Saturday, January 15, 2011

Goodbye ICU, Hello 10th floor!

Just before they took him back for surgery

In ICU about 6 hrs post surgery

It's so good to finally be in a room now. We got up here around 10:30 last night -just when I thought all hope was lost and assumed we'd be down in ICU til morning. What a relief!
Austin has had quite a turnaround as well. He finally woke enough to actually suck a bottle and his paci. He also had a small amount of banana for breakfast too. I was really worried about it coming back up, but he was able to keep it down until it was time for his oral steroids. I can't imagine what that must taste like because he's vomited both times after getting it. As soon as he tastes it, he vomits.

So, I started the first two paragraphs earlier this morning. One of the neurologists came in while I working on this post, and four hours later, I'm finally getting back to it. There's been a few changes since then.

We are pleased to see him alert enough to take a bottle and able to eat...but...I just wish he could have kept it all down. He kept the banana down and the other fluids he was getting, but not his lunch. He'd only had a few bites and about 5 oz of water, but it came right back up. They gave him some Zofran and he was able to take his meds after that mixed in a little grape juice. So far so good.

He's also been having a few more twitches and jerks since then, and I'm afraid to say they are most likely seizures. The attending neuro actually witnessed one and she agreed.

They also came in and took the dressings off his head. The incision is much larger than I thought, but they are pleased with how it's looking overall. There is a little swelling, but it's not overwhelming at the moment. They warned me that today and tomorrow will probably be the worst of it. It seems to gradually getting puffier since this morning. When neurosurgery came in this morning, they said if all goes well, we may be getting discharged either tomorrow or Monday.

That was before the vomiting and discussion with neurology. They want to do an EEG Monday to get an idea of what's going on. It's a little late for anesthesia to still be having many effects. They are still not dramatic or prolonged seizures, mind you. We've seen zero of those. But, we still need to know what's happening. Our attending was not surprised and said she wouldn't be surprised if this was still going on two months from now (even though she said what's happening now doesn't necessarily reflect what will happen a month or two from now). She was present during surgery and did the readings from the electrode placement. There was still some spiking going on in areas that could not be touched because it was the motor area. However, even with that being said, they are still confident that the majority of Austin's problems were located in the areas that were removed. Even if he is still having seizures, she said she still considers this surgery to be successful. They weren't expecting seizure freedom, but rather major improvement, and they are confident this will be achieved.

I would love to share my thoughts on the subject, but I'm just emotionally drained. I'm afraid if I veer too far from the facts, I'll lose it. I knew I was doing a little too well yesterday and the day before. Reality hadn't hit yet. Today was the day I guess. Maybe it's because he's awake more now and I don't see my Austin. Elaine, you were right. When he was sleeping 99.9% of the time and had the dressings on his head, it just didn't seem as real. Now, my nerves are on overload. Trying to figure out what certain looks and reactions mean..whimpers, groans, and whines...movements...the vomiting...and every single time he looks into my eyes, I want to cry. I feel so guilty and afraid of what he may be thinking, and wondering if he thinks I failed him. I'm Mommy. I'm supposed to mean protection, love, and security to him. But, I was the last person he saw before he went to sleep in a safe world. And the first person he saw when he opened his eyes when the world he knew collapsed. Is this normal? I so hope that once he starts recovering a little more and gets back to himself, the guilt won't be so overwhelming. He has no clue we're only trying to help him.

Okay, I can't go anymore on that...ugh.

There's still so much to say...I'll try to get it posted soon. And some photos. Here's a couple for now.


Sophie's Story by Elaine said...

Yes...your feelings are perfectly normal. You are under a lot of stress. You are dealing with it in the way you can. Everybody deals with it differently. For me, the guilt comes in waves. Good days = less guilt. Bad days = more guilt. I would tell you that you have nothing to feel guilty about (which you don't) but I know that won't help. Because you are his mom and you can't help the way you feel. Allow yourself to go "there" when you can and release some of that emotions and then pull yourself together when you have to. It's a fine line. And you will deal with it the best you can. My last piece of advice... Take it one day at a time. Each day will be a new day. Wake up that morning and tell yourself that you will do the best that you can today and that yesterday is gone and tomorrow is not here yet. Love you.

Jamie said...

Just be Mommy. You are doing great. Things will be OK. Our kids are fighters. One hug and kiss at a time. :)

devon said...

I cannot imagine the stress you are feeling. I know you are a wonderful mommy, I have seen you in action. Praying hard for you and for the strength and peace as you are in the trenches so to speak. Love the picture of Austin, such a sweet little face.

aRtcHixX said...

I can't even imagine the physical and emotional beatings that you are taking. It sounds like you are doing amazing! I sometimes have to tell myself - a day at a time, but at certain moments in life - I even take it further -
If I can make it the next five minutes...
Sending you some more prayers of extra strenth and some peace of mind and soul.
Big hugs of love and support!!

happy's mommy said...

Elaine said everything I was thinking...but better than I could.

One day at a time...