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.
This post is three days of CaringBridge posts. I didn’t blog on June 7, 8, or 9, but I did post every day to CaringBridge. By the way, it’s a very good tool to have when going through medical issues. We are big fans of it, and know several others who have made use of it along the way. I’m very thankful for this record to revisit some things, and I’m glad I took the time to mention folks who were helpful to us along the way. Many are people I had forgotten about, and it’s nice to give thanks for them again now.
Busy day! Samantha had lots of visitors today. First off, we had a pretty quiet morning when we got up. Then in a short period of time it seemed like either the phone rang or the doorbell several times in succession. Fedex brought a medicine delivery, a medical supply company brought her suction machine, and a lovely fruit bouquet was delivered. Lunchtime brought Nana back (she went to my sister’s house this morning to watch my nieces) with three cousins, and as we were finishing we got a visit from a friend who lives down in Houston. This evening brought a woman from church who made dinner for us, plus all the cousins, Allison, Mark, and Mark’s parents. Whew! But we love having lots of people come to see and hold Samantha. The more people that can get to know her, the better as far as we’re concerned.
In the meantime, we’ve had to continue to give her morphine. We’ve also started to adjust her feeding schedule to spread out the time between them. The medicine that arrived today is one that helps to control her secretions, and it really does seem to be helping. Amazingly the morphine doesn’t seem to make her sleepy yet. She ends up being somewhat awake for a while after we give it. With all of the changes (and knowing more are to come) with her feeding and medicine, we’ve taken to writing down all of the stuff and what times we do it. It just helps us keep track for the nurse and also for ourselves.
Tomorrow the nurse comes again, so we’ll see how things are progressing. She is better able to see the significance of some of these changes in Samantha. In the meantime, we are blessed by her current nurse. Heather takes such good care of her and answers all of our questions, even takes our calls/texts when she’s not here. I can’t imagine being a hospice nurse, but especially one taking care of children. It takes a special person indeed.
One more medical professional I want to make sure I highlight here is Dr. Dahm. He is an attending in the PICU at the hospital. When Samantha was in there, every time the neurology team would come and give us bad news, Dr. Dahm would help us calm down and remind us that we needed to pay attention to how Samantha is doing clinically. Ironically the neuro team was right in all of the doomsday stuff they told us, but at the time we weren’t able to think about it. Dr. Dahm was also the one who did her two lumbar punctures and we credit him with doing a lot to save her life initially.
I think God knew we needed more time with Samantha. That’s why her life was spared those first critical hours when she was so severely sick. It is so difficult to watch her slowly slip away, but I don’t think I could have survived with my mental faculties intact had we lost her that first night. And this whole process has strengthened our marriage more than the previous ten years of our relationship combined. I really can’t begin to speak for God, but I sense His hand guiding this process and protecting us through it. Samantha needed to meet our extended family (and they needed to meet her, too).
Have I mentioned lately how good it is to be home again? As hard as it is, it’s amazing to be here again with her.
Samantha got through a large portion of the day without incident. This morning she had some trouble breathing when we first got up (6am) but after a dose of morphine she was fairly comfortable and sleepy most of the day. The nurse came and gave her a bath along with the usual exam. She said we will be heading into a difficult time and gave us instructions for the various comfort medications Samantha has.
Sammy did have some difficulty around six this evening. We’re fairly certain she had a seizure which triggered some throwing up. So the comfort meds did get used. Technically that’s what the morphine is too. At this point she has four regular meds plus several as needed. We are also noticing that she isn’t as hungry anymore. Again, we are told this is normal. Meanwhile we each go through times of sadness and times where it seems like this has to be a bad dream that we’ll wake up from.
Please keep my brother in law Mark in your prayers tomorrow as he is having surgery. We know so many of you have been prayer warriors for Samantha and we appreciate it.
It seems like life is so much busier now that we’re home! We’re not complaining, believe me. Samantha had a steady stream of visitors today, from a family friend from Nebraska who was in Baton Rouge on business and drove here for the day, to church members to a teacher from the school. And of course her cousins were here for much of the day too. Lots of pictures were taken, lots of hugs given, and many prayers promised. We talked with the nurse first thing this morning about some of the things we’re noticing – less tolerating of feeding, the seizure Samantha had last night night, the trouble breathing, the lack of bowel movements. All of these are signs that her body is starting to shut down. The nurse said it will probably be a matter of days, although only God knows for sure and it’s up to Him. So we called my dad and he is on his way back. He has been having a hard time being alone anyway and we’d all rather have him here right now, between Samantha and Mark.
Speaking of Mark, his surgery was today. All went well, and if you want more details or to follow the updates, go to my sister’s blog at xxxxx (pm me if you would like a link). We are hopeful that this surgery will provide him some relief.
In the meantime, we continue to be overwhelmed by the people who are posting here and where they are from – New Zealand? And we noticed that a company gave a caring bridge tribute in Samantha’s honor, a company we knew nothing about prior to this and can’t figure out any connection to. It’s amazing how God continues to use Samantha’s life to reach so many people.
I also keep looking back and thinking about those who have cared for Samantha during this journey. While we were at HealthBridge, a nurse named Andreas was so kind and compassionate. He was very ready to help with anything we needed. In addition, there was a respiratory therapist named Mark who seemed to work every day – he would work three overnight shifts per week, but when they ended up being Thurs/Fri/Sat of one week and Sun/Mon/Tues of the next, we ended up seeing him six nights in a row. The first time he worked he came rushing in to check Sammy because it looked like her oxygen had dropped. In reality, the sensors they use for it didn’t fit her tiny little feet and they would often stop working for short periods of time. But he was very kind and would pop in his head to check on us each night.
I’m also reminded of a little boy who was about three. He had a tracheotomy and would walk around using a tiny little walker. He was adorable and didn’t seem to have any family with him. He’d sit in his high chair in the doorway to his room so the nurses could keep an eye on him. We’d wave as we went by, and he’d shake his head at us (as if to say, “No no, you’re not supposed to wave at me!”). I think if I weren’t so heartbroken with our current situation I’d be running out to adopt a kid or two who is in foster care and has health issues, just because our time at HealthBridge showed us how many kids fit that description. I don’t know if this little boy was one of them or not. But I’m not sure I can handle losing another child. And it’s really not a decision for us to be making any time soon, anyway.
But if any of you out there have EVER felt called to reaching out to children with special needs, please do it in Samantha’s honor. There are so many kids who need love. Samantha has been blessed to be so loved in her short life. It makes me sad(der) to think that there are kids who don’t know it.
Enough of that soap box. Don’t feel pressured to do something you don’t feel called to do. I know how easy that is, but the truth is sometimes we fight against where God is leading us. Sometimes we allow ourselves to be guilted into a path God isn’t leading us on. I don’t know for sure where God will lead us in the next chapter of our lives, but I do know that Samantha has changed it forever. She will be on my mind and in my heart until the day I go to join her in heaven.
Next post coming tomorrow.