LOL I will try to make it as short as possible without missing anything.
End Aug - Beginning Sept. = Matthew's blueness was again caused by pneumonia, he will looking fine when we brought him in (no fever etc.) but they did an x-ray to check for enlargement of the heart and found pneumonia. Got Nick and Joe ready for school to start and all of that fanciness, Joey's school is on a planet of their own (get into that later). Joey's school intends to push for the specialized school stating they can not handle his case,
IPRC set for Nov.
End Sept - End Oct. = Nicky starts with nightly breathing issues, starts off as just a PITA, increased all
meds to try to correct and started oral steroids to combat inflammation. Seen by the Complex Respiratory Care Clinic and Chest Clinic (same dang thing only Complex most of the kids have machines) given temp diagnosis of sleeping disorder caused by obstruction and ataxia and his chest x-ray clearly showed lower airway inflammatory lung disease.
Nov-Dec = Nov. 3rd, Nicky is playing with friends and turns blue from head to toe. Since he has just finished eating we assume he has refluxed and aspirated and needs to be checked out. We arrive at Sick Kids and they rule out pneumonia based on the fact his x-ray looked better compared to previous one in which he had pneumonia (we argued this because he had a CLEAN ONE a week and a half before) they did an ECG to rule out and issue with his heart and after 3hrs got the doctor to actually look at it. We seen it and we could clearly see problems with it but we were told it was "perfectly normal", the following day we phoned the Complex Respiratory Care Clinic and they reviewed the info they had and made a diagnosis of "possible H1N1" and started antivirals (Within days we are all assumed to have it). Two weeks later the head of
emerg phones, I think to myself "wow never had a follow up call before" and was happy for a moment that someone cared a little more then usual.
I was in my own world thinking that because after him asking how he was doing and if he's had any more symptoms he brings our world down upon us yet again. "Nicky's heart is too fast, he needs to be seen by a Cardiologist asap" thank goodness I had the car pulled over or I might have hit something! He was referred off to Cardiology at Sick Kids (to Dr.
Dipchand, head of the transplant team, THAT caused a heart attack for us) since that is where most of his doctor are but his ASAP appointment ended up being Dec 15 & 16
th, he was suppose to get an ECG,
holter, and that little hand held heart recorder (it has a technical term
LOL just can't remember it at the moment).
Dec 15
th ECG=Tachycardia (still, but it looks worse) instead of meeting with the doctor on the 16
th like planned (after the
holter was returned) they decided to wait until the
holter readings were back and we had transmitted a few reading from the hand held device before she seen him. His appointment was rescheduled for Jan 15
th, if enough data was collected.
Holters are a fun experience
LOL Matthew pulled the wires twice and Nicky pulled them once, he also spilled juice down himself and one of the things was "no getting wet"....very very fun night!
Joey's school informs me
IPRC went "excellent" and they are modifying his program until he switched schools. (I could not be there since we still weren't clear of H1N1)
Jan. - Feb= We meet with Cardiology and get some pretty good news, though Nicky is suffering from Tachycardia his heart rate remains in the high normal - low, low/mod high rate. The rhythm, the most important part, even though it is faster then normal remains NORMAL, he does not require medication or a pacemaker, he will be discharged from Cardiology and will be followed closely by his team instead. She will see him back if it gets higher or he starts having a lot of full body blue spells, by her the blue spells he was having were caused by breathing issues not heart ones (mucus plug, something blocking the airway temporarily etc.).
Nicky is seen by his family doctor on Jan 28
th, takes just a few seconds before he says "When are we fixing his eyes again?", they are that bad and his vision seems to be taking a beating this time. It is being recommended that he has surgery and uses glasses at least 2hrs a day to help keep the muscles from becoming weak. He goes back to the Eye Clinic on the 12
th and surgery is suppose to be booked that day, we will let you know exactly when asap.
Nicky was assessed by
Bloorview, first step in the long process to get him into their school program for next year, he did an awesome job and aced his first interview!!!!!
Joey's school admits to lying, we get the letter from
IPRC and find out that they told them he is "just a little behind" and doesn't need a special school (mind you the report from his last school, dated in June '09, said that he is at a gr 1-3 level, no where near gr 6, don't see how he can go from severely behind to slightly behind in just a few months!) We are told we can not appeal this until APRIL, we also find out that Joey has been unable to take gym (as punishment) since school started and has received detention EVERY DAY since the beginning of school for something that doesn't even involve him (it involves ME and the school, not him). They caused two life threatening low blood sugars and needed to phone the ambulance twice, but still would not take responsibility for their own actions. (If you haven't guessed it he's switching school
LOL getting sick of school playing pass the buck and neglecting to do their job!).
March- Of course we have eye clinic (for eye surgery) and upcoming surgical consults, they will soon be widening his airway, they intend to get rid of the pouch in this throat, tonsils, adenoids, and tissue from the back of his throat to make breathing easier. They are we are hopeful that this will also have some effect on the reflux and aspiration but we wont know for sure until after surgery (hopefully this summer before school since he will be down and out for up to a few weeks).
=P and yes I will start updating this more often, you people all complain to much about the e-mails and it's too much work to make sure I got you all
LOLEdit: LOL guess I forgot to add the most important stuff eh? Mike's CT finally went through as of Oct 26th 2009 he is now officially Air Force and an Officer =P mind you he still had people e-mailing him calling him MCpl until the middle of December lol We also moved to the other side into a 4bdrm Q (full house) it is huge and we have a huge yard now (front and back) that we don't have to share. Mike is doing his home study soon and is being posted for OJT (without us) and is off in Jan '10 for him big course. We wont be posted together again until after his course is done in Aug '10, so we are looking at a whole year without him =( We aren't telling the boys until it gets closer but hopefully his OJT is in Trenton or Borden so he can at least visit often. We have no clue how much time he will have off once he goes for the actual course but it's only a few hours away from home so either we can visit some weekends or he'll come home for a few. Our first choice for posting is still Comox, cross your finger and hope we get it, it would be a wonderful posting for all of us!
