Jaxson is home! He came home yesterday. Thursday before his surgery he was gagging and retching like crazy! His bicarb has been super low, and we've had to increase it to an exorbitant amount to keep his level stable. Friday night the retching finally stopped and his lab Saturday morning was ok, so home we came.I love our ENT, but we are going to have to have a nice long chat at our follow up. His tracheal malaysia is moderate, which I already knew. She wants to do a big airway surgery, where they take cartilidge from ribs and fix the airway. Then she wants to decannulate him!
I love her zest, but she is getting way to gung ho! His airway is NOT why we trached Jax, his lungs are. Bipap and cpap do not work for him. He actually desatted more on the bipap than regular oxygen. But his PH was getting really bad, and that is why we trached him. Fixing his airway is not going to help this problem.
I've just emailed his neuro because I'm still concerned that his diet ratio is too high. His color is absolutely horrid. His face and lips are grey. I keep checking his sats to make sure he is ok. The are not horrible, but he looks horrible. His lips and secretions are really dry, even though we upped his water by 200 cc's! I think he is still too ketotic. I'm just praying we don't have to re-admit him to fix this problem!
I'm trying to decide if I want to go strictly to facebook. Blog traffic has been really low, so I wonder if its worth being in two places at once!
I'm not sure if I can do that though. So many people have emailed me, finding Jax blog through googling PICU, or other key words. I hate to take this resource away! We'll do some heavy duty thinking about it this week!
I'm always checking on you guys and praying for you all via the blog! I hope you keep it- but if you choose not to, I hope you'll open up your facebook to all of us that have been readers for so long!
ReplyDeletei read your blog every time you blog. hope you continue blogging cuz i would miss reading about jaxson
ReplyDeleteNever have I written but I love ur blog I check it daily so i hope u keep it up! I hope I can keep checking the blog and don't have to switch to Facebook!
ReplyDeleteI love reading about Jax and your little princess and have been following for a long time. I'd hate to see your blog go, but I'd understand! Either way I'll be praying for your beautiful boy!
ReplyDeleteWelcome home Jax! Please keep your blog. I may not comment on every post, but I definitely read every post. You are my She-ro!
ReplyDeleteI check your blog everyday. You don't know me but your kids inspire me to do more with my life to help others. I hope you will continue to write here.
ReplyDeletePraying for Jaxon. He is a strong and handsome little man!
ReplyDeleteSo glad your home and doing okay. Love that picture. That boy is so beautiful!
ReplyDeletePlease don't stop writing. I'd miss following your journey.
ReplyDeleteI'm glad Jax is home! Praying for you guys always.
ReplyDeleteI love checking in on your blog. I'm off to search for you on Facebook in case you do stop writing here.
Amanda
I read it every time you update!! Thank you
ReplyDeleteI hope you keep the blog. I found it through someone else's blog, I don't even remember where, but I've read it regularly for many months. I love the pictures of Arina, she is so cute, and I pray for Jax and your family. It might sound wierd because I've never met or talked with any of you, but I really care about your family and enjoy reading the updates!
ReplyDeleteIrene
Please keep your blog.ou inspire me and I look forward to ready it.
ReplyDeleteA quick hello to you and family- glad to see Jax is home and will continue to pray.
ReplyDeleteBlessings,
E x
What are you under on Facebook? I'm on there all the time, but I do come check almost daily for updates on Jax and your family. For me it wouldn't matter as long as I have some way to follow. :) Not that you know me at all, but I have a special place in my heart for Jax!
ReplyDeleteLisa (from Illinois)
don't go away! i don't have Facebook and I love reading your blog.
ReplyDeleteI am another lurker that reads your blog and rarely comments. Hope you continue to post here. Glad Jaxson is doing better.
ReplyDeleteI read your blog and follow through google reader... facebook is blocked here at work, so the blog is the only way I can keep updated on your gorgeous family!
ReplyDeleteSo glad Jaxson is home! Even though I don't comment every time, I visit your blog very often and would be sad if you stopped posting, however I know that life is busy so if facebook saves you some time then I guess that's a good thing :-)
ReplyDeleteDon't leave! I am an anonymous reader who loves your blog and doesn't even know your facebook :)
ReplyDeleteI read your blog whenever you update, but hardly ever comment. You inspire me Lacey!!! Your family is precious and beautiful, and little Jax and Arina keep us all smiling :-)
ReplyDeleteSam x
I hope you will keep up the blog. I enjoy reading the posts & seeing the pictures of your family.
ReplyDeletePlease stay on blogger. :) I love reading your blog, and Jaxson is in my prayers every day, but I don't do facebook.
ReplyDeleteI also am an anonymous reader....don't have your facebook but do read your blog. I like to keep up with Jaxson & Arina. Am praying for Jax's health to be kept
ReplyDeleteon a level keel. Love to see his smile. Please keep writing for those of us who like to keep up with your blog.
Dottie from Texas
I check on Jax everyday. I love keeping up with how you are all doing. Praying for his needs and your strength. Much love from far far away!
ReplyDeleteHollie
GA
Please don't close your blog!!! I love Jaxson and check your blog daily, I pray for him and you and your sweet family.
ReplyDeletePlease dont get rid of the blog! I don't have a facebook and never plan on getting one! It's awfully frustrating when a lot of companies and sites almost FORCE you to use facebook in order to use their sites and I am just not okay with the invasion of privacy and i feel no need to have a facebook! However I I always visit your blog(and several others I found because of your blog) to see how Jax and Arina and the big boys are doing, to pray and and check in.
ReplyDeleteI don't know if I've commented but please don't take your blog away . Your whole family is an inspiration
ReplyDeleteLove how much you and your boy and your family is loved. Amazing.
ReplyDeleteKeep blogging. I think it is a healthy release. Different from FB and who cares how many read. Write for you and write for the few, on some days, that come and check in. It is enough. and, Jax and Arina's for that matter, story, is one that needs to be told and shared. FB can't accomplish that. it just can't.
Love you my friend.
I hope you keep blogging. I'm here reading, even though I've been sooooo bad at commenting lately.
ReplyDeleteI hope you get Jax's diet all worked out!
love your blog Lacey and we check in even though we see you on fb also.
ReplyDeleteJunior got way too ketotic at times. He would start to hyperventilate and sweat profusely. I started carrying juice around with me everywhere because it happened frequently. Junior's doc always told us he was the only kid he has ever dealt with who was had trouble with ketones going too high. We lowered his ratio and still had issues but it wasn't as bad. Do you do the daily urine tests? With Junior we would see the darkest color in less then 2 seconds. Good luck.