Archives for the month of: February, 2010

There is a butterfly on the back of the hats they gave Grace to wear in the hospital – the butterfly signals a new beginning after brain surgery.  Since we last wrote there have been ups and downs – but I sense the new beginning.  Two weeks ago Grace was in the hospital, it was the third day after surgery – her eyes were swollen shut – and Kevin and I would cringe each time we looked at the incision on Grace’s head.  Today Grace was in Sunday School.  Tylenol is controlling the pain she has.  She’ll walk holding onto our hands, but still prefers to stay pretty still.  She’s having maybe four clusters of seizures a day – none of the big ones we were trying to get rid of!  She smiles, makes noise, and giggles.  She seems clearer somehow.  She used to only giggle when having a seizure.  As close as Kevin and I watch her now when she giggles…..it appears to be a giggle – and a giggle only!

There is more waiting to do as we continue this new start.  We are waiting for the stitches to come out, for the activity restrictions to be lifted, for her to be walking about like before, to see how all of this will affect everything else…the diet, the medication, her learning, her communication.

We have been blessed by so many friends and family as we have moved through this process- we owe you a whole blog update just about that.  Its awesome to have a new beginning – but it is because of our first start, and the people who have loved Grace and us that we were able to get to this new beginning.

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We got home last night around 8:30 pm.  It was a forever day.  Yes, we could go home, but we needed formula, and meds, incision care instructions, releases for therapy, bandages for her head, etc. etc.  Kevin swore what we had brought had multiplied three times and we would never get it all in the car….but we did!

When we got home last night I put Grace in her room on the floor and went to work unpacking what we needed for bedtime.  Hoover galloped into the house  – and ran to the doorway of her room  He knows that he is not supposed to go in there….but he looked at me – ran into the room – gave her a kiss and a smell and then ran right back out.  He settled in for the night shortly after that.

Today we found ourselves tired…anxious…and trying to get things straightened around.  We wanted to be sure we called the right people, set up the right follow up appointments.  Grace for the most part still wants to be still, but she is playing.  She took a few steps tonight..she hadn’t shown any interest in doing that yet.  Here she is shortly before her tubby — we are still trying to comb all the glue and surgery stuff out of her hair.

We have a ways to go.  Restrictions on activity.  Pain medication.  Grace could have headaches for the next month or so…she can’t tell us when it hurts.  We are going to have to guess.  We will be watching her closely.  It’s all been so intense….I can’t help but think all day – it’s been less than a week since Grace had major brain surgery.  They took part of it out.  But she’s home.  Hallelujah!

Joy

Going to keep keep this short, Grace is being discharged today.  Both of her eyes are open and the swelling is much less noticable.  She’s sitting up more and standing if you are there to hold her and starting to take a few small steps.

Seizures are less than what we are use to, we have not had any hard or drop type seizures which was the goal of the surgery.

We hope to be on the road this afternoon and home soon where everyone will probably sleep better.

I spoke to soon yesterday when I said that Grace has not had much swelling.  Sunday when I arrived to the unit her right eye was swollen shut and by the end on the day you could just see the tips of her eyelashes.  Today (Monday) her right eye is opening up however her left eye is swelling up.  No real discolaration (I may regret saying that) as of yet.

Yesterday Grace began to play and sit up more.  No real interest in crawling yet.  Feedings went ok on Sunday.  We took the gauze off yesterday and removed the bandage over the stitches.  It was not plesant at first to see Grace’s head like that (we just didn’t know what it would look like) but we know that it was needed so we are good, just tough to look at those blood soaked stitches.  It probably helped us when Grace cut her lip a few months ago and needed stiches.

This morning Grace sat up in bed for quite a bit and played with a couple of toys, she’s napping right now and later today we are going to give her a back and work on washing her hair and getting all of the junk out.

We removed Grace’s IV yesterday, she’s getting all meds though her g-tube now (back to normal).

Grace was awake more on Saturday, she is still on her pain medication but not around the clock, just as we need it.  She was also started on a steroid to help control/reduce swelling and we really don’t see much so far just a little in the forehead.  The mention of steroid put us both on edge, we ran the steroid battle for six months back on 2006 and that was five months to many.  This course is controlled and will only run for 10 days or so.

Grace is laying in bed, we sat her up a few times but she didn’t last to long.  She has been taking formula at half strength today we could have given her full strength but we didn’t feel she was ready for full strength quite yet.  Sunday we plan may go to full strength formula.

Grace got a roommate Saturday night, a family from Wisconsin with and 8 month old.  We were not excited after all Grace just had brain surgery.  It was the only room available on the epilepsy unit; what are we to do say No?  Even during our ugggh moment we knew to be hospitable.

This family started noticing little jerking movements by their 8 month old, I saw one of the clusters an know it’s Infantile Spasms, we’ve seen thousands.  So now we have an opportunity to share our four years experience with a new family that is just starting their journey.

I would like to take a moment to talk to any residents or people that one day aspire to be doctors.  When a person has what is expected to be a rare medical condition turn down the giddy-o-meter just a smidge.  Our new roommates videotaped a cluster (same thing we did) and some residents came to the room asking to see the video as they have never seen one before!  Now our roommates are more than willing to share and have already done some research on their own…but seriously giddy-o-meter turn it down.  There is NOT a fine line between compassion and research/education/opportunity.  Stop watching Gray’s Anatomy (Joy likes that show) and start watching M*A*S*H.

We had Scott as our nurse yesterday, he was one of our first nurses when we arrived on the unit back in 2006 and one of our favorites.  Granted he have like eight or so favorite nurses on the unit so no matter what we are in good hands.

–kevin