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😃