First Night of Cpap

My little elephant survived his first night of CPap last night.:) He was not happy at first and did fight us, but like the trooper he is,he fell asleep and kept it on. Now just to get Jeremy from not waking up so early then waking Shane

2nd Sleep study

  November 3rd at 8pm we arrived at Primary Childrens Hospital for our 2nd sleep study. Just a little over a year after the 1st one. Shane did really well while the techs were putting all the equipment on until the canula got put on.

He cried kept saying "I want it off!". Nathan and I tried to calm him down. We sang songs like we always do before bed. He basically cried himself to sleep that night.:( he woke up several times during the night and said he wanted it off again. They wake you up early around 

5:30 am and then you are out of there. 

After two weeks we went to Primary's again for the follow up appt to see the results of the sleep study.

After 2 hours at the appt we got our answers. 

  So based on the sleep study he has mild obstruction apnea like he did before. Good news is before tonsil/adenoids removal Shane was not breathing or a having obstruction breathing about 9 times an hour, now he is only doing this about two times an hour. So we definitely have seen improvements. His sats  drop to around 86 every time this happen. His current diagnosis though more mild than before, we worry especially with his sats dropping we don't want to stress out his heart more than it needs too already. The doctor suggested we do a cpap machine try it out for 4-6 weeks and then do another sleep study with it on to see if it's helping or adjust settings as necessary. We don't like this diagnosis, but our wonderful brave Shane just put on the mask for a fitting with no complaints at all,and the nurse says this is the first she seen with a kid not complaining about it. 

We also might have to adjust their sleeping arrangements since Shane is on top bunk.:) if this mask causes more harm to him not getting sleep needed than we will go from there or use oxygen. This journey of Shanes is hard to take sometimes, but we know these things help Shane have a better life and that's worth everything to us and we have been through so much worse. We will see cardiology and have another sleep study in January/February.

  

Sleep Study results, New Cpap Journey

  Ok here is Shane sleep study update... After 2 hours we are finally on our way back home...

So based on the sleep study he has mild obstruction apnea like he did before. Good news is before tonsil/adenoids removal Shane was not breathing or a having obstruction breathing about 9 times an hour, now he is only doing this about two times an hour. So we definitely have seen improvements. His sats drop to around 86 every time this happen. His current diagnosis though more mild than before, we worry especially with his sats dropping we don't want to stress out his heart more than it needs too already. The doctor suggested we do a cpap machine try it out for 4-6 weeks and then do another sleep study with it on to see if it's helping or adjust settings as necessary. We don't like this diagnosis, but our wonderful brave Shane just put on the mask for a fitting with no complaints at all,and the nurse says this is the first she seen with a kid not complaining about it. We also might have to adjust their sleeping arrangements since Shane is on top bunk.:) if this mask causes more harm to him not getting sleep needed than we will go from there or use oxygen. This journey of Shanes is hard to take sometimes, but we know these things help Shane have a better life and that's worth everything to us and we have been through so much worse. We will see cardiology and have another sleep study in January/February.

Happy Halloween

Hope everyone had a great Halloween! We trick or treated in my in laws neighborhood,their sub division consists of two streets. We scored some nice candy, even a tooth brush and a few large sized candy bars. 

  The boys were very happy and excited and preety much ran to every house. After about a corner and one side of the street. Shane started complaining that he was tired and wanted to stop. We tried encouraging him what we could and even offered to hold his candy bucket. He started melting down quickly as we were hitting houses, but making our way back to my in laws house. Shane hit a wall yet Jeremy kept going. I guess I should of thought to bring a stroller or wagon,but I figured they could handle two streets.

  I guess this is trick or treating with a heart baby.  We still had lots of fun though Shane would scream "trick or treat!" While Jeremy would yell "surprise!"  When people came to the door. Every day is an adventure with these two! In case you didn't guess we are Mr. And Mrs. Potatoe with our two adoptive kids ( aliens) from Toy story.:) 

2nd Sleep Study

Here we go again....Wish us luck tonight! Shane has his sleep study tonight. Hopefully we will get the answers we need so we can make the next step toward helping Shane,get the sleep he deserves. Also figure out the issue. We will all be tired tomorrow. He did preety well till they put the canula on him which was the very last thing. It took lots of singing to calm him down. He kept saying "take it off!" " take it off!". Poor guy... He finally fell asleep though.

I know its a simply sleep study,but nobody should have to endure all that this kid has already endured. What a sweet boy! 

Family update

Hello everyone,

 

   There have been many changes in the Cox household that I wanted everyone to stay in the loop with. Our first one, is one that most know,but we decided in June to move more south. We put our town home up for sale and with in a few days on the market we got an offer. We found a house in Clearfield and left our town home August 20th. It was very sad to leave an area, ward. That we had been in close to 8 years, plus leaving close friends and neighbors. 

 

  We moved into our home a cute 4 bed, 1 bath,2100 sq foot ,rambler. Has a great yard and lots of updating to do,but nothing that we had to do to move in. More cosmetic things that we will slowly do. It has a wonderful large finished family room/ play room downstairs that sold the house for us. 

 

  We are enjoying the whole hour more a day we get with Nathan and hope when his work schedule changes it will be even more time with him.

   Jeremy is 2 1/2yrs old now. He still manages to keep us on our toys with his bold and crazy two years old personality. Yet he is so goofy and sweet he melts our heart.

   Shane is 3 years old and will be 4 yrs in December. He is 45lbs and 44 inches tall he according to doctor has grown 3 inches in 2 1/2 months and 2 lbs. He just started his 2nd year of special Ed preschool at a local elementary school. His speech is progressing so much. He is starting to use 3-5 word sentences and getting better at expressing himself. He goes to preschool 4 days a week. M-Thursday for about 2 1/2 hours.  >

 Jeremy and Shane share a room now in our new home and are best friends. Every where we go people think they are twins. I feel like they are any ways!:) we will hopefully tackle the potty training for both soon.:)

  As far as Nathan and I go Nathan is still working for Fidelity investments in the annuity department. He just passed his Life insurance exam also as part of his new department requirements.
 I continue to create and maintain the Cox household. Taking care of my home and kids all day is not easy, but I wouldn't trade it for anything!

Gasping while sleeping continues

  As many previous posts have stated Shane has had many episodes of gasping  while he sleeps. We have been on reflux meds, we have seen a GI doctor and our continued ENT doctor. Shane has gotten his tonsils and adenoids out and during this procedure his left paralyzed vocal cord was injected to help keep it more closed.

   After Shane's tonsil removal his gasping episodes had stopped,his nasally voice and breathing  had stopped. Shane was able to drink fluids and eat without coughing every time. We were very hopeful that these things were gone that we would be able to check lots off doctors off our list. 

  Then one evening our hopes were dismissed when we heard once again the dreaded gasping noise coming from Shane's room while asleep. We went in there and he was sitting straight up in his bed awake like many of the times before. 

We knew his vocal cord injection lasted only a certain amount of time so we were thinking this was the cause of the sudden gasping episodes again.

  We scheduled an appointment right away with his ENT down at Primary children's hospital. We discussed our concerns with the doctor and he explained that adenoids could grow back so this could be the reason for the gasping, but that the vocal cord injection was not the reason why he would be gasping again. Shane went through the not so fun time of being scoped like so many times before.this never gets easier for mom or Shane. We hold Shane down and he screams the whole time they stick a tube down his nose to look down at his vocal chord and adenoids. The doctor said the adenoids had not grown back so that was a good thing. He also said that his paralyzed vocal cord looked good and had preety much healed where it was going to. his voice volume was well and his food/ fluid coughing episodes had subsided so he wouldn't need surgery on his vocal cord, which was wonderful news.  This however, didn't answer our questions about why he is gasping again? 

  Our doctor referred us to the sleep clinic again to get another sleep study and hopefully get some answers. We basically said goodbye to our ENT since he said not much of a reason to see Shane again unless sleep study doctors wanted him too. So we will call sleep clinic Monday and go from there. 

First camping trip with a heart kid

  Well due to many things obviously in the past 3 1/2 years with Shane and having another child just 15 m apart we had not had a chance to go camping. Well the time finally came where we were in charge of the Cox side family reunion. We chose camping at Bear Lake. Shane and Jeremy had a blast throwing rocks, playing in dirt, digging in the sand, playing in the water at the beach and playing with their cousins.

  The weather was murky, it only got to be maybe a high of 70 the whole time we were there and nights were in low 50s or high 40s at night. We made sure the boys were in very warm Jammie's and in sleeping bags. The boys kept warm at night, but once we got out of the tent every morning  it was a whole different story. We put their jackets on over their Jammie's and their shoes on. Sat them y the fire under a blanket.  One morning Shane looked like a mix of purple and blue all over his face and his hands.he was freezing  shaking and not warming up!

  We put several blankets on him and got closer to the fire as we sat hoping we would see normal colors soon. It took a while, but he finally turned normal colors again got up and continued to play with his cousins. This was our first time camping with a heart baby and it won't be our last we will just have to remember that Shane needs a little more wants in the mornings.

Our "normal" trip to the zoo

  Every Saturday we try to do an activity together as a family. Thankfully my husband has weekends off and since we don't see him much during the week we are grateful for this time together. We had never been to the local zoo here yet with the boys and we had a coupon of course, so we decided to go. 

  We got there right when it opened,it was a beautiful day. We got started walking. We brought a double stroller for the boys just in case the zoo was too much. Immediately my boys wanted out of the stroller and walked to the exhibits all on their own.  They loved seeing the animals and being out in a new environment was an adventure for them.

  As we continued exploring the zoo and going from exhibit to exhibit I couldn't help notice something. My 3yr old Shane who has heart defects, wanted to take breaks and ride in the stroller. I probably wouldn't of thought twice about this if he was the only child . His 2yr old brother wasn't slowing down at all. When I offered the stroller to him when Shane would get in Jeremy refused. Jeremy has a healthy heart. He didn't stop once wanting the stroller till the very end when nap time over took him.

  Of course I knew Shane had heart defects. We suffered with hospital visits and surgeries his first year of life. I always knew he gets a little more fatigued running around our house. SO why did Shane's frequent need to sit in the stroller surprise me so much? I guess it's because as the appointments get few and far between I "forget"? I also see him as a young boy now and not a baby who's activity level is quite different now! As Shane grows his precious heart is taking on more and I'm learning his new "normal" activity level. 

  These moments In life I want to be "normal" and for the most part they are. It's just a reminder once again of my sons fight with CHD in infancy and daily with every heart beat he takes. I hate being reminded of more open heart surgeries to come and think of the pain he will be in, the caution in his daily activities he will need to take. I'm grateful his condition is "fixable" and that he will continue on and be with us as long as he is monitored by doctors. Shane will always be behind his younger brother in energy level, but that doesn't mean he can't just take a break and continue on like Shane does. We still had a great time at the zoo no stroller ride will stop that. I will soak up these times as much as I can. I love being these boys mom.

Emily😃

Spreading awareness for CHD (congenital heart defects)

  If you are Facebook friends with me you know about this week. February 7-14th is Congenital Heart Defects Awareness week.February along with Black History month is also Heart month. As we talk about love and see hearts all around us we are reminded of Hearts and some are broken ones. As
seen in previous posts my son was born with several heart defects and still fights CHD with every heart beat he takes. This is something that was unknowingly thrown into my life with a newborn. So this is something I'm passionate about. Here are some facts about CHD....

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. 
• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
• Via ...http://www.childrensheartfoundation.org/about-chf/fact-sheets 

Do these facts surprise you? They surprised me too. When I was pregnant I didn't hear or know of anything about CHD yet 1-100 babies are born with them. I had no knowledge that my baby had anything wrong with him till after he was born even after having the normal routine ultasounds. After Shane's birth his cardiologist even looked at the ultra sound videos and couldn't see anything. Some people are never diagnosed because they go undetected. Most however that are diagnosed as said above will have major Open heart surgery to repair it. In Shane's case he will have multiple surgeries throughout his life.  

The CHD road not only affects the person itself but the families surrounding them. Its a long hard road and doesn't stop at just heart surgeries.  Here is a short version of my sons Shane's Story.

Shane 8 days old before first Heart Surgery

Shane 3 m old After 2nd heart surgery

Shane recovering in hospital

 At 8 days old the day after Christmas our precious Shane stopped eating and breathing weird, as first time parents we were very unsure of what was normal. We decided to take Shane to the ER around 2am. When we arrived his body temp had dropped to 94 degrees, they couldn't read any blood pressure and immediately was put on oxygen. Within a half hour we were told he needed to be life flighted to primary children's hospital. Shortly after that he was put on the ventilator because he no longer could breathe on his own and his body was very lifeless. When we got to Primary's he was diagnosed with two holes in his heart(ASD,VSD) a pinched Aorta (Coarctation)right outside of his heart. He was also diagnosed with left ventricle non compaction cardiomyopathy a poor pumping left side of his heart. Shane has endured two heart surgeries and barely missed being listed on heart transplant list. Later on Shane was diagnosed with a bicuspid aortic valve leak (BAV) because of this leak his heart will need multiple valve replacements (open heart surgeries) throughout his life. As doctor projects the first before he is twelve.
Every time Shane heart beats it is fighting. Our story is just 1-100 born every 15 seconds. Not only do we endure heart surgeries and countless doctors appointments( that are an hours away) but most CHD kids endure, feeding issues, physical therapy, developmental delays, ENT oxygen dependency, and more susceptible to sickness .As is mostly the case in Shane's life. Help spread CHD awareness. 

There is a GO RED awareness going around to change your facebook profile picture to help others feel free to choose any of these pictures below. :) Or google CHD Awareness pictures.:) 

 Lets  get the word out about these defects. So Change your Profile picture to Red or a heart. So we can spread Awareness.

One of many echos done

 

Wearing Red for my Warrior

 Every day Research and medical science is evolving and there are things being done today that were not even known 20 or even 10 years ago. If you would like to donate for research in discovering more about these defects and finding out why... you can donate here. http://www.intermountainhealinghearts.org/donations  This organization donates funds for research and helps families suffering with CHD.  

Post Tonsil/Adenoid Removal Update

Shane had his follow up with his ENT today at Primary's. It's been about 6 weeks since his tonsil/adenoids and vocal chord injection. The doctor said  it all looked like it healed well. We also discussed the improvements we have seen in Shane since the surgery. There have been lots! He hasn't been having frequent gasping episodes, he breathes normal when he sleeps, and has been sleeping better as far as quality of sleep it seems too. Shane also hasn't been coughing after everything he drinks. Shane also doesn't sound so nasally and congested all the time now. We haven't noticed any difference of volume of his voice which was a question, but we are not concerned about that at this point. So the question is now are some of these improvements because of tonsil/adenoids removal or vocal chord injection? The vocal chord injection only lasts around 5 months so if things start coming back then we know it' was improved because of the injection. If things start coming back then he said they will look into a nerve vocal chord surgery through Shane's neck that will be a permanent fix. So we will see what time will tell. Our next appt is in July.

 We also met with genetics last week this was the first time in 3 years since we saw them last. Shane has a duplication of the 16th chromosome so they want to see for study purposes if any things Shane possesses are related with this duplication. Shane has some of the characteristics  related with this duplication and as he developed other things may "occur" that they see with duplication. We are not to worried about any of it but I think it's fascinating and would love to get us tested too (nathan and I), but not in the cards right now.

As for us the Cox family...  We were all sick over valentines, all with different sicknesses. Shane started his special Ed preschool on jan 26th with the time I wanted.

First Day of Preschool

 
 After going through everything there were moments where I didn't even think he would come home from the hospital. Here we are the first day of preschool. What a battle this has been he may not be at a normal preschool to start off,but I know that this special Ed preschool has the needs and training to help in his speech and development delays. I'm so grateful there are wonderful programs like this before school starts to prepare him and get him caught up to what lies ahead.

 It can be such a scary task sending you hardly verbal 3 year old to teachers you don't know. Their training however is specialized with these special kids who need that extra boost in life.

Feelings relived

  Shane my 3 year old who has/had heart defects got his tonsils/adenoids out last Friday. Since he has a paralyzed vocal chord also,  his ENT Suggested also injecting his vocal chord with this anti wrinkle type serum. No not botox! :) This surgery would help with his breathing(minor sleep apnea/breathing blockage when sleeps)  and hopefully with his swallowing also. I wont bore you with all the technicalities, but this surgery was needed. 

   Although as a mom you question is this really needed? Does my son really need to be put under anesthesia and as a heart baby this means a ton more than a perfectly healthy baby.  Does he really need these out?You always think of the risks out weighing all the good that come from it.  As a mom who spends many trips traveling down to Primary's children's Hospital I have learned the doctors will not suggest surgery unless its absolutely necessary. I had to trust the doctors, nurses and everyone else with this procedure. 

   This Surgery though its not nearly as serious as Shane's two heart surgery's it brought back memories in every aspect. Having Shane Fast before surgery brought up the memory of trying to make Shane as a baby fast. Getting him registered putting him in his hospital gown. Last but not least the most horrible memory of saying goodbye at the "yellow Line". Where the anesthesiologist and Shane continue going while you have to stop. Saying goodbye to my much older Shane made it even harder its different when they are babies knowing they wont remember this. Shane is starting to get to the age where he will start understanding and remembering these things. My husband and I both cried as we got to the waiting room. This also brought back memories of hours of waiting while Shane was in heart surgery. We pointed out where we sat each surgery and all those emotions come flooding back. I looked around the room hearing some conversations of surgeon updates these children have bone surgery this one having this surgery. Seeing parents crying, pacing because their waits had been long. I just wanted to go hug everyone and say I have been there it will be ok. 

  All went well with Shane's surgery, he had a tough time coming out of anesthesia which he did before many times but, what a trooper he is. It was very different seeing my big 3 year old actually know mom was around and wanted to be held and communicate with us. Very different from just a baby in a bed. Since Shane is not " normal" he stayed the night at Primary's after surgery for observation and to make sure all was well. My husband stayed with Shane at the hospital and I went to my in laws where my little 21 m old was getting watched by grandma and grandpa. I spent the night saw my little Jeremy briefly in the morning kissed him goodbye and headed back to the hospital. 

  We made it home. recovery was full of many sleepless nights and meds around the clock. We made it through like we always do. Now we will just hope and pray all future surgeries go as well. :)