Transition into school

Ben's transition into school has been difficult for him (and myself), but he definitely made progress from the first day to the second. The structure and rules are new and challenging for him and I'm confident he will get use to them in time. His teacher and aids are wonderful and very responsive to all my concerns and suggestions. I was by his side the entire first day and observed the second day. Tuesday will be the first day I won't be there - I'm stressing a little! It is so hard for me to put all my faith in others. We've just been through so much together and I'm in tune to all his needs like no one else. Ben and I have spent very little time apart these first three years and he has fought so many obstacles to get here. The school transition needs to be done though because it is in Ben's best interest and I just have to keep on reminding myself that. And ultimately I feel comfortable that the nurses going with Ben can handle him in an emergency. Below is a picture from Ben's first day. He transportation around school is this cool wagon. Doesn't he look so grown up!

Ben's Classroom at MECC

This is the singing/reading time mat - this is what you see when you first enter the room

I tried to get the whole room - it is big!

Ben in front of the door

The play kitchen area on the right of the room

Off the room is this other little room - it is the observation room with two way glass and is also used as the sensory room, therapy room, etc.

Ben's Preschool Teacher - Miss Stephanie

Ben in his Passy Muir Valve

Here is a picture of Ben wearing his Passy Muir Valve. It is the turquoise thing on his trach.

Preschool Here We Come

Ben starts Preschool next Wednesday. At first I was a little apprehensive about Ben starting. But after meeting Ben's teacher, the one-on-one aids and everyone else working with Ben, I am so EXCITED! They are ready for him and already have so many great tools/ideas in place for him to hit the ground running on day one. He really has an amazing team working with him this year and I am so grateful for that! We also have to thank Katie Kauffman and her family for paving the ground work for us (Katie is now a 1st grader with CHARGE in our school district). They have taught the school so much about CHARGE, cochlear implants and children with multiple sensory needs and we are truly benefiting from that. I think both Ben and I are going to learn so much from his team.

Tomorrow we have our final meeting with the entire team working with Ben. It will be in his classroom and he will get to roll around and explore the room before it is filled with his classmates. Still haven't found a nurse for Monday, but I'm still hopeful we will find someone good soon. Tuesday he will have a phase in day of 45 minutes at school and then Wednesday will be the real deal. I'll be with him and the nurse the first day to help the transition for him. The second day I plan on being in the observation room so he can't see me, but I'm there if needed. And the after that, my guy will be on his own (with his nurse of course). How exciting! I'm going to take pictures tomorrow of his room and post them for all to see. It is just the cutest. Now I'll just have to find something to do with myself for the few hours he is gone.

Birthday Party

Ben's 3rd Birthday Party was last weekend. It was a great time. Mike's mom, sister, brother-in-law, their new baby, his dad, step mom and aunt all made the trip from Youngstown to celebrate with us. My mom, dad, brother, sister-in-law and their daughter were also in attendance.

Ben got so many great gifts and he seemed more interested in the gift opening than ever before. He even helped tear a few open. The weather was beautiful too so people were able to get outside and enjoy the day. We had an ice cream party since Ben has shown a liking to vanilla ice cream in the past. I also got some cupcakes and let Ben have a taste of both cupcake icing and ice cream (his first tastes in over a year - since his airway showed no improvement I'm going to go ahead and start tastes again... obviously that wasn't causing the swelling). Once Ben saw me eating and realized I was presenting him with food, he was game! He enjoyed both sweet treats.

Thank you everyone for making Ben's birthday party so great. If anyone deserves a great birthday party, it's Ben! And for those out of towners not able to make it, you were with us in spirit!

Second Opinion

We got a second opinion about Ben's airway from the head of the ENT Division at Cincinnati Childrens. Dr. Cotton did agree with our ENT that it does appear that Ben has an overactive larynx and nothing can be done with it until it settles down. Time will tell. He also thought it was fair for me to request Ben's coanal atresia surgery to be fixed without stents (I found some research on the stentless method working for some kids with at home dilation and steroid drops daily after the procedure). I just really thought for Ben that the stents were causing so much irritation that as soon as they were removed, major scar tissue formed. The entire time the stents were in, he had HUGE amounts of drainage flowing from them 24-hours a day. You may remember seeing pictures of Ben with the gauze contraption I rigged up and taped to his face to absorb the drainage. It was horrible for him (and us too).

The plan is to try to fix his coanal atresia (nasal blockage) even though there are no plans in the future to do his airway. That has been scheduled for October 17.

Here is a picture from the last time Ben has his coanal repair attempted. Poor guy.

Airway News - LONG UPDATE

Whoever said "No News Is Good News" was right! I was much happier before we took Ben to the hospital today. It was a long, miserable day in the OR. Ben was truly an angel, which made it at least bearable - I don't know if I would have been able to take it had he been crying all day (I guess I made up for his lack of crying).

He was suppose to have his head CT and procedures all at the same time, all after he was put under anesthesia in the OR. After waiting two hours in the holding room before surgery (I'll refer to this room as our 2x2 cell from now on out), we learned Ben wasn't on CT's schedule, but only the OR schedule. To make a very long story short, we were told to take Ben (who was in his hospital gown) and all of his stuff (including his attached pre-surgery items) downstairs in his stroller to get his CT. We then had to register and wait to be called with everyone else in the waiting room. He got the CT without sedation or anesthesia (thank goodness Ben was still and cooperated) and we carted him back upstairs to our "cell". I pity anyone who came in contact with us during that time frame. We are waiting to hear back from Patient Relations to see what happened and what we need to do to ensure this never happens again.

His airway scope showed no signs of improvement. SHOCKING! He has been doing so well, the amount of trach suctioning is so much better and he is able to make noise now... I thought at least it would be improved. No such luck. The ENT doctors don't understand and their only suggestion is to wait until he is much, much older and hopefully it will resolve on its own. I'd like to see if we can get another opinion. I'm just not happy with that advice... something has to be causing this and if I wait 10 years to find out we could have done something earlier I would never forgive myself.

I did ask about a Passy Muir Valve (see below for more information - click on picture to read the text) so Ben is able to vocalize more. They didn't think he would be successful with one considering his swelling, but I think they humored me and sent an ENT nurse down to try during recovery (which the chances of passing right after waking up from surgery are even worse!). A few modifications had to be made, but Ben passed!! Let's hope that lets him get out more of his sweet, little voice.

School Nursing Update

We have a school nurse for Ben for Tuesday, Wednesday and Thursday. And the people we have for those days I feel very comfortable with. We still need someone for Mondays, but I feel much better only having one day open. But I am still looking for someone for Monday's, so send any good nurses our way!

Starting to Stress

The good news is whatever made Ben so sick last week only lasted until afternoon. I switched him over to Pedialite for the day and feed him at a lower rate (which is funny to even say considering he eats so slow on a regular day) and gave him less total volume. It worked and by Wednesday he was just about back to his old self. Hopefully the vomiting didn't do anything to his airway to affect our scope on Wednesday.

Speaking of the scope, that upcoming procedure is now starting to really stress me out. I have the usual stress of just putting Ben under, trying to start an IV on his little fragile veins and everything going ok. My major stress is about the results though. We have waited almost tow years for this scope. Ben hasn't had any major illnesses, his secretions have improved greatly, we haven't done any feeds or tastes by mouth, Ben has grown a lot and he now has the ability to make noises. If his airway is still inflamed and unable to be repaired because of that horrible inflamation, I've pretty much come to the conclusion that his trach will be with him for life. That is news I'm not quite ready to hear and afraid of hearing on Wednesday. I'm hoping and praying for the best though and I know the ultimate outcome is out of my hands.

Wish I Knew

Ben woke up this morning in a full fledge crying fit. It was about the time I relieve the night nurse, so I was able to watch the whole thing unfold first hand. I picked him up and tried to comfort him... didn't know if his ears were bothering him (unlikely to cause this kind of reaction), wasn't feeling well (had a great nights rest with great sats all night) or just woke up grumpy/scared from a bad dream.

A few minutes after holding him and turning off his feeds, Ben started vomitting. Since he eats 80% of his daily food at night, he has a super full belly in the morning. He vomitted twice bringing up a LOT of food (probably 300 mls total). He then had super bad dry heaves for the rest of the morning. I'm so thankful my mom was here to help. It took both of us to keep up with the constant suctioning of the mouth, trach and ears (yes, vomit comes out Ben's ears since his nasal passages are closed)and the comforting of poor Ben.

He is getting a small amount of Pedialite through his feeding tube and seems to be feeling better. He is even napping right now. The true test will be when he wakes up. It is just so hard to know if he simply got upset because his belly was full. And that hard crying started the whole process of vomitting. Or if he caught some bug at the doctors office yesterday. Or if he just is having trouble tolerating his feeds again.

Ben has never had a fever and I don't think is able to, he doesn't get runny noses because of his closed nasal passages, his secretions from his trach never change color and the amount of them is different every day. He almost always has an ear infection so that doesn't help, he can't tell us if he feels too full, has a headache or body ache. I wish I knew what he was feeling so I could help him with treatment. Poor little guy... how frusterating for him.

Updates

Hi everyone. Here is an update on the Russo household.

Still no day nurse to take Ben to school on Monday, Tuesday and Thursday. Ugh, I hope we find someone soon so they can start orienting with Ben and get to know him before school starts. Does anyone know anybody? Please spread the word.

Ben is still a "go" for surgery on Wednesday the 13th. He is having a Head CT, airway scope (MLB), ear cleaning and a look at his saliva ducts and possible draining of them (when Ben lifts his tongue you can see his ducts have filled up and are the size of Skittles - possible complication with his previous drool procedure). We are so hoping for a good report of his airway and are able to start surgery to get his throat and nasal passages fixed.

Ben is a rolling machine again. After 7 months of no rolling after his leg break, he is back to his old rolling self again. Yay!

Ben is going to turn 3 this weekend! I can't believe it. We are waiting to have his birthday party until after his surgery so Ben can have some licks of ice cream. Happy Birthday little guy! You amaze me everyday and I'm so inspired by you.

We have been finishing our basement so we can have another living room space. I'm happy to report that it is getting close to being done. It will be great to have that extra room! I will also have a dedicated space down there to do my scrapbooking.

And last but not least, Ben had a pre-surgery physical today and got a clean bill of health (minus an ear infection). He weighed in at 29 lbs! I'm going to need a crane to lift him soon :) But Ben's doctor is insisting he goes to school with his oximeter hooked up. This is in addition to his emergency trach bag, suction machine, and backpack we already have to take with him. And being hooked up to his oximeter would only give him a few feet of freedom. I am absolutely against it because I want Ben to develop and live a happy life without so much medical equipment. He said in my care I can do what I want but when with a nurse, he refuses to change the orders. I'm still fighting this battle. I understand his concern, but I wouldn't have a nurse with Ben that I didn't trust and kept on eye on him constantly.