In the Swing of Things!

Hi!

Just realized that I haven't blogged in 9 days!!! So sorry everyone, but things are busy busy busy around here! Both kiddos are asleep right now so I have some time to catch you all up!

We have officially been home two weeks!!! Yippee! We are breaking records over here!

Ella has been doing really well overall! She is a lot more alert and is starting to reach out and touch toys. She loves reading with us and looking around the house. Ella has even been able to be completely off oxygen support a few times for hours at a time! She was off for over 13 hours earlier and even now she barely needs any. 🙌We have even ventured out of the house other than when we go to her doctor appointments! We even went to my parents' house today to sit and play in their backyard. Eli was so happy and Ella just hung out on the lounger. It was great!

Here's a fun little peek into our lives...😊 Some of you may have caught my instagram story about how crazy it was yesterday just to go for a little walk around our circle. It was NUTS! I thought it would be fun to go for a walk but (stupidly) didn't get ready for it until about an hour before our nurse was off. So we got all of Ella's gear packed up and Eli was so excited to go for a "dizzy walk" (he calls it that because we just go around and around in a circle). The walk was so great and got us out of the house, but after we got back, I realized Eli needed a nap and the nurse was off. I gave him a snack and during the few minutes I wasn't paying attention to him, he decided to go outside and push our stroller into the garden and flip it over. Fun times. This was after he had pulled down the lamp in his room earlier in the day. He's kind of been doing this "I need attention, so I'll do something to get it, even if it's negative attention" thing. Not my fave. HA! While he ate a snack we noticed some deer outside so Eli watched them through the back windows then I realized, "OH NO! I forgot to spray my plants with deer repellent near the front door," so I opened the door and there was Bambi munching away. I startled him/her and he/she kicked over a pot on the ground, pushed over a little bike plant stand along with a pot and ran away. So my list of things to take care of when Eli was asleep grew a little longer. Anyway, so after all of this, we had to go upstairs to get Eli down for a nap. I hadn't taken Ella off of her travel ventilator so I packed her, and all of her 5 bags, up the stairs and all three of us sat in Eli's rocker and read books. It was weird almost feeling like we were a "normal" two-kid family. After I got Eli to sleep, I trekked Ella and all of her bags down the stairs and made the transfer over to her home ventilator and hooked her up to the oxygen concentrator rather than the tank. As soon as I did this, I realized a did a medical-mom FAIL. I had totally forgotten to turn the oxygen tank ON!!! AH! So Ella was without it for over an hour. I totally freaked out. I couldn't believe that I did that! I got her pulse ox on quickly and checked her oxygen sat levels and she was still within her parameters. God totally protected us! The amount of things that I have to remember with her is pretty mental. I am so thankful that God has protected her from my mistakes I've made with her medical stuff. So that's just ONE of the many stories of our happenings. Haha!

Later in the evening, Matt and I had to do Ella's trach change. Now this is probably the worst part about having a trached kid. We have to take out the old trach and put in a new one... every... week. It is soooo stressful. We are taking her airway away from her for a few seconds and she definitely does not enjoy it. During these times, we don't know how to distract Eli so we just play a movie or show and he zones out. I HATE IT. If any of you have some ideas as to what I can have him do while we have to give Ella our undivided attention, holla at me! And, yes, I've tried art projects or crafts and that lasts about 5 minutes then he's over it...

Monday we got our more permanent nurse who had spent two nights with Ella during our second stay at home back in July, so she kind of knew what Ella has been through and such. So far it's been really good. She is super on top of things and I never have to remind her of a med or a feeding time. So that's been a HUGE help. She is really confident with the trach and vent stuff too which is a big relief. I am still trying to figure out my role though. Sometimes I just feel like I'm in the way and I know that's not her intention AT ALL, but it's just a little weird. I'll get used to it though! We have also had a night nurse since Saturday night and had another one two nights last week. Matt and I can't believe what different people we are with sleep! 😁

I have been able to get a lot more organized with Ella's medical supplies so that's been great and since we've done a couple of outings the time that it takes to prep for leaving has taken a lot less time too! I think we are finally getting into the swing of things! We have a HOME (High Risk Outpatient Monitoring & Education) appointment on Friday so hopefully Ella doesn't throw a curveball and get us out of the swing!

We could really use prayer in having patience with Eli. He has been so strong through this whole process but is starting to get annoyed with Ella and the attention that is directed at her now. It has made me so sad because he doesn't seem to want anything to do with her. We encourage him to go and play with her or sing or whatever, but he's not interested like he used to be. Praying it's just a phase!

Also! Ella has still had tummy issues. She's thrown up all of her crucial meds a couple times now and it's scary! So please continue to pray for that! And lastly please pray for Ella's right side. We've definitely noticed a big difference in it's ability since the stroke. Her hand rarely grips things and her arm and leg move less than the left side. She has also stopped smiling... 😞 She has smiled a few times, but it's rare.

We are all getting a lot more comfortable with Ella's trach and the hook ups and are really getting into a groove now. YAY!

Once again, thank you for praying for us, bringing us meals, and reaching out to us!

Love,
Jillian