Monday, March 26, 2012

Sleep Study Results

We got a call last week to change our follow-up appointment at the sleep center to this morning so we got the results way sooner than I had imagined.  Randy couldn't go with me and I considered asking someone to accompany me, but the last-minute nature of the appointment made it too difficult to arrange.  Randy and I put a few tweeks on my constructively written critique of the sleep lab last night and I printed out all the DME compliance reports I had been sent and prepared myself for whatever was to come.

So glad I was prepared.

We got in the room and the doctor said that Justin did great and that he only had 1.6 OSAs per hour and that he was so improved that it didn't appear that CPAP was necessary.  I asked if that was all she had and I pulled out my folder and laid out my evidence and we began the great debate.  She read me letter and agreed that I had some valid points that deserved further discussion.  She said that she would make sure it was addressed in future meetings.  (I still sent additional copies to the facility where we had the actual study, plus the main lab in the Medical Center, just to be sure everyone knows what's going on...)  Then when I got out my reports she was shocked that the DME reports showed a much greater incidence of OSAs and other sleep disruptions, so much more so that using them as evidence it would seem that further treatment is needed.  She validated my concerns and put in orders for another sleep study.  She said that in this study, Justin didn't meet the criteria for CPAP during the night and that is why it was never used.  I disagreed with her and said that the study was only baseline and not titration or split night at all.  She looked confused and said that her orders may have been changed by her supervisors.  What?  Not making sense to me at all.  Then I asked if this study that she was requesting would be split night or full night CPAP.  She was requesting full night since we already had data without CPAP.  (Me trying to determine what to expect from this next study, even though I will be sure to ask on one of the many confirmation calls...)  I tried to see if there were any other options for answers to Justin's sleep problems.  I am not married to CPAP, but if that's all I am offered then I need to work with that.  CPAP seems to be the only tool in her arsenal.  I am at a loss for how to continue.

As we left I asked for a copy of the sleep study results (just to check the data for myself...)  I read it while I was walking over to the other building to deliver my letter and the bill we received for over $500 for the two mask fittings we needed at the sleep lab.  (they're going to work on fixing that...)Justin has many night wakings, but only a small portion were associated with respiratory disruptions, resulting in the analysis of 1.6 OSAs per hour.  However, he woke up 136 times during the almost 10 hour night!   That seems to be a problem!  It a person is waking that many times, regardless of whether it's for breathing issues or otherwise, something is wrong!  Even I can figure that out!  So I didn't even get to talk with the doctor about that because apparently that did not seem to be a problem for her.

We went to lunch with Randy after the appointment and Randy was confused and speechless when I showed him the report.  Me too.  I didn't even realize until I left that the doctor did not check the data card in our CPAP (that I lugged all the way up to the hospital for no reason) or reference any reports from the DME that she had received.  This appointment was also supposed to be about CPAP compliance and that wasn't addressed at all.  If the doctor is supposed to monitor our progress (since Justin is a patient and all...) why isn't there any of that being done?  Is that solely my job?  I asked for another DME report and so far I haven't received it and I didn't get enough notice of this appointment to request that a DME report get sent to the doctor even though they are supposed to send one monthly without my intervention.

Randy and I haven't even had time to discuss everything and determine our next move.  We're debating going to another doctor (either within the same system or not), not using the CPAP at all to see how Justin does for a while, or maybe something completely different.  I haven't gotten a call about another study yet, so the timing of that may affect our decision.  Keep praying for wisdom, strength, and good sleep!  Thank you!

Sunday, March 25, 2012

Meat Day Clean Up

Meat Day was last week and that always involves washing out the coolers.  In the winter it's not the most pleasant job, as the water is pretty cold coming out of the hose.  But now that it's spring, I get a big "Hooray!" when I announce that it's time to clean out the coolers.  Justin's favorite job is soap and scrub...his feet that is!


Travis likes the spraying to rinse them out after washing.  It's a good idea to stay out of his way when he gets the hose.


Justin learned why spraying the hose is so much fun and I think it might be his new favorite job.  Travis said the water was freezing, but he never really tried to avoid it so it's hard to feel too badly for him!  Justin has good aim!


This month was our five year "meativersary"!  It's crazy to think it has been five years, but it's also hard to remember a time before Meat Day.   This month we did about 540 pounds of meat and it's still loads of fun for the whole family!

Tuesday, March 20, 2012

Sleep Study #4

We had another sleep study last night. To sum it up, it did not go well. It was at one of the satellite centers instead of the main campus, and we had never been there before.  So Justin and I got there a little bit early and had a little dinner before we had to check in.  We tried Zaxby's, which we have never had before.  There aren't any close to us, but there was one right by the hospital so we thought we would check it out.

Justin liked it, can you tell??



While there were a few there were a few surprises that night, the one bonus was not having to pay for parking!  Our first surprise was that the study was not scheduled for titration, but just a baseline reading.  Even the nurse was surprised by that since he saw that Justin uses a CPAP machine.  So the entire night was without the machine (even though I had lugged it along with us and spent how many hours pouring over the DMEs reports to determine the best mask and combination of factors to make for the most productive study possible).  Justin was excited to find that they have Veggie Tales movies and so he was able to watch Larry Boy while getting hooked up!  This is him staring at the TV.  This is why we limit TV in our home.


They started with the leg and chest monitors.  That began the tears.  He did calm down when we reminded him that he couldn't hear Larry while crying.


Here are the marks for the monitors on his head.  He measures, marks, cleans, and attaches all the monitors.  Then they get taped and then the ski mask goes over top.  This nurse was a big fan of tape and everything was very securely attached with plenty of tape.


This is the attaching and taping.  Our nurse got help with this part.  I held hands and talking lovingly into his ears; he held Justin's head, and the other nurse cleaned and attached.


The main part was done.  You can see the purple tape peeking out from under the mask.  It was wrapped around his head and then the mask.


Then more tape on top of the mask.  And tape in the temperature sensor and nasal cannula.  This cannula had an extra attachment that came down into his mouth to sense his mouth versus nose breathing.  There was so much tape Justin had a difficult time closing his mouth and swallowing.  We had to loosen it a bit.  Plus I needed to get in one last nose blowing.  Then they cut the top of the mask to make puppy dog ears.  Justin was slightly impressed when I showed him his picture.


He even managed a smile for the mom/son picture.  Can't you tell?


Here you can see the extra tube coming down into his mouth.  The nurse took this picture.  He thought he was being cute taking a close up picture.  Not so much.


And then the lights went out around 8 pm.  I had planned not to sleep in the same bed with Justin since I figured I would be more of a hindrance than a help.  But the nurse asked me to sleep with Justin and after the trauma of attachment, I figured I owed him some snuggles so I was tucked in next to Justin.  Randy just realized that it's a hospital bed we sleep in.  I guess I thought that was a given.  So we are snuggled in, and baby girl was right in the mix!  The nurse put the bed up pretty high so it was easier for him to attach the wires, but then he left it high and all the sides up so when I had to use the restroom, it was quite a challenge!   I didn't realize until the middle of the night that maybe he truly didn't realize I am pregnant.  He is a guy and all, but I just assume that it's pretty obvious that I am pregnant.  Do you think he just didn't know?

Anyway, the next time he came in during the night I asked him to put down one of the sides, making potty breaks much easier.  He was in several times during the night.  He had to put on a new temperature sensor over his nose and the chest strap came off too.  He kept talking to me over the intercom telling me to turn Justin over onto his side or back, not to leave him on his stomach.  What's the point if you don't see how he really sleeps?  Do you know how weird it is to have someone talk to you during the night like that?

We made it through the night and then we woke up to watch more Larry Boy during  monitor removal.  Thus more mindless staring.



I'm free!  (And ready to get this gunk out of my hair!)


I am not sure what to think about the night.  Justin was pretty restless and woke up a lot.  It was frustrating not being able to prepare Justin for what was going to happen since it was changed around.  The nurse was not very gentle and it got my mommy bear fists clenched but I am trying to be thoughtful and constructive in my responses to negative behavior.  Sounds better than it works.  I am mentally preparing my critiques.  We got back to the sleep clinic in four weeks, and then we should find out about the study.  Justin was glad to be back playing with Travis, after a long family nap!  I know I feel better!

Friday, March 16, 2012

Swimming Lessons

The boys started swimming lessons this week.  I wasn't sure about putting them in, especially Justin, but I decided to try it short-term, until the baby comes, and then see what happens.  I was concerned about what Justin would do sitting on the edge when the teacher was working with another student.  Justin did very well.  He sat down and waited impatiently for his next turn and he was so excited that he kept turning around to get my attention so I would see that he was in the swimming pool!  I think this picture sums up his compete enjoyment of the lesson:



He did bubbles very well, but he had a hard time kicking his legs.

It has been a long time since Travis has been swimming so I didn't know how much he would remember.  By the time the first lesson was over he was swimming (although not with great form) the (rather narrow) width of the pool.  Not a bad start!


Wednesday, March 14, 2012

As Snug as a Bug in a Rug

I was working in the kitchen when I got a call to come and "look at us!"  And this is what I found:


Somehow playing "knight" turned into playing in baby sister's bed.  Even Justin can climb in without help!  I am glad I got a heads up about their climbing tendencies!

Tuesday, March 13, 2012

School

Sometimes Justin likes getting in on school.


Love it!

Monday, March 12, 2012

CPAP

Lots has happened in our CPAP world and I think it might actually be getting better.  I am not certain since I didn't get the report from the DME that I requested today (grrr...) but for me, it's going well.  The boys slept in the same room while we were at the DeCarlo B & B for the drywall repair and I was in the room all the time.  Part of it was the novelty of being together.  The first morning I took of Justin's mask around 5:45 am and told him to lay down and get some more sleep.  When Randy and I were finished getting ready in the bathroom I came out and hear noises from the boys' room.  I went in and they were both in the same twin bed, not sleeping.  I asked Travis what was going on and he said that they were playing, like they did the previous night before going to sleep.  Travis asked, "Didn't you hear the ruckus?"  After that I stayed upstairs until I was certain they were asleep! 

While we had our visitors the boys shared Justin's room and when they left, we moved Justin to Travis' room so they now share the room.  (And baby girl's room is getting ready for her arrival!)  So during all this time Travis has learned how to put on and take off Justin's mask so we have had to set some rules for when that happens.  (No taking it off before 6 am.  Get Mommy if Justin is having problems, etc.)   So really I think it has been going fairly smooth, given the novelty factor still in play.

We also added an allergy medicine and a nasal spray.  We're hoping that those make it easier for Justin to tolerate the CPAP and decrease the apnea episodes.  We started those a couple of days ago and it seems to be helping.


Since I began writing this, I got the report from the DME.  I try to get the reports once a week so I don't get too narrowed in on one night.  During the range of the report, Justin still had a high average of apnea episodes.  That had always been the one area that is our biggest problem.  The report also tracks large mask leaks (when the seal is so compromised that more air is escaping that being blown in his nose), snoring, RERAs (respiratory event related arousals) and hypopnia episodes.  We haven't had many of any of these "events" before, but they seem to be increasing.  Justin flops so much that he ends up face down to the foot of the bed and he twists his head around causing the mask to unseal, but not enough to wake him.  And the hypopnia events per night went from a random one per weekly report to almost as many per night as apnea episodes.  Our struggle with attempting to solve the problem is that one night is very bad, with lots of every type of event, to the next night being very good, with almost no issues.  We don't do anything different, so why is the result so different?


Since I began writing, a few days have passed (okay, a lot) but since we put the boys together I have not had to go into their room hardly at all to help with Justin.  I have been up to help with Travis almost as much (He called the other night to make sure that we were still here.  When I told him that we were he went back into his room and went to sleep.  What???)  The reports are still all over the place, but I am getting better sleep.  The first night of not going into their room was like the first night a baby sleeps through the night.  I woke up with a jolt and shook Randy and asked him if it was really morning and if we really hadn't gone in to help Justin.  Quite a pleasant surprise!


So in the end I figure we know not much more than we knew before.  (Except I am living in a little less of a constant daze.)  We have a sleep study planned for next Monday and I am hoping he does some good flopping/large leak making and has a bad night with lots of events so we can get some helpful answers.  It will take a few weeks to get back to the sleep clinic for results, so it may take time to get those desired answers.

Wednesday, March 7, 2012

Birthing a Tiger (or Rather a Tigger)

One of major perks of an upcoming sibling is getting big brother gifts.  Justin got this shark hat from a family friend.  The tigger was also a gift that came from the shower over the weekend.  Isn't it nice how they go together?






Monday, March 5, 2012

Rodeo Time!

We (heart) Rodeo Houston and this year we got to take some visiting family with us on our trip to the rodeo.  Yeah!  It was Jerry and Thatcher's first trip to the rodeo so we had to make it special.  Poor Daddy missed the trip since he had to work.  My gang and I dressed in our Packers gear and while we got a few scoffs, I came home with two Packer boys without loss or other incident.

We took the almost-group picture with the longhorn steer, who decided to move his head so we missed the actually long...horns in the picture.


Travis found some more worms.  Always a good boy activity.  Justin enjoyed just digging his hands deep into the dirt.  Forget about the worms!


Picture with the Rodeo mascot, the Big H.  (Not sure if he has a real name...)  Travis wouldn't go anywhere near him.  Justin gave him a hug and Thatcher eyed him warily. 


Justin's favorite animals were the chicks.  He talked with them and pointed out every one of them to me so that I could see them too.


Travis liked them too.  Or at least they kept his attention longer than any other animal.


Miss Moo

Travis at least agreed to get close to her but he wouldn't touch her.  Justin gave her a kiss.  It is odd how the kids' reactions change from year to year.


Then it was outside and on to Fun at the Farm.  This is one of Travis' favorite things to do and he knows exactly what to do!  You grab a basket at the beginning and go through the various food-making areas of the farm (collecting eggs, picking fruit from trees, planting veggies, shearing sheep, etc.)

Planting tomatoes and then gathering a plastic one for the bucket


This is my favorite picture from the Farm.  I caught him at the perfect moment!


Picking corn...


And then playing in it!  Why have a sand box when you can have a corn box?


And if big brother face plants in the corn, little brother should do it too.


We might have brought home a few kernels in pockets and shoes.  Not sure how that wasn't uncomfortable...


Thatcher got a ride on cousin Travis' shoulders.


Ah, and then the tractor tire pictures.  We got Thatcher into the party with a group shot in the tire.






Travis was not too big to drive the tractor though.  He loves his tractor rides!


Justin enjoyed it too.  He tried all the levers and gears and was a little upset when he found that none of them actually moved.


It was a beautiful day for rodeoing and we basked in a warm Texas sun.  We also visited the Mutton Bustin' tent (Jerry laughed so hard he cried!), ate some fried food (oreos, pickles and snickers - oreos and pickles are still my favorites and being pregnant I declared them all fair game!) and went to the Pig Races.  Then there was a new event this year, the Kid Tractor Pull.  Ironically, they come from Mireille and Jerry's home state of Washington.  They are little tractors pulling trailers with pulley systems attached hauling weights that advance the farther they pedal.  A "full pull" is 25 feet, and the weight increases by age.

Here's the "driver's meeting" before the competition.  In the sea of school groups, Travis is pretty easy to spot!


The starting line...


Getting harder...


Travis made it about 20 feet.  Only two girls managed "full pulls" and then they had to pull double the weight in the finals.  Everyone got participation ribbons.  Here's the group getting applauded by the audience.  Justin wanted to do it so badly!  Next year he'll be old enough so we'll practice so we're ready!


Then it was lunch time and back home for nap.  We fit in a lot of fun activities and we got our fill of Rodeo for another year.  So glad we got such great weather.  Travis even got a farmer tan!  How fitting!  We had a great time at the Rodeo and Travis loved the tractor pulling.  He is all set for next year!

Sunday, March 4, 2012

Showering Baby

When my sister planned to come to town, she wanted to throw me a baby shower so in a short couple of weeks, she and my friends planned a sweet party to help welcome baby girl to our family.  I truly did not expect something so beautiful and special, but I should have knowing how creative my friends are!  They used a butterfly theme since that's what we had planned for baby girl.  (The room is blue and with all the other painting we have to do I wasn't really excited about doing more painting so blue walls become the perfect sky for flying butterflies, right?)

Here are some of the hostesses and the yummy food they made!  Even chocolate covered strawberries!  You rock, Kelsey!




So many great friends came to help celebrate.





And then the presents!   So sweet and beyond overwhelming.  Baby girl is well-loved!  Touches my heart!


The very cute teddy bear coat!  We'll have to take a trip somewhere cooler than here so she can wear it!


Our family friend, Mommy Sharon, completely outdid herself with clothes for baby girl.  She filled a diaper bag for Travis before he was born but this time she filled a diaper box!  Here's the beginning...

And the afghan she made!  Gorgeous!


And this is everything.   She is amazing and I can't wait for baby girl to meet her (and Daddy Jack too!)


This might be the cutest bathing suit ever!  I was worried about two-piece suits, but this is just perfect with the straps and flower.  Can't wait for her to grow into it!


And something for Daddy, the Aggie sippie cup.  (Something not pink!)


Plus the tutu.  She's going to be decked out I tell you!  Can she wear the tutu and drink out of the sippie cup at the same time?  (You know Aggies don't do cheerleaders after all!)


When we got home and laid it out for Randy to see, he said it looked like the living room threw up pink!  Quite the change from our usual little (big!) boy clothes.  I was just shopping for some summer clothes for the boys and I got some adorable matching robot PJs for Justin and Travis and I was so excited to show them to Randy and he just shook his head and commented on how he wasn't sure how I could make the switch to girl clothes.  He's right because I tried getting some clothes for baby girl and I was overwhelmed.  So many choices after the usual 6 racks of boy clothes.  I kind of wandered through the racks for a few minutes and then I returned to my comfort zone.  But I think this might have done the trick!

Thank you to everyone who made this day so special for our family.  We are humbled by everyone's generosity and love.  We are so very blessed my our friends and church family!  We love you all!