Home and Recovering

Ben got home yesterday around 11:30 a.m. and he is recovering like a champ. He is getting Tylenol for pain, but that's it. His poor little cheeks are so swollen (inside and outside)... he looks like he has mumps. It is too early to tell if the drool procedure worked. Hopefully tomorrow the swelling goes down and he feels even better. Thank you everyone for all your kind words regarding the disappointing news. You have no idea how much your support means to us!

Not the News We Were Hoping For

Sorry for the delay in updating -- like expected, we spent a while in recovery and when we finally got to our room we were very busy with Ben. He is doing fine, just not feeling so great. The doctors (ENT & GI) were a little disappointed with what they saw during surgery. I'll try to do my best relaying the news.
GI-
They took a scope of his stomach and intestines, placed a PH probe, and did some biopsies. They found a problem area in the bottom of his stomach that hasn't been seen before. More than likely, it isn't a new problem... just not something they were able to notice before because it is very difficult to see. Ben has a web of extra skin where his stomach empties. His stomach does empty, but probably not the way it should. A regular barium emptying study (which is what we have had done before to test this) wouldn't necessarily show us what we need to know. We are going to have a different kind of xray test done to find out more. Based on those results, they will decide what needs to be done. More than likely, Ben is going to have to have a GI surgery to correct this. Also, GI wasn't able to place his PH probe in his nose. It is now in his mouth which is VERY rare and uncomfortable. They had arm restraints on Ben after surgery so he wouldn't pull out the probe. We took those off right away because it was just too upsetting to Ben. We were better off just trying to keep a close eye on his hands. He is doing much better with it this morning than we expected. We are suppose to hit a button and log every time he either gags (which was pretty frequently considering the tube is in his mouth), vomits or coughs. Needless to say, we are counting down the hours until that can come out!
ENT-
Ben's nose is once again COMPLETELY closed with bone and tissue. This is so disappointing! Ben has had so many awful surgeries to open his nose and only to find out that it is closed right up and he is going to have to go through this again. For the time being, ENT is leaving his nose alone until we can figure out these GI issues (this is why Ben's PH probe couldn't go down his nose). They also looked at his airway and it was a mess. His upper airway is much, much worse than before. Something is destroying his airway (they are suspecting it has to do with silent reflux, his stomach not emptying properly and his failure to swallow his own secretions or anything else). Hopefully the drool procedure will help some (too soon to tell if it is working). We have also been instructed to do absolutely NO oral feeds. Because of Ben's uncoordinated swallowing, this is only making his airway worse. And finding out what is going on with GI will hopefully help. They want to put Ben under general anesthesia every three months to follow the progress of his airway. His ears were also in pretty bad shape. We are going to have to see ENT every 3 weeks and have his ears cleaned out. This is very important to stay on top of or his cochlear implant could become infected. At least this doesn't have to be done under anesthesia.

With all this being said, Ben's trach is likely going to be in for a while and he will have some additional surgeries in the near future. As always, we take one step forward and 10 steps back. Just doesn't seem right that Ben has so much to deal with -- so many things wrong. But at the same time, I'm just so amazed with him that he is doing so well in spite of all he has wrong.

Thursday Morning Surgery

Ben is all set to have surgery Thursday morning at 8:30 a.m. He will be staying over, but will be home on Friday if all goes as planned. He surgery is slotted for 2 hours and 10 minutes (a short one for a change). He will be having a drool procedure (snipping 4 of his saliva ducts), his nose looked at and dilated if needed, a larger trach put in, his airway scopes and GI will be placing a PH probe in his nose for 24 hours to see if any of his stomach contents are traveling back up (we hope not). We are hoping that Ben has a speedy recovery and isn't in much pain afterwards. If the drool procedure works, we might not need to suction Ben every 5 minutes like he needs now (they did say his secretions may be worse after the surgery for a little bit - sometimes it takes a little while for the body to adjust). We have also been told that census in the hospital is VERY high right now and we might have to wait longer than normal in recovery until we are able to get a room and we might not get to go to the floor we want.

Ben's world is opening up!

We just had an amazing weekend with Ben. On Friday, it was beautiful here. It was the first time I was able to take Ben out for a walk in a long time. Because of his facial palsy, Ben always has so much trouble with the sun. Friday, the sun was so bright his sunglasses didn't give him enough protection. He was fussing and trying to hide his head in the stroller. I finally decided to put my sunglasses on top of his hoping that would help. It did and he just looked adorable. I took a picture with my phone so I could share. He is just too funny because he didn't mind them being on AT ALL! We also went swinging and down the slide for the first time (of course he layed down the slide). The slide really cracked Ben up. It was kind-of a scared laugh though.

Ben is also making HUGE progress with his implant. I got chocked up many times on Friday because Ben was hearing things I never thought he would hear or even respond to. He was noticing birds churping, hearing cars drive by (and following them as they drove past) and turned to watch geese fly over us. It was such a big moment for us!

We also had Ben's Aunt Theresa and Uncle Rich in town visiting for the weekend. It was great to see them.

Ben is lifting his head

Ben is really starting to lift up his head when he is on his belly. He really didn't do this a whole lot before and if he did, it wasn't very high and was really quick. Recently, when he is rolling he will roll until he is stopped by a piece of furniture or a wall. When he does this, he gets onto his belly, pushes up his head and looks around. He gets pretty high too. This will really help Ben develop his head control since he still has some trouble with it. Not to mention it cracks me up! I love seeing him looking around. Of course when I try to put him on his belly and keep him there, he doesn't like it... it has to be on his terms. Kids with CHARGE tend to be very stubborn and Ben is no exception. I'm hoping this is the first step in learning how to crawl. All of Ben's movement is making it very difficult though with his feeding schedule. He is hooked up to a feeding pump (and can't go far) 11 hours a day. And he's figured out how to roll out of the barriers I've set up for him. After his surgery on March 15, we look at adjusting his feeds.

Aural Rehab

Ben had his first Aural Rehab appointment this week (to work on his sound detection with his cochlear implant). Ben is starting to do some great listening and will turn to a lot of environmental noises - even his name after I call it five times. Aural Rehab is the first therapy service that Ben gets that doesn't do home visits... so we had to take Ben over to Children's outpatient. We have a standing appointment every Tuesday at 2:00. Let's just say that Ben much prefers therapy at home. He is starting to get a little apprehensive about being at the hospital. When he got to therapy we put him in this little desk chair, which he wasn't too sure about. He then hit his head on the back of the chair and he started crying. It took a little bit to calm him down and he ended up doing his listening therapy on my lap. Because of the chair incident, his mood wasn't the best and any time the therapist got close, touched him or showed him certain toys, he started to cry. Ben always just takes a little time to get use to new people and things -- especially when they are out of his comfort zone of home. Some of the toys she used with Ben we have at home, so we are going to try and do the same activities she did so next time, Ben knows what to expect. We've noticed that Ben is really starting to have an opinion about toys. Some toys we get him, he isn't sure of them and he will hide his face from them. Others he grabs right away and plays with them. Grandma Deb has taught me to take those toys he doesn't like and just set them by him while he plays. Amazingly enough, after a week or so he will warm up to them and start playing with them. For whatever reason, I think Ben just visually perceives certain things as unsafe. The therapist was great with Ben and gave us lots of ideas for home. She is going to be a big help.

Busy Week

This week was a very busy one for us. Ben had many, many doctor's appointments at Children's. I'll just fill you in with a few highlights:

Eyes - Ben was due for his 6 month check-up and since he just had a brain cat scan that showed his ventricles were a little larger in size, the opthamologist decided to dilate his eyes and look at Ben's optic nerves. The eyes are usually the first place that show increased pressure in the brain - and Ben's optic nerves looked great. What a relief.

Development - We also saw Ben's Developmental Pediatrician, who is WONDERFUL! She just plays with Ben, asks lots of questions about what he is or isn't doing. I really look forward to these appointments because she is so knowledgeable about CHARGE and developmental issues. She thought Ben was doing some great stuff. Developmentally, Ben is probably in the 9-12 month range, but he is continuing to make progress... so we are happy about that. She did agree with Ben's pediatrician that Botox injections would probably help him out. Botox can be given to people who have a lot of tightness that is inhibiting their daily functions (Ben's legs are so tight, he has trouble sitting up because he can't straighten them). She explained that Ben's tightness is probably due to the stroke he had right before he was born. The part of his brain that is around the damaged area is responsible for muscle tone. His brain is probably telling his muscles to be tight even though they shouldn't be. From what I know about botox, they give injections into the muscles on a regular basis and then cast those muscles in a fashion that really stretches them out. Botox basically relaxes the muscle and allows it to be stretched. We now have an appointment with Rehab the end of the month.

We are also trying to get a new PT. We have been without for a while since we have had trouble finding one that we felt was a good fit for Ben. Through a referral, we found a private PT who is amazing. She did more in her first meeting just gathering information than all PTs combined. The only problem, she isn't in our insurance network. We are praying it works out. Ben really, really needs a good PT.