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.
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 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