This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience.
There was too much on May 24 to do one single post, so both of today’s posts will be from that date. Multiple posts went onto CaringBridge, so I will put them all here, as though it is one post (it was originally written by my sister as a 3-part post).
I know many are anxiously waiting for an update, but all the tests take time and then waiting for the results….well, it all just takes time. I will update this caringbridge with 3 installments – one for the tests/results, one for the where do we do from here and another as a list of needs/wants for the family during this time.
The MRI confirmed what the doctors had seen/suspected yesterday. Most of Samantha’s brain has been eaten away by the infection. The only parts that are left is the brain stem and about 25% of the tissue – the rest is now just replaced with csf fluid. The even more difficult part to this is that the infection is still there. Her white blood cell count in the csf fluid was up, the protein levels were high and the sugar was low. The reason this is the difficult part of the news is that we don’t know if what is left is still progressively disappearing. All very difficult news to take in. They also did an EEG again today, but the results of that are not in yet.
Where do we go from here
Where we will always start and always end is putting our hope in the Lord – He is our Rock and our Redeemer. Even when we don’t understand and want to disagree, we know the God is good, all the time; all the time, God is good.
The doctors have added some antibiotics to Samantha’s IV, it is difficult to know what exactly needs to be added since the amount of antibiotics in her system somewhat skews the test to try to find what/where any resistance to the antibiotics is happening, or if there is another bacteria present.
The doctors and medical team also wants to meet with the family tomorrow to begin discussion of palliative and hospice care for Sammy. We aren’t sure what this meeting will involve, but we do know there are a lot of possibilities and decisions that need to be made. Part of this will be determining what is helping Samantha and keeping her comfortable and her needs met vs. causing her pain and discomfort. Please pray for peace, comfort and wisdom for all at this meeting. This will help us to determine where we go from here.
Please Note – this is #3 of 3 entries for today
Needs and Wants
It has been an amazing and wonderful blessing all the many people that have reached out to our family during this time. The prayers that have ascended are such a blessing and we thank you all so much. We also know that an abundance of people have offered time and again to help in any way needed. So we have determined some specific needs at this time. It is so hard to remember who/what/when to call different people for all the many ways that help has been offered. If you can help fulfill any of these things, please email Allison at xxxxxxxxxx (email no longer valid). Thank you so much.
Please know that first and foremost we want, need and appreciate your prayers. For other specific ways to help see list below:
* Meals with Stephanie and Travis in Houston: (this would include providing a meal or coming and sharing a meal with them, in the cafeteria and/or going out somewhere).
Please know that this may need to be flexible, so I will only put a few days at a time on here.
Thursday, May 26 –
Friday, May 27 –
Saturday, May 28 – (this may include the person on the next item on the list – see below)
Sunday, May 29 –
** Staying with Stephanie over the weekend. This could be a combination of different things – either someone coming on Saturday and spending the night there in the hospital room with Stephanie and Samantha (asking only female friends, and must be willing to sleep on a pull-out sofa/chair). OR someone willing to come and spend Saturday afternoon/evening and someone else willing to come and spend Sunday morning/afternoon.
*** Parking $ assistance. This could be cash for parking or help in buying a parking pass (this includes a # of days that can be parked on)
**** Financial assistance for family members coming to stay. Currently we know that Travis’ dad is flying in this weekend. He will need to stay at a hotel downtown so that he can spend as much time with Samantha, Stephanie and Travis as possible. If you can/are willing to help with this in any way, we would greatly appreciate it.
***** People willing to be on-call for babysitting for Mark and Allison’s girls. We already have some wonderful people who have been doing this and are on the list, but it would be helpful to have a couple more just in case we are in a pinch.
I will try to continue to add things as they come. Thank you for your consideration with these needs at this time. Please continue to lift Samantha, Stephanie and Travis up in prayer, as we know this is the most imoportant thing that can be done at this time. God bless you all!
Next post coming this afternoon.