Wednesday, March 27, 2013

I've decided that I just don't like words that begin with the letter "P" this week

After I received a call from Luke's Pediatrician Sunday morning with the news that on top of Luke having Pneumonia, he also has Pseudomonas, I decided at that time I do not like words that begin with "P" this week. Pseudomonas is a nasty bug that grows in the lungs and can be extremely hard to get rid of, it usually requires a very strong antibiotic. I was happy to report to Luke's Pediatrician, when he called that Luke was doing better than he had been when we went to see him the previous Friday and therefore we both agreed that we wouldn't start a stronger antibiotic unless he took a turn for the worse.

Friday was one of those days that both Gordy and I were in a quandary to know what to do, you see Luke's heart rate was high and we just couldn't get it down below the 140's. I took his temperature and realized that he was running a fever. Normally we would probably just give Luke some ibuprofen and wait another day to take him into the Dr. but since it was Friday we didn't want him to get worse and have to take him into the Urgent Care or the hospital. To be honest I was shocked when I heard that Luke's x-ray came back showing that he had a new area in his lungs that looked infected, he just didn't seem like he was pneumonia sick. Usually when he has pneumonia he runs a very high fever and that day the highest it had gotten was 102. He also was not needing a huge amount of extra oxygen which is another factor in the reason why I was so surprised. 

Another reason we decided to take him in on Friday was because we had a very busy weekend planned, therefore the thought of having to take him in on any other day was just overwhelming to think about. You see I had told the kids that they could have some friends over to spend the night and I knew that though my kids would understand if we had to cancel, because that's what they've been used to in their lives, I didn't want to change those plans. Along with the fact that my sister Lori and her husband Lonnie were coming into to town Friday night for the weekend. On Saturday we planned to have a birthday party for my mom at our home, which made it into one very busy weekend filled with lots of cooking and fun stuff happening.

Other "P" words I really don't like lately are puke and poop, how's that for some bald face honesty. Luke continues to throw up at least once a day if not more often, changing his shirts and sometimes his pants to has become something that is normal for us to do lately, sometimes we change his shirt up to 4 or 5 times a day. Yep it makes a lot more laundry for sure. Luke is scheduled to go in next Tuesday morning to have a new type of feeding tube put in that will allow us to bypass his stomach, we are hoping it will be a temporary fix to help him stop throwing up until we get his pump out, which by the way will be very soon. I'm thankful that that he's doing a little better in the constipation problems he'd been having but that too is also a very real challenge for us lately. 

Another "P" word I don't like lately is pain. That is my pain, to be honest some of the muscle spasms I have in my leg because of my bad back are severe and debilitating to the point that I almost scream in pain. Thankfully those spasms are getting more infrequent all the time, in fact I'm back to walking again this week and made it close to 4 miles today, which puts me at 13 miles walked so far this week. I've come to realize that the only way I'm going to get strong again is by making myself walk and it's helping, thanks be to God. 

I'm happy to report one "P" word that I really like is progress, Luke has been needing less oxygen lately, in fact he's gone some days without needing any extra almost all day long, this is a HUGE answer to prayer that we are finally starting to wean him off the extra oxygen he's needed for so many months. Praise be to Jesus that even though he is suffering from pneumonia, pseudomonas, puking and other problems he's still progressing on getting rid of his need for all the extra oxygen. Some days finding things to be thankful for is a challenge but when I dwell on what is good in my life I find that I'm able to handle the things that are so very hard, much easier.

I hope that you all have a very good Easter and that you take the time out of your busy schedules to go to church, you won't be sorry. I hope and pray that Luke will be able to go this Sunday, what a blessing that would be for our family.

Love in Christ,
Luke's Mommy Sue

P.S. After writing this post Luke began to alarm and didn't stop alarming all night long, it was a very long tiring night as I did everything I could think of to keep his oxygen numbers up and his heart rate number down. The biggest bummer was that Gordy had gone to bed early not feeling good, so I was unable to rely upon him to give me a break through out the night. I ended up climbing into bed this morning at 7:30 a.m. He continues to alarm today, though not as bad. Prayers would be appreciated for both Gordy and Luke, thank you.

Tuesday, March 19, 2013

The Battle's Not Yours - It's The Lords!

Recently I heard a song that reminded that the battle of our life is not ours it's the Lords! I have to be reminded of this on a daily basis. There are times lately that I've been sure that somehow I've done something terribly wrong, life seems to be soooooo very hard. With all that's been going on with my back pain, which is horrible and then with Luke who seems to be doing a little better some days and then other days throws up constantly and needs extra oxygen all the time. Just as I wrote those words about Luke throwing up he did just that, threw up again. erk:-( Okay, now I'm back.

I keep praying that once he get's the baclafen pump out his throwing up will stop and his extra oxygen needs will go away. I refuse to live in fear, but can I be honest, this little thought in the back of my head keeps coming up to bite me with these little lies, that nothing is going to get better, oops did I just say that?? Sometimes we become weary in the battle that we are in, have you ever felt that way??

In filling out the pages of paperwork that we needed to fill out to get Luke's waiver process going, which will get him services. I had to go back to past blog posts to remember times that he's either been hospitalized or when he started seeing certain Dr.'s, I could of called Dr.'s offices to get this information, but that would of meant hours of time spent on the phone. All that to say it was a bit discouraging to go back and read previous posts to realize that I'm still asking for pretty much the same prayer requests that I was asking many years ago. 

The reality that I've been having rough nights with Luke for so many years was like a slap in the face, I knew this but reading it was overwhelming. I recently heard a statistic that Mom's with children who have special needs have 10 years taken off their lives.To be honest when I first heard that said I began to cry, not just for my life but for so many of my very good friends. If you know me at all you must know that I don't live my life by statistics or what other people think should happen, my life is in the Hands of God and He and only He will chose the day I die, since I believe it when the Bible says that our days are numbered of the Lord. That said, I realize that we need to be wise in how we spend our days here on earth, the bad choices we make may not shorten our lives but it may make those days miserable to live out to the fullest.
This is what happens when someone is sleep deprived, yes I did go out of the house today wearing two different shoes, oops, have you ever done this before?
Just about everyday I wake and say to myself, "I'm going to get to bed earlier tonight" but the reality of that happening so many nights of the week just doesn't happen. Even nights that I could go to bed earlier end up being way too late, my body clock is so messed up. I'm thankful so very thankful that God is so faithful to renew my strength each and every time I ask him too. But to be absolutely honest it takes a toll on my life, in my family and in my health. I think its so extremely frustrating when I read that people that don't get enough sleep are usually overweight, yep that's me. Enough said, I've always been a person who doesn't like to hear people whine or be a whiner and so I decide that I'm going to make a change, but I realize that in order for me to really make a change Luke needs to start doing better, alarming less, bottom line we continue to need a miracle touch in Luke's body. 

Yesterday while I was cooking dinner this is how I found Luke, he had fallen off the couch. Thankfully he was fine, though it sure did scare me for a few minutes.
I'm thankful that Isaiah was home or don't know how he would of been put back up on the couch, I'm also thankful that though there was a mess to clean up from his feeding tube that his g-tube didn't come out of his stomach.
So I've decided that in ending this post I will repeat what I said at the beginning, The battle is the Lord's not mine. If I really believe that declaration and I do then I need to continue to completely and totally give every one of my extremely hard days to the Lord, I need to give all my worries to the Lord, I need to give my weight to the Lord, I need to give my schedule to the Lord, I need to continue to give Luke's health needs to the Lord. For me it's got to be all or nothing, that's what God requires from me and when I truly do give every single thing over to Him, He is always faithful in pouring out his blessings of strength, joy, goodness and so many other wonderful things. Yes I know that I need to be wise in getting rest when I can, in watching what I eat, in exercising, in so many area's and then God will take care of the rest. 

Love in Christ,
Luke's Mom Sue


Sunday, March 10, 2013

A whole year of pictures to share with you on Luke's 10th Birthday

Today Luke turned 10 years old:-) I thought to celebrate his day I would post some pictures from this past year of his life because sometimes a picture can speak louder than words.

Luke was pretty proud of himself when he actually helped blow out the candles on his cake, first time ever!
Luke waiting to be seen for an Speech evaluation

Dad and Luke on Easter
Here is the whole family on Easter

Luke and I at the Daffodil Parade in Orting

Luke and I waiting for Dr. Cooper

Luke during his baclafen pump trial

Mother's Day weekend in Seattle
Luke at a Birthday Party at Chuck E Cheese
Luke's picture drawn at Chuck E Cheese

Luke checking out Abigail the day she was born

Luke sick with pneumonia again waiting for a prescription after a Dr.'s visit
Luke, Lily and I at Amy and Lance's wedding

The whole family at Amy and Lance's wedding
I love the expression on Luke's face
Luke at the beach in Oregon in September

Luke, Ezekiel, Lily and I at Mo's Restaurant in Newport, OR on August 30th 8 years after his accident
Luke, Lily, Isaiah and Ezekiel at the Heceta Head Lighthouse

The Kids at the Tillamook Factory in Oregon on our way home
Luke watching the fish, his favorite thing to do while waiting for another Dr.'s visit
Luke getting ready to go into the Emergency Room, his Dr. thought he needed to be admitted for pneumonia

Waiting to be seen in the ED
On our way home from the ED, thankfully the Dr. didn't think he needed to be admitted

Luke and the family after I got done doing my marathon walk/bike ride to raise money and awareness for our year Mom's of Near Drown Children retreat
I pushed Luke the last mile and here I am celebrating the fact that I am finished

Lily reading a book to Luke in his new bed, which was generously donated to us by Lindsey and James Black

Luke hanging out with Penelope on Thanksgiving

Luke waiting for yet another Dr.'s visit

Zeke helping Luke open one of his Christmas presents on Christmas day
Lily, Luke and I sitting at the table playing a card game at our Miller Christmas Party
Luke waiting for yet another Dr.'s appointment
Luke sharing his balls with Abigail

Lily reading a book to Luke in the PICU, she was still had a cough left over from the horrible flu that hit our home

Everyone visiting Luke once he was out of the PICU, it was nice having everyone there
Finally going home after being in the hospital for over 2 weeks, what a happy day that was:-)

Some of our family at Gordy's birthday party in February

Luke thinking it's funny that Penelope is trying to grab his feeding tube, I on the other hand was trying not to freak out

Luke loves having his nieces near him
Luke at yet another Dr.'s appointment, notice no oxygen, one of the few days he's gone to the Dr. without it this past year.
The kids and I on Valentine's Day, Luke first time out of the house without oxygen, for that matter the first time going anywhere besides medical appointments in months.
See Zeke cheering Luke in the background we were all excited to see him actually try to blow out his candles this year.
Most of the guests at his party
Double the blessing, double the fun

Luke loved touching his new cars blanket, thank you Rodriguez family

Mom helping Luke show off his new Avenger squish toy that lights up

I love this picture of Luke looking over at Penelope

Wednesday, March 06, 2013

Three for the price of one or should I say 3 month's crammed into one post

Let me begin by apologizing for being absent for so long. To be truthful I often think I should update Luke's blog and then life gets the best of me and another day goes by without writing. And then to be honest I've been overwhelmed thinking about all I have to say, so be prepared for a long post, just saying:-/

December was full of challenges and also some huge blessings, let me begin with the blessings:
  • We found out that Luke qualifies to receive a waiver which means that we will begin to get some help from the state to care for Luke and also some help to pay for the medical bills and supplies for Luke's needs. It was so exciting to find out we finally got this after being on a waiting list for 7 years. Though I will say that the day the caregiver was finally going to come over to do an assessment she realized that we needed to fill out some paperwork before that could happen and we are still working on that said paperwork, which is like 10 pages long. . . .
  • Luke was blessed to receive a I-Pad 4 from the brother of a dear friend of mine. My friend Jean and I became friends a few years ago at the Capitol in Washington during a Leadership training class we were both taking. Long story short she lost her precious daughter Annie awhile ago and her brother this past Christmas asked her if she knew of a child that could benefit from having a i-pad and she choose Luke. That i-pad has been a huge blessing for Luke to have.
  • Josh, Natalie and Abigail were able to come home for a visit right after Thanksgiving, it was such a wonderful blessing to have them here at least for the beginning of December. And then again it was a bit of a challenge for me to not have them here for Christmas as this was the first Christmas that Natalie has missed being with the family. So Christmas was a bit challenging for me at times as I really did miss their family so much.
  • Our biggest challenges of December came when Amy got sick with the flu and we didn't realize she had it until after she had come over here on the 27th for a family get together. Two days later Isaiah ended up not feeling well, later that night Gordy said he was feeling sick, the next night Lily started to feel sick and then the next day Ezekiel and Josh who was visiting us got it. I kept hoping and praying that Luke and I would somehow not get it, but no I caught it the next day and that evening Luke came down with it. So we brought in the new year very sick. I kept thinking to myself that if Luke gets this flu he is probably going to end up in the hospital and sure enough that is exactly what happened. 
  • Another very sad thing happened in December, my cousins son was missing for a few weeks until his body washed up in Canada. They are not sure how he died but it was was a tragedy to say the least. His funeral was on January 5th, he was in his 30's way too young to die. 
2013 began with major sickness in our home, we had originally planned to go over the mountains to spend some time with my sisters and their families, but we were all way to sick to even think about going. January 6th we realized that Luke was just not getting better so we decided it was time to take him into the hospital,we couldn't keep up with the amount of oxygen he was needing. After spending 5 hours in the ED he was finally admitted in the PICU, which surprised me, I didn't think he was that serious, but of course he did get a bit worse before he began to get better. 

Luke ended up spending a week in the PICU and then another week out on the med/surg floor of the hospital. You see Luke lost his cough and I could totally understand why because it hurt like crazy to cough, it hurt so bad you didn't want to cough unless you absolutely had to, because he no longer coughed he couldn't clear out the extra secretions he was dealing with from the flu and the pneumonia he ended up getting too. Both Gordy and I are extremely grateful for the staff in the PICU, the Dr.'s and nurses we had that week were outstanding and really listened to what we wanted for Luke, we didn't want him to go onto the ventilator unless it was the last resort and I'm happy to say he didn't have to go there, but he was very close a few days. This stay in the hospital was our longest stay since his original stay after his accident. 

Once we got out to the floor the Dr.'s and nurses there were great and they really left it up to us when we thought we would be ready to take Luke home. I kept thinking I was insane to keep him there when they said we could go but we just weren't ready for the care he was still needing until finally the day before we left a good friend of mine asked me what I was afraid of in taking him home and I prayed about it and knew that we needed to learn a new way of suctioning him before I would be comfortable in taking him home. We talked to the Dr. that day, who then talked to the RT, who was more than willing to teach us what we needed to do and that night I went to bed knowing that we would finally be going home the next day.

After we got home Luke was still needing quite a bit of oxygen, so Gordy worked up chart to help us wean him off of it and thanks be to God we didn't need that chart Luke began to get better and better until we could once again get him to the place that he could handle a nasal cannula. 

See I told you this blog would be way too long and I'm not even close to being done. February was also a month full of lots of blessings, but even more challenges at times:
  • Josh, Natalie and Abigail came once again for a visit, you see Josh is still trying to get a settlement with Washington concerning a back injury he had back in January 2012 and needs to be seen by his Dr. here at least once a month until it's all settled. Since they were here and we had not had a break away for a long time, we decided to visit the Oregon coast for a few days. It was a great trip, though a bit to much time in the van for poor Abigail. 
  • One of the biggest challenges Luke has had lately is the fact that he throws up daily and often that's not just once daily but numerous times. So needless to say he's had many Dr. appointments trying to figure out what to do for this. After meeting with a surgeon last week to discuss whether he would need to have a procedure redone to help stop the throwing up we decided that we would wait until he gets his baclafen pump out to make anymore decisions to see if that helps stop the throwing up.We meet with his Dr. who manages his pump today and he said that we can call the surgeon who put the pump in tomorrow to set up a time for him to take it out. That is a huge relief!
 I'm sure I could go on and on with lots more news but I'm  pretty sure if you are still reading this it either because you really like to read about Luke's life or because you have nothing better to do with your time today.

I will close this post with a few prayers requests, there are a couple kids out there that could use your prayers, Samuel who lives in Australia has been in and out of the hospital a lot these past few months and he is not doing well at all, in fact very close to death at this time, both him and his family need prayers to get through these very challenging days. Santana could also use some prayers as they are talking about doing his 5th major surgery on his back, they had put in some rods to help straighten out his spine, but those rods keep becoming infected, his mom Lindsey and dad James are also in the process of trying to sell their home and it's overwhelming right now with all they have going on. Summer is also in need of prayers, she had her nd accident two years ago and she was going into heart failure this past weekend, they are not sure what's wrong with her but she too needs your prayers. Also James, Justine, Landon and so many others needs urgent prayers right now. 

Now that I've just about caught up the news for the past few month's I'm going to try to keep this blog up to date a bit better and I promise to put some pictures in my next post. I've said it before and I'll say it again I do post updates more often on fb and if you want to be my friend there just let me know who you are and I'll add you to my friends list.

Love in Christ,
Luke's Mommy Sue