The Best Laid Plans...

Last Sunday, we brought Gideon in to the ER and they sent us home with medication and a pat on the back.  Sunday night Gideon woke up with a fever (101.7- not a radio station).  With some Tylenol, cold compresses and a dip in the sink, his fever came down.  He woke up with a very mild fever but seemed better on Monday.  We went down to London, thinking the Geneticist would be able to tack on some extra lab work for us but when we got there, the secretary just handed us the requisition and told us the doctor wasn't expecting to see us.  After all the lab work was drawn, we went to the cafeteria for lunch.  Of course Gideon threw up everywhere while John was bringing Alex to the washroom.  The lady at the table beside us was so kind and rushed over to help us with a pile of napkins.  She even wiped my boots saying "Be careful you don't slip".  Gideon and I were both drenched.  That was our cue to go home.  Luckily the drive was good and there were no weather concerns.

Needless to say, after a fussy night and his refusal to eat, I brought him to Owen Sound where they admitted him.  His O2 stats were in the high 70's to mid 80's so they had him on a little oxygen and they hooked him up to an IV to get him medicated and hydrated.  The pediatrician on call was really good with Gideon.  He introduced himself by touching Gideon gently while talking to him.  He even asked the staff to make a sign for Gideon's room.  I have to say it was above and beyond!

Although it wasn't a long stay (we got home on Thursday), it feels good to be home.  I know Alex is really happy about it too.  The antibiotics seem to be doing their job and Gideon is on the mend.  There is suppose to be a referral for a pulmonologist coming our way too, so maybe there will be some more investigations into his repeated lung infections.

So I guess it was just another normal week in our little house.

Pop Quiz

1. What did Gideon's latest trip to the ER reveal?
A) Pneumonia
B) Asthma
C) Virus
D) All of the above

2. What did the ER doc try and discharge us with before requesting a chest xray?
A) Bad cold
B) Viral Illness
C) Over Zealous mom
D) All of the above

3. How did Gideon present in the ER?
A) O2 levels ranging from 78-95%
B) Lethargic and fussy with laboured breathing
C) Vomiting in the room
D) All of the above

4. What did the doc say when she discharged us?
A) Take these steroids and antibiotics for the next 4 days
B) Come back if he is still vomiting
C) I don't think we should do any lab work cause it will only cause him more discomfort.
D) All of the above

If you answered D to all of the above you win.  Good job winners.

My poor little Gideon is sick.  He's not able to sleep.  I can't console him. He's throwing up.  His feeds are small.  We are suppose to see our geneticists tomorrow to have our blood work taken for the genome sequencing test.  If we go, I'm going to ask her to tag on some lab work.  It's so frustrating when an ER doc who doesn't know your son looks at you down her nose because you don't have a medical degree.  If I come in saying my son has a history of aspiration with pneumonia, along with asthma and I am concerned about his O2 levels don't look at me smugly and say his O2 levels were fine when he presented at triage.  I'm sure they improve when he is sitting up and screaming because a strange lady is poking him with a thermometer.  Lots of air coming in while his heart rate sky rockets is bound to improve the O2.  What I'm worried about is when he is in supine position, coughing, and too lethargic to even open his eyes all the way.

The thing is that Gideon still does not have a diagnosis.  There are many things out there that can present like a "viral illness" and really be caused by something systemic.  I really am happy that we can try fighting this thing in the comfort of our home and not be admitted but there is an anxiousness about it all.

The Plan: We'll see how tonight goes.  If he's up for it in the morning we'll head down to London to see our geneticist and try to have some lab work done on him while drawing for the genetic test.  If he's sick as a dog, the London hospital is not a bad place to be I guess.

I hate lung infections         

Yeah Yeah Yeah!

I just received an email from my professional organization CHIMA that they will be willing to waive a large chunk of my Continuing Professional Education credits for this term because of my extenuating circumstances! With out these credits, I would no longer be eligible as a member of my college.  I only need to obtain 1.5 credits by the end of the month and I can continue being certified as a HIM.

My foot is still in the door!

Put a Pancake in My Pocket

This morning while helping to get the boys out the door to daycare, Alex (my three year old) made me smile.  They have to leave the house before 7am so John can make it to work on time and this means breakfast for Alex is a bit rushed.  Often he has to bring half of it in the car with him to eat. (This morning he had only eaten one pancake before it was time to go.) He had a drinkable yogurt in one hand and a toy airplane in the other.  I stuck a banana in his right coat pocket and asked if I could put his airplane in the other so he could hold his second pancake.  He said he wanted to hold his airplane and didn't want it in his pocket.  I asked if he could hold both the airplane and the pancake.  He looked at me thoughtfully and said "I don't have three hands - *pause* - put the pancake in my pocket."

So that's what I did.

Another Therapy Session

Today is Wednesday.  This means that the boys are both in daycare and I am home alone.  I've done the dishes, put some laundry away, did a devo, and tidied things up, so now it's time for some *relaxation therapy. 

*Relaxation therapy = Listening to the Decemberists, drinking coffee and playing with some water paint in the beautiful sunshine coming in through my window.

This is distracting me from my worries.

- Gideon threw up again yesterday at daycare and his coughing and breathing are not exactly on target.  We are seeing our pediatrician today.  I really hope the pneumonia is not back again.

- We saw genetics last week.  We have now applied for approval to have the "Whole Exome Sequencing" genetic test funded.  This will take months.  Once we have approval to have this test covered, we (John, Gideon and I) will all submit blood samples to test.  The results of this blood test can take up to a whole year for results.  And so the wait continues...    

- We  had our first consult with a neurologist last week too. We looked at the MRI he had in Sept and over all there are not any really big structural abnormalities.  This is good.  What is worrying is that his myelin sheath (the nerve/axon coverings) in parts of his cortex are not quite the thickness they would expect for someone his age.  This could change the speed of the transmissions coming to or from his brain.  This change in speed could result in numerous different outcomes-  Behavioral changes, comprehension/learning difficulties, ability to focus etc.  The thing is though that these nerve coverings are not fully developed until around the age of two so this means there could still be some changes/brain development to occur.  She has recommended another MRI.  There was also the suggestion that we should keep our eyes open for possible signs of Gideon having a seizure- not necessarily the full out shaking kind, but the more subtle type that could look like spacing out, repeated muscle tensions or reflexive movements.  If we suspect something is going on than we should have an EEG done.  

And so I turn to my distractions.         

What are your distraction techniques, that pull your eyes and mind away from the chaos that life meets? 

Cuteness Therapy

Sometimes we just need a little cuteness to help us through the day.

Asthma now too?

Gideon was hospitalized again last Wednesday with a possible aspiration pneumonia and an asthma exasperation on top.  This is news to us.  We didn't know that he could have asthma.  He even stopped eating for a day.  I think the aspiration occurred while he was vomiting over Christmas.

We are home now.  It always feels so good to come home.  Even Gideon seemed happier to be at home.  This means more antibiotics and more puffers.  So far he has only vomited once since we've been home (unfortunately it was right after he had taken his antibiotics)  and he has been sleeping lots.  He also has way more energy since before the hospitalization and is moving and vocalizing more.  His feeds are still so-so but I think over all he is on the up- I hope.  

I wish I knew what was making him have these vomiting episodes.  Is it an imbalance?  Is he just more prone to picking up bugs?  Does he have an allergy? Is there a structural issue?  Is his gagging leading to vomiting due to an oral sensory issue?   Is the asthma making it harder for him to breath thus exasperating his aspiration and inducing a vomiting session?  Or maybe it is a combination of all of the above?

I'm always looking for answers- but I need to come to a point of acceptance that sometimes life doesn't hold any; That there are unknowns out there that are beyond my comprehension and things that will always be unexplained.  This is something I still need to come to terms with.  I need to stop looking and start having faith in Gideon as he is, leaving all my questions behind, moving forward with a healthy "who cares attitude".  Somethings matter and other things don't and I guess I should reexamine these priorities and leave my obsessive Answer Quest behind.  I think this would look like a laid back, living in the moment type of lifestyle that is selective of my passions.