Merry Christmas 2012

Merry Merry Christmas from our hearts to yours. My heart is so full as this day comes to an end. I know that "Thanksgiving" was last month but, I  am so thankful for so many things this Christmas. Thankful that we have completely avoided overnight hospital stays for more than six months! Thankful for all of these months of stability we have enjoyed with Lydon. Thankful beyond words for our nurses who have been with us day in and day out for almost 18 months.  They make our every day life so much more bearable. They take the pressure off of me in keeping up with all of our medications, refills, supplies,etc and allow me time to take care of my other responsibilities without feeling guilty or worried about him. They do an excellent job of taking care of him but even more than that, they love him! They have become a part of our family and we love them! I am thankful for our families. They are such a source of strength and support for us. They laugh with us, cry with us, comfort and pray for us. They are always willing to help us, even if when it means cleaning up vomit!  I am thankful for our church and wonderful pastors. They warmly welcome us at each service regardless of how many services we may have missed in between. They frequently let us know how much they love us and pray for us and Lydon. I am thankful that my other two children are doing so well. Regardless of how chaotic and stressful our life may be at times, they seem to be very happy, healthy and full of life! Their grades and behavior is proof of that.   I am thankful for my loving husband who works so hard to make the money, budget the money and take care of everything we need and most of what we want. We have a couple of big issues we are anxious and worried about with Lydon that will be addressed right after the first of the year but for today, we are just thankful and happy and enjoying the moments. For if I have learned anything this year (sadly many times over), it is that tomorrow is not a promised day. We captured some of those moments in these pictures. I plan on posting some more of them but here's a little sneek peak! Merry Christmas to all and to all a good night!

Fall Update

 

I have promised a couple of loyal followers that I would do better about blogging.  So in trying to keep my word, here is my best effort.

Our trip to Sea World over the summer

"Look Mom, no hands!"

     As I've said before, we had a great summer. Towards the middle of August Lydon started having some increased vomiting. We kept in contact with our GI and his nurse practitioner and made adjustments accordingly. We also transitioned out of the crib and into a big boy bed. We felt very lucky to find bunk beds where the bottom bunk is just barely off the floor. Lydon did awesome with the transition although he still tells us he want his baby bed back!

Aidans 7th Birthday in September

     School started off with a bang for the other two and we had a couple meeting with our local elementary school about our preschool options for Lydon. It was determined that Lydon does not enough of an "educational" deficit to qualify for services at this time.  What that means is that Lydon does have some deficits, his medical issues being his biggest of course, but there is not enough of an educational need for him to attend school at this time.  So, we found out what we already knew. Our boy is a smarty and thank goodness none of his issues have effected his brain! We were advised to meet with the school officials again in the spring of next school year so that we can figure out how we can meet Lydons medical issues and provide him the best education.  At this time, he is pretty close to be on target developmentally but physically he could not meet the demands of a regular school day.
     In early September after we realized Lydon wouldnt be going to school any time soon, we increased our family and adopted a precious little "brother" for Lydon. He's an adorable little Schnauzer/Poodle mix.  He's a great fit for our family and Lydon loves him...most of the time!

"Loving life with my fav lil cuz!"



Lydon and Baby Nate

Throughout September and October, Lydon continued to deal with vomiting and the blue spells. We met with our cardiologist and neurologist and repeated some testing. The results showed that Ly's heart looks great! What a relief!! It was the opinion among both doctors that during times of physical exertion, activity, or illness, Lydon doesnt have the total amount of energy that he needs so his body is pulling oxygen from areas where it isn't needed (his nose, mouth/lips, and fingertips) to provide that oxygen to his more vital organs that needs it more. In order to help this autonomic dysfunction and to keep him more hydrated from all of the vomiting, we started him on continuous pedialyte at night. We went to Dewberry Farms in late October. Lydon had a great day and enjoyed being with his favorite cousin baby Nate, Uncle and Aunt Kimmy,Grandmommy and Pawpaw. We even met a little boy from England that also had a gj-tube. Lydon thought it was so neat to see another little boy with a "button" just like he has. We also met with Genetics. They suggested sending off another gallon tube of blood to look at some other possible metabolic disorders that may be causing Lydons issues. A couple of tubes were drawn for a genetic test called the whole genome test.  It is a very detailed test that will look at all genetic causes for Lydons problems.  We hope to get the results back sometime in February.

Beautiful, Happy, Perfect Day!

     That brings us to our somewhat eventful November.Sissy started Drivers Ed. The first three weeks involved some long busy days for her but she did it!  It seems that big brother Aidan has started having migraines so Mom has had to pick him up from school a few days and get him into to see a neurologist. We have a pretty good plan in place and so far have only had one that got really bad and put Bubby in bed for the day. ;( We  all suffered with the seasonal allergies that's all to familiar to southeast Texas in November. That didn't agree with Lydon's little literally little airway. So, we had a very scary night with croup and stridor, coughing and fever. Luckily, this wasnt Mommy's first rodeo and we had the fluids, meds, and oxygen that we needed to stay stable through the night.  We were seen in the pedi's office first thing in the morning and got even more meds but we made it through an illness without a hospitalization and saved Thanksgiving for Mommy and Lydon. We had a great Thanksgiving. Lydon wasnt really able to eat because of all of the activity going on but he couldnt have been happier to be able to play with all of his cousins.
     So far December has been pretty kind to us health wise.  We do have an upcoming appointment with ENT to again discuss Lydons airway issue and see if there is anything else we can do to prevent the recurrent croup/stridor. Lydon is extremely excited about Christmas this year.  He loves all of the lights, talks about Santa incessantly and wants everything he sees advertised. We are hoping we can somehow fit in a family photo session and get Christmas cards out. Regardless, we are looking forward to the rest of the holiday season and all of the joy it brings.

    

My sweet middle man...Aidan

     Seven years ago today, at about 2:32 in the morning to be exact, my life was forever changed as I instantly become the mom of a boy! I knew what it was to be a mom, but being a mom of boy is a whole new world. I knew that I would do my very best to teach you all of the important things that a mom should teach a son. You know, the every day life things that matter so much like bathing every day, brushing your teeth, picking up your clothes and toys, reading and studying hard and having good manners.  As I layed on the couch or sometimes in bed in the hospital waiting for your arrival,  I thought for months about all of the things I would do and say and teach you to do.

     What I didnt realize during all of those months of thinking and trying to imagine what and who you would look like, is how much you would change me! I've learned so much from you. You have taught me that sometimes, its more important to get dirty and have fun than take a bath. That picking up clothes and toys is over rated and can wait until later. Reading and studying hard seems even more important to me now than it ever did before because I see your eagerness to learn and appreciation for things you dont know.  You've taught me that as much as you love to learn, you love to play and playing hard is equally as important. You've taught me to be so much more patient than I ever was before as you have insisted so many times on doing things by yourself even when it took you longer than it took me, you were too short and not strong enough for the task at hand. But those things dont stop you...No, you just "take the bull by the horns" and get it done one step at a time. You've taught me to push harder, be stronger and remain fearless through it all.

     You've amazed me as you have accomplished so many things so quickly. You've spent hours on our swing set learning how to flip over, under and through the rings. You learned to ride your bike without training wheels in about one hour. You have easily and perfectly passed each test and advanced through five Karate levels in the last year and earned your blue belt.  Amazingly, you became an incredible reader in Kindergarten! You've learned how to swim like a fish and can play video games like a pro and have been completely fearless as you started your newest adventure in gymanstics!
     You have learned and accomplished more in the last seven years than I ever wouldve imagined when I first looked at your adorable little face. I watched you fly through all of your developmental milestones with ease and become a very strong independant little boy. It seems like yesterday, you were my toddler learning to go potty and speak correctly and now you are teaching your baby brother to do these things.

     I have taught you many lessons in personal hygiene. Ive taught you how to share and say I'm sorry. I've taught you that not every body thinks that bodily functions are funny and sometimes you need to have better manners. I've taught you that it's better to pick up your clothes and toys before you go to bed than it is to wake up to a mess. I've taught you that some things aren't as easy for others as they are for you and watched you become very tender hearted and sensitive.  Yes, I've taught you a lot of things in the last seven years but I can't wait to see what you will teach me in the next seven! 

    Happy Birthday sweet boy! I am anxious to see what this next year holds for you. Love Always, Mommy. 

Not for the soft hearted

Helloooo!! Yes, I know it has been way too long since my last post.  We have had a fantastic summer and I will blog more about that later.  Lydon is doing very well over all and I will post some of the specific details in the near future but I need to get this one out first. I guess its more of the non specific little details that are weighing on me the most. Here goes...
 Having a child with special needs doesn't just start and stop with that child. Instead, it kind of takes everybody and everything within its near vicinty and encompasses all of it. For a while, after you adjust to being engulfed inside this label, you tend to forget about it. You go about your everyday life and things become for the most part "normal". Normal for us includes days of eating and not eating, often times gagging and vomiting, being short of breath with any activity and even sometimes turning blue. Sounds kind of scary and overwhelming when you think about it day in and day out but that is "normal" for us. Day after day, week after week these things have over time just become part of our life. That, I can deal with and have gotten very use to cleaning up vomit, watching Lydon's spoon with an eagle eye to make sure he doesnt put too much in his mouth and gag, and many times scooping him up and wiping him down with wet washcloths in an effort to cool him down and prevent him from turning blue or vomiting.
     What I am having a hard time dealing with is the fact that sometimes as routine as all of this becomes, the moment when you least expect it, it just hits you so hard in the gut that it almost takes your breath away. This week as Aidan began a new school year, I received paperwork from his teacher asking what important facts and  information she needed to know about Aidan. Did he have siblings and how old were they? What were some of his accomplishments/successes?  This is something so routine and "normal" to do during the first week of school but after several non eventful months, I was suddenly but so subtly reminded that I have a child that requires special care and I felt a sting in my heart so literally I was sure that something bit me.  A couple of nights ago, Lydon was very tired and wanted to watch "his" show and Aidan of course did NOT want to watch "that baby show". In one short sentence, I told him that Lydon was tired and couldn't stay up any longer but that he was a strong big brother and could watch what he wanted later. He acted like he instantly understood and quickly and willingly handed me the remote to change the channel. This made my heart swell with pride and admiration for my 6 yr old.  I couldn't help but include in the paperwork for his teacher what an amazing big brother he is!
     This morning, I met with the diagnostition at our local elementary school to discuss what programs and options we have for Lydon educationally speaking. The meeting went very well and the people were very nice and anxious to meet Lydon. As positive and encouraging as it all seemed, again it was hard not to notice the pages of notes she took and the overwhelming look on her face as I explained Lydons medical issues. Again, my heart stung. And as Jonathan and I were discussing some of the details and possibilities of working out a schedule and time frame that would work with Lydons medications and eating/feeding and somehow getting both boys to school on time, he said 'Well, that is just our life..I dont expect it to get any easier any time soon".  This was a very true statement and I understand exactly what he was saying but somehow in that moment of trying to figure out how to make the necessary accomodations for Lydon to attend school it too stung my heart. Our baby is almost in preschool. We should be done with bottles, and formula and vomiting and diapers and time sensitive schedules but...we aren't. And as much as I love every single inch of his newly pudged up squishy little body, sometimes I just wish that things weren't so complicated for him.

Great news

This post will be short and require very few words but oh how sweet it is!! We are happy to report....Lydon is doing GRRRRREAT!! About a month ago, Lydons cardiologist started him on a new heart med to try and help level out or better control his dysautonomia. About two and half weeks later, it was literally like somebody "flipped a switch". He is playing, laughing, talking and eating non-stop! No vomiting, no shortness of breath and great endurance! :) We are thrilled to see this change and although it may be partially the result of the new medication, we are giving our almighty God all the credit for this. Many, many prayers have gone up for Lydon, especially over the last several months. We have held on to our faith and belief that God has great things planned for our beautiful boy and this seems like a small token that proves just that! A million thanks to those of you who have prayed and believed with us. Words cant explain the joy we felt this weekend... On a whim, we packed some bags and threw everybody in the car and headed to San Antonio. Sunday, we went to Sea World where everybody had a blast! But to us, it was priceless watching Lydon run, jump, ride rides, swim and eat pizza and ice cream right in between his brother and sister. I wish I had a picture to have captured every moment but I was too busy trying to keep up with him to carry the camera! ;)

An anniversary tribute

Ok, so most of the time this blog revolves around the drama challenges that we face in dealing with everyday life with our three kiddos and primarily the little one. But today, is different. It’s a special day that doesn’t center around any drama, no medical challenges or childhood milestones. Today marks the day that I made lifelong commitments and promises and said “I do” the most incredible man I know. This one’s for you babe! I know that it’s often said that “all the good guys are gone” but I have living proof that they aren’t. He can’t spin spider webs from his finger tips, he doesn’t have an indestructible shield that can be used as a weapon and he doesn’t suddenly swell up, turn green and become a humanoid monster but he IS a superhero in my eyes.

Jonathan, first impressed me as a man almost ten years ago when we first met. He was so kind and gentle. He was smart but he knew how to be goofy and make me laugh. He was strong but soft and sweet. He was hard-working but knew how to have fun. He was focused and driven but spontaneous enough to be balanced. He treated me like a Queen but stole my heart when he treated my baby girl like a princess and that was just the beginning.

During the last nine years of marriage, I have seen him spin spider web upon spider web and protect countless little details of everyday life from slipping through the cracks. He has sprinted across a room to protect one of our babies from falling and getting hurt when my back was turned. He has thrown his invisible shield into the air to protect our family not from explosives or firearms but from overflowing toilets, fire ants, and scary things that go bump in the night. No, he can’t tear down buildings by bumping his fists together but he knows how to superglue a favorite figurine back together because a baby brother threw it on the floor or

let somebody help with the simple every day tasks so that they can feel important and he will stand toe to toe up against whatever person , place, or thing he thinks is up against one of our kiddos. Ironically, it isn’t any of these things that make him a superhero to me. Instead, it’s his willingness to give of himself so freely for the betterment of the rest of us. He frequently pushes through and goes to work sick or exhausted. He has abandoned “ a night out with the guys” for family movie night on the couch which usually involves one or both of us cleaning up a spilled drink and very often times vomit and then sometime halfway through the movie he wakes each one of us and gets us tucked in to our beds. He gave up his love of a bowling night for a night of karate

and soccer practice with a team full of six year old little boys. He has not only accepted my baby girl but loves her like his own and even more incredibly realized without coaxing or hesitation that loving her meant accepting her Dad as a part of lives. He has done laundry, lunches, listened and loved our other two kiddos for days at a time while I’ve been in the hospital with Lydon. He has cleaned muddy tennis shoes, ironed, grocery shopped and cooked a meal countless times. He sends me flowers, gift cards for massages or manicures and tries incessantly to convince me I’m the most beautiful girl in the world!

I’m sure that none of these things sound like super powers and I know that they won’t land him a mega movie deal in Hollywood but this I know…. He is a superhero to me! He is with me at every turn. He is strong when I am weak. He lifts me up when I’m down. He lets me cry when I need to cry and when he feels weak and needs to cry he is man enough to gently take my hand and bow his head and ask the biggest superhero of all to renew his strength. Thank you Jono for who you are and ALL that you do. I love you, admire you and respect you as a man, a father and the most incredible husband. Thank you for being my Spiderman, Superman, Hulk, Captain America….my very own Avenger. Without you, I certainly could not do it all! Nine incredible years of marriage….I wouldn’t change one minute of it. Happy Anniversary Babe!! I love you….always and forever!!

A quick update

I'm sorry it has taken me so long to update the blog. We have been busy, busy, busy! Most importantly, Lydon turned three!!! I will do my best to post a "birthday blog" with some pictures soon. Medically, Lydon is doing great! We weaned off of the TPN totally. Slowly but surely we have gotten his tube feedings to a rate that he is tolerating very well and the docs are happy. He has been able to eat and hold down more in the last several days. We had a GI follow up and his weight was UP several ounces. When our cath nurse came to change the dressing on Ly's PICC line last week, his skin was very red, warm and broken in several places. It also looked a little puffy at the insertion site. Luckily, he wasnt running any fever but after seeing his arm like that, we didnt have a good feeling about it at all. Another line infection is the last thing in the world we need to deal with considering how good things have been going the last couple of weeks. Early the next morning, I placed a call and spoke to our surgeon. She agreed with what we were feeling so the cath nurse came out later that afternoon and pulled it. So...we are line free! YAY!!! That being said, we are going to live it up and enjoy the bathtub and swimming pool to its fullest hopefully for a VERY long time. Thanks again to everyone who has prayed or placed Lydons name on a prayer list. We feel very very blessed and lucky to be where we are at this moment. A little over a month ago, the thought of being off of TPN, line free, tolerating tube feeds AND snacking on Goldfish, cookies, and apple juice seemed almost impossible yet here we are. God is so good. We are breathing a lot easier these days and feeling a lot more joy, happiness and optimism.

Most Recent Update-(with pictures)

Over the past two months, Lydon and our family have been through a very challenging and life changing experience. As many of you know, Lydon endured multiple challenges and hospitalizations, which I have tried to chronicle in detail on this blog. However, the well known saying is that "sometimes a picture is worth a thousand words." So, I would like to share with you this time in our life through our family's eyes.

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Sad but True

Yes, we are here again! We've been home exactly one week and are already back. I hate it!! Makes me mad, sad, frustrated, aggrevated, and tired! On Monday evening, I had bathed Lydon (its kinda funny to see an almost three year old in the kitchen sink but it works better to keep the dressing dry on his PICC line), dressed him, given his meds and hooked up a Ferrall bag which helps drain his tummy and keep him from being so distended and uncomfortable. We were all in the boys room at the time... I was dressing Ly and cleaning his GJ site, Jono was getting Aidan ready for bed and Hollie was standing there observing us all. I stood him up to pull up his pants and out came the tube with the balloon intact! We all revolted with a loud "Ooooh NO"!!! Poor babies....Lydon and Aidan both started crying, and then the sadest part...My sweet Lydon started apologizing with his tiny little voice and pouty lips, "I saw-wee Mommy". Of course, I grabbed him and hugged him and told him it was ok and wasnt his fault. Sissy took over while I went and grabbed a G-button from our travel bag and put back in so we could hold the stoma open over night. This was probably the one moment in time where I was thankful for our TPN because it saved us having to run to the ER. With Lydon's current GI and metabolic issues, we would've had to immediately go in because he cant handle enough milk in his stomach to nourish and adequately hydrate him. So, all was well after that. Everyone slept and we went in to our GI appointment the next morning. I met with the GI docs in clinic and literally begged them to let us increase our TPN rate and stay home until we could get on the IR schedule to change out the tube. I did not win. ;( They felt it was best for Lydon to be inpatient and try to get the tube fixed that way. They gave me admission orders and after I took our nurse home, we headed back up here. I was so sad to be coming back but thankful that at least we didnt have to go through the ER. As of this moment, I have not heard from GI. The pedi team tells me that they are working with IR to try and see if they can get a non balloon GJ tube and will insert that tomorrow morning as opposed to the same type of GJ which is held in place by an inflatable balloon. Please pray that this will work out...that we can get this new tube without general anesthesia and be heading back home tomorrow afternoon. We are pleading with the team to get this done and get us out of here before Friday. This is not where we want to spend Easter weekend. Thanks for the prayers, love and concern.

Update 9, 10...the end!

Yes, "the end" of this hospital stay! Hopefully this will be the last one for a very long time! We finally made it home late Monday night. We had a great team of people who worked really hard to get us home and spare us even just one more nights stay at the Herm. Thank you Paw Paw, Poppy, and Daddy who stayed up till after midnight to get a second refrigerator set up for the large supply of meds and fluids that are needed each day. We are thrilled to finally be back home but we are both unbelievably exhausted!! Its a tight tedious schedule around the clock with all the meds and fluids but we are getting it done. We both slept until almost 11 this morning. We are slowly getting things back in order. Thankfully, we have a few wonderful friends and family memebers who have offered and brought dinner the last couple nights. We have labs to draw and a dressing change tomorrow, plus a couple of follow up appointments early next week. Oh, and we've cancelled Lydons heart cath that was scheduled next week. He needs some more time to get past all of this. Slow and steady... but we'll make it!

Update 8

Well, sure am glad i didnt hold my breath for a Friday discharge because we are still here! I didnt have much faith in everything being pulled together by then. Nevertheless, things are looking pretty promising for Monday. We are still on a significant amount of TPN but we were able to drop it down to 18 hours a day instead of 24 so that gives us some wiggle room during the day for him to not be connected to that and have a little more freedom. We are still crossing our fingers and praying that things will still turnaround GI wise and this whole TPN issue ia still very short lived. Regardless, we are anxious to be home and get back in to a "normal" routine whatever that is! ;)

Update 7: A busy day!

Yes, we are still here! I'll try to condense the last few days as much possible without leaving out too many details. Last Sunday, Lydon was looking better. Our team acted very quickly in contacting Dr.P who ordered the antibiotics and other meds to get Lydons fever down and keep him comfortable. So by Sunday, he had already had meds on board for 24 hours. Monday was a pretty quiet day. We made some progress with his J-tube feeds so that was encouraging. By Tuesday though his labs weren't looking so hot. His white count was way too low and his cultures were still positive even though we had increased his dose of the Vancomycin more than once. He was Neutropenic meaning that he didnt have enough white blood cells in his body to fight infection or bacteria. Yuck! This meant that everybody had to wear gowns and masks in order to protect him from getting anything else. We also got the sensitivity to the bug that was growing from his central line and decided to switch his antibiotics. Later that afternoon, his central line stopped flusing and giving back blood. Yuck, Yuck! Nobody was happy about this but we all agreed it was best to pull the line. I was so nervous and afraid that this would send us back to PICU but I was wrong and so happy I was. The procedure was able to be done in Interventional Radiology with conscious sedation and no intubation. He was very very sleepy from all the drugs and we had to spend a couple of hours in the recovery room but we avoided the PICU so that was just fine with us. I was so happy that he seemed to be doing so good in recovery that it was a while after we had been sitting waiting for him to wake up when I realized they had put in a single lumen PICC line instead of a double. I was so upset and felt like a big fat failure for not making sure that everyone involved knew the specifics. Having a single lumen line means that we have to disconnect TPN and lipids and break the sterility of the line everytime we give one of his antibiotics instead of having one line for the TPN and one for everything else. He had a double lumen central line when he went in so I just assumed (stupid me!) that the line would be replaced with a double lumen. Anyway, whats done is done and there certainly wasn't anything that could be done about it at that point. This line will get us by for now and we skated past PICU right up to our regular room so I figured I can't complain too much. Well, that wasn't until about an hour after we got to our room and Ly's pump started alarming. I went over to look at it to see what the problem was when I saw that his whole bag of lipids was empty! His lipids are infused over 18 hours and it was full when they restarted it in the recovery room. I panicked for a minute but we quickly checked his blood sugar and started running some extra fluids. Luckily, lipids are basically just a bag of fatty acids so there isn't anything in the bag to throw him off metabolically. We joked that he got a McDonalds value meal supersized! ;) We checked his triglycerides this evening and they were nearly triple what they had been but we are still running extra fluids so he should be ok. As of tonight, we havent made any progress with his feeds. There is a rumor that if we have a negative blood culture today and tomorrow and no fever in the mean time, we may possibly be able to go home Friday! I'm not holding my breath but man that sounds good! It will be busy with managing all of the fluids and med schedules but we all want our boy home! I'm terrible about posting pictures when I'm here, but I will try to post some tomorrow. My sweet family has pulled together a memory foam pad for the window seat where I am sleeping, a mask to block out the light and ear plugs for all of the noise....Lets hope for a peaceful, restful night. I'm anxious to try it out!! ;)

3/2/12 Admission-Update 5/6

So obviously i am updating every two to three days. I wish i could update every day but sometimes it just isnt possible. Regardless, heres the latest. Friday after Lydons testing was done, we took him down to IR for them to replace his feeding tube. It was horrible for him and us (like bang your head in the wall and cry with him) but it only took a few minutes and we got it back in without any anesthesia. In our world, that is success! After that, luckily all went smoothly and we were transferred back to Hermann. All was well, Friday night and Saturday for the most part. Let me stop here and say how greatful,thankfull, and appreciative we are to all of Lydons grandparents. Mimi and Grandbuddy, Paw Paw and Grandmommy, and Nanny and Poppy have ALL pitched in and helped us immensely but this weekend they made it possible for me to me home Friday and Saturday night. It was so nice to eat some decent food and sleep in my own bed. Anyway, Saturday afternoon, they started running some of Lydons milk back thru his feeding tube. He seemd to be doing great, even pretending to be a lil monkey and hanging on the crib! ;) But shortly there after, he started running fever. They gave him Motrin but within a couple of hours, it was steadily climbing to nearly 103. The team called our Immunologist and they decided to get blood and urine cultures and preemptively start antibiotics. Not fun!! :((
So, what we know now is that Lydon has an infection im his blood. We think it is probably from the central line itself but we wont know for sure for another day or so. The good news is we started the antibiotics really quickly and today, his fever has already started trending downward. We also got the results of the manometry from TCH. His stomach muscles and intestinal motility is not that bad. Our problem is his nerves. The signals are not doing their job adequately in telling his stomach and intestines what to do. So, this causes his poor GI function. He did respond to one medication but it can only be given by injection or iv. We are working on getting this med on board and figuring out the best way to give it. We hope this makes a big difference. Otherwise, aat least some amount of TPN seems inevitable. I am trying to wrap my brain around how we adjust our lives to this major change. Schedules will have to be adjusted, labs drawn and results checked...heck, my refrigerator will have to be rearranged, that alone is major! TPN comes in big bags with smaller bags of vitamins and supplements that have to be mixed. Each complete bag cost approx 1,000 and you receive tpn for a week and it must be kept refrigerated. At $7,000 a pop, I dont think our semi cool fridge in the garage is gonna cut it! Lots and lots to think about. For now, we are stuck here at least another 5-7 days until we can get the infection cleared and get his port placed.

3/2/12 Admissio-Update 3/4

Sorry i didnt get to update as soon as I wouldve liked. Its been a busy few days. Over the last several days, weve tried extremely hard to get Lydon GI system to accept the tube feeds but he has not cooperated. Basically whatever we put in his j tube is coming out his g tube. His output is often more than what goes in.
Lots of calls and arrangements were made and ultimately we were transferred to Texas Childrens hospital to have a special test done on his GI system called manometry. Today we will go down to Interventional Radiilogy and they try to place the probe thru his intestines. Tomorrow (Friday), they will perform the test which takes approx 8 hours with NO sedation. God help us! After the test, they will replace his feeding tube (it had to be removed so the probe could be placed) and we will be transferred back to Hermann for a couple more days. We are glad we are getting this done but we are so tired of being in patient. Being on TPN is not what we want but being home is and we are willing to make that happen regardless of what we have to do in order to achieve that. If that means going home on TPN, then so be it. We are really praying for some answers...the ambulance ride itself was traumatic enough to say nothing of the 14 days weve already been in patient. Please bind with us in prayer and belief that this testing will lend us the information we need to know how to best take care of and move forward with Lydons GI issues.

03/02/12 Admission--Update #2

It is nearly midnight but I am trying my best to keep things updated for those that are keeping up Lydon. We have not gained any ground with his tube feedings. We've not even been able to make it up to half of our regular rate and that's just Pedialyte not his usual formula. His stomach just keeps putting out more than what we are able to put in. So, we are obviously still on the TPN (Total Parental Nutrition). TPN is basically total nutrition that is infused through his central line. We are trying very hard to make progress with the tube feedings. We are going back and forth with turning the Pedialyte off and on and turning the rate up and down. We do NOT want to go home on TPN. TPN is very hard on your liver and Lydon's liver enzymes have been climbing steadily over the last year anyway. Hopefully things turn around with this issue really really soon! Our GI doc is trying to arrange things with one of the GI docs at Texas Childrens to get Lydon in to do a manometry test. This would tell us what Lydon GI issues stem from whether it be gastric emptying, intestinal motility or nerve issues. I wish this would happen sooner than later but it will probably be at least a month before we get in. As far as the trachea infection goes, Lydon seems to be doing well airway wise. However, his culture did grow Psuedomonas. YUCK!! As if that wasnt enough, it also started growing Staph just two nights ago. So, we are definitely staying here on IV antibiotics for that issue alone for another 4-5 days. We enjoyed a lot of visitors this weekend. It definitely helped break up the long days. I will try to update again tomorrow after we talk to all of the docs again.

A quick hospital update

We were finally able to get Lydon extubated late Tuesday. YAY!!! He did well. He did have some of his usual stridor but did a great job breathing on his own with just some supplemental O2. His culture from his trachea produced gram positive rods. We are still waiting to see if an isolated bug grows out of it. We are treating him regardless with IV antibiotics for the next 7-10 days. We've tried to start his feeds back but everytime we give anything through his g or j tube he cries and ends up vomiting. So the decision was made today to start TPN. We are going to start pedialyte through his j tube at the same time along with a gastric emptying med in hopes of being off the TPN very quickly. Hopefully his tummy will remember what it is suppose to do and quit being so lazy!! That's about it for now... Lydon is still feeling pretty crummy. Doing a lot of laying around and not yet strong enough to get out bed or even sit up and play. Time and patience we have plenty of at this point. We are just happy to see Lydon breathing on his own and blinking those beautiful blue eyes at us. :-)

What's going on?

Where do i begin? First, I will tell you that we are in PICU on a ventilator and have been since Saturday. Lydon is being treated right now for possible tracheitis with IV antibiotics but we hope we can get him off the vent later today. Now, for what brought us here...basically, sometime last week we started noticing that Lydon was acting like his tube was bothering him. He was a real grouch all week. Then on Thursday, he really gave the nurse a hard time about connecting the extension to give his meds. That evening after his night feeds were running, his pump kept going off. Then on Friday morning, he complained again that his tube hurt and when I checked for placement of his j tube, I got back stomach contents. So,sadly, up to the ER we went. We waited for several hours but we finally got to xray and sure enough the tube was not just sitting in his stomach but actually coiled upwards. So we got in a room and started making plans to replace it. Our big concern as always was his airway and of late our access issues or lack there of. So we went down around noon on Saturday and felt very lucky to greeted by a very wonderful and understanding surgeon and anesthesiologist. They gave us much reassurance and peace and told us they should be done in about an hour. Three hours later, our awesome surgeon come out shaking her head at us. She had to position and place his tube four times before she could get it down in position where it would stay. During the process, he required 40% more anesthesia than he had previously. Then while they were sure he was totally under anesthesia, he turned his head, coughed, and spit out the intubation tube!! Anesthesia said it was very difficult to even bag him and they were afraid he was so swollen that they may not even be able to get another tube back in. SCARE-REEEEY!! Thankfully they did and all was well back up in the PICU. Later that evening, they started trying to wean him from the vent but we just werent able to do so. Everytime we made progress, he would beome acidotic and need the extra help again. We finally decided it would be best for ENT to go back to the OR to take a look and reevaluate his airway. We did that and eveything looked pretty normal. The doctor felt that his issues were more neuromuscular and not so much structural. We will continue to follow and investigate this issue. As of this moment, Lydon is still requiring the ventilator but we are working hard to wean him off today. Furtherqmore,since they encountered so much trouble in the OR, there is talk of possibly changing out his gj tube for a straight g and straight j and placing some more permanent access in the near future. For now, we are hoping for a good day with lots of progress! :)

Update

Quick update Lydons j tube has migrated back into his tummy. Weve been here since yesterday trying to figure out a plan. We at this point have not been able to get access. The plan is to put in a line and then replace his tube sometime this morning. Hopefully that will happen. We are of course exhausted but hoping and praying for the best.

Honest Emotions

There's really not a lot to say.... Nothing new to update with Lydon. He has done well since starting on the beta blocker. He had a good weekend spending some time with my mom and his "Paw-paws". As long as he is watching movies, playing with one of our phones, reading books, or playing calmly in the house all is well but as soon as he exerts any activity the symptoms reappear. Tonight after I got home, the weather was great. Not hot, not cold, not windy so I took him out in the garage hoping he could play for a little bit. He did play but after just a few minutes he started looking dusky around his mouth and the corners of his lips were blue. I let him keep playing on his car and horse until he got short of breath and then we came inside. I heard from the ENT scheduler today and it looks like Ly's procedure is a go for the first week of April. Unless something changes, our ENT's partner is going to look at Lydon's airway and then when he is done, they will start the cardiac procedure. I am trying really hard to stay upbeat and positive but it seems harder than ever. I hate the waiting and the unknown....I hate not knowing what to expect and whether or not this is going to fix Lydon's issues. I hate not knowing if these newly diagnosed issues are even what's causing his problems or is it disease process and no amount of medicine or highly skilled surgeon in the world could fix it! I guess time will tell. We are holding on tight to the prayers of others and what strength and faith we have. Somedays it feels like there isn't any left but then we get a silly grin or a sweet smile and our empty tanks are suddenly refilled.

Ly-Ly's Heart

I've written and re written this post several times over the last couple of weeks. It seems a little ridiculous to say that we've had a lot going on with our boy. Ever since his cold and ear infection a couple of weeks ago, he has become increasingly more symptomatic with activity. We started noticing these episodes right before our Cardiology appointment back in January. But since then, we've watched his heart rate be very irregular...up, down and all around. Additionally, he has seemed to have very little endurance and become increasingly short of breath, pale and cyanotic-(blue lips or duskyness around the mouth). Over the weekend, we took him to a near by bounce house for one of our good friends little boys birthday. We allowed him to bounce for just a minute or two and then Hollie took him down the slide. Apparently, that was more than he could handle even with oxygen. He was extremely short of breath, he was super pale, his lips were almost purple and he started gagging and vomitted. Events like this have started happening several times a day. I called the Cardiology nurse and we saw the doctor Wednesday morning. He told us his Holter Monitor results showed that he is chronically tachycardic or has a constant high heart rate. He gave us an order to start him on Propranolol which is a beta blocker. Our hope is that this new medicine will take some of the stress off of his heart so that he can enjoy a little bit more activity without having to pay for it! Finally we talked about his PFO or the hole in his heart. Because he has recently become so symptomatic, and has so many different things going on, we decided the best thing was to schedule the procedure to potentially close his PFO. We've tenatively scheduled it for the first week of April but that may change because we are trying to coordinate this with ENT since they want to look at and reassess his airway again. So far, he's done good with the new medicine and hasn't experienced any side effects. Our hope is that the procedure along with the new meds will make a big difference with his everyday excercise intolerance and endurance level. Otherwise, we are faced with the possibility of this just being disease process. Obviously, this is NOT where we want to be. Our Cardio's advice was to "not get your hopes up" or "expect too much". We should know more about a definite date for his surgery after next week. For now, we are doing our best to remain optimistic.

Update

This will be short and to the point. We ended up in the ER and admitted last week. Lydon had a horrible ear infection that ended up perforated before we could get it treated despite our very best efforts. He was exhausted before the admission and still is. This started out as "just a cold" but it was draining to him. It wasn't easy for Mommy or Daddy either; we are so tired of seeing him being poked and proded over and over again for something as simple as "a cold". We are discussing our options for possibly getting some more permanent access. This is a huge decision and not one we want to make but we hate seeing the pain and suffering Lydon goes through with every admission. For now,we are home, he is still feeling bad and full of cold symptoms but hopefully he will continue to get better this week without another admission. We have an appointment with Orthopedics tomorrow morning for evaluation of his walking and balance issues. We have follow-up appointments with all of his specialists in February and March. Stay tuned!

Two little boys and an ER run.

Lydon started feeling bad on Sunday. He seemed to just be a little "under the weather". I wasn't too worried and enjoyed cuddling with him in the recliner several times throughout the day. I guess big brother was jealous because he came home Monday from school and pulled his own stunt! He was outside playing with all of the neighborhood kids. They had pulled out the entire transportation fleet from our garage. Aidan decided to play fireman. So he drove our "firetruck" aka a little tykes cozy coupe car and his little girlfriend from down the street was his "engine." So she was pushing him as he was "driving" down the sidewalk. All was well until the front wheel caught some uneven concrete and out went the fireman onto the concrete, flat on his face! I got ice packs and gave lots of mommy sugar (all the while still cooking dinner and coddling Lydon) but I quickly realized that wasn't working out too well when he suddenly got very very sleepy, barely responsive and vomitted all over the floor! Can you say SCARE-REEEEE?? So, off to the ER we went!! Lots of prayers went up and by the time they started talking about IV's and CT scans, he woke up and started talking to us. We laughed at the coincidence but we had seen him be so sick and lifeless up until that point that we were grateful for the improvement. His CT looked ok and by that point I had talked to my mom who informed me that Lydon was miserable. So we got the discharge papers and they told us they'd save a bed for us if we needed to bring Ly in. Luckily we made it through what was left of the rest of the night. The bad part was that I couldn't get an appointment for him to be seen anywhere Tuesday and I was pretty concerned since he had been sick since Sunday. Coughing a yucky cough, mixed with a little stridor. Lots of mucus and a runny nose. He's been very gaggy and has complained of an ear ache. So far, we have held our breath own here at home. Hopefully we can stay home and he can manage this on his own but that's the problem with this disease. When he is sick and fighting something even this "simple", his body is pulling energy from another organ system that needs it just as much. We can see that be evident with his decreased energy and increased tummy drainage. If we do ok through the night, we will go into the sick clinic and hopefully not the ER tomorrow. For now, we cross our fingers and say our prayers!

Cardiology Appointment

So, like I've mentioned before in a couple of my previous posts, our appointment with the special cardiologist was today. We have known for some time that Lydon had some dysautonomia. He has always had problems maintaining his body temperature. It fluctuates as does his blood pressure, heart rate , appetite, energy level etc. But lately, we've noticed that with temperature changes or excercise, Lydon becomes short of breath and his lips turn blue. This obviously is not normal for a two year old. It was a very involved appointment. We arrived about 8:45 and left at 2:00!!! We were physically (and emotionally) exhausted! While we were there, Lydon had an EKG and an Echo done. He was such a trooper!! Poor guy was so worn out and happy to get a bottle he layed perfectly still for the echo without any sedative. So although it was exhuasting, we may have gotten some key clues for some of Lydon's issues. His EKG showed some variables that are common to mitochondrial disease. The ECHO showed a PFO. A PFO or Patent Foramen Ovale is a hole between the left and right atria. Everyone has this while in the womb but it is suppose to close shortly after birth. About 25% of the time, this hole doesnt close but it generally doesnt cause any problems or symptoms at all. However, in mito patients the stress that this puts on the body is much more profound and obvious. There is also a risk of oxygenated blood mixing with deoxygenated blood. This process called left to right shunting also increases the risk of a stroke. So because of all of Lydon's symptoms and the new findings on these tests run today, we brought Lydon home with a Holter monitor. This will monitor the activity of his heart for the next 48 hours. After this is complete, we will follow up with the doc and come up with a treatment plan. At that point, we will decide whether or not we will close the PFO. Needless to say, this appointment, like many of them lately, was a little overwhelming. Sometimes ignorance is bliss, sometimes knowledge is power.

For those of you who know us well and are intereted, Jonathan's MRI is scheduled for Friday morning. We are hoping this doesnt reveal anything worse than what we already know and that we will have results by Monday so that we can proceed with getting a biopsy done asap. Please pray that all of this will work out this way. Thanks so much!

A brief update

Last week, Lydon's tummy decided to act up. I should've known better because it had already been almost 90 days since our last admission...he's still sort of rocking along in trimesters. Somebody please send him the memo his 3rd birthday is in April!! Any way, he would act good during day, eating drinking and taking his formula like normal but every night after the first couple of hours on his feeding pump, he would wake up vomiting. So after the third night, we ended up in the ER. We were concerned that his tube was out of place again or he could possibly have an obstruction. We got there and they brought us right back and started the work up. They did all of his labs and an x ray of his belly. We were there for almost six hours before they finally gave us the all clear and let us go up for the EEG we had scheduled. Getting all 21 leads glued to his head was worse than sitting in the ER for six hours if you can imagine that! But finally, we got it done. He relaxed but still didnt want to eat anything besides a bite of cracker here and there. He was so exhuasted from all of the fighting that he slept pretty good that night. What a blessing that was!! I was exhausted! He didnt eat more than a few morsels of a cheese cracker all day Saturday and Sunday but he was doing a lot better. Today, he had a great day! He ate a tone of food. I was happpy that he ate and got to play with Mandy (one of his nurses)today. He was happy too!I had only been home for about 45 minutes when as I was heating up food for Holli and Aidan when he gagged and covered my kitchen floor with vomit. So, here we go again...who knows?! Tomorrow we have an appt with a special cardiologst. Wish us luck! ~Jana~