Putting on a Brave Face

 

How do you put on a brave face when so many changes are occurring around you daily? It’s difficult…extremely difficult. I can say, however, that I used to be better at it than I am now. Nothing can ever prepare you as a parent to hear that it is time to bring in hospice care and nursing. I had been putting off meeting with our palliative care nurse for some time because deep down, I knew that meant that I was unable to provide all forms of care that Bridget needs daily. The last two doctor appointments that we had with other specialists, we were told that due to Bridget’s growing complex needs, as well as declining state, we would be working with the palliative care team directly for most appointments and anything else moving forward. In the past, they were the team that we kept in our back pocket for future assistance…but I guess that time is now. 

I am battling feelings of guilt and failure knowing that we now require hospice nursing. As a parent, YOU are supposed to be the one to manage and handle it all. Kiss the wounds, hug the tears away, and we’ve reached a point where some of Bridget’s needs are beyond my skill set. It’s hard to not feel overcome with anger toward yourself knowing that you now need assistance to keep your own child healthy and safe. From what I was told though, and also what was shared from another Sanfilippo mom, having the hospice team brought in will be very beneficial when it comes to medication needs, having people in your home to assist with diagnosis instead of needing to go to multiple doctor appointments, and also another set of eyes when you are questioning what could possibly be going on with your child. I will admit that the when the word hospice was brought up, I immediately started crying and almost blocked out much of what was said thereafter. I am so grateful that the nurse we have been in contact with has been more than accommodating, and continued to reach out even though I hadn’t been the most receptive in the past.

To be honest, it took the 2 specialists telling me that I needed to reach out to our palliative care team to even push forward with all of these big changes as I feel like i was a little bit in denial….ok a lot of denial. I have also been told that children’s hospice is a little bit different than adult hospice. There is no timeline set on Bridget’s life at this moment.  However, when asking our palliative care nurse practitioner about her thoughts on Bridget’s current situation, she was able to tell us as gently as possible that due to the regressions and overall quick decline in the last 6 months she is quite concerned about Bridget’s future with Sanfilippo. 

As we discussed Bridget’s varying needs, the discussion of critical life measure paperwork was brought up. I know that years ago we were told that it would be important to have “decisions” about medical interventions agreed upon and files away, but it wasn’t something I had prepared myself to talk about on the very day that we met. You are never told, after you deliver your seemingly healthy little infant, that someday you might be filling out a document about whether you would want them to receive chest compressions, whether you will want them intubated, amongst other questions. I cannot say how much we appreciated the shear patience, calm demeanor, and genuine caring we received while documenting the most challenging discussion we have had to work through yet. Although decisions were made, I don’t believe I will even be able to discuss them with others, due to the fact that they are very personal and also subjective. 

All of this is still very fresh on our hearts, so I apologize if you have run into me in the last week or so and I seem frazzled or not as present. I am so grateful to those of you that I have already communicated this information with. I have been impressed with the genuine compassion and regard toward Bridget and our family. If you were one of the several that witnessed one of my breakdowns…I apologize…but also thank you for being there in a time of need and understanding.

As I sit here and try to even picture what the future looks like…the only word that comes to mind is uncertain. While processing all of these new and drastic changes, I think we are finally past our shock, and hoping to continue to push forward making the most of each day. Every day is a challenge for Bridget now, which is why I really wanted to share this information before people see us out and about and worry about the changes they will see in Bridget. 

Some of her current issues are the overwhelming about of sleeping she is doing still (yet some days she has a good day where we see smiles and she is more awake). She is also suffering from pain in her nerves and joints which came make it tough to transition and get her in a comfortable position. She is dealing with foot contractures, causing her feed to curl inward not allowing her to walk independently anymore. Her eating and drinking are a huge area of difficulty. Most all of her liquids and nutrients are now through her gtube. Her joints are becoming stiff making it hard for her to grasp food and even get it to her mouth, and then her brain doesn’t always remind her that something is in her mouth reminding her to chew or swallow, which is obviously a major concern. One of the worst right now is her seizure activity. She is having so many different types, and now they are varying to all different times of the day as well. Her seizures also cause her to be exhausted and also visibly frustrated and confused, as you would expect. One of the most helpless experiences was when we drove back home from the state baseball championship and Bridget seized multiple times in the backseat (5 times to be more specific). I don’t think I’ve ever driven so fast in my life. We had trialed the first seizure med, which unfortunately caused some other issues, but it did help with her seizures. We will be starting yet another new seizure medication that we’re hoping will be just the right fit. 

So here we are…trying to figure out our NEW normal again. It seems like we are constantly getting used to Bridget’s changes, just to turn around and have to adjust to something else for her. I’m sorry if this update is all over the place, I can’t seem to adequately express our joint feelings and emotions about the new level of care Bridget will be starting to receive. In my eyes, I think the toughest part is knowing where we are at now, hospice will be with Bridget and our family until the end. That is just shattering to even process through. 

Thank you to everyone who continually asks about Bridget, and also to everyone that keeps us in your thoughts and prayers. I know this post might be triggering or hard for some to read, but we appreciate all of you for sticking with Bridget through it all. 

(This was a one-take post because I don’t think I can bare to read through it, so I apologize if there are errors) 

The Barta Family