Friday, September 21, 2012

Cortisol Testing

This past Tuesday I took the trip to Primary Children's with Noah to have his first cortisol test done.  His endocrinologist wants to see if Noah's pituitary gland in his brain is producing the hormones needed for him to grow properly.  It was supposed to be a quick and easy test but it ended up being a very exhausting ordeal.

We arrived at 7:45 for our 8am appointment in the Rapid Treatment Unit at PCMC.  We registered and were surprised to be escorted to a hospital room within seconds.  The room came equipt with a very clean bathroom, a tv that I didn't get to use, a sink, all kinds of monitors, and a hospital grade crib that slightly resembled the kind of cold white metal crib you see in horror movies.  Except these cribs have drop down sides and the ability to tilt upwards.  Noah was placed in the crib as a very friendly nurse named Debby began to take his temp, blood pressure, and all the other base line states she needed.  This was the easy part and tricked me into thinking that the whole day was going to go quick and be a breeze.  Boy could I have not been any wronger.  It was a comedy of errors type of day where everything that could go wrong DID go wrong.

First the doctor was running late so they could not start until they got signed off by this doctor.  So much for scheduling the earliest appointment thinking we could get started early.  She finally arrived but then decided she should call the endocrinologist to "make sure" they were getting all the tests he really wanted.  Which was a responsible thing to do but also allowed the endo doc to add on a few more tests with extra time consuming instructions. The order was signed off on and it was then that Debby was able to stick my baby with a sharp needle to get his IV in his arm.  One quick poke and it would all be good to go and I could turn on the tv for an hour and we would be on our way (well so I thought).  Debby couldn't get the IV in.  Noah was screaming at this point because she had to poke his left arm then his right arm and just couldn't find a good enough vein in his chubby little arms.  She decided to call in the blood sucking professionals and an entire hour later two phlebotomists came in for round two of he Noah torture session.  40 minutes later, with about six unsuccessful attempts, some blood on the sheets, and Noah's eyes swollen from tears and an IV was finally in.  It was around poke 4 where I started to notice my own tears coming down my face and was about to scream for them to stop as my sweet Bobaloo had almost passed out from the pain.  You have no idea how hard it was for me to thank the blood suckers as they left.  I was just so thankful that an IV was finally in and we could just get this stupid test over with.

Unbeknownst to me, Debby could not actually order the mediation needed for the test until after the IV was in and ready.  So it was at this time that she ordered the shot from the pharmacy and then it was another waiting game for them to finally make the stupid thing.....1.5 hours later!  She let me hold him during this waiting time and I was able to rock Noah and kiss him and holding him next to my heart.  I am trying to just focus on this part because this was the good part. I sang Elmo songs and hushed him as he was still trying to calm down from crying.  We needed this 1.5 hours as much as I wished we could have just walked out of there instead.  It gave us both time to relax and calm down and just be mommy and son. 

The medication was finally administered into his IV after two viles of blood had been extracted beforehand to mark a baseline of his blood levels.  The shot was filled with a generic low grade ACTH drug.  ACTH is the hormone needed to signal the pituitary gland to release cortisol.  Cortisol in turn is the hormone that tells the other adrenal glands (kidneys and such) to to their specific jobs.  If Noah's pituitary gland isn't working like it should then this test will basically tell us that Noah will need cortisol injections to help him grow healthy.

30 minutes after the ACTH was administered Debby came in to collect another vile of blood to mark as the "30 minute marker" to compare to the original blood drawn first.  Another blood pressure reading was needed and that meant another round of her trying to find a cuff to fit Noah and also me maneuvering him all over the place so that an actual reading could be recorded.  It is very hard for them to get pressure readings off of Noah for some reason.  It was also at this time where we were informed that Noah needed to have a urine sample taken to test for Diabetes Insipidus.  He has been tested for this in the past so I felt comfortable with this test.   They had to put a plastic bag around his manhood to collect the sample.  Thankfully they didn't need to do a catheter. This time however they had to use this sticky tape to secure the bag around his manhood to keep it in place.  Last time Noah peed the second his diaper came off so the nurse was able to just collect it without securing the bag to him.  So there he has with one arm braced straight with an IV inserted and tape keeping everything in place.  He had one foot bandaged from an IV attempt as well as another blue bandage securing the heart monitor to his big toe.  Then he had three different Leeds taped to his chest to monitor his saturation levels and other things.  Then on his other foot he had his name tag secured to his ankle and another IV attempt band-aid.  I felt so bad for him lying there and I couldn't hold him at this point.  Debby did bring in a musical crib toy and that seemed to really help Noah feel at peace for a bit of time.  It played one tune over and over and in the beginning I found it soothing but now it is branded in my brain as the soundtrack to Nurses who Torture Noah!

Another 30 minutes went by and the last and final blood draw was taken for the test.  We were done!  Thank you God!

Spoke too soon I guess...or maybe God didn't like me shouting out his name that way.  We were then told we had to wait 60 minutes as an "observation period" to make sure Noah didn't have any kind of reaction to the ACTH.  They could have preped me for this earlier.  It was now past noon, I was starving, Noah was starving since he had to fast for this test, I had to call work where my wonderful boss just told me to take the day off since I originally thought it was only going to take two hours like they told me it would.  Noah was exhausted and so was I.  He started to slip into dreamland and I took this opportunity to give him a bottle now that I had the go ahead.  It took me 40 minutes to get in 5 ounces due to monitors going off and beeping and waking him up.  My arms were throbbing from having to bend on the crib frame to feed him and to also secure his head from falling to one side or the other since I had to elevate the bed to give him his bottle.  As soon as he was fed I sat down on the Asparagus colored vinyl chair and must have dozed off for a few minutes because I was startled awake by Noahs monitor going off for the 100th time.  Nothing to worry about...just a Leed not reading correctly.

Debby finally returned to us at 1:25 to "release" us from the hospital.  She then proceeded to give Noah round three of the torture session but kept replaying the music to hopefully keep him calm.  She was being very careful and was trying her hardest to make it easy for him but ripping off tape, unplugging the IV, cleaning off the sticky tape glue, and slowly ripping off the urine sample bag in such a sensitive area was just more pain that Noah could bare.  Screamfest 2012 happened and I was sure he was going to puke out all of his bottle on me.  She couldn't let us officially go until she got one last blood pressure cuff reading and with me trying to calm Noah down at the same time just didn't work.  I was at least able to pick him up and rock him and bounce him and kiss him and sing to him and it was then when he finally started to calm down...just enough for the pressure cuff to then squeeze his calf and get him going again with more tears.  Poor little guy had enough and I didn't blame him one bit.

We walked out the hospital doors at 2:00pm.  SIX hours later!  Noah fell asleep on the way home and then woke up when I had to stop at a McDonalds to get myself some quick calories.  Thankfully my mom surprised us with a visit to our house where I was able to eat my thigh hugging fries as she got Noah to coo and babble and smile.  I am so thankful to have such a wonderful Mom who is always there when I need her and always knows when I need her too. She even came with yummy heart lifting chocolate in hand.  She left to go back home and Noah and I went to cuddle on my bed where we both fell into a very deep sleep until Jeremy got home and then he spoiled us for the rest of the night :) 

So thankful this day is in the past.  I am finally over it and was just now able to relive it all one last time to write this post.  As soon as my fingers stop typing I am going to delete this memory from my mind and make room for a very happy one that I am sure we are going to experience this weekend :)

........test results are in but the doctor hasn't been able to write his report so I will have to wait for him to call me next week I am sure. 

JUST IN:  ALL RESULTS CAME BACK WITHIN NORMAL RANGE!  No worries at this time for any form of adrenal problems.  Endo doc wants to test his thyroid with a quick lab blood draw the end of October.  GREAT NEWS!

Wednesday, September 12, 2012

Shriner's, Genetics Test, Fundraiser and other Updates

Happy Post!  Glowing Face with big Fat Smile!  Yes...an All Good Post!  (just a few other names I really wanted to title this post)

This is going to be a doooozy of a post since it has been so long and I have much to update on.  I will try to make it short though so as to not bore you with too many words with extra vowels. 

Genetics

Yesterday was officially the three week mark since our genetics appointment and also the day I was told to contact our insurance to see if our appeal went through.  It Did!!!!  This means that Noah is going in for a quick blood draw today and we can save about $5,000 it was going to cost us for this test if our insurance did not approve our appeal for the test.  As happy as we are to get this done we are also very aware that we have a less than 5% chance of it showing us anything (also the reason we didn't want to fork out $5k we dont have for this test).  It is called a SNIP test or also know as the SNIP Microarray test. This test will take Noah's DNA and separate all the chromosomes and find out if any of the 23 chromosomes have any form of deletion or malformation.  According to our genetics doctor it is extremely rare for kids with SOD (Septo Optic Dysplasia) to find a cause through this test but he has been humbled too many times to say they never do.  In the off chance that something is found then it will give us more insight into what to watch out for in regards to Noah's other organs or our future offspring. 

Shriner's

Yesterday was also the day we had our first Shriner's Hospital assessment.  I honestly did not know what to expect and was a bit nervous to tell you the truth.  I so badly want to see improvement in Noah's development so I always get nervous when it comes to visiting places that provide hope.  The place is actually quite beautiful.  You walk into the main lobby and they have this painting on the wall made from bold and bright colors that is really quit eye catching.  You could easily pass time in the waiting room just by staring at this mural.

We had to pick a number and then wait to check in.  They took my insurance card and this is the part that makes me nervous.  I have been told that my insurance will cover 20 Physical Therapy visits a year and since Shriner's now bills insurance this will use up all 20 visits.  However, the cool part about Shriners is that we will never have to pay a co-pay and even if/when we use the 20 visits they will cover all additional costs that my insurance will not.  This is fantastic.  However, this also means that they have to use all 20 visits up front and therefore diminishes Noah's chances of going to this center called Now I Can until probably the middle of next year.   It is only September and so I would like to take Noah to Shriners as many times as possible to use all of the 20 visits we have for 2012.

We met with an orthopedic physician who was really fun and young and talented.  She spoke with us for some time and then said "so what brings you to Shriner's...how can we help you???"  I do not know why but I was stumped by this question.  I responded with "Well, with the help we are receiving with Early Intervention we are still not seeing the results and Noah just isn't developing like he should."  I think that was a pretty good answer cause then she had a full plan for us.  She is "plugging us into their system" as she stated.  They have a Physical Therapist, Occupational Therapist, Speech Therapist, and Dietician on hand that can help us.

Two minutes later the dietician was sitting down with us to go over Noah's nutritional needs.   Looking at Noah you see a chunky little monkey.  However, when you take his length (28 3/4") and his weight (19.3 lbs) and then calculate his overall percentage he is only at 18%.  According to this woman (who had the exact same voice and demeanor as the young female counselor off of the tv show Glee....brochure anyone?) a "typical child should have an overall percentage of 25%-70%".  So basically, under all those rolls Noah is still "underweight".  Crazy!  So he has a very strict eating plan for the next two months and needs to consume 850 calories a day.  In two months we will re-access and go from there. I never thought I was going to have to count calories for my baby and literally watch every single morsel going in or drooling out of his mouth. We have to bump up his calories with good fats.  Ideas anyone????  We are already doing avocado's and olive oils but need some other ideas.

Today I am supposed to call and speak with the woman in charge of scheduling physical therapy visits.  I have no idea how many we can schedule or even what the protocol is yet for Shriner's.  I am trying not to get my hopes up since I do realize Noah is only 10 months old and there is only so many things a young baby can do.  I will keep you posted and let you know how our experience is with Shriners once we are officially in the system :)

Early Intervention 6 month Goal Planning Session

As if yesterday wasn't big enough of a day we also had to throw in our Early Intervention goal planning or IFSP.  Every six months they reevaluate Noah to see what areas we need to work on more and also to see if he has met any of the prior goals.  It is a bit disheartening when they go down the list of goals and you have to keep saying "nope...he still can't do that."  Our first goal session was when Noah was 3 months old and at that time goals were set where they thought he could be standing on his own right now, saying a couple words, rolling all over the place, picking up cheerios and chewing on them.  This was all before he was attacked by Infantile Spasms and therefore is still unable to reach any of those goals.  Our new goals are much more realistic this time.  In six months we hope to see Noah putting weight on his limbs, holding his head up for ten minutes straight, gaining weight, holding a toy for more than three minutes straight, reaching out to grab something, sitting on his own.  I pray that these goals will happen but once again...try not to get my hopes up.  They will come eventually and I really need to work on my patience.

Noah's Fundraiser and Now I Can



Our good friend has started a fundraiser for Noah through a website called fundly (link on the top right corner of this blog).  It took my husband and I many weeks of discussion before we fully felt comfortable with the idea.  Nobody ever wants to feel like a charity case and it is still hard for us to accept the fact that we need financial help.  We are part of what most people would consider "middle class".  We both work full time jobs, have a mortgage, and both have a vehicle to get us to work and run Noah to all of his appointments.  We are hard workers, both have degrees, and consider ourselves to be very positive people.  However, it just isn't enough when it comes to having a special needs child.  Bill after bill and co-pay after co-pay has really taken a toll on us.  There are so many things we would love to provide Noah with....like the ability to walk and talk and eat. In order to achieve that we have to pay thousands upon thousands of dollars to get him into the centers that help him develop in all these areas.  Since we have been denied for medicaid and SSI we are on our own.  We are managing but with each month it gets harder and harder.  This fundraiser is going to be a massive help to Noah's development and about ten times a day I want to just cry because of all the love and support people are showing our sweet little boy.  It is times like this where I wish I could really show our gratitude in more ways than just words.  A simple thank you card just doesn't feel like enough and I have been racking my brain trying to figure out just what to do to thank everyone.

We have decided that Noah would really benefit from a place called Now I Can.  It is a intensive physical therapy clinic that is mucho expensive but really rewarding and we plan on using most of what Noah receives from his fundraiser to get him into this clinic.  Noah is a bit too young right now but next year we are hoping to get him in.  I have done so much research on different facilities here in Utah and this one seems to have the best results.  I can't wait to see what kinds of milestones Noah will be able to achieve once we get some really good hands on therapy for him. 

Noah's Fun Developmental Stuff

This is the fun stuff.  Pictures and cute videos of our sweet Bobaloo.  Last week Noah put weight on his arms for about 10 seconds assisted.  This is huge for us and we are trying really hard to build on this. 



Noah is a laugher and we LOVE IT!  His aunt and cousins seem to always get him going and he thinks they are just the funniest people on Earth.  I happen to agree :)
video

E.L.M.O.....Noahs newest favorite thing.  It was by accident that I even figured this out but it has already proven to be a huge thing for us.  Noah will actually try to focus on elmo and hearing elmo sing makes Noah work harder and longer.  I never knew I could love a puppet so much.  We are only on day three in the Elmo world but I am hoping that I can use elmo to entice Noah to do things like turn his head to see elmo or maybe just maybe get him to make some new sounds.  The video is sideways because it will not let me upload it when I try to change the direction for some reason. 

video





Funny picture I got of Noah yawning.  He just looked cute so I had to share.