Praying for Megan!

Today I put a prayer button for Megan on my sidebar. Mostly, these buttons are for giving to those who have a website or blog and want to display it to remember to pray or tell others that they are praying and to spread the word.

I was hesitant to make a button at first because I have been very private about my feelings toward Megan's illness. And, for a long time, her health was very stable - the previous 2 1/2 years to this April were "hospitalization free." It is easier to place her ultimate prognosis on the back burner, so to speak, when everything runs status quo for so long.

While we are celebrating the fact that Megan has set a new record (5 weeks) since her last hospitalization, she is by no means "better." She is towing a very fine line healthwise. Megan has days where she sleeps most of the day, days where she is awake and uncomfortable most of the day, days where she is alert most of the day, and, every now and again, we see a spark of the smiles we loved in April when we found out that we would indeed be bringing her home again.

Megan has also been fighting infections the entire five weeks we have been home from the hospital. She has had two urinary tract infections (which she is taking antibiotics on a long term basis for now), a respiratory infection, and gastrointestinal side effects of taking antibiotics regularly.

Megan's pulmonologist told us on August 7th (when we discussed the sleep study) that if we are going to consider placing a tracheostomy to help keep Megan's airway clear and use the c-pap machine for her apnea issues at night, now is the time to do it. After much consideration, we have decided that this additional invasive procedure will be very hard for her physically and give her yet another outlet to invite infections.

We are confident in our abilities to carry out Megan's care regimen as it is and want to help her stay as comfortable as possible for as long as we can. Megan is currently having some pain due to her scoliosis and is very uncomfortable when she is placed into a sitting position. She even voices her discomfort when we reposition her on the couch or in her bed on her bad days.

We are looking into any non-invasive ways to help Megan reduce her pain level and are trying to help her stay as agile as possible. We do not want Megan to suffer. Sometimes her cries are more than I want to hear. Her cries no longer sound like a "Mommy, I scraped my knee" type of cry. They are much more intense.

Please pray that Megan will have the strength to endure whatever she may encounter, that she will not spend the rest of her time with us in pain, and that we can make as many memories as possible with our precious gift.