Secret shopper, the hospital version

If there was ever a job similar to a "secret shopper" but for people spending time at hospitals I think that it might be up my alley.  In the last week I have spent substantial time at 3 different hospitals in 3 different cities.  Fortunately most of our time spent at the hospitals was for scheduled appointments and not a health emergency.  Our more complex sibling group have never ending medical appointments and it seems that every time they see a medical professional at least one of them is referred to another doctor, for another procedure or is given a new diagnosis.  I really had thought this would have slowed down by now as they have been "home" now for 8 years, however it seems that the more we know the less we know.

We are constantly working too provide some sense of a normal childhood into our kids lives, which for us means really focusing on taking time to play between all of the appointments and procedures.  One of our recent hospital visits was over 3 days so we decided to make it into a mini vacation.  We booked 2 hotel suites too accommodate the 12 of us, prepared some meals in advance that we could throw into the crockpot we packed with us and headed off for some fun.  When one child had an appointment we took turns supporting them while the rest of the family swam in the hotel pool or went to a local playground.  After the appointments one day we visted Science World, another day we visted the local Aquarium and each day we spent many hours in the hotel pool, which we had to ourself each time, to the delight of the children.  Having all this fun planned also helped ease the anxiety for the child with the appointments as it gave them something else too focus on.

Our drive too provide some normalcy in the children's life has been reinforced after speaking to a few people who grew up requiring many medical appointments/treatments.  My father in particular tells stories of the adventures him and my grandmother would have when they needed to travel to the "city" for his hospital visits.  I hope my children can tell similar tales, with fond memories, to their children when they are older.

If you have a child that requires multiple appointments and hospital visits what do you do too provide a sense of normalcy?

A s**tty, dumpster diving, ambulance ride kind of day.

Some days just don't go as well as planned, or hoped for, and in the life of special needs parenting the realities of life can be quite different than what most people experience in a given day.  I don't know if it's the recent full moon or what but some of the children in this house have been way off, and their behaviours have just been bizarre.

Yesterday morning when walking into the youngest boys room there was the undeniable smell of feces, the stench was way worse than anytime they have both soiled their diapers overnight.  It did not take much investigation to determine a certain young man had been extremely creative with his feces, he had thrown it and it was stuck to the ceiling, he had finger painted everywhere with it - on/in his bed, on all of the walls, all over the carpet, on the door, on himself and all over his brother and his brothers bed.  There was feces everywhere, it is actually hard to believe that all that feces came from one small child.  I then started the cleanup which started with bathing the 2 young boys - both have severe sensory issues and bathing them is similar to trying to bath a feral cat.  Then onto the clean up, all the walls and ceiling needed to be sanitized.  All the bedding was put into the washer on the sanitary cycle and it was determined both mattresses were beyond ever being cleaned and needed to be replaced.  The carpet cleaner we were planning on buying in the future was also needed immediately to make the room habitable once again.  While all this was happening you would expect that the guilty party would be remorseful or even realize what he did was wrong but this child does not comprehend this at all.

Even after all of this, you should never think "your day can't get any worse or more bizarre" because around here an adult child, after eating a very large lunch is caught going through the dumpster, looking for food and then caught eating food that has gone bad.  He is not eating said food because there is a shortage or because he is hungry, it's because of his lack of impulse control.....he saw it so he must do it.

During all the day's events I was also receiving texts from another adult that struggles with mental health issues, especially when a stressful situation happens, and today he got a phone call regarding his outstanding phone bill.  This stressful situation resulted in texts throughout the day like Ï am done with life", "nothing in my life works out", "home and safe", etc.  Knowing that he can overwhelm extremely easily I respond with very simple, positive responses as that is all he is able to take in.  I tell him to use his tax return money to pay his phone bill, a simple manageable solution.  When I return home from purchasing the new mattresses and carpet cleaner, I ask him about his day?  He is still worked up and has a complete meltdown.  Hitting himself, clawing at his face, crying, destroying his sunglasses and saying he wants to kill himself.  I ensure all the younger children stay downstairs watching a movie with their older sister so we can deal with this young man without scaring anyone.  As he says he wants to kill himself, hubby phones for support, and the police and ambulance arrive quickly.  He agrees to going to the hospital and seeking more help (he has already been seeing mental health and getting support for a while now).  We call our amazing and very supportive respite provider and she comes to watch the younger kids, hubby continues with the planned activities with the older kids, and I spend the evening at the hospital helping our son be heard while he seeks more professional help.  Before leaving for the hospital I take time to ensure everyone is okay, the younger kids don't seem to notice that their brother left in the ambulance between the movie and excitment of the babysitter coming over and I talk with the older children as to why their brother is going for more help.

After all of this our son is released from the hospital with a new plan.  We are both starving so we grab take out, I send our son in to get the food so I have time to phone hubby taking time to lean on each other for support.  With these kinds of days, which fortunately don't happen often, it is important that hubby and I take time to look after ourselves and our relationship.  It's also a huge relief that we have built supports and plans that work to help us through these situations reducing the stress for everyone involved.  

Hospital visit anxiety

This week brought us to Children's hospital for more testing, with half of our complex sibling group (the other half have their turn next month).  Having a large siblilng group with multiple challenges has presented quite the puzzle for the medical team working with our family.  It seems whenever we visit a doctor, which seems like always, we leave there with more questions and upcoming appointments than we started with.  The added challenge the doctors face is that the the kids are adopted making it difficult to get birth family information which would be extremely helpful with such a complex mix of medical needs.

For us too get to Children's hospital it takes 6 or more hours depending on how long the wait is for the ferry.  We usually leave the day before our appointments and return the day following our appointments and add some fun into our time away.  Our son has extreme anxiety and was terrified about the idea of going to the hospital yet again.  We are fortunate that so far none of the testing has been invasive however in the past we did have one traumatic day when they were trying to do blood work on all 7 young screaming children and couldn't get veins in any of them which resulted in them giving up and having to try a different day.  This event has scarred our extremely anxious son and no amount of preparation seems to relieve his fears.  We tried social stories, talking about what was going to happen on our visit, talking about why he was scared, we tried focusing on more enjoyable activities while away however nonething seemed to help him even combined with his on going anxiety medication.  Do you have any tips on reducing a child's anxiety?

While on the ferry we listened to presentations by the Naturalists they had on board which was a nice diversion for the kids.  The presentation went well with our planned afternoon activity of visiting the "aquarium".  The last few visits to the aquarium it has been extremely busy but this time was great as the crowds were small.  The kids loved the dolphin show and we were fortunate that the staff recognized the fact that a couple of the kids were in wheelchairs and provided us with exceptional seats.  One daughter was truly amazed and squealed with joy every time the dolpin jumped.  From the aquarium we set off to our hotel and spent the evening in the swimming pool.  This long day with different activites was very beneficial in keeping the kids awake as they needed to be sleep deprived for their testing at the hospital and were only allowed 5 hours of sleep.

At the hospital 3 had sedated sleep EEG's and the good news is 2 actually showed seizure activity.  The kids have seizures regularly and every time they have had an EEG nothing has shown even though doctors have witnessed them having seizures, so seeing the activity on the EEG is apparently a good thing.  Our 5 year old had a lot of difficutly waking up from the sedation and could not sit or stand unassisted until the next morning.  We then met with the neurology and genetics doctors were they decided more testing is in order.....looks like MRI's, spinal taps and cardiology are int the childrens future.

Less pain more gain.....preparing children for the hospital

We are preparing for 7 of our children to see a team of doctors at Children's Hospital.  For our appointment we need to spend a day travelling each way so "hoteling" is also required.  Even when one child has an appointment we bring a support person which helps us focus on the child's needs and answering the doctors questions but with 7 being seen we will be bringing multiple support people.  This is going to be a grand adventure getting all of us to the hospital and through the appointments but we are hoping it will all be worthwhile and the doctors will provide us with some insight into our children's challenges.

It is important to prepare the children for a successful time at the hospital and with the doctors.  

Always tell your child ahead of time about any medical appointments or procedures.  You know your child best and know how much preparation time is required for your child to process the information and ask any questions they may have.

Prepare your child for their appointment by explaining what they can expect to happen and what is expected from them.  It is important to be truthful with your child, quite often children are worried if the procedure will hurt.  If there will be discomfort be honest and explain why it is required.  Depending on the procedure we will watch videos, read stories or role play to help the child understand what will happen.

Before the appointment, work with your child to find ways to help them be comfortable while at the appointment.  One of our daughters gets so worked up when bloodwork is required that it becomes more difficult for the lab technician and makes the procedure very traumatic.  We have found that practicing being still, deep breathing and relaxing has improved this procedure.  We also always bring a comfort item and something to do while waiting for the procedure.

During the procedure focus on distracting your child so the medical professional can do what is required.  Don't let your emotions get the best of you, stay calm, and reassure your child.  We usually chat about something fun we have recently done or something that's coming up.

After the procedure comfort your child and acknowledge their success.  Over the next couple days talk about the appointment, discuss why it was required and tell them what a good job they did.

We will be taking time to visit some tourist attractions and have some distraction fun also while away.  Getting to and from these appointments and the length of time at the hospital is extensive so we want the children to have some positive memories that hopefully out weigh the appointment.