Well, no home for us today either, he had another horrible night. I'm staying up here tonight so I can keep things in check and get us home tomorrow. He spiked a fever last night, but I think he just worked himself up. His temperature gauge in his body is broken, and he can work himself into a fever. He hasn't had one since. They also did a contrast study to see if he has a bowel obstruction, he is not tolerating feeds and having a lot out of his stomach. No obstruction, just his unbelievably slow bowels. When he has surgery his bowels just quit working for a while. If you remember when he had his cecostomy in June, he was cranky for a month and we wondered if we had done the right thing. I think we just need to get home, in his own bed. It will be hard for a few weeks, dealing with the crankys, but I'd rather deal with it at home. Jaxson will never be super healthy, and he'll always keep the doctors stumped. We could be here forever while they try to figure him out.
I love the attending we've had this week. He's never had Jax before, and he told me today that having him is very humbling. It makes him love his job more. I get that a lot from doctors lately, they shake their head when they hear his history, and are amazed at his strength. Me too, my little superbaby.
I am truly amazed at his strength too. I pray that you will be in the comfort of your own home soon...
ReplyDeleteHis strength and your strength is amazing! Hang in there...I will pray that he will have a better night tonight and you all are able to go home very soon...
ReplyDeleteGive that superbaby a kiss from us all and we pray that home is on the horizon ... soon.
ReplyDeleteHope you have a good night Jax and get to go home soon.Hugs
ReplyDeleteHey friend. He is a THE superbaby! Hope you guys find your way home tomorrow! Will pray he starts to feel better all around and that you guys get home and settled so CPK can once again be in the plans! Miss and love ya!
ReplyDeleteMom knows best...share your diagnosis with others...poor Jax needs uninterrupted mom sympathies at HOME.
ReplyDeleteHoping you're on your way SO soon...
Hoping you are home soon. I love how you are taking charge and letting them know that you know best!! What a great mommy Jaxson has. I bet he would love to be home settle in his own house and be more comfortable. Praying that you and superbaby get home. You both are troopers!!
ReplyDeleteIt amazes me how much Jax has been going through and how wonderfully strong he is...it's obvious he's a true fighter and don't worry he shall keep fighting along, his spirit is strong. My prayers continue for Jax and sending all positive thoughts your way. I hope you guys get home soon :)
ReplyDeleteHe is a super baby.. and you the super mom. Perfectly matched. Get home soon! Prayers as always!!!
ReplyDeletePraying you are on your way home and Jaxon gets better. Keep up the good work Mama.
ReplyDeleteHe and you are inspirations!
ReplyDeleteHe is the absolute superbaby! Praying that today will be the day you can go home. I am glad you have a good attending - that makes a huge difference - especially if they listen to you! Good luck and give Jaxson lots of loves and hugs from us!
ReplyDeleteI hope you get to take Jax home soon. IT's always nice to be at home.
ReplyDeleteYou both are amazing. Phenny and I are so blessed to have you in our lives. Hope you are home soon. give Jax a hug and kiss from us!
ReplyDeleteSorry you aren't home yet! Praying you get there soon! He will definitely do better at home and so will you!
ReplyDeleteJax is the ultimate superbaby! He just keeps fighting and proving that he's one tough boy! Keep fighting Jax and get home soon! Love and Hugs!
These little ones astound me. How they just keep going day after day. I hope y'all get home so soon. I'm glad you like your attending this week. I threw a mini tantrum at mine today. Oh well, it got me some action. sad that it was required. Thinking of y'all and hoping you are home so soon.
ReplyDeletehugs to you both!
Still praying. Hoping that last night was better!
ReplyDeleteI am in awe at your strength, you are an inspiration to me. You are in our prayers that you will be home soon.
ReplyDeleteHe is amazing! as is your whole family. Kaelyn wants Jax to come home so they can meet.
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