December 21, 2016

Almost Made It Home

9 months old and looking like a big boy!

Yesterday was quite possibly the worst day of my life. Maybe even worse than the day we sat down at our first ultrasound at Maternal Fetal Medicine with Aiden.

Since our meeting with the specialists at duPont in Delaware, a lot of good things have happened. We put Aiden on a diet, and he started to thin out very quickly. You could tell he immediately felt better. You can actually see his neck, his breathing was less labored, and he started moving again. He has taken off so quickly - moving his head back and forth, reaching out to toys, even trying to roll over with the help of his occupational therapist. It's been incredible to watch his new-found desire to move and finally see him trying to reach some developmental milestones.

We also put him on the home vent in the correct mode for him, and he took off! He did so well, that they kept him on the home vent permanently. He's officially been on it for a month now and has been thriving.

He's been doing so well that we actually started preparing to take him home.

David and I went through multiple trainings for all of his equipment, and roomed in with him for 48 hours to test our abilities and see if we could really do it all for him. Our weekend with him went without a hitch - so much so that we even impressed our doctor and nurse practitioner. They told us they felt confident about him going home.

Sleepover with mom and dad! (Selfies aren't our fortay!)

So we started the process. Home care gave us all of our equipment and set things up in our home. Home nursing came and did their assessment. The hospital brought by his car bed and he passed his car seat test with flying colors. We set up the girls to stay with my parents, and David and I got to the hospital early yesterday to get everything in order and get out of the hospital once and for all.

We picked up his prescriptions, packed up his belongings there, got him in the car seat to double check the straps were in the right places... and boom. He crashed.

I have no idea what happened for sure, or what caused it, but he fell into a blue spell that we couldn't get him out of. He got air hungry, and was only satting at 50% with 100% oxygen. We gave him PRN Albuterol to try and open him up again. We suctioned him like crazy. We did a chest xray. We increased his vent settings to force him back open. We bagged him. We did everything we could think of, but it still took him two hours to calm down and come out of it.

Our doctor told us he couldn't send us home with Aiden like that. Because, and he's completely right, if that would have happened at home, we wouldn't have the necessary tools with our equipment to bring him out of that. And if that happened on the road home? Well, the thought scares me. He wouldn't have made it. David and I had to do the hardest thing we've ever had to do and agree with his doctor. It wouldn't be safe to bring him home.

Going on his daily walk around the hospital. 

In that moment I felt like a ton of bricks crashed on top of me. Here we are a month into being on the home vent, all his things packed and ready to go home, and he suddenly does something that hasn't happened in months. My heart was shattered.

David left to call the girls and tell them Aiden wasn't coming home after all. In that moment I wasn't strong enough to do it myself. And as I'm sure you could expect, they fell apart as well. Especially Melodie. David told me he's never seen her have that sad look in her eye or hear that level of heartache in her voice as she bawled.

After Aiden calmed and fell asleep (he was completely exhausted after it), David and I packed up all his travel equipment, and left the hospital without him again. The hospital hallways felt more cold and lonely then ever before. When we finally got to our car, both David and I broke down.

There is a very solemn mood hanging over our house today. After all the crying I did yesterday, I feel very numb this morning. I'm out of energy and feel like I'm drowning. It hurts so bad to walk past his room all ready to go. I don't know how I can cope.

We are all, his medical team included, confused by this. He had another one of these moments this morning. It's odd and I'm so scared something more serious is going on. There are talks of taking him off the home vent and back on to the hospital vent. I'm sure they will start pushing South Davis again. Flu season is here so the girls are no longer allowed to see him. And I have doubts he'll be home by his birthday at this point.

I'm trying so hard to hold on to faith that there is a reason for this. But after nine months of these ups and downs, I feel my faith slipping. I don't know what I can lean on to anymore. And I don't feel like I can face the hospital. I just want to lay in bed and sleep. And I want Christmas to hurry and be over with.