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

Tuesday, February 15, 2011

February 15, 2011

I feel as though a lot of craziness has happened since my last post. We had a good appointment with Neurology. They didn't argue with us at all about dropping Benjamin's neuro meds. They decided we should start with the Neurontin. We gradually decreased his dosage, and he was completely off after about a week and a half. So far, we haven't noticed much of a difference with his eyes. We're going to slowly start to wean him off the Clonazepam (Klonopin), starting today. He probably won't completly come off until the beginning of April (it has to be that slow). Hopefully we'll start to see him gain some strength in his neck and upper torso after we get rid of this one. It's so sad that he's 11 months old and he still can't hold his head up for more than 3 or 4 seconds at a time.

He's been more irritable than normal lately and I don't believe it's related to the lack of Neurontin, even though the purpose of that med is to treat irritability. He's definitely teething and it almost looks like he's going to get quite a few at once. I can't feel the "points" yet, but there's a lot of whiteness going on and a few large bumps.

Although the Pats didn't play, Superbowl Sunday was memorable for us this year that's for sure! We don't know how it really happened, but Benjamin managed to remove his g-tube without his hands! I have a feeling he arched it out. It was due to be replaced soon anyway and we think the balloon that's used to keep it in his belly was leaking. I have to say we handled the situation beautifully... I had envisioned this happening at some point, and thought when it did mass panic and a lot of screaming (on my part) would ensue. This is basically what happened:

Ryan: (In the process of trying to calm Benjamin down) "Ummm, yeah, okay... Jackie? The g-tube's out!"

Me: "Huh?"

Ryan: (Walking toward me with Benjamin in one arm while holding the g-tube with deflated balloon in his hand) "Benjamin managed to get his g-tube out."

Me: "Are you kidding me?" (I go into auto pilot, grab baby, put him on his changing pad, slap a piece of gauze over the open hole in his belly and tape it down like crazy, hand baby back to dad) "Okay, take him to Children's! I'll stay with Jadyn."

Ryan: (Grabs the replacement g-tube the therapy company sent to us that we were supposed to take to Dr. Buchmiller for her to put in) "Well, we have the replacement g-tube... I'm going to do it myself!"

Me: (Looking at Ryan in horror) "Are you out of your mind??? We haven't been shown how to do this yet!" (Grab g-tube box out of his hand). "Go turn the car on so it's warm, I'll grab Jadyn and we'll all go to the ER in case I need to feed Benjamin." (If I had actually thought for a second I would have realized I couldn't feed him until the new tube was placed because the milk would have just leaked out of his belly.)

Jadyn: "What's going on? Where are we going?" (I explain what happened) "Can I see it?? I want to see it!!"

We were in Children's in record time (less than an hour) and we were told the g-tube hole had already started to close! We were there for about 3 hours because the ER docs had to contact surgery to figure out which dept. was going to put the tube in. They explained to us that this replacement was a little more complicated because the new tube is the next size up and it had to go through a small amount of vascular tissue. Thank the lord Ryan didn't decide to play doctor at home! Jadyn, god love her, was literally standing in the middle of all the doctors so she could see the action. I was in the back of the room because I couldn't bare to watch and she kept asking if she could look at the hole again!

After pool therapy the following Friday, we noticed his g-tube site looked purple/red and blistery. We thought, hey we're at South Shore, might as well take him down to the ER and have it checked out. Big mistake. I asked at the desk if they thought we would be there long because we would go to Children's instead. They said we would be called right in and a doc would take a look at it. We waited for about half an hour and were only called in because I told them I needed a place to feed Benjamin. We ended up waiting for almost 4 hours to see a doctor. We had Benjamin in his carseat and we were ready to walk out when he finally came in. He thought it didn't look that bad and we got a prescription for a cream that basically did nothing. I don't think I will ever take either one of my children to that ER again.

This morning I took Benjamin to see one of the Children's surgeons who runs a clinic out of South Shore every Tuesday. He was wonderful. He took one look at the site and said the blistery looking area was some granulation tissue. He recommended treating it with a silver nitrate stick and that's what he did. He burned the area before I could even comprehend what was going on and that was it! His skin around the g-tube is now black which I find very disturbing. Benjamin didn't like that experience so much and basically screamed the rest of the day. We get to repeat it again next Tuesday. I'm so looking forward to that.

The icing on the cake was the unexpected call I got today from one of Benjamin's Neurologists. At our last appt. they recommended he get an MRI when he turns one. We reminded them that he has that piece of wire stuck in him from when they tried to get his central line during his last big surgery. They said before they booked the MRI, they needed to follow-up with surgery about that wire because it may not be safe for Benjamin to have an MRI. Well, come to find out (from my conversation today), the wire, is actually stuck in his vein and it has the potential (although unlikely) to travel to his brain during the MRI. They went so far as to call the manufacturer of the wire and this company could not gurantee 100% that this wire is MRI compatible. So, since this MRI is nothing urgent, I was told they're going to hold off. That's all fine and well with me, but my son will probably need an MRI at some point and how are we going to figure this out??!! Ryan and I are going to have to push for some answers on this one because this isn't right.