"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Friday, August 31, 2012

August 31, 2012

We've had an extremely tough and trying week. The surgery last Friday didn't go as smoothly as we had anticipated. What was supposed to be an hour and a half in the OR, turned into a lot longer. I left Ben as he went to sleep and it was 5 hours before we got to see him again. My stomach was in knots. As far as what needed to be done, the surgery was a success. However, Ben ended up on a ventilator for 24 hours because he came out of anesthesia an absolute mess. We were in the ICU for 2 nights and spent the majority of the time trying to calm him down while they were pumping him with versed, morphine and some other heavy duty pain medication.

Before the surgery Ben was hypersensitive, irritable and not sleeping well at night and it's only gotten worse. We're up about every two hours trying to calm him down. He's not tolerating his feeds, and the reflux is out of control (during the day and at night). We're at a loss. I've been talking to GI, the pediatrician, and the neurologist to try and figure out what we should do.

As we wait for some answers, all we can do is try to remain positive. I keep telling my little buddy that "we're gonna figure this out!"

Monday, August 20, 2012

August 20, 2012

I can't believe the summer is almost over. I honestly feel like it just started. We've had a pretty uneventful few months healthwise. Ben was off the oxygen completely somewhere around the 4th of July and has been chugging along with no major respiratory infections. He came off one of his neurological meds (Clobazam) the beginning of August, and he's become extremely hypersensitive and irritable. My happy-go-lucky little dude can smile one minute and then work himself into a frenzy the next! I do have dramatic children... they get that from their father (he'll tell you they're all me in that respect, but don't believe him - wink, wink). Anyway, I'm hoping this will subside, but not sure if it means yet another new drug we'll have to add to the mix. Although the seizures are still uncontrolled, I'm not ready to deal with the side effects of a new medication.

Ben is having one more (hopefully it's the last) surgery on Friday. He's having an adenoidectomy and orchiopexy. They may also put tubes in his ears if they see a need. He'll be staying in the ICU for at least one night. I'm thankful they've already decided to place him in Intensive Care given his low pain tolerance. I'm extremely nervous and anxious. The 3rd floor waiting area at Children's is not one of my favorite places! 

Putting all the health issues aside for now, I'd love to tell you how nice our summer was. My kiddos are definitely beach babes. We've been lucky enough to make it down the Cape a couple of times and Ben usually chills in his "thrown" made of sand while Jadyn "surfs" on her boogie board, builds some cool sandcastles, and collects jellyfish, shells and sand fleas. Sand fleas are so gross by the way.

I'm getting sad about school starting. This year Jadyn will be going into first grade and Ben will be starting pre-school in March. Say what?!? He's most likely going to be at one of the Collaborative Schools, unless our town's school evaluator thinks the system can provide all the therapists Ben needs (such a fat chance). One thing I am excited about is a weekly group Ben and I will be joining at the Perkins School for the Blind in September. It's going to be great for both of us. Ben will have an hour and a half of therapy with the TVIs (Teachers of the Visually Impaired) while I get to go to a whole separate room and chat with other parents.

I'll do my best to give an update after Ben's surgery!

Saturday, May 26, 2012

May 26, 2012

Where do I start... well, Ben has been in Children's for 11 days now with a nasty case of pneumonia. If you remember, this past January we got to stay in the ICU for about a week. This time we're about 5 rooms down in the ICP (basically the step-down ICU). The care up here on the 11th floor couldn't be better, and I've loved all the nurses and doctors we've met, but Ben needs to start holding his oxygen so he can come home! I tell you though, sitting in a hopsital all day is enough to drive a person insane.

I thought I may have been certifiable the other day. It was Ryan's birthday, he was holding Ben, and we were having a nice family moment... About half an hour later he went to put Ben in his crib and we noticed his g-tube fell out! Of course this would happen... because we had to liven up the night right? Have a real party. Anyway, I call out to Ben's nurse and she comes over and tells us that they (the nurses) are not allowed to put a new g-tube in. The good part is the parents can do it! That's just fine and dandy if it doesn't take forever and a day to get one delivered up to his room. Knowing how quickly the hole in his stomach could close I asked for a catheter to stick in the hole so it would stay open. Now I have no problem putting a new g-tube in, but the thought of sticking that catheter into Ben made me squirm. After Ryan and I were arguing back and forth with each other saying "You do it" "No, you do it" (while stomach contents leaked out of Ben), my wonderful husband (on his birthday nonetheless) shoved the catheter into the hole. Here's the part where me going certifiably insane makes sense - I was singing and doing a little jig to try and make light of the fact that our poor baby had to wait so long for a new tube and that stomach juices were apparently still coming out of the hole around the catheter and making Ryan's fingers all slimy. However, I should say Ben held his oxygen very nicely for that 45 minutes!

He was scheduled to come home yesterday. I was going over the discharge instructions when he decided to desat to 71. We weren't going anywhere after that. The oxygen delivery was already scheduled to arrive at our house that evening so I took Jadyn home. We had a long overdue girls' night while Ryan hung out with Ben.

I'm not crazy about having oxygen in the house, but unfortunately because Ben's been so ill, he's dependent on it now. Jadyn and I got the delivery last night and I think we were both overwelmed! Not only do we have 3 tanks (a mother tank and two little baby tanks in our living room), we have a compressor which is big and loud. This is what Ben's 50' tubing will be hooked up to all day/night. It constantly creates the o2. Jadyn's exact words: "I do not want this STUFF in my house!" I don't either kiddo, but if we want your brother home, then we need it. We were already told he won't be coming home tomorrow either so please pray that he gets better soon and we're out of here on Monday!

Sunday, March 11, 2012

March 11, 2012

Happy 2nd Birthday to my sweet baby Benjamin and my little angel Stephen. I can't believe two years have passed already. We had a nice day with family, and Ben actually got to try a tiny bit of his cake! How can he eat cake when it's loaded with sugar you ask? Well, he's finally off the Ketogenic diet. I feel as though we gave it a good run, but it had been enough. It wasn't helping the seizures, and it was only making him more and more miserable each day.

In addition to quitting the diet, his neurologist has decided to wean Ben off his Phenobarbital. We were concerned with the fact that he's on too many seizure meds at this point and we don't know what's doing what (I'm honestly not sure any of them are helping). He's had a few irritable days dealing with withdrawal symptoms, but his energy level is coming back. He's trying to pick his head up more, and he kicks his legs like crazy when he's in his bouncy seat.

He's still having somewhere in the range of 40, sometimes 50 seizures a day (a couple of those are spasms which really make me depressed). We're not sure we'll ever be able to eliminate the seizures entirely, but I'm still hopeful we'll find that magic drug.

As usual Jadyn has been so patient and loving towards her brother. She's at that age where she's starting to question everything and I'm not talking about the usual "why is the sky blue?" We pray almost every night and she's been asking some great questions about God and her brothers. Some are easy to answer like "Did God have a cake for Stephen today?" My response "Of course he did!" Others are a little more invloved like "Why did God make Ben handicapped?" I started to get medical on this one, but then I stopped and told her that Ben is a fighter. I continued to tell her that he may have some problems, but he's with us for a reason and he's going to do great things. Not sure if that's the right answer, but it's what we believe.

Here's to Ben experiencing what I'm renaming the "Terrific Twos!"

Sunday, January 15, 2012

February 6, 2012

I've started and stopped this entry a few times because I had really hoped I would have some positive news to share, but Benjamin has had a tough 2012 so far. He acquired his first respiratory virus the beginning of January and we spent 6 nights in the hospital. I have to say, I was extremely impressed with the ICU at Children's. He went downhill quickly and they were able to manage his care beautifully. I think since Benjamin has been doing so well (from a respiratory standpoint) we underestimated how dangerous the implications of catching a cold/virus could be for him. We also had a false sense of security thinking that because he had his Synagis shot, he wouldn't get RSV. Come to find out, his pulmonogist said one shot wasn't going to cut it. But, I'm happy to say he's doing much better now!

We're still battling with the seizures. He's on yet another new med in addition to the diet (yes, he's STILL on the diet) with no change. If anything, they're getting worse again. It's unbelievably frustrating and sad. People ask what we can do while he's having them, and the answer is absolutely nothing. I spend a majority of my day making tick marks on a piece of paper. From the sounds of it, I think his Dr. is planning on starting another medication in a couple of weeks. There are only 1 or 2 left to try so please pray that one of these will work for him. Our little man needs to catch a break. Jadyn and I pray every night before bedtime for Benjamin's seizures to stop. She's one of his biggest supporters. She really loves her "buddy" as she so affectionately calls him now.