Wednesday, April 24, 2013

Luke's 7th surgery is scheduled today, your prayers would be appreciated

Today will be Luke's 7th surgery and to be honest I'm not looking forward to it!! Don't get me wrong I'm very happy to be getting Luke's baclafan pump out, as it didn't live up to what the expectations were supposed to be, it was supposed to help loosen Luke up so that we could get a bend in his knees, but since it was unable to choose the muscles we wanted it to loosen it chose his respiratory muscles, which has caused havoc with his breathing since we had it put in. The pump has also contributed to making the curve in his spine worse, along with causing some pretty severe constipation and throwing up issues. I keep hoping and praying and  hoping and praying that getting the pump out will cause the major issues we've been dealing with for so long to disappear.
Here's Luke swinging with his PT last week

Luke's surgery was originally scheduled for noon, but I got a call yesterday afternoon telling me that it has been pushed off to 6 pm this evening, which will mean he will probably need to spend at least one night in the hospital. I had been told that it not going to be a overnight stay, but now that it's scheduled so late in the day it's looking like it probably will be that way, though I'm still  hoping we'll be home tonight.

Gordy and I taking off on our weekend away
Gordy and I had a great time at our marriage conference, we are both so glad we were able to attend. We have found the only way to keep our marriage strong, during the extremely stressful days we constantly live with lately, is by putting forth the effort to keep our marriage a top priority in our lives. It was touch and go on whether we'd be able to go because of Luke's health needs and then even while we were gone Luke was struggling, but my sweet Amy girl kept assuring me that she would be able to handle Luke on those really challenging night times. We are so thankful to Yoli and Juan who had generously volunteered to watch Luke along with our other kids Friday night, but Luke ended up going home in the evening because we all felt that perhaps he would have a better night that way. We were also blessed to have Jonathan come help out on Sunday morning and then my sister Cindy watched the kids until we got home Monday night.
Gordy and I visiting Multomah Falls in OR
On Monday we decided to drive up to Mt. St. Helens and we are so glad we did it was a gorgeous day
I called Luke's pediatrician yesterday morning to schedule an appointment to be sure that Luke was healthy enough for surgery today as he'd been having such a rough weekend with needing a lot more oxygen, along with having a fever off and on. It was decided that since Luke has not had a fever since Sunday and that after listening to Luke's lungs, which sounded good, we would proceed with the surgery. I was assured that we were making the right decision to proceed.

Please pray that all will go well with the surgery, for a quick and pain free recovery, for his breathing and other issues to disappear once the pump is taken out. I would also like to ask prayer for myself as I am trying so very hard not to be anxious about this surgery, it is so very difficult each time I see Luke wheeled off to the OR. And last but not least will you keep my other kids in  your prayers it's so hard for them to see their brother have so many challenging and painful things happening in his life.

Thank you for your prayers,
Luke's Mommy Sue

Zeke holding Abigail one last time before they took off to go home last week
I love these pictures of cousins getting to know each other better.
Both Penelope and Abigail laughing at each other, it was so very cute:-)

Sunday, April 14, 2013

A new record for Luke, less than 24 hours spent in the hospital:-)

Here's Luke and I waiting to see the Dr. before we went to the Hospital
Please forgive me for not letting you know sooner that Luke only spent one very frustrating night in the hospital. We went to the hospital because we were told earlier in the day that his lung x-ray looked worse than the one he had taken the previous week. But when we got to the hospital we were told it actually looked better, which while that was great news, it was also very frustrating to learn that we had been admitted for no reason. I knew the whole time we were getting  him all settled in that we should not of been there his numbers were just too good. I should of listened to my gut closer,  oh well we were there less than 24 hours a new record for time being spent at the hospital.
Luke in the hospital doing a vest treatment while watching Leave it to Beaver
Tomorrow Luke has two appointments one for a pre-surgery physical and another one for PT. April 24th is the day that we've scheduled to get Luke's baclafan pump out. Please pray that he will stay healthy so that we won't have to change this surgery date.
Luke on the way home from his short stay in the hospital
We also need prayer concerning Luke's knee's. Luke had an appointment last week with his Orthopedic surgeon to talk about knee surgery, if you've been reading Luke's blog for any length of time you know that we've been praying for years now that his legs would bend. Long story short he will need pretty intensive surgery on both knees to get his legs bending again and even after the surgery we are not guaranteed that they will either stay bent or ever straighten out again. Sometimes the decisions we have to make are overwhelming, I'm thankful that I have a God that I can go to talk to and He will direct our path concerning what are the best things to do for Luke.

In closing I have one last prayer request to mention, Gordy and I are hoping and planning to go to a Marriage Conference next weekend. Amy and Lance, along with some other amazing people have once again volunteered to watch the kids while we get away for a much needed break. PLEASE pray for Luke to stay healthy enough for this weekend to happen, we really need this time to focus on our marriage and ourselves, the stress that we live with day by day, week by week, month by month, year by year is extremely taxing in all area's of our lives.

Thank you for your faithfulness,
Luke's Mommy Sue

Our latest family photo taken earlier today

Monday, April 08, 2013

Luke just got admitted into the hospital for pneumonia

Gordy and I decided after another very challenging night that we should call the Dr today to see what he thinks we should do for Luke. I called his pulmonologist and he recommended we do an X-ray to see if there are any if there was any change. Since Luke has not had a fever for a few days I really thought we would see an improvement, but not so.  His pediatrician thought we should take him into the hospital since we have already been giving Luke the strongest antibiotics that we can administer at home. 

So here we are admitted to the hospital once again:-(. To be honest though I keep looking at Lukes numbers and wonder why we are here. He's doing pretty good right now, so I hope and pray this will be a quick visit this time.

Prayers would be appreciated,
Luke's mommy Sue