Fear, Hope, & Faith

Just taking a moment to share... This is not really an update on Lydon but more of just a window into my life right now as Lydon's mommy.  First I should say how very blessed I am to be  Lydon's mom.  He has a way of melting my heart and making it swell up all at the same time.  He's an amazing little boy and I am so very thankful and grateful to have been blessed with him and see him overcome the challenges that he has. He is so strong... so brave... our "Super Man"... and often times our hero.  That being said, I am so very nervous about the procedure we are scheduled for in a couple of weeks.  While I feel like being accepted into this new clinic is a good thing and could provide answers and the kind of care we have prayed for I am having a hard time calming my nerves. Those that are closest to me have tried telling me "not to worry" and to "have faith and leave it in God's hands." While spiritually (mentally and emotionally) I know that this is the right thing to do, its what I need to do and in fact, it's all that I really can do, I just cant seem to do it.  For me, the thought of putting Lydon under anesthesia again is not just terrifying scary, it's physical.  My stomach hurts at the thought of watching his little chest suck in and out as he struggles to breathe and seeing his tummy bloat as he breathes harder and becomes more acidotic. My head hurts as I think about the tears I've cried and the conversations we've had discussing our options with numerous physicians during these times.  My neck hurts and I have literal knots in my back and shoulders as I remember the nights without sleep or slightly sleeping in a cushioned window sill (literally). My heart aches at the thought of the pain and suffering Lydon could go through and for being away from my other two babies night after night and still not knowing if or when Lydon will turn the corner and get better again. Despite it all, I know that this is the right thing to do for our boy. So, somehow as I've done many times before, I have to find the strength and courage from within to soothe my stomach ache, relax my neck and back, and squelch my fears. And while as a Mom, my inner most self wants to crumble and give in to the hot mess of emotion I am feeling, I can not...I will not.  My boy needs me to find my hard shell and wear it! He pushes so hard every day against challenges that would get the best of many adults in a matter of days. "No, my doll I will not tuck my head under my shell and hide." I will stand behind it and fight for you just like I always have. I choose 'Hope'.... I choose to believe that even more prayers will be answered and that this will be your time, your season... that we will find answers through this procedure and come up with a plan with this new team that will allow you to play and not be oxygen hungry, eat and not vomit and sleep and be rested.  This is my wish, my prayer for you Lydon, my 'Joy'.  So as hard as it may be to ignore the physical aspects of the anxiety that I feel, I will hold on to my 'Faith' in our Heavenly Father which is so much bigger than my stomach ache, my headache or even my fear. No, it is not an easy thing to do and I have to keep reminding myself (over and over again) that HE is with me and HE will be with you on that OR table. Slow and steady wins the race!

The latest on Ly

 

   Last time I updated on Lydon, we were trying a new medication and had just changed Lydons GJ tube out to see if that would help any with his pain.  It has seemed to help with his pain-YAY for that-- but his appetite has not been what it was and he has definitely still had a lot of fatigue and poor stamina.  In December, we made an appointment to meet with our ENT.  This doctor has taken care of us before when Lydon was younger and in fact was the first doctor who suggested that Lydon may need some type of airway manipulation such as a tracheostomy or surgical intervention.  That of course is the last thing in the world that we want but as parents we also want for Lydon to have a quality of life like the rest of us. At the moment, his quality of life isnt the greatest or not at least where we would like it to be.  He can not play for more than a minute or two (no exxageration) without becoming very short of breath and vomiting.  He stays very very pale and has little to no energy. Literally to the point that he doesn't feel like eating.  On Saturday, he was with my mom all day and usually "eats the house down" just because its Granmommys house I guess, but he ate nothing until about 7 pm and then ate a small bowl of oatmeal but by 9pm he vomited twice as much as he ate. Yesterday, was much the same except the oatmeal was mac n cheese. He's such a "pro" at vomiting he knows to run to the kitchen or entry way so that he vomits on the tile. So, back to our appointment...We made this ENT appointment back in December after we had met with the Cardiologist and gotten the all clear from them on Lydons heart. Once we ruled out his heart as our culprit, we felt like re-evaluating his airway was our next step.  Since then, Lydon has continued to have the issues and symptoms I already described and occasionally de-sats when he sleeps.    So, we were very anxious about this appointment again in hopes that we might find some answers and some way to change some things for Ly.  The appointment was originally scheduled for last week but I got a call that the doctor had a family emergency and had to cancel.  I was very upset and explained to them how long we had already waited and what we were coming in for and they rescheduled the appointment for yesterday.  I'll admit I was somewhat anxious but after literally years of searching for answers for Lydons issues, I've learned not be too optimistic about hearing anything conclusive. So yesterday we go and give some history to the doctor. She talks to us for all of about five minutes and then says that there is a clinic that Lydon belongs in and she'll be right back.  So, she leaves the room and comes back with the coordinator for a fairly new clinic at TCH for medically complex kids.  She told us that it "just so happens" that this new clinic was there having their clinic at the very same time in the very same hallway as we were.  I do not count it coincidence....again our appointment was originally scheduled LAST week.  What are the chances of our appointment being rescheduled to this particular day??? So, we didn't get any answers to anything yesterday but we were referred and accepted into this new clinic.  We will be seen at the next clinic day the first part of March and the three doctors that head up this clinic together will go back to the OR the next day. To say I am anxious about this is an understatement.  I am optimistic that this may be our answer to some extent. I am nervous and worried and scared and a host of other adjectives that I dont have time to write about in regards to Lydon being put under anesthesia again.  They have already reassured me that every precaution will be taken but I know Lydon and not the 10,000 other kids they take care of therefore, I am only slightly reassured but not relieved. So we will see... We did feel "handed off' but we did not feel dismissed but rather "heard" and in our world, thats a rare and beautiful thing.

"There is a season for everything, and a time for every event under heaven" Ecclesiastes 3:1-International Standard Version

GI Update

I posted on FB earlier this week that I would post an update as soon as I got a spare moment and the moment has come! ;) After ouir ER visit, Lydon continued to complain of with his stomach and his "butt-ton". He didnt want us to connect or disconnect an extension and would even whimper and hold his tummy in his sleep. So, on Tuesday our GI NP that knows us pretty well at this point saw us in clinic.  We explained everything that we have been seeing with Lydon lately. His continued complaints of pain with his button, decreased appetite and complaining after he eats, bile backing up and out of his tubing, bloating and distention, and his fatigue and lack of energy.  Our nurse ended up holding him and hand feeding him Tuesday morning he was still so tired even after a full nights rest.   So after talking literally for more than two hours we decided to start with the easiest possible solution. "Easy" of course being a variable word. The GI NP felt that we may have just gotten a bad tube and that with all of his complaining it warrented changing it to see if that would help him any. Next, we may try one dymotility medication. We have at one time or another tried them all to no avial. Our manometry test proved this as well but this medication is used "off label" for its motility side effect. We have just recently tried this medication and did not see any positive side effects but it may be worth trying one more time. If neither of those two things help then we may have to do an endoscopy to see if he has an ulcer somewhere that is bothering him.  As far as the lack of energy and fatigue, her thoughts were that this is just a typical mito symptom.  Lydon just recently had a growth spurt and gained more than 1lb and more than 1inch!!  She (GI NP) feels like maybe, Ly's body has tried to compensate for this growth spurt and just hasnt really had the energy for anything else above and beyond that.
     So, yesterday, we headed back down to the med center. Thankfully TCH can change our GJ tube in the IR department without the use of anesthesia which is always a very serious major issue for us. Lydon always gets nervous and is such a little heart breaker. But, Mommy knows that in five minutes we are back in each others arms and not in the PICU on a ventilator!! We will see what happens from here but so far he has been in a great mood today and not complained at all.
     After we went to IR, we were seen by neurology.  Our neuro thought that Lydon looked great!  He commented on the tightness in his calves and ankle weakness but he feel likes he is doing very well and just asked us to put Lydon in hi top tennis shoes when he is active.  We also learned that our whole exome test results are back but so far, we havent heard back from genetics.  Maybe next week!
Until next time.....

Never a dull moment

I posted the other day that we were playing the waiting game with Lydon and this "new" GI pain.  Well it wasn't a very long game, although I guess that is very relative based on who you are asking! We started the new medication, which is suppose to help with GI pain, Wednesday night. Thursday morning, Lydon woke up pretty early complaining with his stomach. When I went in to check on him, I noticed that his extension tubing was full of thick sludgy bile and the valve had popped open and there was bile all over the bed.  I know that the end of the tubing lies right into the jejunum which is very close to the common bile duct.  So although it is possible to get bile back up from a j tube, I was concerned with the amount and how thick it was. Later Thursday afternoon the GI nurse called me to check on Lydon and see how he did with the new medication.  I told her about the mornings events and she insisted on calling the doc.  She called back and instructed us to go to the ER to have an ultrasound done on Lydon's abdomen to rule out a couple of possible serious causes of his pain and bile back up. So as much as we hated to do so, we packed up and headed down to the ER.  After the ER doc examined him, she was concerned that with the combination of the bile back up and his pain after eating we could be dealing with a gallbladder issue.  So we got a stat ultrasound before they even drew Lydons blood. Several hours later, we got the results.  Lydon's ultrasound looked good.  No gallbladder issue, no liver problem and no pancreatitis!  The xray did show that the J portion of his GJ has slightly slipped up away from the jejunum but for the moment, it is still acceptably in  place.  The docs thoughts are that Lydon is having some intestinal inflammation and may have an ulcer from acid reflux. Although I am very relieved that Lydons pancreas and gallbladder are functioning well and not diseased in any way, I hate thinking that his stomach is hurting and that there really isn't anything that we can do to help him. I am scared to think about what is happening with his dysmotility and where that will end up. I feel like I am living in a constant state of anxiousness or panic...maybe it is just the fear of the unknown but either way, it just plain sucks! For Lydon, dealing with the intermittent pain and for us to not know what to do or how to help him. On a good note, we now know that this isn't an urgent matter that needs any type of surgical intervention and we are working closely with our GI team and feel like they are being very proactive in trying to help us help our boy.  So, for today, we are just happy to be home (albeit exhausted) and not inpatient dealing with a surgical/anesthesia issue which is always so complicated for us! Thank you to all of you who prayed, texted, emailed, and tweeted your expressions of love and support last night. In our weakest scariest moments, that is what strengthens us!  Much love.....

A call from GI

Today, I got the final word back from our GI doc. We are going to do our best to treat these new symptoms that we are seeing. For now, we've decided to increase the dose of one of Lydons GI meds and add a new medication. This new med is used for neuropathic pain and suppose to have very little side effects. So we are hoping that is exactly what we get. Decreased GI pain, and no side effects! We are staying in close contact with our GI doctor and his nurse. For now, we play our favorite game ( insert sarcasm), watch, wait and see... We will check in with them again on Friday and see how things look then.

A quick little update

Just wanted to post a quick update about Lydon.  Over the last couple of weeks he has started having some increased GI/Abdominal pain.  We spoke with GI and at the time it was felt that his pain was just a result of his dysmotility and was to be expected to some extent since this is an issue that waxes and wanes over time. However, over the past several days, the pain has become much more consistent and more intense. He had a rough weekend with pain and even woke up during the night with pain.   It seems to be worse within minutes after he eats anything and then today he has complained even after just drinking his milk.  His appetite is definitely decreased as well. We have a call in to the GI doc to see what our plan. Please pray with us that can figure out what is making our boy so uncomfortable and that there will be something we can do to help him.

Happy Birthday...Goodbye 2012, Hello 2013!

     Yes, its true, I am another year older. I have completed 37 years of this,  my earthly life. I so clearly remember being 17 and thinking that I knew then everything that I know now.  Whats funny is that I probably did know most everything that's necessary for survival. I knew how to drive, how to cook, how to do laundry, balance a checkbook, study and ace a test, etc. What I didn't realize is how much knowledge I would gain from just living life the last 20 years and how much that knowledge would change who I was and my prospective on life.  In the last five years I feel like I have learned more "life lessons" than I did in all the 32 years before. I now realize more than ever before what an incredible blessing it is to have a healthy baby/child. I realize how I have in the past taken for granted the fact that my children would turn 5, hop on the school bus and walk in to Kindergarten. I now understand the heartache of knowing that my baby boy very likely will not get on the school bus and walk in to Kindergarten. And after the events of this past month,  I also understand the joy of seeing my other two babies step off the school bus each afternoon! Never again will I walk my kids to the bus stop or drop them off at school and not say a prayer of protection over them as I drive away. I've learned in the last two years that when times are tough, you may not really have as many friends as you once thought you did but the ones that honestly care about you will shine through like a diamond. After all, diamonds are made in the rough! In 2012 I was either directly or indirectly acquainted with four families who lost their babies. All of them only 2yrs old or younger. From this experience, I learned that much of life is not about how big your house is or how clean your floors are (although I would love to have a bigger house with cleaner floors) but about how much time you spent living in the moment! Not just being in the moment but putting down the cell phone and living in it!That lesson has been even further drilled into my head as I take care of my 90 yr old Grandmother. Many times for her, she doesn't remember if she ate breakfast or took a shower but she remembers seeing Lydon everyday, she remembers him teasing and playing games with her. She remembers her brothers and sister, her parents and childhood days, and her spouse and all the memories they made while raising four children. She often times doesn't remember the tangible things like the  house they lived in or the cars they drove.No, she doesn't remember the things that you can see, but she remembers what you can feel. The love. The trust. The loyalty and faithfulness.
     2012 was an extremely rough year for us. We spent the biggest part of the first half of the year in the hospital with Lydon and then at home on TPN. We faced several challenges with Lydons health care and had to make the very hard decision to switch some providers. I had to quit a job that I loved because of  Lydons health issues. We in turn battled some big financial issues. We experienced the heartache of seeing some friends bury their babies all the while knowing in the back of our minds that especially after this past year, we couldve just as easily been walking in their shoes.  Jonathan continued to battle some major health issues that are still unresolved. We dealt with some teenage issues which are never fun and always a challenge.  2012 was not a "good" year but I learned some of the most valuable lessons that I feel like I will hold on to for the rest of my life.
     Life really is about the moments that take your breath away. Saying good night and good morning to the one person who smells your morning breath and still loves you. Seeing the joy on your children's face when they realize how to read a sentence or spell a word without your help. Feeling the joy on your own face when your teenager tells you how much she appreciates you taking her to school when she misses the bus or when Aidan told me on Christmas night that Christmas really isn't about all the presents but its about the birth of The baby Jesus and that all we really need is the love and the caring. Realizing that it really doesn't matter at all what house you live in as long as all of the people you love and care about are still alive.
     So as we say goodbye to 2012, I choose to remember it as a difficult year indeed but also a year in which I gained so much! And as we begin this new year of our lives, here is what I wish.
Hollie, my beautiful girl... I hope that this year as you finish your sophomore year of high school that you find your passion, whatever it may be...music, photography, or maybe something new that you haven't ever tried before.  I hope that passion grows deep in your heart and always bring you comfort and joy. I hope that the challenges that you will face in school, in learning how to drive, in friends and social situations aren't too hard but difficult enough to make you stronger and more appreciative of who you are and what you have in life.

Aidan, my energetic boy... I hope that you will learn to be more focused this year. I never want to lessen your love for life and the zeal and the zest that you have for having a good time but sometimes life isn't all about fun.  I hope that you learn that it may not be as fun to follow the rules but that they have usually been put there for a good reason. I hope that you learn to listen better and redirect your passionate energy in the right direction. I hope that you never lose your love for activity and playing hard; otherwise, you will have to drastically change your eating habits to avoid obesity and we all know how much you LOVE your food! ;) I also hope that as you get older that you do not become "wiser" and lose your color-blindness. I love seeing your love for others and your willingness to be friends with everybody regardless of age, race or gender.

And Lydon, my doll... I hope that this year isn't as difficult for you health wise as last year was. I hope that we can do something to improve your airway issue and give you the ability to play without being short of breath and vomiting. I hope that we can come up with some way for you to attend preschool and develop friendships with others your age. I hope that you can have a year without hospitalizations or pain. I hope that you grow bigger, stronger, taller and laugh...a lot! 

And Jonathan, my love...I hope that we have a better year with less stress and more down time. Even more so, I hope that you have a better year. I hope that you are able to get some answers and resolutions to your health problems. I hope that this year brings treatments that grant you less pain and fatigue. I hope that you are able to move forward in career and all of your hard work in 2012 pays off. I hope that you are able to enjoy life more in 2013.

And for myself, I hope that I can continue in my quest to become stronger and healthier. I want to make more time for prayer. I want to focus more on not just disciplining my children but teaching them right from wrong. I want to teach them how to find more happiness and contentment in the things that are free... doing for others, coloring a picture for a friend, singing a song or playing a game. And my wish for all of you is that in your own way, you can do the same because when all is said and done, love is all we need! Happy New Year! Here's to hoping and praying that 2013 will be good to us all!!

 

Love is patient, love is kind.

It does not envy, it does not boast, it is not proud.

It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

Love does not delight in evil but rejoices with the truth.

It always protects, always trusts, always hopes, always perseveres.

1 Corinthians 13:4-7

 

Love NEVER fails!

1 Corinthians 13:8