Wednesday, October 05, 2011

Oh my goodness, what a really long day:-/

My really long day began to get exciting this morning around 3:30am, after staying up way too late working on some stuff that I needed to get done I finally was trying to go to sleep when I began to be awakened by Luke's oximeter alarm going off. At first I thought it was him just needing more oxygen, but then realized it was his heart rate soaring way too high. After checking to be sure he didn't have a temperature, I gave him a kiss, prayed with him again and stroked his hair, things that will usually help to settle him down, but none of those things worked this time. I then tried to go to bed two more times before I realized that he must be in pain, his heartrate by this time was up in the 160's.

I decided that I better pick him up to see if I could comfort him by holding him on my lap.
We sat out in the living room for about an hour and he finally settled down to where I knew that I could lay him back down and sure enough when I hooked him back up to his oximeter he was back to his normal heart rate. I ended up going to bed around 5 am, Gordy just happened to wake up so I asked him if he would let me sleep until around 10 am, he was working from home today so he was able to get Luke up and bathed for me, what a blessing that was:-)

I actually climbed out of bed around 10:30 am, still feeling severly tired but knowing that I had to get going if I was going to help the kids with their school work a bit, feeling thankful for Amy had got them started on their school work, try to get in at least a 20 minute Pilates workout and my shower before taking off with Luke for his appointments.

We got to the hospital with a few minutes to spare before his CT scan for his hips, then from there took off to get his blood work done and after that went to his GI Dr. appointment. The CT scan went great, he stayed still and it was done within 5 minutes. Getting his blood work was another story, whenever I take Luke in to get his blood work done I always tell the tech to get the best person because Luke is not an easy draw. I don't think the tech believed me until he tried to get a vein in vain for about 15 minutes, he finally called the guy in the next room over to help him and we got out of there 5 minutes later.

Luke's GI appointment was at 2:30 we got there about 10 minutes early, then waited until about 2:45 to be called back and then waited another 1 1/2 hours before we finally saw his GI doc. While we were waiting we saw the dietician who just happened to be very happy to see that Luke had gained back the weight that he had lost in August, plus added an extra 2 pounds. Luke now weighs 50.6 pounds, which is great news, that is unless you are the one picking him up all the time. Thank goodness God has blessed me with strong arms and a healthy back right now:-)

The most discouraging part of today was learning that Luke definitely has at least 4 to 5 gallstones, his GI Dr. thinks that the only solution is have his gall bladder removed. We therefore were set up with an appointment to see a surgeon on October 17th. He told me that gallstones are more common in children that non-mobile that are g-tube fed, because of the continuous feeds, kids like Luke are not able to move the bile out of the gallbladder fast enough, therefore causing the stones.

The thought of another surgery actually makes me sick to my stomach, I don't want Luke to go through another painful experience, I don't want to have to wonder again if he will wake up from another surgery, I don't want to think about spending days in the hospital, I don't want to think about the recovery time, bottom line I don't want another surgery. I know that may sound like a temper tantrum, I guess it is, but it's the truth, the whole truth and nothing but the truth.

One last thing that I find very hard to swallow is the fact that the Dr. asked me today if Luke throws up all the time, I told him only when he is sick. When we got out to the car I started his feeding as we were already very late on that, he began to throw up when I began to feed him and he is still throwing up, he has not kept down anything since we left the Dr.'s office. I keep praying that he's not going to get really sick, but I'm just not sure what's going on.

I keep thinking that I don't have time for another appointment with another specialist, but I guess I don't get to make that decision do I? I have details that I still need to pull together for our mom's retreat which just happens to be in 2 weeks, I have schooling to do with my children, I have had lots of speaking engagements the last few weeks, I really need to get over to my parents to help them unpack the rest of the boxes from their move last month, I have one of my dearest friends in town and we had planned to spend some time together tomorrow as she only visits here every few years, I really need to deep clean my bathroom, go through my closet and drawers, sort through a pile of mail that is about 2 feet high and the list goes on . . . . Oh well, I'm sure your list is just as long, right????

Your prayers would be so appreciated that Luke would stop throwing up, that he would not be in pain, that God would miracuosly take away the gallstones, that his breathing would start to sound better, that Isaiah who's been battling with some sickness this past week would get better, that Gordy and I would be able to get caught up on our sleep and that the details for the mom's retreat, along with the rest of the money will come together soon.

Thank you for your faithfulness,

Luke's Mommy Sue

Here's a picture of Gordy & I out on a date last Friday night. We went to the Lakes High School Football game and then we went to see Courageous, which is one of the best movies I've seen in years. Please find time to go on a date with your mate to see this movie, you won't be sorry!


Ariele said...

Praying for you...
Any chance you could cut back on speaking engagements for a while (especially if he does wind up having surgery) and hire some of the teens to help unpack your parents house? Love you--even if I don't always get the chance to comment that I'm praying, I read your updates (usually on my cell which is why I don't always take the time to type on it) and I AM praying for you and Luke and the rest of the family. Hugs, Ariele

Jean said...

Listen to Ariele.

Love & prayers for healing and rest,


K said...

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Kate said...

Oh, Sweetie, that's not a temper tantrum - that is a caring, sweet mommy who doesn't want her precious boy to ever be hurt or scared. OF COURSE you don't want to be in the hospital, go through the heart-ache of surgery!!

I can't believe how huge Luke has gotten. Have you talked to a mobility specialist or anyone about easier ways to transfer him?

So sad to hear about his pain and his vomiting. We're praying for all of the concerns here.

We love you!

Kate (for all the Estes)