Thursday, April 14, 2011

Still trying to process Luke's Pulmonologist Appointment, deciding to Trust God but it's not easy

I was really dreading Luke' s Pulmonology appointment, I knew that if I was completely honest with his Dr. then I might hear things I did not want to hear and I was right. To be honest it is sooooo hard to continue to trust God in all things, that is so easy to say, not always easy to live. As you know from previous posts our nights are extremely challenging to say the least. It's rare, in fact I can't remember the last time I had a full night of sleep here at home, I know that I have, I just can't remember the last time. I shared with the Dr. about our challenging nights, including telling him about the times that Luke decides to just stop breathing sending his o2 numbers dangerously low, along with the fact that he's on oxygen most nights of the week. After his Dr. listened to his lungs, looked at his recent x-rays and heard what I had to say he wants me to take Luke in to get a chest CT scan, he thinks that Luke might have bronchiectasis, which is a disease where the bronchial tubes enlarge, causing a person to have constant coughing that produces a lot of phlegm, it also causes that person to need extra oxygen. He also mentioned the fact that Luke is probably going to need a trache again. That word trache sends me into a super spin, I now can think of many questions I should of asked the Dr. but I was put into a panic the second I heard that T word. I guess in the back of my mind I've been wondering if that is where Luke is going to again, not wanting to believe it though.

After the appointment I took Luke on a 3 plus mile walk at a park near the hospital, it was good to get out, I needed to cry a few or okay a lot of tears. I've been asking myself why I hate the trache so much, I mean in some ways it would bring some relief and help to our family in the fact that we would once again be able to get nursing care, but then on the flip side that means we have to have nurses in our home again, we were blessed last time to get some wonderful nurses, but that took time going through some nightmare nurses, to get the good ones.

I guess the things that bother me the most about Luke getting a trache again is:
1. Feels like we are regressing in his progress.
2. He loses the ability to make noises, without the help of a trache covering.
3. Only people that are trache certified are able to watch him.
4. I don't know how we will be able to take a kid with a trache camping.
5. The costs associated with a trache are huge, even after our insurance paid their part we often had to fork out another $200 to $400 a month.
6. You are never, ever supposed to leave a child with a trache unattended in a room.
7. The fact that he will have to go through another major surgery.
8. He will have a hole in his neck, the chances of coming down with more infections and problems are greatly increased.
9. I just don't want to go down this road again!

After crying many hours I've once again had to come to the realization that God is in control, getting a trache again doesn't mean that Luke is not going to be healed, it just means it's another road we have to take on this journey that we never wanted to go on, a painful road. I know that God is faithful and He will give us the strength we need to get through this journey, I know that I know that this is true, it's what keeps me going.

Nothing is going to happen for sure for at least another 3 months, a lot can happen in the 3 months, I am going to be praying that God will reach down and miraculously heal Luke's lungs, that when he goes in for his chest CT scan next month, his lungs will look great. I know that God is the God of miracles, nothing and I mean nothing is impossible for him to do. Would you please join us in believing for this miracle?? It's comforting to know that others are going to be joining us in believing us for this miracle, please let us know if you will in faith believe with us for this miracle.

Love in Christ,
Luke' s Mommy Sue

PS Just had to share with you two excerpts from The Streams in the Desert devotional:
April 12 - Extraordinary afflictions are not always the punishment of extraordinary sins but are sometimes the trials resulting from God's extraordinary gifts. God uses many sharp-cutting instruments, and polishes His jewels with files that are rough. And those saints He especially loves, and desires to make shine the most brilliantly, will often feel His tools upon them. R. Leighton - This reminded me of how much God must love me because I've been feeling the pain of those tools on me lately.
April 13 - Have you been looking forward to telling about trusting Jesus, but instead He is asking you to show what trust is, by waiting? YES!!!!

PSS Please keep baby Jake's parents and family in your prayers, he went home to be with Jesus and they are grieving his loss. Also please continue to keep Annie's family in your prayers, I know that they are feeling her loss greatly.


Stacy Degele said...

I will be praying for a miracle to heal Luke's lungs. I also pray for you, Sue, you are a great woman, and MOM!


Michelle said...

Sue, Emily is 16 and has had bronchiectisis for many years. Until this last illness she had been fairly well for the last 2 years even though the B is in both of her lungs. I think this yukky cough cold going around is worse than having bronchiectisis. It is very slowly clearing from her upper airway, but she and I still have it. I hope you don't have to do the trach route. One thing that helps Emily is using the Flimm fighter. Do you have one of those? Its an electronic percusser. Emily really likes it.

Still praying for Luke.

Michelle & girls

Jean said...

Sue--Can you ask Luke what he wants? Maybe he feels strongly about it one way or another, and that could be your guide.

Praying for you all,


Isaiah 30:21