 2010.

Never a week goes by that I'm not making a call to a doctor, a home healthcare company or the pharmacy. Informing them of some new issue that needs attention, following up on an order for a piece of new equipment, ordering weekly or monthly supplies and refilling medications. It's much like a full time job keeping this child of mine in tip top shape, or as close as we can get him.

This week was no exception. I will spare you the nitty gritty details, but I talked several times with the GI doctor about, whatdayaknow, GI issues. After trials of this and that we finally have things moving as well as they are gonna be. We left unspoken the fact that he's having trouble tolerating his 7ml/hr J-feedings, but I'm certain it's just a given. I also did not bring up the fact that this 2ml/hr increase in J-feeds that the GI doctor initiated last week, was also the exact same time that his system stopped moving anything through...again. There's not much they can do about it, is the feeling that we're getting these days. And I have a hard time truly believing this, maybe because I don't want to believe that this is just how it must be. I would assume it can be frustrating for even the doctors to not know what to do in a situation such as this. I do hope that they care enough to be frustrated along with us. I certainly know it infuriates me and breaks my heart to watch him scream, cry and throw fits because he's not feeling well. He hurts. And it sucks, quite frankly.

I also talked multiple times with the pulmonology office and our home healthcare provider for respiratory supplies. Oh yes, we have 5 home healthcare companies that take care of different supplies for this boy. It's a little nutty. But, I digress.

Wyatt had a pulmonology appointment shortly after our trip to Atlanta. It was a laid back appointment, nothing of great concern in the area of his lungs. (Thankfully!) We were able to go over his most recent sleep study which showed improvement from the last (since having his tonsils and adenoids removed), which was great to see! We discussed his current respiratory support and his need for this to be continued. He has used CPAP for close to 2 years and it has done great things for him. However, it was decided that a BiPAP may be more beneficial and worth trying. So, this week was focused on getting the home healthcare company the paperwork that they needed to be able to get us the machine that we needed. It was so much harder than it really needed to be. Such is life with this particular home healthcare company. But today the new machine was delivered and he is currently in his room breathing well. Success and worth the hassle in the end.

It is now that the week is coming to an end and we're gearing up to celebrate the closing of another event filled year. Another year, a wild ride that we will call the year that was 2010.

Wishing you a Happy New Year!
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Wednesday, December 29, 2010

Mission Complete.

We awoke Christmas eve morning to our home feeling particularly chilly. It was shortly there after that we noticed that our heater had stopped working sometime through the night. This was the start to our Christmas holiday. After trying all that Bryan knew how and banging around the furnace we eventually decided, after placing a call to our service company and being told they would not be able to fit us in for the day, to turn off our water, drain our pipes and not think about this slight hurdle until Monday, after the holiday. It was Christmas, after all. I vowed to try my very best to not think of doctors, and now our heater, until after this very special time.

So, we packed our belongings and smallish hospital into our van, along with all the presents for the littles.


As they each placed their guesses of what desired present was beneath the wrapping papers we drove the miles to reach my Mother and Grandfather's home.


On the way to our next dear residence we were stopped by a herd of cattle making their way to their very own Christmas eve celebration, or maybe it was just dinner. But in this head of mine, I can picture those cattle celebrating, within their large herd, this very special day. Just as we were about to do. Maybe.


We spent the early evening with a portion of my family. Opening presents, enjoying each others company, playing with the new toys and games that were given.


After our joyful visit with family we fancied ourselves up and made our way to the Christmas Eve service at church.


Thankfully, the very tired and excited children were able to contain the rambunctious behavior that was about the explode from their every pore for the duration of the service. Following said service we darted back to Bryan's parents' home, where we would be staying for the weekend, to quickly ready ourselves for the night and hop into our beds. Hoping that we would be awoken by the sound of jingle bells and a jolly voice saying "Merry Christmas!"

Sadly, we were never awoken by the sounds of jingle bells or that jolly voice hollering out to wish us well. But the children did wake to stockings that were filled and presents that were very carefully placed for each of them.


But most special, laying gently next to the plate that held the cookie crumbs and the glass that contained the last bit of milk, they awoke to a letter that was kindly written to each of them, from Saint Nicholas.


And thus our Christmas morning began. Presents upon presents, each presented in festive wrap and adorned with ribbons and bows. "To: Maggie, Love: Santa" one would call out while handing the present to the loved one. "To: Wyatt, Love: Mommy and Daddy" another would holler. "To: ME!" Jilly would announce when finding a letter "J" on any one package.


Excitement and love flowed through the air as the packages were exchanged. 


"Love is what's in the room with you at Christmas, if you stop opening presents and listen." -- Unknown


We decided, as parents, to briefly unhook Wyatt from his attachments for this special occasion. He was happy to be 'free' to run about and rip open each and every present that was addressed to him, for a short while.

 "Happy Birthday, Jesus!"

Every year from the time that each of our children were born we've talked and did our best to teach them about Christmas. This year Jilly became particularly excited about the event that was Jesus' birth, his Birthday. She was rather insistent that we have cake to celebrate this day, just as we do her birthday. And we did just that. We lit candles, sang and celebrated this very special day of our Savior's birth.


We've been told,  "This is the best Christmas EVER".

Mission complete.




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Friday, December 24, 2010

Countdown to Christmas

  Wishing you...
Happy Holidays!

The countdown to Christmas day is full force in our home....

The children are antsy with anticipation of the exciting day. It warms my heart and puts a smile on my face that a large part of their excitement is giving the gifts that they so thoughtfully picked and or carefully created by hand. 


We're looking forward to spending today with family and finishing off this very special eve of Christmas with a comforting candle lit service at church. I'm beginning to get very excited for a Christmas morning filled with smiles, laughter and the sound of wrapping paper being viciously ripped off of presents.

Merry Christmas!
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Wednesday, December 22, 2010

On the fence

At times I feel inadequate to take on this parenting roll of a child with such complex medical needs. I often get frustrated with the feeling of being "just the parent" and not being perceived as an integral part of Wyatt's care team. However, right now I'm feeling as if I am "just the parent." Confused, analyzing, deciphering what was said and the meaning that it has on the situation. While I may be one of the experts at how my son is feeling and have opinions as to why, I don't like being the go between relaying medical information.

I am a frazzled mother searching for an answer for my child. There have been many of times that I was content with not knowing why the storm was raging inside my child's body. We didn't have an answer. There have been many more times that I have been determined to find the answer to this boys suffering. He's my little boy, after all.

As I read through the clinic note from our trip to Atlanta I'm confused. Bryan and I left the appointment feeling as if we had a good understanding of all that was said, found in the testing and what was happening within our little medical world. And now I sit scratching my head and wondering where is the rest of it...we talked thoroughly about so much more than what was contained in this note. Did I misunderstand his words? Did Bryan and I misconstrue what was said? Bryan and I talked through the appointment several times since and our understanding of what was said aloud. We were in agreement with our thoughts. So, where did things go awry? What are we left to believe....the clinic note or the words that were heard?

I don't like being 'on the fence.' That's how I feel in this journey, as if we're teetering atop a crookedly narrow picket fence waiting for a test result, a doctors opinion, a new symptom to push us to one side or the other, flailing our extremities in an effort to ease or slow our fall to the hard, unforgiving ground. Someone just give me a good shove, already!

Now, we are left to pass along what was said within this all important appointment and we will fax the corresponding clinic note on to the various specialty doctors, as well. But what we understood, heard, is not exactly what is in the note. We plan to explain what we heard, understood and are confused about. But it's frustratingly depressing to be so close to closing this mind boggling chapter in our lives, yet now feeling so far away from beginning the new chapter. It's apparent that we're still stuck in that swirling state of confusion that we have been for many years now.

I didn't want any of this for my child, my family. I wish to wake up from this nightmare of a dream, but can not. It's reality.

Trusting, reflecting and praying this night. Thanking the Lord for all my blessings, seen and unseen.
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Friday, December 17, 2010

Atlanta


This week we took a road trip to Atlanta, Ga for another appointment with Dr. S. For those of you that have been reading the blog for several months, you may remember our Road Trip Adventures that took place in June.

As with any trip our family may endeavor, there is always an amount of chaos, obstacles that need to be conquered and more times than not there is some sort of medical drama.

Monday morning we awoke and I was ready to tackle the monumental task of packing. Maggie was not feeling the best. She had a sore throat and her nose was stuffy, but had no temperature. It was decided that she would try to make it through the school day. She ran herself to the bus as it pulled in front of our home. And I began gathering the medical supplies that were needed for this trip. 20 minutes later I received a phone call from the school nurse informing me that Maggie threw up while on the school bus. I felt horrible. I really didn't think she was fighting anything other than the typical cold virus that floats around aimlessly each year. Bryan had just left for work and was able to swing by the school to pick her up.


I snuggled her into the couch recliner and instantly put an invisible protective bubble around her, making sure the two others were fully aware that they were not to touch or sit closely to her. All we needed was all three of them to be sick while trying to make our way to this appointment, was the thought that swam through my mind!

After packing what felt to be a smallish hospital into the back of our van, clothing for each and entertainment for the drive, we began the journey that was supposed to be a quick trip.


Our trip down to the south was rather uneventful, as a whole. Although, it was a tad surprising for us to be located in "the south" with chilly, winter temperatures just the same as our home in the north east section of the country. I expected it to be at least a little warmer! Thankfully, there was no more puking to be had and Maggie now had that typical, miserably feeling winter cold that I originally suspected.

The appointment with Dr. S went very well. We had faxed him records of Wyatt's more recent GI history last week for his review. He, again, was very thorough and seemed to know Wyatt's history almost as well as we do. We had a very lengthy appointment talking over the results of the testing that he did when we visited in June, but also about where Wyatt is now medically, which is quite different than when we saw him last. He talked us through what to expect with our upcoming appointment to Boston to see the GI motility specialist and how best to utilize some doctors within Wyatt's medical team here.


I suppose it is now officially official, the specialist of the specialists has said it...Wyatt has a Mitochondrial disorder. There is a small chance that it's secondary to another disease, but Dr. S is not feeling it's likely. They took more blood to run the testing for specific genes that, from what I understand, are harder to detect within the testing that was already finished. He did warn us we may never find the genetic confirmation, but he would test all that he can and help us find it if it's possible.

It's comforting to talk to a doctor that really get's it. He knows the complexities of this disease inside and out, it's very clear. He also possesses the ability to explain so that we, the parents, are able to completely understand. It all makes sense. We have been trying to fit together the bits and pieces of symptoms and problems that cropped up over the years. Knowing in a way that only a parent knows, that it all comes together in one way or another. I just knew. I felt it. The nagging feeling that there is more, something more. Wyatt's doctors have never been able to fit these puzzle pieces together. They were scattered amongst the specialties but unable to be pieced together to explain the situation. Dr. S pieced it together, just as Bryan and I expected the pieces to fit. This is not to say the doctors that we continue to see here at home are not great at what they do. They are great and have helped us along through the years. And we hope they will continue to help guide us through this journey that is parenting a child with such needs. I also hope that they all will take Dr. S's offer to assist through this medical journey. He made it clear to us that he is available to help with Wyatt's care and we are welcomed to visit him as needed and or is convenient for us.

There is great uncertainty that lies before us, but there is a small amount of comfort in understanding.


Our trek back to the more northern portion of the country was not as easy as our way to the south. It was riddled with obstacles. Snow, rain, ice.....lots of ice. Cars that have collided with one another, vehicles that slid off the side of the road and into ditches, guard rails, other cars. There were a lot of accidents, a lot of gridlocked traffic. Sitting, waiting, trying to de-ice and de-fog our windows. Calming the restless children that were not happy about sitting in the car while not making progress to our destination that was home. Not to mention spunky child number three was now sick with what appears to be the same miserable cold like virus that number one started with. A 102 temperature and at one time vomiting into a plastic bag while her father tried his best to safely cross two lanes of traffic to pull off of the roadway.

Like I said, a little chaos, a few obstacles and sometimes even a bit of medical drama.

The drive home was extra long and we arrived several hours after our originally forecasted time, but we made it safely. All together, all in one piece, all happy to be home.


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Thursday, December 9, 2010

Moving forward.

The doctor did call with the previously mentioned results of the blood work that was taken after my last blog post. I've procrastinated on updating and have been finding myself a bit overwhelmed with trying to process and deal with the new issues that have been arising within out little boys body. He's been very close to pain free since starting TPN, as close as he's ever been. And it hurts my heart to watch as he begins to struggle with the returning pain that had once gone. It's hard.

The infections that were tested for did not show anything significant. Right now things are 'stable' in the liver. No worse, but no better. The GI doctor is following his weekly labs closely and will monitor things in that way for now.

Last week included a lot of driving. More specifically, to and from the hospital. I have posted about Monday's happenings.

*Tuesday we talked with the GI about some of the tests that had come back (liver enzymes elevated, billirubin elevated, etc, etc, etc.). Wyatt also started vomiting and crying each and every time that we gave him his multiple medications, multiple times a day. We give his meds through the J portion of his tube, which goes directly into his intestine. He's not "supposed" to be able to vomit, reflux or 'feel' anything. I can't even count how many times we've been told this. And, yet, do you know how many times it has happened? Wyatt could tell you...it can happen. It does happen. He complains of tasting the meds, feeling it going up his throat to the point of gagging and vomiting. And it leaves the kid feeling really rotten. Not to mention, we can't gauge how much of what med he actually expelled or absorbed....which is important to know.

*Wednesday he had a previously scheduled GJ tube change (good timing). He did amazing. It took quite a long time as they were struggling to place it where it needed to be. The radiologist noticed a few issues  within the xray that indicated that the motility in the area had slowed waaaaay down again and was not moving adequately. That evening, after talking with the GI doctor, we started two more medications that would help with any bacterial overgrowth that may be happening.

*Friday we talked with the doctor (again!) and headed back to the hospital for an xray to check placement of the new tube. He was continuing to struggle with keeping his medication down and being comfortable.

*Monday morning the GI doctor decided to try placing a longer GJ tube deeper into the intestine. Hoping that this would make it nearly impossible for the fluids going into the J tube to 'backflow'. The IR team and radiologist were confused and, it appeared, even slightly annoyed about having to place a longer tube when the current tube was technically where it's supposed to be. Even if it wasn't working for him. Apparently this doesn't happen....or so they were leaving me to believe. Wyatt, again, did amazing. Taking deep breaths and talking to me about the holidays while the radiology team foraged new areas of his GI tract to place the longer tube. It, again, took awhile and they were not very optimistic when talking with me about it's positioning. Then again, they weren't very optimistic from the beginning. But the BEST part of all of this....it seems to have worked! His medicine is staying down and he's much more comfortable when we're giving them. That is at least a bit of success, in our eyes.

Since getting the tube issues sorted out we started running trophic feeds like I discussed in my last post. Wyatt's handling it well, but we're back to draining the g-tube (stomach) more often than not and he's now expelling an interesting range of colors. It gets a bit tricky for him trying to walk about the house while being tethered to several tubes. With his rolling backpack that holds the TPN that is running 20hrs a day, the backpack that is holding his entereal pump/pedialyte that is running 18 hours a day and also the drainage bag that he carries or is hanging from his waist, he can get a little tripped up at times. We spend portions of our day untangling the tubes from the twisted mess that they very easily become. But we know that running something, anything, no matter how small the amount, through his GI tract is important. So, we keep moving forward.

One foot in front of the other. One day at a time.

Christmas is quickly approaching and the tiny humans are becoming restless with excitement! I love this time of year, with the twinkling lights, the festive music and family traditions that are carried out each year. Our family enjoys driving around in the evenings to view the creatively decorated homes in the area. Already this year we beared the frigid temperatures and donned multi layered clothing to attend a local theme parks festive activities. It was very COLD, but fun! It brings me great joy to watch my children experience this magical time of year with such enchantment, just as I did and still do. It's special.

Happy Holidays!
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Tuesday, November 30, 2010

More time to wait.

I did indeed pounce upon the imaging scheduler yesterday morning at 8am sharp asking to schedule Wy's abdominal ultrasound as soon as possible. She gave me a time.....on Wednesday. I was slightly put off and told her that we were told that it was to be done today, Monday. My son is donning a hue of yellow, after all.

But, she was unable to help me. The order was not marked "stat", as she told me, and they have no time slots available until Wednesday.


I thanked her for her help and hung up to directly call the GI office. I left a message for the doctor and waited for my return phone call.

We had an appointment at 2:30 yesterday afternoon for an abdominal ultrasound. 

Is it horrible that I so badly wanted to call back to the scheduler just to say "Ha! I told you so!"...? I feel a little bad for feeling this way. But I can't deny, I thought about it.


We saw the doctor after the ultrasound. The good news is all necessary organs were seen and nestled in their respective positions. The not so good news is his liver is inflamed and enlarged (I think that goes hand in hand...but she used both terms). They drew a large amount of blood work for levels of various things and also looking for infections which can 'attack' the liver. We switched medicines that could have been contributing to the situation to alternatives. We had already planned to start trophic feeds after his scheduled tube change (tomorrow) and will continue with that plan. Trophic feeds are just a very small amount of formula put into his Jtube to keep the GI tract 'working' and prevent it from becoming 'lazy'. We're starting at 3ml's per hour and working up to 5ml's per hour of pedialyte. And if he tolerates it well, we will switch over to his formula, Elecare.

For reference, 5ml's equals a teaspoon of liquid, which will be dripped into his intestine over an hour. It is not for nutritional value as his nutrition will still come from the TPN, but it can (and we hope) help the GI tract (and liver) to keep functioning.


So, now we wait some more. Until the doctor calls us with the results of the blood work.





*pictures are from several months ago.
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Sunday, November 28, 2010

Waiting and watching.

The tree is up, it is lit and the ornaments are hanging delicately from it's branches. We decorated the inside of our home yesterday evening after shopping briefly for a few new holiday decor items. The holidays have been in full swing here at our home. Wyatt, especially, was feeling the spirit and desperately wanted the house decorated this weekend. We couldn't say "no".

It hasn't been too long since I wrote, but it feels as if a lot has happened.

We learned that Wyatt is very possibly allergic to eggs. The blood test was slightly elevated and he did have a reaction to the skin test. So, for now he will avoid eggs (not that he eats, but he does occasionally 'chew and spit' for flavors). During that same appointment we learned that his immune system testing that we once were flippantly told was "fine", is actually not fine. We are re-doing those tests to make sure all is accurate.

At this moment, his liver enzymes and billirubin are elevated. And he has been turning shades of yellow while intermittently putting out iced tea colored urine for the last week. In all fairness, his skin and eyes were not yellow until Wednesday while we were already awaiting blood work to return from the lab to tell us what the iced tea colored urine was about. And we didn't hear from the on-call GI doctor about the results of said blood work until Friday evening. He started a medicine yesterday to help "flush" his liver. And we are now cautiously waiting out the weekend at home until he can get an ultrasound of his abdomen to see if there is anything to be seen. We have orders to immediately head to the ER if any changes are seen.

So, that is where we are. Watching, waiting and ready to pounce on the imaging scheduler first thing in the morning to schedule that ultrasound.
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Tuesday, November 23, 2010

Technology


On Monday the school was able to set up the video streaming system that connects Wyatt to his classroom via a laptop computer.


He was shy and unsure at first. And it clearly will take some getting used to for all involved. But he was able to interact and learn along with his classmates during the lesson that his teacher was providing at the time.


He was thrilled to be able to see everyone and his peers seemed to be just as excited. 

In Wyatt's own words, "It was SO COOL!"

*Technology can be used in amazing ways, and for that, I'm so very thankful!*
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Wednesday, November 17, 2010

Prematurity

November 17th is Prematurity Awareness Day. Today is Prematurity Awareness Day.

This day has me reflecting upon our experience with prematurity. We've had 3 distinct experiences.

Maggie was barely a preemie, being born at 36 weeks. Her birth didn't go as planned, but do they ever, really? The joy that I was feeling as a result of her arrival was immense. I was floating high on pure happiness and blissfulness. She originally came home with us a couple of days following her entrance into this vast world. She was home for one day before being readmitted to the hospital for several more due to severe jaundice. As an unsure, very new Mother it was worrisome. I felt very unprepared for this parenting path that we were now venturing into. Like a lot of new Mommies-to-be, I had envisioned my birth experience and my baby's first weeks much like what most reality based TV baby shows and stories depicted. I read the trendiest of pregnancy, birthing and baby books cover to cover. I planned and dreamed. Then it all happened and none of it the way it was supposed to be. But she was breathtaking and memorable just like I dreamed.

Our experience with Wyatt was very different. I had been on bed-rest for many weeks prior to his arrival. A couple of those weeks leading up to his birth were spent in the hospital, unable to move from my bed to ensure he stay safely inside my perfectly capable womb for as long as possible. His birth was intense and scary. Born at only 26 weeks gestation, weighing 2lbs 8oz. Maybe it was the fact that I spent weeks on bed-rest researching and learning all that I could about premature babies, just in case, or maybe because I felt more comfortable in my Motherly skin, but I felt a little more conditioned for this adventure that we were thrust into. I prayed a lot. I remember seeing my son for the very first time...his sagging, translucent skin wrinkled and covered with a slight fuzz, reddened and bruised in some spots from the nurses and doctors touching him. I fell deeper in love with my baby boy. He was so beautiful, so tiny.

We took precautions very early in Jilliana's pregnancy. We saw my doctors often, more often than typical, doing their best to ensure that we made it to our goal of 36 weeks. The outlook was very promising that I could and would make it to our goal. I received weekly injections to help prevent the start of pre-term labor. I drank enormous amounts of water daily while making sure to rest when I could, so not to stress my body more than it needed to be. I was nervous, but optimistic as the weeks passed. I allowed myself to plan and dream of holding our youngest daughter directly after birth, her bassinet beside my bed allowing us the pleasure to hold her as we pleased and watch her sleep. At 34 weeks gestation our 3rd preemie was born. Weighing 4lbs 15oz and rushed away to the NICU. We were so close. I was feeling defeated but this time I knew my surroundings, I knew the path that we were traveling. In some ways it made it easier to know what to expect and in other ways it was much harder for me having to leave the hospital while my baby stayed...again. My beautiful, charming baby girl. So perfect, so sweet, so little. Our baby girl was here, our preemie journey is complete.

1 in 8 babies are born prematurely, born too soon. Know the facts, be aware. 

Visit the March of Dimes website to learn more about how to prevent premature births. And how you can get involved to help save babies.
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Thursday, November 11, 2010

The boy's news.



A medical update on our boy...it's been relatively smooth sailing. He's on TPN 24hrs a day and feeling good. His PICC line looks great and is holding it's own against the constant use. Other than a few labs that have been a bit wacky and requiring the TPN to be adjusted accordingly, all has been somewhat quiet and manageable.

He did have a urodynamics study completed this week and the doctor was pleased with how everything looked. We've noticed a very positive difference with his output and the amount that he has to work to actually 'produce' urine since starting TPN. We talked with the urologist about it and he agreed that he didn't see the same pattern as he was showing previously, which is great, but he didn't have a good explanation for it either. The only thing that makes sense in our "parents of Wyatt" medical curriculum would be that we took away the stressor of making his GI tract 'perform', which is alleviating some energy that can be used elsewhere in his body. Thus we see improvement in areas that were once struggling prior to starting TPN. It makes sense....to us. After all, this is how Wyatt's body functions from day to day. It appears to have learned to prioritize in the way of what gets first dibs on the available energy. It can be quite clear to those who are with him on a regular/semi regular basis. Though, we wish a certain couple of his doctors would even acknowledge this obvious way that his body functions.


Throughout the day Wyatt has really started to enjoy reading books during his down time. His favorite right now is the Marvin Redpost series. This makes me so happy...he's reading for enjoyment! He's also taken a liking to drawing. (!!!) Which was something that he never had the energy or patience to do prior to this change in our structure. So cool and great fine motor work! During the school week one of his teachers comes to our home for 90 minutes twice a week and is working 1:1 with him. While the other days we fill in with the additional work that needs to be completed. Meanwhile, the school is diligently working to get the other supports in place that were discussed during the recent IEP meeting. Including the video streaming system (think Skype) that they are trying to prepare in order to bring the classroom into our home via Wyatt's laptop. He's very excited about seeing his class/classroom through his computer while at home! I have to say, we're all a bit excited to see how this will work.


There are several appointments on the horizon, along with the 2nd grade field trip to the Aquarium that we're tagging along on. I'll be sure to update about each and the happenings in between.

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Tuesday, November 9, 2010

Little showstopper

 Grab a seat...


sit back and relax.        
                  Shhh!
 The show is starting!        
                I hear...
this girl is pretty great.        

Encore!




*Indeed, that's a toilet paper holder that she's enthusiastically singing into.


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Thursday, November 4, 2010

Life's what you make it.

I have found myself daydreaming and reflecting these past few days. I'm not entirely sure why I'm feeling stuck in such a thoughtful, reflective mood of late. I seemed to have ran smack into that wall of reality that I spoke of in another post. I don't like this wall...not one bit, but we tend to have an ongoing relationship.


It's "our normal", but it's so not 'normal'. If I think back through the last 8 years, it seems surreal. If I take the time to tell the full, ever fluctuating version of Wyatt's 'story' to someone who did not and are not 'living it' with us, it sounds much like a fictional script for some new drama filled sitcom. It's kinda ridiculous!

Possibly my reflective mood has stemmed from the meeting that we had with Wyatt's educational team last week. It was a very good meeting and we left pleased and inspired with the outcome. But I feel sad for our boy who is unable to return to school at the moment. I know it's not a forever, set in stone, can never be changed decision. I know that if (when) we are able to get him back to tolerating J feeds he very well may be able to return to his previous schedule...but while receiving TPN he can not. While he's feeling the best that he has in a long while, he can't enjoy it with a classroom full of friends. While he's excited for the possibilities that were discussed within the meeting, he is still missing his friends. As a Mom I feel I can fill, learn and adapt to many roles. But a classroom full of 7 and 8 year olds is not a role that I can conquer or re-create for him.

After the meeting and while trying to process all that was discussed I realized that I feel so awkward explaining our life to others. Some listeners are questioning, some are confused, some indifferent, and others are kindly sympathetic. But either way it leaves me feeling so muddled inside. I feel as if some expect me to be in a puddle of my own tears much of the time. And sometimes I even feel like it would be less awkward if I was a complete wreck, because that's what they're expecting after all. But, really, that's just not how I feel...or maybe more appropriately stated, it's not how I let myself feel all the time. Much like the saying that Wyatt recites "You get what you get and you don't get upset!" This is similar to how I feel in this life. Now, granted, I certainly do get upset at times, but I'm not a complete emotional wreck. (yet!) Why or how that is...I'm not sure. And there are the days that I need to stop and remind myself that I'm not the one in control, "Let go and let God", as they say. But life's what you make it...right? And while my life may be different than many of those around us, I can call it my own. And for that, I'm very thankful.

And if (or when) I do become that emotional wreck that many are expecting of me, you better believe I will be blogging about it.
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Monday, November 1, 2010

Fall Festivites


I enjoy Fall...decorating our home, picking costumes, carving pumpkins, basking in the change of seasons.


The leaves adorning the trees are transforming to vibrant shades right before our eyes. The air is crisp. It smells like Autumn.


The children are restless with excitement of the impending Holidays and accompanying festivites associated with each.


 It's my pleasure to introduce the debut of the transient trio...
Hermione, Harry Potter and Harry's pet owl, Hedwig (with a princess bag..."because it's PINK!").

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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

Home!

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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