A Year in Review--The Fourth Year

Noah enjoying his birthday cake

Noah at Chuck E. Cheese

Today is Noah's 5th birthday.  I cannot believe that another year has passed so quickly. It seems like just yesterday we were learning about CCHS and ventilation and now we are moving onto kindergarten and investigating other ventilation options as he grows up.   This past year was a really good year.  He has really done a lot of growing up this year. Noah is very bright and constantly asking about everything he sees and hears.  He loves to tell everyone what he knows about his surroundings including all of the colors and numbers.  The best part from a medical standpoint is that he had no real medical issues this past year and has been very healthy and stable. 

We began the year by attending speech therapy at the elementary school twice a week.  He made such good progress that we were able to drop a therapy and only attend once a week.  His vent clinics went very well.  Noah's annual bronchoscopy was uneventful, which was a tremendous blessing given all of the turmoil that we had after the previous one.  No granulomas were found and there were no other issues.  His annual sleep study went well.   Everything was in the proper range and no ventilator settings were required.  He also had his holtor monitor (heart monitor)  and  neuroblastoma screening, which were both normal. 

This year was the year of travel.  With both his sisters playing travel volleyball, we were on the road most every weekend during the season.  We went to Tennessee, Georgia and several places here in Alabama for tournaments.  Noah became the unofficial assistant coach of the team and loved having 12 girls and their coach making him a part of the team.   During the summer, we spent a lot of time at Gulf Shores because his oldest sister played sand volleyball.  We had so much fun spending time at the beach.  Noah loved playing in the sand and the water.  We purchased a pop up canopy that was large enough to cover all of our beach chairs. We filled a large cooler with water, snacks and drinks and spent the days on the beach. Fortunately, the summer was fairly mild and it never got too hot during the tournaments.  As an extra precaution, I took a squirt bottle filled with water to squirt around the trach in case he got sand there but with the flextend trach, I really didn't need it.  I just put him in a swim shirt and tucked the trach under the shirt.  It worked very well.  I had to be very cautious with the heat and make sure he didn't get too hot.  He got very tired of me telling him to take a drink every so often, he just wanted to play in the sand. 

Noah had a really great time this summer at Vacation Bible School.  He really began interacting with the other children and actually participated in the activities.  He was very reserved last year so it was very encouraging to see him branching out socially.  It's so funny watching him.  He is very decisive and will tell them if he doesn't want to do something.  His personality is adorable.  He made several new friends at VBS and invited them to his birthday party. 

Another fun thing Noah did was to ride on Thomas the Train.  He loves trains and every year Thomas comes to visit our local train station.  They have a lot of fun activities related to trains.  He was very excited to be able to see Thomas. 

Noah was also able to spend the night with his Nana and Poppa.  They have kept him a couple of times this past year and have done fantastic with the vent and trach care.  It was a huge step for them and for us.  It has been fantastic for him to do the things that "normal" kids do and spend the night with his grandparents.  He loves staying there.  The spoil him terribly and he loves every minute of it.  Every time we go over there he asks when he is going to get to spend the night with them again. 

We recently had his birthday party at Chuck E. Cheese.  He invited several of his friends and a lot of family.  We spent the day playing games, eating pizza and cake and visiting with friends and family.  The noise level was little overwhelming for him at first but he quickly recovered and had a great time. 

 

Noah has also began 4K this year.  Currently, he attends twice a week from 9-1 at a local church based private kindergarten.  Because it is a private school, they do not have a nurse so I attend with him.  I stay in a room upstairs in case I am needed for a medical issue.  His starting school has not bothered me as much as I thought it would.  I guess its because I don't actually leave him.  I am on the premises.  Next year will be a whole different story.  He will be attending every day all day. The teachers and staff there have been fantastic and do a great job of watching him and making sure that he is ok.  They brought him to me once to check his trach because he had some nystatin powder around his neck.  We use the powder every night when we clean the trach.  They noticed some clumped up around the stoma and wasn't sure if it was a concern or not.  Now our other big decision is whether to leave him at his current preschool (which he loves) or put him in the public schools 5K program.  When we move him to public school, we will have to go through all of the negotiations with the school on nursing and Noah's care and what will have to be provided as a result of his condition.  I would prefer to leave him where he is now but if he went public, they would be required to have him a nurse and I could actually leave the school, which would be nice. I think that it will be a fight to get what we need with the public school.  I'm not looking forward to that part of it. 

Watching him grow and change has been such a blessing.  It is amazing to see how far he has come. 5 years ago I saw him being wheeled out of my room in an incubator going to the NICU.  I observed him with tubes and wires poking out of his body.  He never made a sound.  Now I see him talking constantly, playing in the sand, swimming in the pool, aggravating his sisters and I marvel at how strong he is, how much of a fighter he can be.  He is an amazing mighty little man and I am so blessed to be his mother.  They told me he would be in an institution the rest of his life.  He continues to show them just how wrong they were.   

Noah after his trach surgery

Noah's first birthday

Noah's first birthday



Coach Noah and the volleyball team

Noah and Thomas the Train

   

 

 

 

Happy 5th Birthday my Mighty Noah.  Mommy (and Daddy) are so proud of you. 

Do You Really Need a Nurse?

I belong to several trach/vent support groups on Facebook.  One of the most talked about issues is nursing care.  Some of these women have hit my last nerve.  So here goes.

Noah has never had nursing. Our insurance doesn't cover it and there no way we could afford to pay for nurses out of pocket so nursing has never really been an option for us.  That being said,  I know that some people need nurses.  Maybe their child is extremely vent dependent., maybe they work outside the home, maybe they are a single parent.  For whatever reason, nursing is necessary for them.  I get that.  But what I don't get is these moms who don't seem to know how to care for their child.  The moms who won't step foot outside their house during the winter, ones who are scared of using candles or perfume or having pets, ones who do not take their trached children to the beach or the pool.   I understand it's necessary to be careful but these kids need to experience LIFE.  They need the sand on their toes and the sun on their face.  They need to go to parks, zoos, movies, restaurants and experience all that life has to give.   I will be the first to admit how hard it is when you have to carry a ventilator, pulse ox, go bag and your baby.  It took me several trips to the car just to get stuff loaded.  It's a hassle for sure but one that is worth it.  I feel so sad for these kids who are stuck at home and don't get to do anything.

I've heard all the reasons for having nurses.

"It's safer to have someone watch your little one 24/7".
"Having a nurse at home is a must"
"You are a mom". (Not a nurse)
"There are no second chances for mistakes"
"You need sleep"

Yes I am a mom but I am also a chef, chauffeur, teacher, laundress, secretary, and nurse.  Every mom is these things. Special needs mommies just have more of the mommy nurse role.   No, there are no second chances but there's no second chances for anyone.  Yes, I do need sleep but so do all the mommies of newborns and daddies who work night shifts.  No, having a nurse at home is not a must.  We have done just fine for the last 5 years without one.  As for 24/7 watch, how would you like if someone sat beside you every day all day watching your every move.  There's no privacy.

I really do get that 24/7 nursing is important for some people.  I'm afraid, though. that these moms are becoming too dependent on other people to care for their child.  They don't know how to do trach care, they don't bathe their own children,  they rely on these nurses to handle all of the medical issues (trach care, suctioning, trach changes, vent alarms, etc.)  This is dangerous!  A few months ago a little boy died because his nurse did not know his trach was out!!!   These parents lost their child because a NURSE was not properly trained.  Just because someone has a nurse's license doesn't mean they know how to care for our child.  Not to mention, all of the schedulelng conflicts, nurses sleeping on the job, messing up the house and the lack of privacy.

If you have nursing and love them then I'm glad.  All I'm saying is that you need to be sure, completely 100% sure, that you can take care of your child's medical needs yourself.   Don't be afraid to do this. It's your child and nobody knows that child better than you.  Don't be afraid to ask questions. Build up a list if resources you can contact if you're not sure of something.  Don't listen to the people who say it can't be done.  It can.  It's just takes a lot of effort, planning and learning.  I just don't want trach/vent moms to be scared of their own kids.  They are just kids, they just need a little extra help. Do not be afraid to rely on yourself. Trust your instincts. Please, whatever you do,
don't condemn those of us who don't have nurses.  Our children are not in any more danger than yours.

I am so blessed that our hospital trained me so well.  It took several months but by the time I left the hospital with Noah, I knew how to care for him completely.  No, I am not a licensed nurse but I do know the nursing skills needed to care for my own child.   Our pulmonary team made sure we had the right training and the confidence to handle things ourselves and for that I will be forever grateful.

When Our Best Isn't Good Enough

The CCHS community has suffered yet another loss.  A little girl named Sloane lost her battle with CCHS.  Her parents did all the right things, took great care of her but yet it still wasn't enough. 

We take such careful care of Noah.  We go to all of his checkups, get all of his vaccinations, do all of the yearly tests, read as much as we can on his disorder and do everything we can to make his life as normal as possible.  But there is always that fear.   The fear that our best isn't good enough.  Noah has a mild mutation of 20/25, which means he doesn't have as many problems as some of the higher mutations.  But that doesn't matter to me.  The risk is still there. 

My greatest fear is that Noah will have a heart pause.  We have lost several CCHS kids to heart issues.  Noah has yearly holtor monitors to test for this.  However, as his doctor has told us, CCHS is a brain issue, not a heart issue.  He could have a holtor monitor for 3 months and the next day after he has had it removed, he could have a pause.  Because its a brain issue, it can happen any time.  There is no rhyme or reason. 

My other concern is the development of neuroblastomas (cancer).  One sweet CCHS boy was tested every 6 months but he still developed neuroblastoma and lost his battle also.  Noah gets tested once a year for this.  Is this enough?  I don't know. 

The CCHS community is small.  However, we are close.  When one family cries, we all cry.  Our children have so much in common and even though they are fierce warriors, they are still fragile.   Sometimes we forget that.  We try to go about our daily lives as normal as possible, not dwelling on the possibilities of this crazy disorder.  We live our lives doing the best that we can, doing all of the right things, but still sometimes that is not good enough and we have to live with that. 



In memory of our brave CCHS warriors
Sloane
Landon
Tim
Brielle
Lucy
Allison