The First Sleepover

Well it finally happened.  Chris and I knew it was going to happen sooner or later.  Noah asked to spend the night at his grandparent's house.  My girls have always loved going over to my parent's house (Nana and Poppa).  Even at age 10, Hannah still loves to spend the night.  We knew that it would just be a matter of time before Noah wanted to spend the night too. 

Awhile back, Noah and I packed everything up and went to spend the night at Nana's house.  I stayed too, just in case.  He did great, although I don't think my poor mom slept at all that night.  Last night, I did not stay. 

Packing for an overnight stay is a little exhausting.  The back of the van looked like we were going for a week.  I had his vent, suction machine, co2 monitor, sat monitor, the vent heater, a bag full of machine cords, the go bag, an overnight bag and one bag just to hold all of Noah's favorite blankets and babies.  I carried everything over there and helped mom set it all up. 

Noah had already been talking about spending the night.  The only thing he was worried about was that Nana would close the door or turn the light off.  I kept reassuring him that wouldn't happen and so did Nana.  He was so excited and ready to stay.  Then it was time for us to leave.  He looked at me and said he wanted to go with me.  My heart sank.  We had already discussed that if he was really scared and wanted to leave that I was not taking all the equipment apart and packing it back up.  I decided that if he did this, that I would just spend the night also.  I reassured him that it would be fine and reminded him that his Honey (his sister, Hannah) was spending the night also.  He thought about this for a minute and then agreed.  We kissed him and left.  I had no worries leaving him in my mom and dad's care.  It was a sad but great feeling at the same time.  I was happy to let him stay but realized that my little boy is growing up. 

It was so weird going to sleep without the sound of the ventilator.  I slept all night, the first time in almost 4 years, with no alarms, no wooshes of air, no beeps.  It was amazing.  It was time.  I knew he was ready and so was I. 

I can't imagine how scary that probably was for my parents.  I've always tried to put myself in other people's shoes to see how they would feel.  It is a huge responsibility.  But, my mom was trained at the hospital with me and I knew she could take care of him all night without me.  Noah is very stable and the only alarms that occur are false; there is water in the circuit, the sat probe is loose, he is laying on the circuit, etc.  We live about 20 minutes away so I told my mom that if she got scared, just wake him up and call me.  I'm so proud of them for taking this big step and letting him realize that just because he has a trach and a vent that he can do the same things as his sisters.  I am determined that his diagnosis will not hold him back and that he will never feel penalized for having CCHS.  Yes we have to take some precautions and it sometimes takes a lot of planning but it is so worth it in the end.  

Thanks mom and dad for helping Noah be "normal".  I know how scary that was and I'm proud of you. 

Noah sleeping peacefully at Nana's and Poppa's house

The Wrong Way

Growing up in the deep south, we were taught manners at an early age.  I have always tried to be mindful of other people's feelings and consider myself to be a tactful person.  Unfortunately, I have found that this is not true with all people.  Maybe I have become more sensitive to Noah's diagnosis or maybe I just notice it more but I have found that a lot of people need to use more restraint and better manners when discussing special needs. 

When Noah was in the hospital before getting a diagnosis, we saw so many doctors and professionals.  One of these was a geneticist who was suppose to be an expert in his field.  I will never forget the day we got a call from the hospital telling us the geneticist would be there to meet with us.  The call came only an hour beforehand so there was not much time to plan.  Chris rushed home from work, we had no time for a sitter so we loaded the girls in the car and headed to the NICU.  Because of the swine flu epidemic, the girls were not allowed in the NICU so we had to make them wait in the waiting room.  Chris and I were sent to a small conference room to wait.  After about 15 minutes, the NICU doctor and the geneticist entered the room.  They proceeded to ramble on about the tests they had performed and informed us that all of them were normal.  The geneticist looked us straight in the eyes and said "Can I tell you I feel good about Noah?  No, I cannot."  Now how in the world were we suppose to process this information?  We took it to mean he was at death's door.  As they looked at us with pity, we were devastated.  After he told us this, they ended the meeting by telling us that "we could always hope for the outcome that we wanted as long as we had no answers".  What???  Basically, they gave us no hope whatsoever.   

Not long after, we were visiting Noah in the NICU when the other doctor came over to us.  She explained that they were testing for a rare disorder of CCHS.  She then informed us that he would be in an institution the rest of his life,  handed us a short, uninformative page from a medical journal, told us she would allow us to "process this information" and then walked off. 

We were left with the thought that Noah was close to dying and if he did survive, he would never live with us and wold be in an institution the rest of his life.  There was no more hope.  The despair was overwhelming.

Looking back, I realize that these so called doctors had no tact. There is a right and wrong way to give information like this.  In retrospect, they should have started by telling us the good news.  For instance, they could have told us things he did not have and explain that other than the unexplained desats that he was healthy.  Apparently, they saw being on the vent as a death sentence. 

Not only do the doctors/specialists have no tact when dealing with CCHS but other special needs parents can also.  There was a mother recently who I met on one of the special needs facebook pages.  Her daughter was undiagnosed but had many of the same symptoms of CCHS. Several of us CCHS parents had tried to help her.  She constantly asked questions and when we answered them, she would ignore the answers.  One day, she posted on our CCHS page that she had gotten the CCHS test results back.  To paraphrase her post, she basically said "thank God my kid doesn't have what your kid has".  Then she proceeded to ask us why we thought her child had apnea.  Seriously, who gets on a page where people have done their best to help you and then act so thankful that your child doesn't have the same diagnosis.  Plus, have the nerve to ask us what we thought was wrong.  Thankfully, she was removed from the page.  Another mother in the same situation was also asking questions.  We kept telling her that it was important for her daughter to be on the vent until the diagnosis was made and she kept making excuses like "we don't have a battery so we aren't taking the vent on vacation".  We kept urging her to get second opinions and all we heard were excuses and things like "I'm planning on" or "I'm going to" ask such and such doctor when we go back.  Eventually, we stopped answering her altogether.  It is beyond my understanding how people can act this way. 

When dealing with a diagnosis like CCHS, it is important to be positive and encouraging.  Parents are dealing with enough worries and do not need to hear negative comments.  One can be supportive without being tactless. 

Traveling with a special needs child

Traveling is stressful but even more so with a special needs child.  There are so many pieces of equipment and so many supplies that have to be taken, not including all of the regular things that have to be packed when traveling.  Plus, it is always a challenge to set the room up like a mini ICU.  We have always been of the mindset that we would treat Noah just as we treat our girls, including letting him travel.

I remember the first trip we took after he was discharged from the hospital.  We went to the beach during spring break.   I packed enough for a whole month but I wanted to be sure we had everything we needed.  After all, there was no running to Wal Mart to get HMEs or circuits.  We also had to figure out where he would sleep and room arrangement.  That trip was a learning experience for us.  We had so much fun and it helped to know that traveling with him would be possible. 

I have put together a few helpful tips for traveling with a trached/ventilated child.  I will also explain how we set the room up for Noah to sleep.

Supplies--When we first went to the beach for a week, I packed a suitcase for the trach supplies, one for vent supplies and one for clothing.  Noah had 3 suitcases!  After that trip, I realized it was a bit excessive so now I've condensed everything into 2 suitcases.  One for supplies and one for clothes.  We change circuits and the trach weekly.  I start the packing process by packing the vent things first.  (You could make a list of everything you need for circuit changes but I just go through the process in my head without using a list).  For a week, I usually take 3 of everything.  I pack 3 water bags (we usually use 2 in a week), 3 circuits, 3 water chambers, 3 omniflex, 3 swivels.  For trach supplies, I pack a lot of trach ties because I never know when we will be swimming.  I usually plan for 2 a day, which is 14 for a week.  I pack the cleansing soap, nystatin powder, 4 trachs, scissors, a trach kit for every day plus some extra gauze, about 4 bags of suction catheters and a baggie full of saline bullets.  I also take an extra suction canister and tubing.  I pack about 4 caps since he wears them all the time and they tend to get lost sometimes.  Plus, they are small and fit in the suitcase easily.

Equipment--We are very careful when packing the equipment.   We take our time to make sure we have everything.  The vent gets packed in its travel bag.  I am extremely careful with the CO2 monitor.  I wrap it in bubble wrap.  The sat monitor goes on top of the CO2 monitor and they have their own bag.  The suction machine has its own bag.

Electrical Cords--Every piece of equipment has a cord.  We have a ton of cords so we have a designated "cord bag".  Its a duffle bag that came with our set of luggage.  The first thing in the cord bag is the vent stand.  It's flat so it goes on bottom.  Then as I pack each piece of equipment, I put its cord in the cord bag.  I pack up the CO2 monitor and then take the cord and put it in the cord bag.  Same thing with the sat monitor.  We also put the vent heater in this bag.  The vent battery goes on the vent and the cord goes in the bag.  We also put our bungee cords in here too.  We make sure to take our surge protector.  We purchased an octopus like protector that has a lot of room for the cords to plug into.  We always take a long extension cord just in case. 

Vent batteries--We have 2 vent batteries.  The night before we leave, I plug everything up and let it all charge if needed.  I keep one vent battery in the back pocket of the car and the other is on the vent.  We went to Disney a couple of years ago when Noah was almost 2 and we carried 3 vent batteries.  On Noah's typical vent settings a vent battery will last 3-4 hours.  We took 3 because we wanted to be sure we had enough battery to last all day if necessary.  We have found that the higher the settings, the less time the battery lasts. 

Sleeping--We have found it easier to let Noah sleep on a blow up bed.  We bought a twin blow up mattress and I take a twin sheet with lots of blankets.  Upon arriving at our destination, we move the furniture around if needed.  All places are different but we usually have the same setup.  We put the blow up bed by our bed and use a nightstand for the vent.  The heater goes on the floor, as well as the sat monitor.  If the nightstand is too tall for the circuits to reach, we use a small upside down trash can or a small stool.

Taking equipment to attractions-- One of the biggest challenges is trying to figure out how to carry all the equipment to different attractions.  When we went to Disney, we took our large pack and play stroller.  When we went to the beach, we took a wagon.  The wagon was too hard to pull in the sand so I ended up getting a large beach bag in which to put the suction machine.  We have recently returned from a trip to Washington DC.  We really didn't want to take the large stroller, especially on the Metro so we had to come up with an alternative.  We ended up using a collapsible luggage cart and purchased a lot of bungee cords to secure the equipment to the cart.  Instead of taking our large stroller, we purchased a small, cheap umbrella stroller for Noah to ride in when he got tired.  When he wasnt using it, we strapped it to the luggage cart.  This worked extremely well.  The only downside was when we had to undo everything to get through security. 

A few extra tips--I always keep a spare circuit in the car for emergencies.  I use a laundry basket in front of Noah's seat in the car that holds the vent in place.  I keep his nebulizer equipment in a ziplock bag that I can just grab and put in the suitcase without unpacking it. I always have Chris double check the supplies/equipment to make sure I packed everything. 

As you can see, traveling takes a little extra planning but with careful packing we have never had an issue with not having anything we needed. 

Here is an example of how we set the vent up when we went to the mountains during spring break.  We try to hang the water bag but if there's no doorknob or hook then we just prop the water bag in front of the vent.  Here, the table was just the right height but if it is too tall, we place the heater on a small overturned trash can or a small stool.  The sat monitor is not shown but we put that on the floor by the heater.  I always take his current size trach and one smaller to put next to the ventilator. 

Here is the luggage cart with the equipment.  This worked very well when we went to Washington since we did a lot of walking and riding the Metro.

This was taken a few years ago at a beach house when Noah still slept in a crib.  There was a handy hook on the wall that I used to hang the water bag.  We used a stool because the circuit wouldn't reach from the table to the crib.  (Please note that we did not take a crib with us.  There was already one at this beach house).  The extra trachs are behind the ventilator.

This is the setup we used when we went to Disney.  We cut a hole in the pack and play to accommodate the vent circuits.  The vent is not shown in this picture but it is on a table on the right side.  (Please note:  We cut the mesh horizontally but realized that cutting it vertically would have made it easier to drain the circuits of water.  I had to pull unhook Noah from the circuit and pull it back through the mesh to drain the water.  This was a huge pain.  If we had cut the mesh vertically I could have just raised the circuit up to drain, rather than having to unhook him).

This is our very first beach trip after Noah was released from the hospital.  He was still small enough to sleep in the pumpkin seat.  As you can see, the vent is on its stand on the nightstand.  The heater is below on an overturned trash can and the water bag is propped up in front of the vent.  This is the same setup we use now except instead of the pumpkin seat, Noah is on a blow up mattress (as shown in the picture above).

The setup remains pretty much the same wherever we go.  We usually have to move a lamp off of the table or sometimes move the bed over to accommodate the blowup mattress.  There is usually a nightstand but once we went to a volleyball tournament and stayed in a motel that did not have one so we used a sturdy chair on which to put the ventilator.

We have learned to become very inventive.  It does take a little time to set everything up but with patience and imagination, it can be done.