Thursday, October 18, 2018

Quick check in!

We met with Sam's specialist last week.  After reviewing X-rays we are considering surgery just for his adenoids.   We have another sleep study scheduled for November 1 to see if the Cpap machine will even work for Sam.   Of course there is the issue with Sam's eye.  We have to worry about the mask pushing air into his eye implant and drying out his eye.  We've been working with Sam with just a nose mask.  He's been good about it but it's worrisome to think of him taking it out of his nose at night while we are asleep.  He brings everything up to his eyes.  So we are in a waiting mode right now looking at options.  Of course i hate the idea of an operation given Sam's ability to turn things into a crisis!   But maybe if he has it there's a small chance we won't have to deal with a machine.  Please pray that we make the right decisions for him.  

Selah is in the process of getting a new nurse or two.  We have a base of three nurses who are very loyal and faithful.  They've been with us for years.  They have carried the case between them for years too but we've always tried to find a 4th nurse that fits in.  It just hasn't happened yet.  So we have things up in the air with interviewing and training people.


Our oldest son is home for fall break and some of his friends are joining us so we will have a full house this weekend:)  That's always fun:)



Sarah was featured in an article about horse therapy.  It's so cool to think of her being featured in a news article!! 

Read about Sarah and her horse therapy here





Well just a quick check in! 






Tuesday, October 9, 2018

Test Results for Sam



We got the results back from Sam's sleep study and it is not good.  He had 164 obstructive apneas, 136 hypopneas, 2 central apneas, and 11 mixed apneas....  And although we were pleased that he slept,he did have prolonged periods of wakefulness during the study that the doctor who read the study felt resulted in an underestimation of the severity of his apnea! 

We received the results last Wednesday and were immediately given a priority appointment with ENT for last Friday.  It was assumed that he would need his tonsils and adenoids taken out.   If only.....
It seems his tonsils are smaller than normal and no other issues were seen.  We still have to get an x-ray of his adenoids but the ENT did not think there was an issue.   She feels it s more like muscle tone.  It may even be because of the near drowning!  She felt it was like a CP type issue. 

We've also noticed that his CP has gotten worse in his legs I don't think I've gone into details on here but Sam's legs are so stiff and he stands with them bent.  this has come on quickly over the past year.  He has seen orthopedics and is having therapy specifically addressing this issue 

So we are FREAKING out here!  He was given a prescription for an apnea monitor on Friday  today is Tuesday and we still do not have one.  I actually had to fight to get the prescription.  The ENT suggested it but since she is not seeing him again (no need) then I had to get his pediatrician to write an order after 3 pm on a Friday.  Our doctor was not in but did it anyhow.  He's a great doctor!!!  Our insurance approved it by 6 pm....   since then we have been lied to by companies.  Friday night a company said it was on the way to our home with a monitor.  They never came!  So now we've changed companies....still waiting!!!!

We borrowed a machine but it is not quite what he needs but it does alarm if he gets too low on his oxygen.  For the time being Sam sleeps with Mama.  He is quite pleased with that LOL  I've not got a lot of sleep but last night was the best.  I believe I slept through some of his lighter alarms.   Sometimes just hearing a beep with make him take a breath but it doesn't wake him up. 

The ENT is not sure what will happen now.  We have an appointment with a sleep specialist on Tuesday and we hope we get some answers.  They will probably do another sleep study and try both a bi-pap and a cpap machine.  We do not know if Sam will adjust to having something on his face.  The ENT  fears that neither machine will completely help him and he will still have to wear a monitor. 
To say we are concerned is an understatement.  I've been afraid for Sam at night for awhile.   Not to be overly dramatic but I've felt like death was near to him!!!  I know that sounds crazy but it's true.  Sleep Apnea has always been a concern.  He wore a monitor until he was 7 years old- the apneas he had back then were central apneas meaning the brain forgot to tell the body to breathe.  But he outgrew them.  We did try to do a sleep study in December of 2016 but he wouldn't sleep.  I don't know if anything would have shown up then or not.  Maybe this is just his CP getting worse as he gets older.  Sam has always been my mystery baby!  So many medical oddities that no one could ever explain to us.  thankfully he outgrew alot of things but now it seems he is growing into other issues. 

I'm not an easily discouraged person but I feel discouraged right now  We are still looking for that 4th nurse for Selah.  We have three committed and wonderfully loyal nurses but we just can't seem to keep that 4th nurse's position filled.  I'm beyond tired of dealing with our agency over issues.  They probably cringe every time I call as I cringe when I have to call them!  Sometimes I despair at the thought of trying to keep her home after our nurses retire. 

In my life I have so much responsibility.  Most of the time I can deal with it.  But the WORST part of being a mom with special needs kids is having to deal with a bunch of idiots (companies, providers, health care providers etc) that have no emotional attachment to Selah or to anyone.  Healthcare was a calling but I don't see that holding true for many  people involved in the healthcare field anymore.  I have some great doctors that we deal with that see my kids as people and we've been blessed with great nurses but it is very rare to find a provider (insurance, machines, supplies, nursing agency, pharmacy etc) that really cares.  We had the very best pharmacist for awhile.  I could count on that guy for everything.  He moved on and started his own pharmacy that our insurance does not work with as of yet.  I don't expect special treatment but I EXPECT PEOPLE TO DO THEIR JOBS!!!

So this has been a stressful few weeks for me.  It can only get better I hope!

****just as i was finishing this blog I got a call from the sleep specialist and they've moved up Sam's appointment to Thursday morning.  i am so glad!!!

Monday, October 1, 2018

Highlights




Do you want to meet our new pet?  Meet Possum baby  I've always liked possums and this is the smallest one I've ever seen.  He eats after the cats every night


The cats leave him alone.







Possums are really good animals and eat up bugs.  They can make holes in your yard but we have a 1 year old Lab who makes way more holes than this little guy ever would.



Last week we took our lives into our hands and went with our church, skating.  Growing up I was quite the skater.  Near my friend Lisa's house there was a road that had asphalt on it.  Most of the roads in our area weren't paved but this one was and was perfect for skating on.  We both had skates and skate boards. I can't tell the how many hundreds/thousands of hours we skated on that road!  Also the road by my church was paved and I'd meet up my little pastor daughter's friend Cheryl and we'd skate for hours.  I also frequented the skating rink outside of town.  It had an uneven wooden floor and NO air conditioning just big windows and a giant fan in the back of the room.  But it had a good juke box:)  I'd go s often as I could get a ride out there.  Sometimes our church's youth group would rent the place out but back in those uneducated times we would blissfully skate to all the rock and roll songs we could play on the juke box LOL  Later when the new rink was build in town with air conditioning the youth group would still have skate night but we'd only be allowed to play Christian music,  We'd learned about "backwards masking" by then LOL  At our skate night last week we only played Christian music- of course I as the pastor's wife understand why - but something was just missing without having the Rolling Stones singing "Beast of Burden" LOL







Couples skating








Show off



I did skate some in college but I'm pretty sure I hadn't skated since Steve's 12th birthday party when we rented out an old skating rink near where we live now.  since Steve is going to be 23 this month, I think it's been awhile LOL  Luckily neither Jon or I fell.  By the end of the night I was starting to be able to cross my feet over each other on turns!  Yay Baby!


We had a belated birthday dinner.  



















We ran over to see Steve for a couple of hours.  Sarah stayed home this time with her respite worker.  Sometimes it is easier just to take one of the little ones with us.  


Last Wednesday it was time for Sam's sleep study.  He had Apnea for years and slept with a monitor on till he was 7 years old and would take it off nightly.  He had improved enough that the doctors were ok with him coming off.  I didn't really want him off but it was impossible to keep them on him.   About two years ago we tried to do a sleep study on him.  I didn't know how it would go.... well he was very good about being hooked up BUT he stayed awake all night with his hands folded on his chest!   We knew we would have to help him more this time so we went to the beach for the afternoon.  


Fort Desoto Park is beautiful!   There has been some red tide so we had the place to ourselves.  We were afraid to go in the water but we didn't really see any signs of red tide.  













Sunshine Skyway bridge!




Then we headed back to the Ronald McDonald House and Sam had some playtime
































I gave him a bath and a BIG supper full of lots of carbs (thanks Carrabba's)  He tried to fall asleep after his bath but I told him he had to wait!

So we finally get over to the hospital and he gets hooked up.  Thankfully he was so sleepy he literally climbed in the bed when we got in the room!!!












 It looks like we are by teh bedside of our critically ill child!!!!



Daddy stayed with him.  I enjoyed a Ronald McDonald House bedroom all to myself!! I dont' know when the last time was that I was alone!!!



We haven't got the results yet.  Sam slept good and snored so I'm sure they got a good reading.
Of course our hope is there is no apnea and he just snores....but he snores so loud!

We stay busy!  Sarah does her horse back riding therapy 3 days a week and Sam 2 days.  They along with Selah have Occupational Therapy an hour a week.  There is always some appointment on the other days.  Tomorrow Selah has her yearly neurologist appointment in Tampa.  She is doing good   Then Wednesday I'm interviewing a new nurse for 2 shifts.  There's always something going on here.


Hope you have a great week!