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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