24 Very Long Challenging Hours

Sometimes you wonder how much you can handle in a 24 hour day and though this is definitely not the most challenging day I've had in my life it's perhaps in the top 10.

12 am - I'm still up because even though Luke is doing a bit better tonight I'm having a hard time shutting down my mind, after being up so late each night for so long my clock is turned around a bit. I decide to finish up my last blog post, start another load of laundry and then since Luke is doing so good try to get to bed.

1 am - I give Luke his nightly medications, clean up the kitchen a bit, put one more load of laundry in the washer and by the time I'm done with all of that it's close to 2.

2 am - Climb into bed and thankfully conk out pretty much immediately.

8 am - Get woke up by Lily climbing into bed with me, thankful for the full 6 hours of sleep. I can't remember the last time I've actually had 6 hours of uninterrupted sleep. Shoo Lily out of my bed to get dressed and eat breakfast so that we can get some school done.

9 am - Finally climb out of bed, check my e-mail to see if I have any results listed from Luke's blood work or x-ray from the previous day. Shoot off an e-mail to Luke's pediatrician asking if he's heard anything. Get the kids going on their school work and Zeke to practicing his piano lessons.

10 am - I get the e-mail from the Dr. saying that the x-ray does not show pneumonia, but does show a severe scoliosis in the spine, along with the details about the atelectasis and bronchilectas Luke has in his lungs. The blood work comes back a little better from the last month, but shows Luke's CO2 numbers high, along with some definite inflammation. I then work on a couple medical bills that I've been needing to take care of, thinking to myself that I definitely don't need that stress today.

11 am - I finally stop for a few minutes to eat a English muffin, clean up the kitchen, help the kids with some more school work, get Luke's stuff ready to go to his appointment. Amy gets home from a Dr.'s appointment, she has a bad sinus infection brewing, so I'm thankful that she went in for some antibiotics.

12 pm - I jump into the shower, kicking myself for waiting so long because now I'm stressed that I might not make it in time for Luke's appointment. I'm literally running out the door, well not really running as I am carrying Luke and it's challenging just to carry him these days since he weighs about 50 pounds. As I'm getting on the Highway I have a car pull up beside me to tell me that I my back tire is going flat. I pull off the next exit and take a picture to text Gordy asking if he thinks I can make it to my appointment, because even though it's definitely low, it's not flat. I decide to go ahead and try to make it to the appointment because I don't want to have to reschedule it.

1 pm - I pull into the parking lot thanking the Lord for a parking place, I jump out of the car get Luke's wheel chair out, put Luke in, put his back pack in the bottom of it, grab his suction machine, his oxygen tank and my purse and I literally run to make it in time for his appointment. We make it there 5 minutes late. After giving the nurse all Luke's medical information we finally see the Dr. about 30 minutes later.

2 pm - We finally meet this new Pulmonologist. I don't know that anything he had to say was good news, in fact it was quite depressing. I had brought the x-ray from yesterday to show him and then he proceeded to tell me about all the horrible things going wrong in Luke's lungs. He showed me the Atelectasis, which is his collapsed lung on his lower right side and showed me the middle of his lung where there is scarring from constant aspiration, then he showed me where Luke has too much air in part of his left lung, which is causing stress on his heart, then he showed me the curve in his spine which is also causing air flow issues. He then went on to tell me that he could tell by looking at Luke's finger tips that his bronchialectasis was not doing good.

2:20 pm - To be honest I learned more today than I have ever learned from an appointment like that before. I sat there just wanting to cry. He then went on to say that he's not sure a trach is Luke's best option right now, which was a happy thought for me. Because a trach could weaken his cough, of which he has a good cough now. A trach could also cause more secretions, which would be a bad thing. He decides that we need to do another sleep study, to see how bad his sleep apnea is at night. He also put Luke on two new nebulizer treatments, one is to help dry up his secretions and one is a steroid. He also put Luke on Cipro again to see if we could get rid of the infection that is constantly brewing in his lower lobes. Whew!

3:00 pm - I walk over to the Mary Bridge Speciality Clinic to sign a waiver to allow the therapy unit to appeal a wrong diagnosis code they used when Luke went to see a OT there. You see they put down cerebral palsy instead of anoxic brain injury, due to a drowning accident. Of which our insurance will not cover Cerebral palsy, but will cover anoxic brain injury. They wanted me to appeal this wrong coding even though I didn't do it, long story longer the sweet receptionist told me that she would take care of it but needed my signature to allow her to proceed. That done Luke and I now walked over to another building to get his prescriptions filled and to take in Luke's sputum collection to the lab. When they told me it would be about 20 minutes to fill the prescription I told them I would go grab a bite to eat and be back to pick it up.

3:40 pm - I walk down the hill to Subway, by now I'm so hungry because all I've had time to eat today has been a English muffin. I eat my lunch and head back up the hill to Group Health thinking I had given them plenty of time to fill my prescription, but no when I get there I find out they are still working on it. By now all I want to do is cry. I wait about another 15 minutes, freaking out because we are having to be by all the sick people in the waiting room, they finally call us up there and we find out the reason it's taken so long is because they are on hold waiting to be sure the Dr. has prescribed the correct amount of antibiotic because to them it seems to be extreme. I tell them that Luke just recently had this prescription, they check on it and sure enough they realize it's okay.

4:00 pm - I walk back to the van and just sit there and hold Luke for a few minutes, shedding a few tears thinking to myself without a touch from Jesus I just don't know how much longer Luke is going to live, my other thoughts are how do you let go of your precious child. Then I remember about my tire and wonder if I have the energy to take care of it. Just about that time Gordy calls me to say he is done taking the boys bowling and he will come help me with the tire, whew, what a huge load that lifted off my back. We then trade vans and he takes the boys home.

5:00 pm I run into Costco for a few items, fill up the van with gas. On the way home I get a call from my sister telling me that her husband has to have open heart surgery on Monday, my heart is broken by the pain I hear in her voice.

6:00 pm - I get home just in time to kiss Gordy good-bye, he is going to a football game. I then get Luke fed and all the ingredients ready for the boys to make individual pizza's. You see Zeke's birthday was last Wednesday and I told him he could have some friends over to spend the night, so he along with Isaiah, has Ben, Josiah and Nate over for a friend birthday party.

7:00 pm - I get a call from a good friend telling me that she found out today that she has a lump on her thyroid and the Dr. thinks it might be cancer, along with some other bad news she has just learned today, I pray with her believing that God will heal her and help her get through this day of days. I clean up the kitchen, then make some homemade no bake cookies for the boys, I then get Luke ready for bed and hold him for a bit doing some chest percussions on him.

8:00 pm - Zeke opens up some presents, then the boys have cookies and ice cream.

9:00 pm - I get Luke into bed late tonight, he starts out the night with great numbers on his oximeter, I then sit down to the computer to get caught up on face book and watch a movie on Netflix.

10:00 pm - Gordy gets home from football game.

11:00 pm I respond to Luke's alarm he's is having one of his sleep apnea episodes, not breathing at all, I'm trying so hard not to panic but it's hard when his numbers are dropping down into the 60's before finally rebounding up again.

11:45 pm - I tell the boys it's time to get ready for bed.

12:00 am - I tell the boys once again to get their teeth brushed, jamies on and climb into bed. Then I sit down at the computer and decide to write about these last 24 hours. I realize this post is way to long, but I guess I don't care once again this is my journal of our journey and this is one day I hope to forget about one day,therefore I need to write it all out so that I can look back on it with thanksgiving that God gave me the strength to make it through without completely losing it.

The End
Here's a picture of the boys at Zeke's Birthday Party