Luke is once again back in the hospital needing your prayers

I just wanted to give a quick update on Luke as I lie on the fold out couch in his hospital room. Luke's pediatrician and I decided after dealing with 19 straight days of fevers and then recently dealing with Luke's constant twitching and moaning in pain that he needed to be admitted into the hospital to figure out what is going on.

We got to the hospital around 5 pm on Monday evening and I was once again doubting that I made the right decision to bring him in since his fever was gone and he seemed to be doing a little better. They did an X-ray, bloodwork and swabbed his nose to try to get some answers to what is causing the fevers and pain. Thankfully his X-ray looked about the same, no worse, his bloodwork came back improved a little bit also. And then we finally got results from the nose swab late this afternoon, good news the flu is gone and no new viruses showed up, Praise God.

The Dr. decided that we should spend at least one more night here to see if we can get him more comfortable with no more grimacing and constant twitching. He's doing good tonight. His heart rate is lower than it's been in weeks, I'm pretty sure it's the tordahl they are giving for the  pain relief. He's still on quite a bit of oxygen so we need to get that weaned down.

Please pray that the constant moaning, twitching and pain he is showing to us will be gone and for his oxygen needs to get better. I had orginally planned to make Luke's food formula tomorrow since he is currently finishing up his last bit from the last batch we made. I'm thanking the Lord for Amy who volunteered to make his food along with our good friends Laura and Bonnie and of course with Isaiah and Zeke's to help get it done without me.

I'm so ready for Luke to be healthy again and for us to get home, please pray it happens soon!

Thank you,
Luke's Mommy Sue

FRUSTRATION is the word that keeps coming to my mind today, as Luke is still dealing with high fevers and not seeming to get better

Luke at one of his many visits to the hospital

Fevers Luke's fevers are almost constantly above 102 and often above 103, we continue to give him Ibuprofen and Tylenol around the clock, nothing seems to help. I keep hoping we are not doing damage to his kidney's.
Respiratory problems continue, he is on at least 3 to 5 liters of oxygen all the time, still needing to be suctioned and coughed often.
Unsure if we are still just dealing with the FLU or if he's contracted a secondary infection as his white blood count was double on Tuesday of what it had been on Sunday when he left the hospital.
Sleep deprived, that explains exactly what Luke is as he has not been sleeping good since they took him off the the ventilator, sometimes he goes 30 hours before sleeping, Gordy and I are also very sleep deprived too as we have been having to keep his meds and suctioning going around the clock.
Totally not sure if we made the right decision to bring him home on Sunday from the Hospital, it seemed like the right thing to do that day since his fever had come down that one day.
Really high heart rate, Luke's heart rate has continued to stay high, which we are sure is a result of his fevers and pain, though we're not sure where the pain is coming from, which is so hard!
Action vs. non action, do I keep pushing Dr.'s and the hospital to do something or do we just have to wait out the flu, which I've heard can last at least two weeks.
Trying to be patient today as I've waiting all day long for a call back from his Dr.'s office to see what we should do, if anything new.
Increased muscle spasms and constant jerking, Luke looks like he's in constant pain and discomfort which is so hard to see.
Ongoing this sickness seems like it's never going to end.
Not wanting to give up on God, though can I be honest to say at times I wonder if He's really hearing our prayers. I know that's crazy and NOT true but I'm just keeping it real:-/  I'm so thankful that when we are wavering in our faith we have so many people that stay strong to carry us along.

We've hit the rewind button and once again we started the year with Luke in the PICU and we're headed back to the hospital today, praying he doesn't have to go back to the PICU again

Here is our family Christmas Eve, Christmas caroling and delivering cookies to our neighbors

We feel like someone hit a rewind button and we've begun our year almost the exact way that we began 2013, in the hospital with Luke in the PICU. Isaiah starting feeling sick December 21st, but we didn't realize how sick he really was until he decided that he was unable to get out of bed on Christmas. The next morning Zeke and Lily woke up not feeling great, but after a long sleep Lily said she was feeling better, as the day progressed it looked like Luke was coming down with the same sickness. Amy had bought tickets for Lily to go see the Nutcracker in Seattle for her birthday and of course it was that day, I too had planned to go with them. I went back and forth on whether I should go knowing that Luke was getting really sick and also wondering if Lily was really up to going. We decided to go and had a great time, but came home not feeling so good myself. The next day I stayed in bed all day, thankfully Gordy did not come down with it or we would of been in real trouble.

Pictures from the Nutcracker in Seattle

I decided on Monday December 30th to take both Luke and Isaiah into the Dr. as they both seemed to be slow in getting better. The Dr. didn't think that Luke's lungs sounded too bad but went ahead and did a x-ray which revealed that Luke did indeed have a bad pneumonia brewing. He also ordered blood work which revealed a very high CO2 level so late that night we received a call from a Dr. telling us we needed to follow up the next morning with his Dr. After talking with his Dr. we decided that I should take him into the hospital, we went to the ER and was actually sent home because he was only on 3 liters of oxygen and I assured them that we could handle that at home.

Luke the first visit to the Hospital

The next day after working to get all our Christmas stuff put away Gordy and I decided to take the kids out to dinner. Just as we had finished eating out dinner I got a call from one of our wonderful caregivers for Luke telling me that he was jerking and not breathing. We immediately got in the van and headed down the I-5 going very fast. When we got home Luke was still not doing good, he was not responding to us at all and he was not breathing. We tried to get him to cough and to respond with no success so we called 911. I ended up going with him in the ambulance to the hospital, the ride there was a nightmare as they continued to not be able to get him to breath or respond. When we finally got to the hospital they immediately put in a breathing tube and within minutes he began to wake up, what a miracle to see him looking around the room and gagging on the ventilator.

Lily visiting while Luke was on the ventilator

Luke ended up in the PICU on the vent for two days. The day they took it out was very hard as he began to jerk in pain and didn't want to cough anymore, I'm sure his throat hurt. He came home from the hospital Sunday afternoon, he seemed to be doing better that day and then once again Monday he started getting a fever again and needing more oxygen.

The day the vent came out

The kids and I went on a few walks around Wrights park when they came for visits

The first time Luke slept in days

On the way home

Here we are Tuesday morning and I'm getting ready to take him back to the hospital we cannot get his fever to come down and once again he is needing more oxygen then we are comfortable giving him at home. Please pray that Luke will get over this flu, once and for all and that this visit to the hospital will be a quick one. Also pray for my other children as it is so traumatic and hard for them to have me live at the hospital with Luke. This life we live is HARD and it never seems to get easier, the only way we continue on is with prayers and help from Jesus.

Love in Christ,
Luke's Mommy Sue

The Searles Family 2013 Christmas Letter

We decided this year instead of printing up and mailing out a family letter I would just blog a letter, so here it goes . . .

We began this year with the worst flu experience that our family has ever had; it started with Amy getting it, then passing it down to Isaiah, who shared it with Gordy, who shared it with Ezekiel, Ezekiel then gave it to Lily, who passed it on to me, then Luke not wanting to be left out came down with a flu. That flu would put Luke into the PICU for a week and  then spend another week in the hospital before finally coming home with a new 10 liter oxygen concentrator so that we could finally get him released from the hospital. We knew that after beginning our year with such a horrible time of sickness that it could only get better from there. And I'm thankful to say it did get better eventually.

 

When we all recovered from the flu, which took a few weeks to finally get back on our feet Amy once again took over helping to homeschool Isaiah and Ezekiel, while Cindy got Lily back on schedule homeschooling her. Words can not express how thankful I am to both Cindy and Amy for helping with homeschooling without there help we could not continue on homeschooling.

Gordy celebrated his 23rd year of working for REI. We are both grateful that REI allows him to have a flexible work schedule and work from home 2 days a week.  This cuts on his commute time of course and also helps with the cost of the wear and tear on his car and the cost of gas.

In February Josh and Natalie came home for a visit from Missouri, where they have now lived since September of 2012, and we went to the Oregon coast, it was definitely one of our colder trips there. While we miss not having Josh, Natalie and Abigail living here in Washington, we realize that they feel God has called them to live in Missouri and therefore we can't complain about them not living closer, but we still do miss them very much. Josh after fighting with L & I in WA finally was granted retraining and hopes to begin college this summer. Natalie keeps busy chasing Abigail, who began walking last month, on top of continuing on with her creative gift of making new projects all the time. There family love to go on hikes and took us to many beautiful places on our recent trip to visit them.

Luke turned 10 years old in March, he's growing up so fast! While this year began extremely hard for Luke with the horrible flu/pneumonia he had in January, which continued with more pneumonia's after that which meant he was needing way too much constant oxygen. We realized that the baclofen pump he had put in the year before was causing more harm than help. Thankfully when he got the pump out in April his pneumonia went away too, I'm ecstatic to say he has not had pneumonia since April which has been the longest stretch that I can recall in many years.

He had major knee surgery in June, which means that for the first time in 8 years his legs now bend, thankfully he's much more comfortable sitting now so that makes it a lot easier to take him places:-). The 2nd biggest challenge this past year was his legs not healing after his surgery, it took two long month's for them to finally heal, you can look at the previous post to see the pictures from that time. Luke seems a lot more happy, vocal and cognitively aware of things going on around him, thank the Lord he's been doing so much better. We still continue to pray daily that God will completely heal him and allow him to once again walk and talk,  we will not stop praying for that to happen until God answers our prayers.

In April Isaiah turned 14. We can no longer call our younger kids the little's since they are all growing up so fast. We are so thankful that Isaiah is so strong, he is able to carry Luke for me and often does especially on those days that my bad is giving me some problems.

Isaiah loves to listen to books, he quite often can be found down in his room building some elaborate LEGO creation while listening to a book playing in the back ground. This past summer he went to kids camp to be a part of the work crew and had a great time there doing the dishes, cleaning and whatever else they required him to do. I'm grateful that he is such a easy going kid, who often is very helpful around the house.

In May Gordy and I got away to a Marriage conference in Eastern Washington, we had a great time at the conference and some much needed time away from the stresses of way too many sleepless nights with all of Luke's constant alarms that were going off during that time.

 On the way home from the conference we stopped at Multnomah Falls and even though it was a rainy day it was still very gorgeous.

On Mother's day we went up to Seattle to see Penelope get dedicated and went out to dinner afterward, here's a picture of there beautiful family that day. And a picture of the both Mommies with their daughters on their first Mother's Day.

In June we finished up the homeschooling for year and got ready for Luke knee surgery. The day before his surgery my dad went into the hospital for a few days after being so dizzy he couldn't walk.

 He ended up coming home needing to use oxygen, the sad part is my dad suffers from COPD but not because he smoked but because he was in the cockpit all those years in the Air Force with others smoking around him. Thankfully he can take his oxygen with him and doesn't really let it slow him down. My mom had a terrible accident a few years ago that has left her in almost constant pain, so both of my parent's have had a challenging year and could use some prayers.

 Joe Saunder's a pitcher for the Mariners donated some tickets to some families from Mary Bridge and our family was chosen to go to the game it was such a fun day being able to go on the field, into the dugout, in a suite to watch the game, followed by the kids being able to run the bases afterward.

 

In July we celebrated Abigail's birthday first, then Daniels, Joshua's, Sarah and then last but definitely not least we end the month with Penny's birthday. Here's a picture of Abby in her 4th of July birthday dress.

Daniel, Sarah and Penelope live in Ballard and are getting ready to add another child into their family in February, woohoo another grandbaby!! 

Daniel, just like his dad is working in the computer field at a company in downtown Seattle, he rides his bike to work and home again, which is about 8 miles each way, he enjoys the ride, though it makes me a bit nervous thinking about him riding through those crazy busy downtown streets. Sarah continues to be very creative, the things she sews and makes are genius on top of being a great mommy to Penny.

August was a month full of lots of appointments for Luke, we did about 20 hyperbaric dives to help with the healing of his legs, along with massive appointments at the wound care specialists to help get his legs to heal. Joshua, Natalie and Abigail joined us for the first part of our vacation, here we are on the top of Mt. St. Helen's and then Daniel, Sarah and Penny joined  us for the next part down in Oregon, the picture you see is us in front of one our favorites beaches.

 The end of August brought some fun camping times mixed with some stressful times. Gordy was having some chest pain and thankfully he didn't just ignore it.  He went in for several tests including an EKG and a stress test that didn't reveal the cause of the pain.  The nuclear stress test indicated there was some reduced blood flow in some arteries.  They decided to do a heart catherization and to look for any blockage.  We didn't realize how bad it was until after the procedure. The Dr. came out and told me that my husband was a very lucky man as one of the main arteries, the one they call the widow maker was 99% blocked.  They placed a stent which opened up the blood flow and we are so thankful that he didn't have a heart attack.  I am so very thankful that we caught it in time and have thanked the Lord often that He allowed Gordy to live as I don't know how I could continue on this journey without him by my side.

In September Gordy and I got away for a few days to celebrate our 30 year anniversary. We had so much fun acting like we were old retired folks, we took our trailer down to OR and just took it easy while enjoying some great beaches, hikes, sunsets, relaxation . . .

 Amy had her birthday in October. Amy and Lance live in Lakewood, not too far from us, thank you  

Jesus, it's great to have them live so close by. As I mentioned she helps me out a few days a week with the boys homeschooling and also helps take care of Luke a few hours a week.  Lance works with computers at the same company that Daniel works at downtown Seattle, he takes the train each day to work which has been a huge blessing as it saves on gas and parking downtown. They are both very active in our church both with the children and the youth, Amy is getting ready to put on our annual Christmas play next week, she always does such a great job putting it all together.

 

 They were able to go to Florida for the Foursquare Church convention in May and had fun going to Disney World and other fun parks while they were there. 

Ezekiel turned 13 in November, oh my another teenager:-) We celebrated his birthday in Missouri, we had originally planned to go to Missouri in January but because Luke was in the hospital when we were going to go we had to postpone our trip, little did we know it would take us so long to get there, but really it was the perfect time to go since the weather was so gorgeous while we were there. Zeke has never given up praying for Luke, each night he has to pray for Luke before he goes to bed, he often prays that God will completely heal him and once again allow  him to walk and talk again, it's so precious to hear him pray each day. He has recently started to play the guitar and hopes to take violin lessons soon.

Just yesterday December 20th Lily turned 9 years old, I can't believe she's growing up so quickly. Little did we know that when we named her Lily Joy would she grow up to be such a joyful part of our family. She had so much fun going to St. Louis it was her first time to fly and she enjoyed every part of it! She is doing great in school and her teacher Auntie Cindy says that she is excelling this year in her reading and writing.

Here she is at the top of the St. Louis Arch, that was quite an experience looking out the tiny windows to the ground way below us.

 Amy and Lily went to a concert in a park a few weeks ago, she loves her big sisters and really has fun going shopping with Amy or doing there nails together. She misses Natalie, Josh and Abigail very much and is often in tears when she can't see them, I guess that's one of the biggest challenges of having children who are so spread out in age, not getting to spend time with your older siblings.

 I was blessed to be able to spend a weekend in November with my Penny girl while her mommy and daddy went to a marriage conference, we had so much fun playing together and going on a very beautiful walk around Ballard up in Seattle. And then I was doubly blessed to go spend a weekend with my Abby girl in Missouri just a few weeks ago while her mommy and daddy went to a marriage conference also, we had a good time driving in the snow, they had a foot of snow fall the day before I flew in, we also had fun going shopping together and playing. I was so blessed to just spend some one on one time with each of my precious grand daughters.

 

I've been very busy lately volunteering at the Mary Bridge Hospital, I co-chair the Family Advisory Committee which has opened up all kinds of doors of opportunity to for me to speak to many different panels in the hospital and out patient clinics. I was also chosen to speak at a gathering of all the Multicare leadership, which was about 500 people last week, I shared my experiences in being an advocate for Luke within the Multicare hospital system, I was surprised and humbled to receive a standing ovation after sharing my story. I also began a Parent Pizza lunch day twice a month at Mary Bridge where I go in and feed the parents that have children who are patients in the hospital come eat pizza and enjoy some home baked cookies. Papa John's Pizza donates the pizza and I make the cookies it's a great partnership. It has opened my eyes up to so many different peoples stories and made me realize that there are so many hurting people in this world, it's one of my best days of the week, but also one of the hardest days too. I'm also currently serving on the Developmental Disabilities Council for Washington state which is a governor appointed council here in Washington. It has opened up doors for other groups for me to be active in along with some opportunities to testify at a hearing last year and meeting with my Legislatures about the current needs in the Disability community.  I still love to walk, my goal this past summer was to walk a 100 miles a month, I was close in June and over 100 miles in July and August.

 

I love this picture of my boys, it was taken just a few weeks ago when we were all on our way down town to see the Festival of Tree's, what a blessing that Luke was healthy enough to join us that day. 

I realize this blog post was way too long, I guess that's what happens when you try to fit a whole year into one post:-).  We'd love to hear from you out there in cyber space, leave us a comment and let us know how you are doing, pretty please. We hope and pray that God will bless each one of you with a very Merry Christmas and the best New Year possible. Remember to never, ever give up on praying, knowing that GOD is the miracle working Father who loves to shower His goodness upon His people. Last but not least please never stop praying for Luke's complete healing, we have not given up hope that God wants to completely restore Luke's brain and body and won't stop believing until we see it happen.

Love in Christ, 

Luke's Mommy Sue

Our Summer in pictures, the great, the good and the really gross out pictures of Luke's surgery wound site, beware if you have a weak stomach

 

 Have you ever had a project that you keep putting off?? I have been meaning to blog now for month's, it's the first time since we began this blog that I didn't update it on Luke's near drowning accident anniversary. Below I have chronicled Luke's leg wounds 

This was the day that I decided that I had to do something to get Luke's legs to heal, after talking to a wound care nurse she told me that I needed to get the scar off for it to heal, little did I know what we would find once it was gone.

Here is what it looked like when they debrided his his leg, they told me it looked good, because they didn't see infection, though it made me sick to my stomach to look at.

This is what it looked right after the surgeon got done debriding it once again, she told us to go see a different wound care specialist the next day for a  wound vac.

Our insurance company denied us getting a wound vac, but the great nurses at the wound care clinic went across the street to the hospital to get two PICO mini wound vac, what a difference they would make.

Here is the first time we took off the PICO, it was already looking better after just two days.

This was after having it on for a week, though it was looking much better they were still concerned about the tunnel it was still very deep and went up far under his scar.

Once again more progress after another few days.

After 3 weeks the tunnel had finally healed and it was finally looking like it was going to shut completely.

It was completely healed after a month with the PICO, once again we were so thankful for the wonderful wound care nurses, as our insurance company never did ok the wound vac.

We had many appointments this past summer, I got Luke into the Hyperbaric chamber for at least 20 dives, which I feel greatly helped the healing process of his legs.

Here's Luke now able to sit for great length of times since his knees bend so wonderfully.

We were blessed to have Daniel, Sarah and Penny join us on the Fourth of July:-)

Joe Saunders one of the Mariners pitchers generously donated a tickets for a few families from Mary Bridge Hospital to join him on the field before one of the game, he also donated the use of a suite to watch the game, we had a great time.

Josh, Natalie and Abigail came in August for a visit and we went for a hike up at Mt Rainer

The kids had many fun times in our back yard freezing cold pool.

Here's Luke swinging at Physical Therapy, his PT was almost in tears when she saw Luke's legs bending so nicely.

After waiting month's I finally took Isaiah out to lunch for his lunch date at Five Guys

The kids and I were blessed to go on a hike up at Mt. Rainier, it was gorgeous that day!

We went camping at Ike Kinswa state park in WA, Luke had so much fun in the boat and the boys had a blast fishing.

I love this picture of the sunset, it was even more beautiful in real life.

Here is the family up at the top of Mt. St. Helens

Luke, Lily and I swinging at a campground in Oregon, this was the day before his 9th year anniversary of his near drowning accident. I'm happy to say that it was a good year for Luke and our family, no tears shed a first for me:-)

Here's the family right across the Highway from our campground in Newport, OR

Lily and I on top of the dunes

The guys getting ready for a dune buggy ride, fun times.

Here's Luke with some friends at Ft. Stevens park in Oregon, he really did love that boat.

The kids having fun on the beach

Gordy and I got away for a few days to celebrate our 30 year wedding anniversary

On top of the Astoria column, it was a beautiful day

The kids and I at the Puyallup Fair, watching a 4-D underwater show, not sure Luke liked the glasses.

My first time back on skates after falling last January when I got a slight concussion.

Luke at his pulmonologist appointment, can you see the tears of joy in my eyes after hearing for the first time that his Dr. thought that Luke was doing and looking great!!!

Luke swinging once again at PT

Luke after his Gastronologist  appointment where once again he got a great report, Praise be to GOD.

I'm going to sign off for now so that I can get this blog post done. I plan to blog again very soon with more current news.

Luke's Mommy,
Sue