Oh man I am tired. So so tired.
It's a dang good thing this is the only hospitalization, besides an overnighter, since daddy's been in Cali. There's only one of me, and everything to be done. Daddy is not here to go up to the hospital, or be home with the boys. He comes home Friday. Even though I'm super excited that Auntie Boo's hubby got a job in Cali so we can be close, she beat us there. So we don't have her to come sit with Jax when I can't be there.
I had to leave him at 4:30 today, so I could come home and do laundry and dishes, and get some groceries. I took the boys to get a sno cone at the sno shack, since they've been cooped up inside for 3 days. So packing, uh, I guess that will be done the night before we move!
Jax also had a rough day. I got there, and he was on double the oxygen he was on yesterday. The ambubag was out and on his bed, so I asked if something had happened. His RT said that he just desatted pretty low for a bit. She said it was probably a plug. I said he doesn't get plugs, that its his sick lungs trying to work when he's sick. He was wretching and gagging on full J feeds, and his belly was up 5 cm from yesterday. Feeds were turned off, and the doctor called. He just said to hold feeds for 2 hours, and restart and see how he does. He hasn't said much about the oxygen need increase. I called pulmo to have her look at his x ray. She said you can see aspiration, and also pulmonary edema. She thinks that because his cardiovascular system is so weak, that aspirating has really messed it up and he's leaking fluid into his lungs. His heart is also bigger. I told her that he was mottled and sleepy. She thinks his heart may need some help. That would mean going to the PICU for pressors. Going to the PICU wouldn't be such a bad thing. He hasn't been on the floor in over a year, only the PICU, so I forget how hard it is to get doctors to do things. If he was in the PICU and I said he was mottled and yucky, they'd be all over that.
I'm a bit ADD normally. I think that's how I handle so many different things at once. I like to be moving constantly. Lord knows we've had much longer and scarier hospital stays. But I can't believe how depleted I feel tonight. I can't wait to climb in bed and sleep!
Our princess has a birthday on Sunday. We have decided that since everything is utter chaos right now, that we will have a birthday party on her gotcha day, in November.
And because I need some smiles, and I'm so excited I got the princess to sign for the camera, here is a super cute video of her. Its kind of long and shaky, but well worth the watch!!
Still sending many many prayers. I HATED the floor...I liked the extra attention in the PICU. Good luck. I hope he is better soon. Poor Jax.
ReplyDeletePraying hard for Jax and for you.
ReplyDeleteLove the video.
So so sorry. I felt the same way last week. It was only four days and I know so many have it harder, but I was sleeping at the hospital (one thing that was sooo much easier before Max was mobile - I felt like I could leave him overnight) and juggling Piper. Steve might as well have been out of town he was working so much. I'm still trying to catch up. Praying Jax is home soon!!!!
ReplyDeleteThis post has me in tears. I know how tired you must be. I want you to know that I love you and think of you and your beautiful family daily. I want nothing more then for Jax to come home and be and stay healthy!!! I will try to get a sitter if you want and I would love to hang with Jaxson... im no auntie Boo but Im a fun girl ;)
ReplyDeletepraying for Jaxson...healing ! healing! rest and more healing!
ReplyDeletepraying that his drs listen to you...UGH!!! just keep at them until they listen!!!!
what a sweet video! we luv baby signing times too!
She's so stinkin' cute!!!! Thanks for posting that video. She's so amazing! and you're all amazing for giving her the wonderful life you do. And Mr. Jax. Sweet Mr. Jax! I'm thinking of him and you and everyone and hoping you get through this rough time quickly and without too much struggles for the little man and you all. Know that many people are thinking and praying for him!
ReplyDeleteHope you got some good sleep, and hope Jax has a better day today! Hang in there! Love, Hugs and Prayers!!!
ReplyDeleteonce again you have a lot going on...i hope you get some relief soon and that jax takes a turn for the better.
ReplyDeleteI continue to follow your blog, although I rarely comment. I am a nurse at PCMC and remember Jax from the early days in the PICU. I thought that if a trach/vent kiddo was having any respiratory distress at all that they were supposed to send them to PICU and not to L pod. Regardless, I hope he gets the care he needs to return to his baseline status and health. You are such a great mom to be able to balance the needs of all of your children. I would be exhausted also! Hang in there.
ReplyDeleteThinking of you and Jax...I can't even imagine how you must be feeling right now. Hope he's feeling better soon.
ReplyDeleteArina is PRECIOUS. Love her signs - great job, pretty girl!!
Hang in there, Lacey. :-)
Praying for your sweet boy and for peace right now for you. I can't imagine your stress level.
ReplyDeleteWOWIE can't believe Arina's bday is this week! Time is flying.
Urggh it really sounds completely emotionally and physically exhausting for you, I can't even imagine what you must feel like. I loved the vid of Ariana she is a doll, its funny how these normal moments still happen in the day despite all that is going on, your doing great.
ReplyDelete