Friday, August 31, 2012

8 years later and I'm still asking you to pray for Luke, his fever spiked to 104 this morning

I feel like a broken record asking for your prayers over and over and over and over and over again. Our family left on vacation on Monday, silly me thought we could leave on Sunday, but reality hit big time after all the crazy busyness of the wedding and we barely pulled out Monday night. In fact we pulled out so late Monday evening we decided to stay at a hotel that night, best decision ever!

I kept thanking the Lord that Luke was doing so good in fact the first night we got to the camp ground Luke was doing so good that I was rejoicing in the fact he didn't need extra oxygen, his numbers were great all night long:-). First time in a long long time his numbers were that great. 

Then yesterday the day of his 8 year anniversary of his accident, whammy he woke up coughing, throwing up, gagging, not doing good at all. We had planned to spend the day sight seeing down the beautiful Oregon coast, but our plans soon changed. We all loaded up the van and went our way favorite chowder place in Oregon, Mo's. I thought he was doing a little better and could handle going with us, but boy was I mistaken as he continued to gag and throw up at the restaurant, not the best time was had Urk:-(. After we left Mo's Gordy and I discussed the fact that Luke could not spend the day sight seeing and hiking along the coast, so Gordy decided to stay with him at the trailer while the rest of us went. It was a bittersweet day as the kids and I enjoyed the gorgeous hike along the ocean all the while in the back of my mind I was grieving the fact the Luke and Gordy were not able to join us.

Last night as Luke continued to get progressively worse as the night went on I kept going back to the night he was originally admitted into the PICU 8 long years ago. I kept thanking the Lord we were no longer wondering whether he would live through out the night, but now I was hoping and praying that we would not have to cut another camping trip short because of him getting sick once again. This morning Gordy took over for a bit so that I could get a few minutes of sleep but that was short lived when he told me his fever was up to 104. I jumped out of bed to get ibuprofen going, praying he would keep it down, thankfully he did. He seems to be doing a little better now that he's been bathed, his vest treatment is done and we are praying he'll keep his food down. 

Please won't you pray with us that Luke will make a speedy recovery and that we won't have to cut short this time we have with the kids, a time to get away from appointments, work and the stresses we live with constantly at home. Could you also pray for Gordy's back he hurt it last week and has been in almost constant pain since then.

Thank you, 
Luke's Mommy Sue

PS  I have not given up on praying for a miraculous healing for Luke, I know God is able to raise him up, to completely restore his lungs to perfection, to connect every part of his brain that was destroyed, to touch his muscles and to bend his legs. Please, oh please will you continue to believe with me for a miracle?? I sure do appreciate your faithfulness in praying for Luke, your prayers keep him alive and keep us from not losing hope:-)

Tuesday, August 21, 2012

Bittersweet Days, Filled with Baby Showers:-), oxygen alarms, Wedding details:-), oxygen alarms, A family dinner:-) and even more oxygen alarms.

Thank you so much for your prayers for Luke, he seems to be getting better, better every day. He continues to need oxygen, but way less than before, thank goodness. Nights continue to be the biggest challenge of my life, last night he was needing quite of bit of oxygen once again, he continues to drop way too low, then we go move him and adjust his cannula which falls out of his nose/mouth and then he goes back up again. Some days it's a miracle that Gordy and I are able to get out of bed. We were both shocked when we woke up at 11 on Saturday, I guess we were exhausted and needed the sleep though getting up that late wreaked havoc on my way too busy day. 

Penelope with both Grandma Sue and Grandma Cindy
Saturday I hosted a shower for my newest Grand baby girl Penelope and her mama Sarah, we had a great time and she was showered with some great gifts and so many cute dresses. It was the last shower this summer, after 3 bridal showers for my niece, 2 bridal showers for Amy, 1 baby shower for Natalie and Abigail and then the shower on Saturday, I feel a bit showered out:-) But am so glad we were able to bless all we did this past summer.
Here's Uncle Luke putting Penelope to sleep, he loves holding his new baby girl neice
Sunday Gordy and I woke up late again and we knew there was no way we could make it to church by 10 am, so we decided to go visit Life Center which happens to started at noon, worked out perfect and it was so nice to go to church together, that doesn't happen often. 

This week is a whirlwind of activity, today Monday I decided to have all my children over for dinner, so I cooked a big dinner with ham, twice cooked potatoes, homemade cream corn and Caesar salad, yes it was delicious and very fattening:-) This will be our last dinner together with all the kids for quite some time because of course once Amy and Lance get married they are taking off for their honeymoon in Florida and while they are gone Josh will be moving all their household items to Missouri, Natalie will be flying later in the month with Abigail. We are so blessed to be very close with our children, we really do enjoy spending time together with all of them, which makes saying good bye to them so very hard. I've known they were moving now since the beginning of the year and you would think that I would of come to terms with the fact that they are leaving but no, it's just not going to be easy to say good bye.

It's been a very emotional time for me lately, it's a rare day that I don't at least shed a few tears, between saying good bye to Josh, Natalie and Abigail and then having Amy get married and move away, I'm finding it hard to imagine life without them around. I'm sooooo very happy for my children, but it's so hard to see them leave. Here's some real honesty for you, sometimes I feel like everyone in my life gets to move on with their lives and here Gordy and I are left still dealing with some extremely tough days caring for Luke 24/7. We have been so very blessed by having our girls be so much a  part of our daily lives, they have sacrificially given of their time and have blessed us on so many occasions, to say I'm thankful for their help would be the biggest understatement of my life. I keep thinking how am I going to go on with out them here, then I feel bad like I don't ever want them to think that I in anyway want their lives to stop just so they can continue to help us. So here we go encouraging them to make new lives for themselves, hoping and praying that they will find wonderful and joyful times in their future. So how many of you are thinking that I'm selfish to be thinking this way ??? The only reason I even wrote this out is because it's my blog and I try to keep it "real" here. 

The rest of the week looks to be soooooooooo incredible busy. Tuesday and Wednesday are days that I will be shopping to buy all the food for the desert reception, plus on Wednesday we will be getting mani/pedi's done:-) Thursday I have a few friends coming over to help cut up fruit for the the reception and help to prepare the food for the wedding party the day of the wedding. Friday is the wedding and we have to have everyone ready and at the church by 3:00 for pictures to begin. I'm so thankful for my sister Cindy and Alexis who are both helping me care for Luke this week, there is no way I'd be able to get it all done without their help. 

Will you please pray that Luke will continue to get better and that his need for extra oxygen will fade away and for him to stop alarming all night long. Also for me to stop crying all the time, I by nature am not a cryer so it's driving me crazy to be so emotional all the time.And last but not least for all the final details to fall into place for Amy's wedding on Friday.

Thank you,
Luke's Mommy Sue

Friday, August 17, 2012

Appointments, Appointments And Even More Appointments

Last week I was so excited, because Luke didn't have any appointments scheduled all week long, boy oh boy was I in for a disappointing week. You see I've been telling my good friend Yoli that I would watch her 3 little guys, for her so that she and her hubbie Juan could get away for a few days and of course since Luke didn't have any appoinments scheduled that week I thought it would be a great time to finally follow through on my offer. Can I just say right now if it hadn't been for Amy my wonderful daughter and Gordy I would not of been able to follow through on keeping the boys at our home and here's the reason why:

8/6/12 It all started Monday morning when I realized that Luke was just not getting better after being into see his Pediatrician the previous week. Before I even climbed out of bed I realized that I needed to call his Dr. to make an appointment at which time I found out his Dr. was not in that day, so I decided to call his rehab Dr. who has been dealing with the pump issues he's been having, he too was out of the office that day, so then I called his Pulmonologist and found out that I couldn't get Luke into to see him until Wednesday, so I decided to call back to his Pediatrician to see if we could get him in the next day. His Pediatrician nurse suggested we try a new Dr. that day, which always makes me nervous to see someone who has never seen Luke before, thankfully he referred often to previous notes and with help of the nurse who really knows Luke it was a good appointment. So he decided that we should do an x-ray, lab work and possibly get into see his rehab Dr. that day. The x-ray went ok, but the lab tech couldn't get a good vien to get his blood work done, so then they sent us down to his rehab Dr., whose nurse was able to fit us in, she turned down his pump and then sent us over to a different lab to see if we could get blood drawn there, thankfully they were able to get it done. That lab showed that he was definitely brewing an infection so the Dr. decided to up his antibiotic. All said and done I spent close to 5 hours in Dr.'s offices, labs, x-rays . . . I went home that night to a full house, you see Daniel and Sarah were bringing over new baby Penelope to meet the family, along with my mom and dad, uncle, sister and Yoli's 3 little guys, yep you can say our house was major busy that night:-) Needless to say I was exhausted and was so thankful to Gordy and Amy who made dinner for everyone that night. 

8/7/12 Tuesday Luke was doing a little better, so no appointments that day.

8/8/12 Wednesday after talking to his rehab Dr. it was decided that he wanted to see Luke again to assess him for himself, so I took him in at  2:30 and after listening to Luke's lungs he decided that we needed to go straight to the ER so that Luke could be admitted into the hospital. Thank goodness after talking with the Dr. in the ER she agreed with me that Luke didn't seem like he needed to be hospitalized, he was only on 1 1/2 liters of oxygen, she agreed that he did have pneumonia, thought after another x-ray was done and it was decided that he didn't have anything new brewing in his lungs. She sent us home with instructions to continue doing what we do best, keep a close eye on Luke and if he seemed to get any worse at all to go back in. So all in all Luke and I spent about 6 hours at appointments that day. 

Getting ready to go into the Emergency Room to be admitted to the hospital
8/9/12 Thursday I was woke up by Luke's nurse asking me how Luke was doing and thankfully I was able to assure her was doing better. He continued to be on oxygen but he really was doing better.
Waiting, waiting and more waiting in the ER
8/10/12 Friday I was once again woke up by Luke's PT calling to see if we were going to keep our appointment that day, I decided that I just couldn't handle another appointment and she understood, since Luke had been so sick why we were cancelling. 

Getting ready to head home from the ER
8/11/12 Saturday we finally got around to cleaning the bed that was donated to Luke last May, after emptying it out from all the stuff that had been collecting in it in our garage we cleaned it up and took it up to Luke's room. It's so nice to finally have a bed that we can crank up, along with being able to crank up the head or the foot if need be. I wish I could say his first night in his new bed was a good one but nope, it ended up being a very challenging night with me needing to suction him almost every 15 minutes long all night long.
Luke's new bed, Santana's old bed, THANK YOU Lindsey and James:-)
8/12/12 Sunday I finally climbed into bed around 5:30 a.m. and had to climb right back out a few hours later to get Lily ready for church and then get Luke ready and fed for the day. Needless to say when Gordy got home from church I went back to bed, I think that was the second nap I've taken this year, I really don't like naps but I knew I wasn't going to be able to go on another second without some sleep. Sunday night was another challenging night.

8/13/12 Monday I knew when I got up I needed to call to see if I could get Luke into his Pulmonologist to see if there was anything he could recommend to help get Luke over this current sickness. His Dr. looked at his x-ray and after listening to his lungs deteremined that Luke was probably dealing with bronchitis more than pneumonia, so he prescribed a steriod and told us that we could just finish up his current antibiotic and not start a new one at this time. 
Luke waiting to see the Pulmonologist
8/14/12 Tuesday I took a day off, I went to get my back worked on, then I went to lunch at a friends house, we went for a 4 mile walk, then I went to get my hair done and finished the day by doing some shopping.

8/15/12 Wednesday I took Luke into see his rehab Dr. once again and after listening to his lungs he was happy to say that Luke was sounding soooooo much better, yahoo!! He decided to turn up his baclafen pump just a tiny bit and we are going to leave it there for a few weeks, so far he seems to be doing fine with this increase thank goodness.

8/16/12 Thursday Luke continues to do better everyday, after picking up the boys from a friends house I took the kids to the library for an hour, it was so good to be able to do something ordinary with the kids:-) After getting the kids home and Luke set up in our downstairs family room the only room that has a window air conditioner in the house, because the rest of the house was 87 degrees, Gordy and I went out on a date. I ended the evening shopping getting ready to host a baby shower for my newest grand baby girl on Saturday.

PLEASE pray that Luke continues to get better and better everyday, next week is Amy and Lance's wedding and I keep telling Luke's Dr.'s I NEED a healthy boy for that week and for the wedding. After the wedding we are hoping to get away for a week of camping on the Oregon coast, I know you may think I'm crazy planning that right away but I'm hoping that it will be relaxing for the most part:-) Then we say good bye to Josh, Natalie and Abigail as they move to Missouri, yep we have some HUGE changes happening in our family this summer!!

Love in Christ,
Luke's Mommy Sue

Monday, August 06, 2012

Really Amazing News To Share, Great News, Good News and Challenging News

Just want to begin by letting everyone know that Luke did great during his surgery, he woke up pretty much right away this time in the recovery room. Once we got him into his room he did cry like I've never seen him cry in pain, after getting him some meds to help with the pain he settled down and slept most the rest of the day. He did so good they let us go home the next day, once we were home he continued to do great except for being in pain when we moved him. Moving him became a huge challenge during those days, so much so that I wrenched by back, but thankfully I'm feeling better once again. 

I so wish  I could say that he continued to do great but no, can't say that at all. It seemed like everytime they would turn up the medication in his pump he would not respond good at all, to the point that he would throw up for a couple of days and require lots of extra oxygen. So needless to say we've had to have his pump turned down twice now and I'm not sure if that's helping either. I took him into his Pediatrician last Monday because I thought perhaps he was dealing with some kind of sickness because of his need for constant oxygen and the throwing up he was doing. But after x-rays it was decided that he did not have pneumonia, but then took him into his Physiatrist last Wednesday, who is the Dr. in charge of his pump medication and he thought he did hear crackles in his lungs so we started him on his first antibiotic since March, since then we have not seen much improvement, erk. Which brings us to earlier today when I decided to take him into his Pediatrician again, he thought his problem are related to the baclafen  pump so he sent us to get it turned down again. After sleeping most of the day, he decided that he didn't want to sleep tonight, so it's either been gagging on way too much secretions, constant suctioning or alarming from his oxygen dropping way too low. Another sleepless night for me.
 Now onto some good news. Daniel and Sarah welcomed Penelope Grace into their family on July 30th, both baby and mom are doing really good:-) She's so precious and we are feeling so incredibly blessed. 

Other news in our family: Gordy and I were able to get away for two nights to celebrate our 29th wedding anniversary, we had a great time, though it was a bit stressful at times since that was when Luke started throwing up and needing lots of extra oxygen. Needless to say we went home to a very sick Luker man.

Gordy and I visiting one of our favorite beaches on the Oregon Coast Oswald West Beach


I have been telling the boys all summer long that they could have a campout in our back yard, so last week squeezed in between Amy's bridal shower on Saturday, Penelopes birth on Monday, Luke being sick with Dr. appointments, buying and then making the food for my neices wedding on Saturday, we had a overnighter with 10 boys sleeping in tents in the back yard. They all had a great time and got along wonderfully. Yep, I did it again way overscheduled myself this past week.

Some of the boys playing a card game during their backyard overnighter

The Toilet Paper wedding dress contest at Amy's bridal shower

Janell and John's wedding ceremony, they were married by Janell's dad John

Josh, Natalie and Abigail, such a sweet looking family:-)
Janell and Lily right before she walked down the aisle.

The boys all dressed up and waiting for the ceremony to begin.
3 generations
My sisters Lori, Jill, myself and Cindy

Love this picture of my girls:-)

Would you please pray that Luke will get better? Here it is morning and I'm just now climbing into bed, this night has been horrible. I keep praying that we will not need to be admitted into the hospital, but after another night like we've had tonight it's seeming more of a possibility. I'm so thankful that with God all things are possible, including Him healing Luke of whatever is causing all these problems he is having, that is what I'm believing for today, won't you please join me in these prayers. Thank you.

Love in Christ,
Luke's Mommy Sue