Friday, January 14, 2011

When Push comes to Shove... I'm a Shovin!!

Several things have been going on with the twins lately.  Almost to many things for me to even process how to proceed.  They were seen in November by ENT to review a sleep study we had done. Both boys have been found to have a mild sleep apnea.  Isaac's sleep apnea is obstructive apnea due to very large tonsiles.  Caleb's apnea is central apnea.  We are to follow up with the sleep study doctor for a second opinion on getting their tonsils out now or holding off.  Also at that time both boys have had enough ear infections for the year to qualify for tubes.  The ENT (who I love!) decided that since Caleb was due to go under anesthesia for dental work, he would go ahead and coordinate tubes and teeth and give Caleb another set of ear tubes.  Isaac on the other hand, he felt the risk of putting him under outweighed him having another set of tubes right now.  Fast forward two months and the poor bugger has had fluid on his ears since early December.  He's had two major ear infections, been on antibiotics once, two shots of rocephin and one ER trip.

Part 2.  We visited the eye doctor in early December.  At that time we were surprised to hear that the eye doctor has seen some optic nerve damage on both boys right eyes.  The twins have been experiencing some new self injurious behaviours lately.  They are poking their eyeballs... literally fingers in eye sockets kinda eye poking.  The eye doctor said that it was important that we get glasses back on the boys and perhaps that would prevent them from poking as much.  Their perscription had changed so much from our last appointment and she felt that was why they were throwing their glasses off again after finally getting them to keep them on all the time.  She was right!! We have had glasses again for about three weeks and we are gradually building up the boys wearing them more and more and the eye poking has pretty much stopped.  BEFORE the eye poking another sensory issue we have had with both boys is head banging.  The kind of head banging that would send a mom running to see if their child knocked themselves out cold from the hit.  Isaac will run from a 6 foot distance directly into the wall forehead first and knock himself back on his can.  Rarely does he cry.  Its like he's getting something out of it other than pain??  The eye doctor listened to this and also was concerned that maybe the headbanging could have resulted in the optic nerve damage so we are set for a sedated MRI to look at their brain and their eyes.  It was originally scheduled for next week, January 20th, but the scheduler overlooked something and double booked the boys.  The MRI has now been rescheduled for February 4th.

When I had the MRI department on the phone I had asked them if since Isaac was being sedated for the MRI is there anyway an ENT could come and put tubes in his ears.  They said that the MRI room was not a sterile room and that would not be possible.  So ok, I accepted that and figured Oh Well at least I TRIED.

Now this week Isaac has been head banging quadruple time.. No exaggeration.. if I were to count how many times a day right now we would be over 100.  Ever piece of furniture he walks past, dining room chairs, rocking chair, computer desk.. he bangs his head off of it.  When frustration sets in he runs for the nearest hard thing to ram his head into.. the kitchen cabinets, the wall, the bedroom door... and as a result this week he has a bruise on his forehead.  Rarely does he do this so much that it creates a bruise.  Its a small bruise, but a bruise no less.  After speaking to his Autism behavioural specialist today and brainstorming, I think that its become a running pattern when his ears are bothering him.  Last Saturday we had him to the ER and we were told that he has a double ear infection.  He got a shot of antibiotics and we were sent on our way.  I was supposed to go back to pediatrician this week to have them checked again BUT they had a stomach virus going on and I was not about to goto the doctors office and share our germs to get any more.  He is due to go back next week for a re-check from the last infection that did not clear I'm holding off for now.

Today I got it in my mind that I think Isaac's headbanging is to the point of causing him harm.  I think that its time for another set of tubes and I was going to figure out how to get it done.  I called the ENT.  I explained the situation, I explained that he is due to come to Children's for an MRI and I was wondering if they could sedate him in the OR, put in the tubes and then wheel him down to MRI department to do what they need to do there.  The doctor said that would be fine with him as long as we can coordinate schedules with MRI department.  WOW!!  Glad I thought of it :)

So I am waiting for the MRI coordinator to call me back, but its looking good that we can get this done.  I love when I feel like I am truly advocating for my children in a positive way.  So as it goes right now....  Caleb will go for dental work and ear tubes on February 1st, then go again on February 4th for his MRI.  Isaac will hopefully be getting tubes and then his MRI on the 4th right after his brother.  Two trips to Pittsburgh in four days and I sure hope this solves some questions we have about the boys, both with the head banging and the optic nerve damage.

For those that don't know that my husband is a partner at a CPA firm, this is a hard time for us as his work schedule is so very busy.  He is so wonderful about putting the boys and all their Pittsburgh trips first and he does so without complaining even though I think that his office may frown upon him missing work during prime season. (Doesn't happen often)   Let's hope these two trips will be our last until April, but I'm thinking... follow up appointments may be required for both of them.  Hoping for the best outcome in both situations :)


:) Danielle said...

Wow, there is a lot going on! I will be praying for you and your precious boys.

Brandie said...

You have a great plan. I hope Children's is able to get everything scheduled to your advantage.