Expect the Unexpected {The next set of tests and results}

The next part of the story is a bit of blur {as is much of this whole ordeal has been for me} but I will try to be as clear and accurate as I can be.

After we left the hospital for the 2nd time…

We came home feeling a little better, yet a lot more confused.  The doctors and neurologists viewed the EEG as our sweet boy was in the PICU yet did not see anything that indicated seizure activity so they were feeling as though these “episodes” were either isolated OR not seizures at all.  They told us to follow up with the pediatric neurologist.

The follow-up…

We indeed followed-up with our little boy’s neurologist {the one at MSU}.  He was happy to see no seizure activity on the EEG, but wanted to follow-up with a few more tests.  He referred us to a  Pediatric Gastroenterologist as well.  I was frustrated that we had another avenue to go down by seeing another doctor, but I had to trust the doctor and my mom assured me that the more tests that our little guy receives the more things we can rule out {or get answers}.

The Gastroenterologist ordered a Barium Swallow Test

Unfortunately I could not attend this test due to an obligation of watching a friend’s kid that day, but my husband took him.  They were testing for GERD as the symptoms mimic a seizure.  He was not too fond of the serum that he had to drink so they had to give him a syringe full of it {I am somewhat thankful that I was not in attendance for this one :)}

The results came back for this test as negative, he does not have GERD

A “Simple” Set of Bloodwork…

The Gastroenterologist also ordered a set of blood tests in order to check for allergies {which he had already been tested for in the past, he has a wheat, peanut and sunflower allergy}.  I took him, which was no fun and I cried right along with him as they stuck his itty bitty arm.  I was NOT at all concerned about his bloodwork results due to the fact that he had already had bloodwork done a few times in the past and I figured it would show us nothing new but then I got a call…

Our little family of 4 was at Applebee’s for dinner {most doctors don’t make these types of calls after office hours and usually a nurse calls} when the doctor called.  He started by asking if Lincoln {my son} was OKAY?  I replied with a little hesitation because I could hear in his voice that maybe he was not suppose to be, but I said, “he seems okay”.  He told me that we need to keep him out of public places and keep a close eye on him because his white blood cell count was extremely low {I knew what that meant and it was NOT good}.  He said that he was going to be admitting him into the hospital and he would be calling me back.  Panic mode let. me. tell. you.  We packed up and went home to prepare for our hospital stay.  I melted on the couch as soon as we arrived to our house and started to sob.  I had the worst in my mind, this baby had a tumor which was causing these “episodes” and he was going to be taken from us.  The doctor called back and changed his mind a little.  He told me to watch him for the next 12-hours.  LUCKILY he got sick within the next few hours {whew} and it was JUST a coincidence that the bloodwork was done right then {THANK GOD!}   This did set him up for bloodwork being drawn DAILY for the next twoish weeks…

MRI

An MRI was scheduled to be done while the little guy was in the hospital, but they sent us home before he could have it done {I think they were understaffed and he was the least critical case}.  SO the MRI came a few weeks after our departure from the hospital.  I took him to this one.  They allowed me to be with him basically through the entire process.  I held him as they injected the first part of the and he instantly started to laugh and become loopy.  I was not sure if I felt like laughing or crying?  I was sad that my little man had to be put through all of these tests, but knew that they were necessary.  I had to hand over my baby boy to the nurses and stand in the doorway of the MRI room viewing them get him prepared for the procedure from a distance.  He would turn his head side to side looking at each nurse laughing hysterically, it kind of eased my mind {comic relief was in need, thank you baby}.  After he was fully sleeping and ready for the procedure, a nurse led me out of the room leaving my little man.  I sat in a waiting room all alone waiting for the doctor to come get me {this seemed like an ETERNITY}.   About 45-minutes later someone {blurry} came and got me saying that the procedure went as planned.  The little guy was laying on the bed as I followed the nurse up to the pediatric outpatient area.  We were able to leave about an hour after, what a little trooper {and manic mama awaiting the results}.

I received the called a few days later with FANTASTIC news, no tumor in sight! 

A Return to U Of M…

I was excited to return to U Of M with a few results, another episode and basically more information to present to the doctor {remember I was not too fond of this neurologist}.  I was actually meeting with the nurse practitioner which also excited me because in many of my personal experiences I have found that nurse practitioners are extremely thorough and work just as good {if not better} than the actual doctor.  She was in fact all of that.  She took all of the information down, asked lots of questions and checked over the baby boy thoroughly.  After the exam and questions were over, she left the room as she informed us that she would need to call the doctor {oh boy} and let her know all of the information that she collected.  She came back and looked a little annoyed in a way, but told us that the neurologist still believed it was GERD {remember, he had that test done and it came back NEGATIVE}.  I was extremely frustrated but asked if he could have a sleep study which was what she said she was going to suggest any ways.

A Trip Back to the Gastroenterologist…

We returned to the Gastroenterologist after a few tests and I was feeling like after those we would be done with this doctor {I liked him but thought since the tests were NEGATIVE, there was no need} I was wrong once again.  He brought up that the little guy could have EE disease {Eosinophilic Esophagitis} it is a rare disease but it can cause digestive issues, has a link to the allergies that he indeed has and could be the reason for his “episodes”.  So, he ordered a scope that would need to be done in the outpatient clinic at the hospital…

The next week we arrived at the hospital for this scope.  He had to be put under {yup, the 2nd time for this little guy}.  I got to go back to the surgical room with him until he was asleep {it was fast but he and I both shed a tear}.  The procedure only took about 30 minutes.  A nurse came and got him and took me to the recovery room.  The nurses kept telling me how handsome he was and how good of a little guy he is {made my day}.  I held him as he woke up, what a sweet yet emotional time.  The doctor came and spoke with me on what he knew thus far just with his blind eye.  He said he did see some irritation in a few areas and wanted to start him on medication for a bit and see him back in the office in a month {NOT done with this doctor yet, but he was nice and treated our baby well}

Then a call came…

The nurse from the Gastroenterologist called and wanted to speak about the results from the biopsy taken during the scope.  She let me know that he did NOT have EE disease {yay!} but he did have SEVERE acid reflux and needed to up his dose on the medication prescribed the day of the scope.

U Of M Sleep Study…

We arrived the sleep “hotel” at U Of M a few weeks later.  Basically this is a REALLY NICE hospital room.  They hooked him up to an EEG and a few tubes {sorry I am not a nurse and do not know what it all entails}.  This was an alright night of sleep for the little guy.  He kept his probes on his head and tubes in his nose {success!}.

I did not receive a phone call from this study {it was in September} for weeks, so I followed what most doctors have told me in the past, if you don’t hear anything then the test came back negative.

Then I received a call…

This call came in November.  The nurse called me and said, “I have talked to you right about the results of Lincoln’s sleep study?”  My response was, “Um no I don’t think so” {was this pregnancy brain?}  She was VERY apologetic saying that she had thought she had called me {I was a little annoyed, but kind and understanding}.  She let me know that the results from the sleep study indicated that he had sleep apnea and need to see a Sleep Doctor {I know, what the heck is a Sleep Doctor?!} and we would go from there.

LOTS of tests, not too many conclusive results and still not really any answers.   If you are frustrated yet, imagine how we feel!  There is still a bit more to catch you all up which I will do coming up!

Thanks for stopping by!

~Kelsey~

 

 

 

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