Overwhelmed

Hi everyone!

So... We are going home! ... on Tuesday. At least that's the plan.

Ella has done pretty well over the last few days sprinting onto pressure support only, so mostly breathing on her own, but receiving extra pressure to her lungs to help keep them open. She did 8 hours (two- four hour increments) yesterday! These are more like strolls than sprints, but hey, I'll take it. I say that because she has been breathing mostly above the ventilator's set rate anyway so it's almost as if she's been on pressure support the majority of the time as is. But whatever! I'm happy about it! We are hoping to wean her off of the ventilator at least during the day in the near future. Some doctors don't feel like she can do it on her own without the ventilator at night because ever since her stroke, she's gone a little apnic at times (stops breathing for longer than the ventilator settings have allowed). I'm not totally sure of what I think is best at this point so I'm just focusing on the now and how to help her get off the vent eventually. Her need for extra oxygen for some reason has heightened. She was on room air (21%) for most of last week and now she needing 35%. We aren't totally sure of why she needs it now, but I figure that's the least of our worries at this point.

We got the home vent delivered to us today. This is a huge step toward discharge. This is the main thing we've been waiting for this week. I was taught how to use it and what settings she's on. It was so much information that I am glad we will be here the next few days so I can get some practice in. I'm not going to lie, I am really scared of the ventilator. Ever since she had that mishap with the ventilator back in April, vents have given me a bit of anxiety. I am really upset that Ella has to go home on one, but I know it's what she needs. I seriously hate the thing (aside from the fact that it's been keeping her alive 😉). The respiratory therapist that trained me was really thorough and sweet. She reminded me that this doesn't mean that Ella will necessarily be on this her whole life, it's just something she needs for now and it's helping her. I often forget that it's helping... I find myself wanting to push her, probably too hard, to get off of it and to breathe on her own. The ventilator is just so cumbersome and bulky. I have a hard time thinking of how she will ever have a "normal" childhood if she has to be hooked up to that thing. Just a walk to sit on our front porch will be a huge ordeal and I thought the oxygen tank was annoying. My brain constantly keeps thinking about how behind she will be developmentally because of this machine... How can she roll over? How can she crawl? How will she be able to do anything that she "should be able to do" by the time that she's a year old? I am also so afraid of it because if any setting gets changed on accident, it could be fatal. Talk about a lot of pressure (ha! figuratively and literally)... I think as I get more used to it I will feel better about it, but man, today totally overwhelmed me. I find myself get discouraged whenever I think of the future, so often I block it out of my brain and try to focus on the present... No living parenthetically or for the future right?  Thankfully we will have the same hospital RT here with us tomorrow so she can continue to train me and help me teach Matt how to use it all. I am reminded of that song that says, "Fear, he is a liar, He will take your breath, Stop you in your steps, Fear he is a liar, He will rob your rest, Steal your happiness, Cast your fear in the fire, 'Cause fear he is a liar." This was a song that Matt and I heard shortly after we made the decision to give Ella the trach. It was like God told us not to be afraid. Matt texted me simply, "fear he is a liar", the other day when I had a feeling that Ella's MRI results were bad. This song has been helpful to remind myself that I don't need to be afraid because God has this. He has us. He has Ella. 

Aside from getting trained on the vent, I was on the phone a TON today. I was taking calls from health equipment reps, doctors, pharmacists, etc. It was one of those days where I just had to get a lot done but didn't really want to 😆. Thankfully Ella has taken this day as a day of rest and has slept the majority of the day so I didn't feel bad for not paying as much attention to her as normal. The main call that I have been dreading was getting all of my work stuff figured out. I have been so thankful to have had so much time off, but my Family Leave is coming to an end on Oct. 12th. Thankfully I have another option. Stress leave for up to 3 months or I could take a leave of absence this year. The leave of absence means that we would have no insurance and we all know we need that! So I had to call my doctor to ask for a letter to receive a medical leave for stress. I thought it would be as easy as that, but it's not... I have to go in for an appointment to talk about everything that's been going on with Ella and how stressful our daily lives are right now and will be when we return home. Thankfully my doctor is able to squeeze me in on Monday otherwise I have no idea when I would have been able to go see him. Another not-so-fun call was the one to Ella's pharmacy. I was so discouraged when I talked with them because it made me realize how many medications she is on. We are now in charge of 13 medications (not including vitamins or MCT oil) to give her daily and about half are more than once a day. It's so overwhelming. I thought the original eight we went home with the first time was a lot... My chart that I posted a picture of back in June is getting bigger and bigger. Most of these medications are heavy duty meds too which is intimidating. Thank goodness Matt and I are pretty type-A people so we are good with this stuff, but I am so nervous I'm going to forget something. I keep praying that God makes my brain sharp and reminds me of something if I forget it.

The other thing that has been tugging at my heart recently is that I will not be seeing all of my "PICU family members" anymore. As excited as I am to go home, my heart aches thinking of leaving because of them. Matt and I have talked about how this will be really hard because we've gotten to know them even better this stay and they have worked so hard to keep our baby alive. I know we can take care of Ella, but it just won't be as "fun" without them. I am really struggling thinking of saying goodbye to them. Even now as I write this, tears are falling down my face just thinking about it. It's like when people go through traumatic experiences, like shootings, accidents, etc., with (what were) strangers and then became really close with them because of the situation they endured together. These nurses, doctors, and RTs have become like family to us and it's so hard to think of not seeing them every day. They have loved on Ella, Eli, Matt and I through thick and thin. It is weird to think that we won't see them anymore. Thankfully we have social media where I can keep up with their lives but it just won't be the same!

This is our last weekend staying in Sacramento, which just feels so weird to say. It has been 66 days since we came back on July 23rd, almost as many days as our first stay. Hopefully we will get to stay home longer than 10 days this time. 💜

Love,
Jillian