Survival of a year Celebration! Shane turns ONE!

  We have had quite a year in the Cox household and we are definitely celebrating! Although Shane's offical birthday isn't until December 19th. We are celebrating it the saturday before. Tons of Aunts and Uncles cousins and Grandparents were able to attend. We played Pin the patch on the heart, and dice game. Ate lots of pizza and salad. Then of course Shane was able to open up his presents. What a spoiled but brave warrior to deserve this. It was a great  special time we could reminisce on the heart aches of the year, but celebrate that we still had Shane with us and that is truly something to celebrate. We had all made it a year and the angels above sang. 
 
Luke 1:37 37 For with God nothing shall be impossible

 

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Ent/ Helmet visit

Today we made our journey once again to Primary’s for our check up with Shane ENT( ears nose throat doctor) we also visited his helmet doctor don’t know what they are called.

                At the ENT they put a scope down his nose to check vocal area / airways and well there had been no improvement in his left paralyzed vocal chord and his larynx was still red and swollen. The doctor is happy that he is not getting   Pneumonia or spitting up so the swollen larynx is kind of puzzling and obviously the acid reflux meds he is on are not working as well, although he needs to continue taking it. The doctor wanted to see more improvement after 7 months of healing from his open heart surgery. So in January will will see a different   surgical specialist that will decided if surgery is needed to repair his vocal  chord.  As I heard it they will connect a nerve from Tongue to vocal chord ?Of course we don’t want this and we will ask all the questions we want if it comes to that point but it’s hard to judge at that point a Year old what his voice/ speech outcome will be with surgery. Not to mention the after affects. We will cross that bridge when it comes and once again this is not life threatening so we can handle it!

                Next we went to go get Shane’s head checked out to see his helmet shaping progress. His head is making improvements but 4 more weeks or more is still needed before the helmet comes off. I’m really fine with that seeing as it does not bother him or me.

                Finally after our adventures in salt lake we ventured to my ob for those who didn’t know we are expecting our 2^nd child and we found out IT’S A BOY ! Nathan just grinned and smiled . I’m still in denial that we are having another baby but as I’m starting to show a little, it will  soon hit me.  I’ am  grateful though the lord decided to send another bundle our way and we hope he is healthier than Shane.

            So I guess now we need to pray for  Shane’s throat and vocal chords seeing as the lord has healed his heart well let’s have a throat /voice miracle too.I also attached some very current pictures of shane will helmet on and off.

Love,

Emily

A surprise Baby!

After all we went through and are still going through I would like to announce we are pregnant. This was not planned and I'm very much in denial but I"m pregant with another precious child.

Went to the ob today I'm just barely 7 weeks so my due date is 4/4/2013 . Sad that I'm not further along for sickness but good because Shane will be a couple weeks older now. I haven't been nearly as sick with Shane though but usually sickest in morning and could take naps all day long!:) I just pray every night that I will have strength to take care of Shane. So that's the news with us.

Love,
Emily
Ps. I heard the babies heart beat today and they will do a specialist at 24 weeks.

ENT and Helmet fitting

We took our journey once again to Primary's today and met once again with our Ent (ears,nose,throat) doctor to check up on Shane's Paralyzed left vocal chord and swollen larynx. He scoped Shane which he did not like and I don't blame him. He said that his left vocal chord is still not 100 % which shocked me because Shane is a TON louder than the kitten of a sound he used to make after his open heart. So this makes me wonder how loud would he be with all of his vocal chords non paralyzed! lol Our doctor said it may never come back but will keep checking up on him. As far as his reflux he will continue to take that medicine because our doctor still see the need and they will evaluate Shane in 3 months. Our Ent also mentioned once again about Shane's "floopy airway" because shane is a noisy breather, he used the analogy of opening and closing your index finger and middle finger together and Shane's airway only opens as if only his index finger opened and shut. If that makes sense. He says that as long as his sats are always good and dosen't turn blue than he should be fine with that. 

  After the Ent we went to go get Shane's head fitted for a helmet. They put shane on a laser machine to scan his head.We should get the helmet on the 30th of July and he will need to wear it 3 + months.  Its nice that our visits to Primary's are getting farther and farther apart. It will be nice to when its once a year!

Heart doctor appointment

Just got back from seeing shane's heart doctor. He was 18lbs 9 oz and 28inches long. They did an Echo and EKG all came back with normal heart function. The doctor said that his left ventricle that wasn't pumping well was pumping as normal as the other good ventricle. Our doctor said " YOu weren't on the transplant list right? because if you are we need to take you off!" lol I said no were weren't but close to it! Shane is now off his medicines and I continue to feel my Heavenly fathers glorious hand in blessing my little ones heart. I'm so blessed and grateful for his love for our little family! I know this has not come with out the many fasts and prayers of everyone! Thank you all!

shane scare

After a crazy scary day i have finally emerged from being up till 4am. Shane had a high fever yesterday and was puking his food took him to pediatrician and they said it could be several things his throat was sore  his inner  ears were red and on his x ray showed slight fluid in lungs. So to be safe they wanted us to go get blood work done at Mckay dee. When they got blood work back it was showing signs of an infection. Due to Shanes past of course they wanted to be safe ad we went to primarys.@ Primary's they did more blood work, an iv, x -rays, checked his urine. All came back good no pneumonia  and the blood work actually had fewer signs of infection not to mention his fever went down. So they said they were thinking of keeping us for the night when they got the first blood wk but  Shane with the help of a lords blessing and many prayers came home  as exhausted as his parents, with no fever and less signs of infection. They have Shane's blood cultures to that they will get back today and I will follow up with pediatrician.Thank you everyone for your concerns!!!

Feeding Tube

As of May 26th  Shane no longer has a feeding tube! He had consistent full bottles in a row for a couple days. So I decided it was time to take it out! The only downer is its not as easy to give him his medicine now! :) I will figure it out! His cry and voice also seems like its getting a little louder so I think his new medicine is helping! Yay!

Swallow study/ Ent visit

Today we made our journey to Primary's for two appointments. Ears nose throat specialists then swallow study.

 First We met with an ears nose throat specialists for concerns over Shane's quiet cry, noisy breathing and possible sleep apnea. They put a tube camera down to look at his vocal chords. They saw that he has a swollen larynx or Larynx Malaysia "floppy airway" that gets irritated by stomach acid and his feeding tube. So they gave him reflux medicine to see if that will help, this all causes the noisy breathing, gasping when sleeps snoring exe.. They also saw that one of his vocal chords is paralyzed on his left side which is causing the quiet cry and that is a chord that is wrapped around the aorta so his surgeries had big impact on that chord .  they say it can come back after time hopefully by the time they are a year old. If it does not come back then he will just have quiet voice but won't affect his pronunciation of words but there is a surgery to fix it if it is needed. So all of those things were nice to know. 

Second we did the swallow study to test Shane's swallow and to see if we can take his tube out. He did not aspirate on thin formula but we will need to increase the amount he eats orally  slowly to what we give him total (7) ounces  before we can take tube out. This is awesome news Give it a week or so and he will have it out! Oh and Shane weighed 18 lbs 4 ounces! He will be 5 months on the 19th.No wonder my arms have been tired! :)  once again Shane is a strong little bugger making is way finally into "normalcy". 
  

Shane day a million update :)

Just wanted to share some good news ! Today our in home health occupational therapist came by to check on Shane's  neck/ head  and his  eating to see the progress from last week. She was very impressed with the improvement of his sitting up ability  his head movement/ leaning too much to one side and the shape of his head has improved she is thinking if that continues the helmet is out of the picture! This is good news because we called the helmet people and our insurance will cover 90% of the helmet if we have been doing head stretches for 3 months when we have only been doing them since surgery. Otherwise it's $2000! So now I won't have to stress about waiting another month to get him evaluated for a helmet if she is noticing a difference in just a week. I also have been taking her advice and pacing Shane when he does eat the tiny bit he can that has also been helping. She gave us good compliments on keeping up with stretches because not all parents do! We were happy and all the hard work is paying off!  Thank you everyone for your continued prayers!

Heart appointment / Swallow Study

Today we went down to Primary's for our Post operation appointment and a Swallow study. The appointment went well Shane was very well behaved and had a good ekg and sats blood pressure all that fun stuff. We will meet again in 3 months with Dr. Everett for a Echo and check more of his heart function. They are obviously not concerned about his heart if they are doing a appointment in 3 months. So his heart is looking real good! Thats the good part! His swallow study was not so good. They tested him eating 3 different things like the earlier one , Formula with jelly stuff, half gel / Half formula and just pure formula. Well he did not aspirate on the first 2 which was a big improvement from last time but aspirated on normal formula. They want to ease his swallow into progression so we are still stuck with Shane having a feeding tube and giving him only 10 ml of thick formula. They also tried giving him baby cereal and that worked so once we decide to introduce him into cereal we can have at it. They will do another swallow study in 4 weeks. We untill that time will be working with in home speech thearapists and physical thereapists to have Shane progress in feeds as well as correcting his neck. We are greatful that his heart is doing well. We were hoping for his feeding tube out but you can't get everything you want and we are glad he has improved from last time. That is the update for now.

 

At home update of Shane After open heart surgery

Giving an at home update:
Things were rough at first adjusting to the feeding tube procedure and learning how to do it before he gets so mad because he wants to suck on a bottle.  The feeding tube goes into his nose and down to his stomach that way. I sometimes wish I had three hands but I'm getting the hang of it. I have also been pretty much a single mom since Nathan has been studying hard for a test to get his trading license which he passed today go Nathan! Shane wants to eat through bottle bad and it's sad he can only eat 10 ml of thick formula.  The good part of the feeding tube however is I can give Shane his meds and when your  giving 11 doses of medicine a day it is nice! We have a regular post surgery check up Wednesday and another swallow study to see if we can get this tube out! I think I will cry if we go home with it that day. I don't feel like it's over and we can go on with our lives till it's out. We pray every night that Shane's swallow will come back.  I have attached some pictures of his wound and  a cute smiling picture that was taking tonight. He also came in at 15 lbs 5 ounces at his rsv shot appt last Thursday so he is a big boy!  Thank you all again for your calls, visits, prayers we know we are truly loved and thought of.

Shane's Open Heart Surgery

Shane had his open heart surgery on March 28th 2012. The wait from when he came home in January till that day was a long and anxious wait! His pulmonary band was getting tighter so I was worried one day he would turn blue and cpr would do nothing because his band was blocking the oxygenated blood to his body! I felt like I could never let him cry for very long so he was a spoiled baby. Luckily he was young so he didn't know any difference. The surgery actually came quicker than we expected because he finally caught up. My husband and I are both over 6 feet tall so we were expect a bigger baby than what he was. So it was nice to see him growing and even the doctors were happy with his progress.
 For some reason this surgery even though it was a more complex and dangerous surgery was easier for me probably because I knew it was coming and I wasn't in a frantic shock life changing moment as it was the first time. This surgery was definitely longer  than the first one but we were both confident it would go well. Sure enough it went very well and when the surgeon talked with us after the surgery he told us that the tissue around his left ventricle was a healthy color and was healing itself. At that moment I knew angels had been blessing his heart and once again this was our 2nd miracle. This surgery brought a lot of difficulties that he didn't have the first time. His cry was very weak from being on the ventilator and to this day his cry has gotten better but is still very soft. He had a harder time getting off his oxygen and had several episodes of heart arrhythmia. For this reason he stayed in the ICU much longer. He also aspirated while he ate so he was placed on a feeding tube and still has one. Then Shane had his physical things also he has torticollis  and has a flat head that we are doing continuing physical therapy. So his heart is now fixed but this surgery has a longer recovery time with all of these things. I feel like its not over even though his heart is fixed there are so many other things we have had to adapt too. I'm grateful that he is a fighter and is continuing to get stronger and stronger.

These are my daily update emails that i sent my family after Shane's open heart surgery:


March 21st 2012
Well we went to primary's today to get an echo/MRI done for Shane. He had to be sedated and i was worried because he wasnt able to eat after midnight and wasn't able to have anything 3 hrs prior to app at 9. He did pretty well. He was cranky coming out of it but is good. The MRI looked at his heart and the same narrowing in his aorta they fixed the first surgery is slightly narrow again. They will fix it again in his surgery. Surgery is still in the books for Wednesday the 28 th. Not sure yet on time.  Please continue to pray for Shane.

Ps family members we would like to have Shane get a blessing before surgery whether it's a night before surgery or a couple days it doesn't matter let us know what works best. 

March 28th 2012
 They just did an echo to check the heart after the surgeon fixed the repairs and they said it looks good they are going to close his chest up now and we should hear from the surgeon within the hour.
  
Surgery is over yay! Everything went well just got done talking to surgeon. The lower hole in his heart is closed now the PA band is off and the narrowing of the aorta is fixed again. The surgeon was very impressed with his growth and also he said at the beginning the left ventricle non compaction tissue was white and he says now it's a darker color and is saying it's healing itself. The surgeon had nothing but good things to say! Everything was a successful! We still have 12-24 hr critical time. Thanks for all your prayers we will keep you updated.

March 29th 2012

Well Shane s heart rate is high today they say it's because his heart is finding a different area of heart to pump untill the area they closed is healed more.  They also have him on a little bit of pace maker to keep things in rhythm. So they will not take him off the vent till lower heart rate. So pray for lower heart rate! His blood pressure is needing to be a little higher too.

March 30th 2012

  Well Shane has made quite a turn around he is off the pace maker that was keeping his heart beat in rhythm and is now maintaining good heart Rhythm and good blood pressure. They took out one of his chest tubes and is being taking off ventilator As we speak.! So what a day did! They also took him off the medicine that was keeping him pretty sedated but are giving him morphine and tylenol for pain! Our little man is so strong and hopefully will be tons happier now! We are so happy!


March 31st 2012
Well last night Shane's heart went out of rhythm again his heart rate is high and blood pressure is high. So the plan of getting out of the icu today like they said yesterday isn't going to happen. He will be monitored for another day and if it continues they will give him medicine. ugh we want to get out of here!

Well on top of everything Shane is going to need physical therapy to help his neck movement and possible a helmet to better shape his head ugh I know those are minor but let's add it to Shane's list! 



April 1st 2012
Well we have had a busy morning! They took his other chest tube out they took his main art line out and they gave him a sedated echo. His echo came back ok. His heart function has decreased a little since before surgery a 58 to a 55. they say it just takes time. He still is on oxygen to help his heart get stronger and on a feeding tube. They will do a swallow test tomorrow to see if it's safe to feed him and hopefully he can get off his oxygen before he goes home. He hasn't had any heart arrhythmia since yesterday morning it comes and goes but they will just keep an eye on it! I hope we dont go upstairs then have to come back to icu!  The only medicines he is on is lasics to keep fluid pressure off heart and enalipril to help blood pressure/ flow and heart function. He was on all those before surgery. well that's the update for now were moving on up and hopefully will be out of here soon! Nathan is at work today so it was fun to do all those things by myself! Lol




April 2nd 2012
Well after waiting most of the day they finally did Shane's swallow study they said his swallow down to his stomach looked good but his sucking swallow coordination needed some work. So they moved his feeding tube to his stomach that was originally in his intestine and they will evaluate him eating sometime tomorrow. So another day not going home. He still is on oxygen also.  That is pretty much it for today.

>April 3rd 2012
Well They are trying to wean Shane off oxygen today and does well when he is awake but needs a little help when asleep .03 liters to be exact. Lol hardly anything. They will evaluate him feeding at 2 so we will see how that goes! Go Shane!

 well Shane did really well with his eating study and is pretty much off his oxygen. they are all still concerned about his noisy airway so they will only allow him to eat every 6 hrs or so and will evaluate him over days they said. He doesn't need a helmet at this point and said they will take a look in a month or so.

April 4th 2012
 Shane had an excellent night he is completely off his oxygen. He got his feeding tube out and is now getting oral feeds every 3 hours or on demand. Shane is still not urinating as much as they would like although his  x rays show not much fluid.  So if he urinates more today than they will let  us go home tomorrow! Yay! It has been rough spending 12 plus hours at the hospital just waiting for him to get better but I know that I want all the i s dotted and the t s crossed before he goes home.  He is our little fighter! way to go Shane! Thank you all for your continued prayers.

Well Shane has an intestinal infection called clostridium difficile luckily we caught it early and they will start anti biotics to get rid of it. They say it's common thing to get spending time in hospital he was having diarrhea all day poor guy.  Im not sure if we will be going home tomorrow now.

April 5th 2012
Looks like we will be in the hospital another night. They want to monitor his stools and make sure he is not getting dehydrated. My poor little buddy! we are going to have to take a trip home to do laundry! lol well hopefully we all will be home tomorrow!

April 6th 2012
Well it has been rough emotional  12 - 24 hrs. Or 11 days! Lol We have been told too many different things about his eating from speech therapists even though he has  passed his swallow study Tuesday they are still concerned.so they Wanted to do another one and he had feeding tube put in last night because of one persons opinion. After many tears and prayers we are leaving the hospital finally today yay! Unfortunately Shane has not gotten his swallow back and aspirates when he eats too much fluid but he dosent aspirate when he has this gel added to his formula but it takes a ton of effort to eat. So Shane can eat 10 ml through bottle of thick stuff and the rest through feeding tube!    I'm glad he is home but it disheartens me that he can't get the satisfaction through sucking. He is healthy and his diarrhea  has lessened and I have to be grateful for that. I'm glad we are home now and  on to figuring out new processes of things.

When is Surgery?

We went to see our heart doctor today, and they did the usual echo, ekg and all the normal tests. The Echo

came back good his heart function is still at 58% so that is good. The only issues now are the band that was meant to slow blood pressure through the pulmonary artery is getting tight since Shane is getting so big. They say the typical weight they would like to do surgery at is 15 pounds. Well today Shane weighed in at a whopping 13 lb and an ounce. So our doctor is going to talk with our surgeon and we could be looking at taking the band off and closing the holes in his heart possibly in a month. Whats happening now since the band is tight the blood from the right ventricle is taking the path of least resistance and is now going the opposite way back through the hole in the heart and not up the pulmonary artery. He will still remain on his blood pressure medicine Enalipril which I guess is a catch 22 because since Shane's blood pressure was  a tad high so she wants to keep him on it too keep it low. But keeping it low messes up the Pulmonary band circulation in the heart. Overall though they were way impressed with his growth and I guess are hopefully enough that his heart function can handle the closing of the hole. So I guess I have to just watch out for him turning blue or passing out until surgery! Yikes seriously thats what they said. So on to the next step! Then hopefully after this surgery we can look more into the Non compaction part of his heart (nonpumping aspect) and see if its bad enough for transplant. Well if anyone has questions you can call if any of this  does not make sense!

How everything Changed

Shane was born in December as a healthy full term baby. He made us parents and it was just the perfect timing for him to be born. Nathan had just graduated with his Bachelors and was starting a new Job in January. We had tried for a awhile for him to come to this earth and he was finally here and couldn't be more thrilled. he was in the NICU for typical  jaundice until we were both released from the hospital two days later. I laugh now because seeing my son in the NICU made me cry and knowing now how common Jaundice is. He was home for a few days, we spent Christmas together as a family and things were seeming normal. He was eating well and sleeping well. We were in heaven.

Then the day after Christmas in the afternoon he started not eating, sweating and breathing weird. On Dec 26th we were only able to feed him about an ounce that afternoon. As first time parents we knew something was wrong but we weren't sure.We also had his 7 day well check the next day. We didn't know if we should wait or not. After lots of calls to our doctors with no luck.  At about 2:00 in the morning Tuesday we went to the ER to find out what was wrong. They got Shane in right away did test after test at about 30mins-hour later they decided they needed to life flight him to Primary Children's Hospital.His temperature was 94.7 and they couldn't read a blood pressure on him. My husband and I both sobbed and within an hour 1/2 Shane could no longer breathe on his own and needed to be put on a ventilator before he could be put in helicopter. I had to look away as they were shoving tubes down my pale lifeless son. We said our goodbyes to our lifeless baby boy not knowing what was next and what the outcome would be. Everyone just kept telling us he was VERY Sick! 

After arriving at Primary's they did their tests and found out he was in cardiac arrest. Most people dont know this, but your normal heart function is around 60 when he arrived at Primary's his heart function was at a 10 very very poor. 

 At this time they diagnosed him with an ASD, VSD holes in the heart, a narrowing in the aorta and Left Ventricular  non compaction a poor squeezing ventrical. He was in the ICU for a week in a half before they decided he was strong enough to do surgery. At this time they only repaired the narrowing of the Aorta and put a Pulmonary Band on his pulmonary artery to help lessen blood flow to the body.

They were able to do this surgery through his side because both were areas they could fix out side of the heart. After a couple days after his surgery they did an echo to check his heart function. His heart function was still really poor and they said that 95 % of kids should have recovered by now and basically said he had a 5% chance of not needing a heart transplant. After several days and meeting with the whole heart  transplant team Shane kept doing better and better.

Shane was at Primary's for a total of 16 days the first time. After his release we went back again a couple weeks later for a post operation appointment. They did another echo to check his heart function and his function came back normal. We were in awe and amazed that our little son had proved the doctors wrong. Now we just needed to get Shane bigger  and stronger for his open heart surgery!