My oh my, here's my journal entry about the week that never seemed to give us a break

Oh my goodness, what a week! I think that I spent close to 10 hours at medical appointments last week. I realize this is a really long post, I was going to apologize for it being so long but then I had to remind myself that this is a journal of our life with Luke and this week has been a doozy of a week. Someday I may look back on this entry and wonder where I was able to find the strength to go on another day, hour, minute, second and then I will remind myself it was only because of God's supernatural strength that I was able to get through it and still be standing, because He once again has shown himself to be Mighty in my life.

Monday Luke had his rehab Dr. appointment where we decided to wean him off the baclafen he's been on for years now and try a new muscle relaxant once we get him weaned off it. Once we left that appointment I took Luke to get a EKG done for his Neurologist who wanted to see if his heart is doing ok since I had reported to him that Luke was having a high heart rate in the middle of the night the previous week, I thought it was due to the seizure meds we were trying out, but of course it could of been due to others things, who knows for sure. When I got home I realized that both Zeke and Lily were not feeling well at all they both had very sore throats a low grade fever and head ache. That night Luke had a rough night, Lily had a rough night and even Zeke was up a few times crying, which meant I got very little sleep.

Tuesday I was blessed to have Natalie come over to help in the morning so that I could get a few hours of sleep, then when I did wake up I realized that both Zeke and Lily were not doing any better, so of course they were unable to do any school that day or go to the YMCA. I did end up going to the Y with Isaiah who was feeling good. Silly me I thought I would try out the Zumba class, oh my goodness did I pay for that, with severe pain in my knee, in fact the pain was so severe that even after taking 4 Ibuprofen I was still crying out in pain. Needless to say I didn't get much sleep once again.

Wednesday Gordy ended up staying home from work because I was unable to give Luke a bath and needed help just to get him out of his bed into the living room. Once I was up I realized that Zeke's tonsils were so swollen that I needed to get him into the Dr. that day and I also made an appointment for me to have my very swollen knee checked out. Between the two of us we spent about 2 hours at the Dr.'s office that day. I got home just in time to help Gordy clean up Luke who had been throwing up constantly for about an 1/2 hour. As I picked him up I realized that he was feverish, upon taking his temp I realized it was close to 104. I immediately gave him Tylenol praying that he would not throw it up and ran to the store to buy children's ibuprofen since we were all out. Once again it was a night of very little sleep, constant suctioning and slowly, very slowly feeding Luke praying he would keep some of it down.

Thursday I got to bed at about 7 am, slept for a few hours and then decided that we needed to get Luke into see the Dr. Took him in and after his Dr. listened to his lungs he didn't think that Luke had pneumonia, but to be on the safe side we did x-rays and blood work. I asked the Dr. what if anything showed up on Luke's EKG and he told me that Luke is showing some strain on his heart because of his lung problems, not the news I wanted to hear at all. The Dr. said that he would let us know as soon as he did, what the x-ray and blood work showed up. That nights things turned even worse as Luke was needing massive amounts of oxygen just to keep his numbers above 90. I was finally able to get into bed around 4 am.

Friday I woke up and checked to see if anything had been reported from Luke's Dr. and sure enough he wrote an e-mail saying that the radiologist thought that Luke did indeed have pneumonia, then he called about an hour later saying that Luke's blood work came back showing that he was brewing a huge infection and to say that I needed to get Luke into the office ASAP to get him some shots of antibiotics and to pick up the other two antibiotics he had ordered for Luke to take at home. They didn't have the antibiotics at the office we were at so I ran Luke home and then went down town to pick up his medications. Luke had a tiny bit better night that night, though he was still needing way too much oxygen for my liking.

Saturday I was able to sleep in a little bit, Praise be to God! Luke was doing a little better, Praise be to God! I was feeling good enough to walk about 2 1/2 miles and even though it was way slower than my normal time, I was able to make it without too much pain, Praise be to God! I was able to get the laundry done and a few other things done around the home, Praise be to God! That night I had my graduation/Auction for the Leadership training course through the Pierce County Coalition for Developmental Disabilities, that I had been taking for the past year, so glad I took that class, but also glad it was done, Praise be to God! That night was another rough one and because I decided to try to go to bed by 1 am, I ended up paying for it because both Gordy and I were up a couple times every hour all night long, yep it was a long frustrating night.

Sunday both Gordy and I dragged ourselves out of bed exhausted but knowing that we needed to get the kids ready for church and Gordy told me that I could go this week since he went last week. Luke seemed to be doing a bit better again and that was good news, but we both knew he was not ready for church. I went and I was so glad I did, our Pastor let me once again announce the mom's retreat and we were able to have some good prayer for all the mom's going. After church I was blessed by people giving me donations to help with the costs, I went home with $320, which was so amazing. I was able to go do some of the shopping that I've needed to get done all week for the retreat.

Well here it is Monday morning at 2:30 am. I really need to go to bed, but I want Gordy to get a good sleep since he has to get up to go to work tomorrow morning. Luke is doing so much better tonight but he is still alarming about every 15 - 30 minutes. Luke has another appointment today with the surgeon to discuss his gallstones, I know that he is going to suggest taking out Luke's gallbladder, erk. Though I don't think they will even think about surgery until he recovers from his recent bout of pneumonia. I hope and pray that Zeke wakes up feeling all better tomorrow, his tonsils are still huge and bothering him, if he's not 100% I will be calling the Dr. about that too.

I figure if you've actually read this whole blog post you are either very bored or perhaps you truly are concerned about Luke's journey, of which I want to thank you for your continued concern. It goes without saying that we sure could appreciate some prayers this week: Luke needs a miraculous touch in his lungs, Zeke needs a healing touch in his tonsils, all the mom's coming to the retreat this weekend need peace about leaving their precious little ones at home, their children and family all need to be healthy so that they can come knowing that all will be fine at home, I need an extra portion of strength this week and my good friend Mary is going in for surgery in the morning, please keep her in your prayers.

Love in Christ,
Luke's Mommy Sue