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.
From CaringBridge on June 3 (written by me):
Another good day for Samantha. We had to say goodbye to my dad this morning since he had to fly back to Nebraska. Mom got back from the airport shortly before the hospice nurse got here. Whenever her nurse (Heather) comes, Samantha gets a bath. In addition, today she got a new ng tube, placed in the other nostril this time. One of the things we’ve started to realize is that this could be a longer process with Samantha, something we are thankful for. I was worried that she wouldn’t make it until my parents got back. Now I’ve realized that she’s actually feeling better since she’s been home. At the same time, the steady increase in the circumference of her head reminds us that she is still sick/injured.
It’s hard to know what term to use to describe what’s going on with her. Technically the infection is gone – the doctors know that her fluid is sterile from the draw they did at the hospital and from the lack of bright spots on the MRI. But her brain has been mostly destroyed and replaced with fluid, and that fluid continues to expand. If she were an adult, she would have already died from the pressure, but her skull bones are able to continue to shift and release the pressure in her head. Every day her head feels a little softer. But we continue to handle her gently and try to rotate which side she lays on.
One new thing is that she has some swelling on her right side today, her hand and foot. This has gone down throughout the day, and the nurse is not overly concerned right now. We continue to give her medicine and feed her around the clock. The nurse is helping us to figure out some ways to have help from others at night and how to approach it. Hopefully next week we will figure those things out.
In the meantime, I’ve been thinking about a couple of other people who were blessings to us and Samantha at the hospitals. The first is a nurse whose name, I’m sorry to say, I don’t remember now. Every nurse Samantha had was wonderful to us and to her, but I have forgotten most if not all of their names, probably because there were too many of them over the month she was in the hospital. But this nurse was the one on duty on Mother’s Day. It was the first day I felt comfortable leaving the hospital, so when Travis got back from church we went to lunch/dinner together (it was 3 or 4 pm, I don’t know what to call it). The nurse took Samantha out to the nurse’s station with her and held her the whole time we were gone. When we got back, she didn’t want to give her back! She loves babies and loved holding our little girl. It was the first time Samantha got to spend significant amounts of time off the monitor.
Three others were blessings at health bridge: Marlene, Melinda, and the speech therapist whose name I’ve forgotten. Marlene was the PT, Melinda was the OT. One of these women came in every weekday to work with Samantha. They loved to help us with her feeding and with her movement. Marlene and Melinda in particular did a lot of playing with her, bringing in special vibrating toys to help her react and respond.
I keep thanking God for all of these individuals and so many more. Samantha has been and is so cared for. While I would not wish our experience on anyone, I pray that everyone can know the love and support of wonderful healthcare professionals when they need them. It is a blessing.
From CaringBridge on June 4 (written by Travis):
My how fast things can change. This morning early, Travis noticed additional swelling in Sammy’s hands and feet but also her right eye. She was also crying in much pain and overall was struggling to breathe. So we made a call to hospice. Thanks be to God for hospice and the nurses! After the nurse arrived she explained to us that the swelling is part of this process but as Sammy continues to “add” fluid on the brain her eyes will eventually not be able to open at all. She also told us that before she is in too much pain or gets to that point, she will probably be at the point of sleeping all day or being in a coma. According to the nurse this will be her body’s response and help her to be out of pain!
After talking to the doctor, the nurse has now ordered three new meds in addition to the ones she is already on. 1) Morphine, as needed. This will help with here breathing and pain. 2) A med that will stop seizures that is fast acting, as seizures will develop and worsen with breakdown in brain tissue. 3) A medicine that will help reduce, loosen, and thin the mucus and saliva in Sammy’s mouth. That is what she was choking on this morning. As she grows tired and weak, it is becoming harder for her to cough up and get rid of the fluids and mucus in her mouth and throat.
Moving, coughing, burping, all those baby things…each day are becoming more painful for our little Sammy, but we know that the meds, the nurses, the hospice, and the Healing Hand of our Lord are upon her as He watches over her and gives her peace, love, comfort and joy each day. We praise God for all the moments with Sammy we have to hold her, love her, cuddle her, and kiss her cute little feeties! We are also so very thankful to all the family we have here helping to visit and support us and love on little Samantha! And also for all our friends, and church family too! As each day progresses, the help, support, love, and help that our Lord gives to us through you continues to build us up in the love of Jesus! Thanks! And praise God for you all!
We cannot say how blessed we are to be part of the Faith Lutheran Church and School family! We praise God for you, our brothers and sisters in Jesus! We are so very blessed.
Lastly, as I Travis, write this tonight, there is a person I would like to thank and highlight in this posting. That is my dear and awesome wife, Stephanie! She is a wonderful mother and has been through this all. The love of Jesus flows out of her as she holds Sammy, cuddles her, and comforts her! Her strength, that which is a gift and blessing from God, is so amazing and beautiful. Through all of this one of the things that is hardest for me is that she, Stephanie, my wonderful wife, will not get the chance to be mommy for Sammy’s life for years to come. Why? Because she is awesome. What a mom should be! Something many do not get growing up…a mom with a beautiful unconditional love that shines Jesus Christ! She has made choices and decisions that no mom should have to make, but yet with faith in Jesus she does and she lives and she praises Him! Thank, you Steph! You are a true example of Christ to us all and I praise God for you as my wife, and mommy to our little Sammy! You are the best.
Thanks to you all for the prayers, help, support….. We cannot tell you how much they help and mean! God bless y’all!
Next post coming this afternoon.