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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