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Thursday, September 3, 2009

Sometimes it is about what's on the other side.

Megan had a really rough night last night. After last night's post about our plans for today, everything changed. Megan's respiratory status became unstable. She got a fever, her respirations became very rapid, and she LABORED heavily.

We had to call in the ICU doctors for ideas to give Megan the additional support she needed to make sure that she was comfortable - and we told them we wanted everything she needed at least until our families could get to us.

Today we collectively decided with the doctors that the MRI would have to wait until the respiratory symptoms subside. Then we talked to the hospice people here at Riley. We told them we were still on the fence about what we wanted regarding Megan's condition but that we wanted her to be comfortable.

Then we talked to the pulmonologist's team on duty. They have seen Megan, her x-rays, her sleep study (turns out they saw what they needed without her sleeping), and the reports from last night.

They do think Megan has a virus. It seems this virus has weakened Megan's system to its breaking point. Megan has lost weight and the pulmonologist says it is not because she is not absorbing the nutrition. She is burning it off at a very rapid rate and then some more. She has lost almost eight pounds since her recurrent illnesses began this April. The pulmonologist says that Megan not only has large tonsils, adnoids, swollen throat, and glands but she also has weakened muscles, including her diaphragm which is what is most needed to take a simple breath (or so we think). All of these things may be minor separately with healthy children but with a child like Megan all of them put together are not compatible with continuing a high quality of life.

We talked about artificial means of supporting her and that would just be prolonging the inevitable with no less risk of continuing to fight multiple infections.

Given this information, we are confident that the Lord is directing us to look to Megan's eternal future rather than this earthly mountain we are climbing. For Megan, what is on the other side is what matters most.

Although this is a very hard climb for our family, we feel a peace about the events of the day. When we started the day I asked Ken to type some of his feelings for a start about how to report on Megan's condition. This is what he wrote:

"I pray for guidance, wisdom, and peace.

We need guidance in how we should plan for Megan's care, and her quality of life.
We need wisdom to know that whatever we decide is best for her. And is part of HIS plan.

We need peace to know that we are making the best choices for her. We want her to know that we love her and will see her again."

I feel that this prayer has been answered throughout the events of our day. It has been the hardest day of our lives. The comfort comes in knowing that Megan will soon no longer be in pain and that we will see her again one day.

5 comments:

Favors With Love said...

You have given it (the situation) to Him and at times that is all we can do. Now just trust and find peace in Him. Thoughts and prayers for all of you.

Pamm said...

I am praying, Lori. I'm not sure how to pray today but God knows me and you and He is with us.

Amy said...

LOri, I have said a prayer for your family, I cant imagine what you are going through. You seem strong in your blog and may GOD continue to give you the strength you all will need as this situation unfolds.

Kristine said...

We are praying for strength, wisdom, peace, and healing.
Love,
Kristine

Anonymous said...

Ken, Lori we are praying for you to find the strenght and the peace that you need in this tough time you are about to face...