Jax had a little better day today. Didn't wake up screaming last night. I had to make a few trips for beeping monitors, but thats nothing new. He still needed pain meds pretty regularly today. I had to change his dressing twice. Tonight when I changed it you can clearly see were the skin is breaking down around the hole. Also, half of its covered by a dressing I can't remove. I hate to see the breakdown under there, he's going to get an infection just from that. We are going back to the ped tomorrow and the surgeon on Thursday. He may take the whole dressing off, heck, he may even say to just go ahead and put the button in. Hopefully that will help. If the button is going to leak like this I don't want it. Its not like a leaky g-tube, this is stool that leaks out. (Sorry for the grossness. Don't look at this next pic if your grossed out.)
Tonight Lily and her mom brought us dinner. She was very nervous at first around all of Jax tubes. She didn't want to get to close. But after a few minutes she warmed right up. She even posed for a couple of pics for me. She insisted on taking a pic of us. Sorry Lily, I'm not posting it, I look way to fat.
Thank's so much for dinner, its a huge burden off me right now. (Maybe now I can clean my house a little)
Lacey I am glad to hear that today was a little better and how nice to have someone bring in dinner.
ReplyDeleteWe will pray that things get better and better.
Big hugs
I am glad to hear today was a tad better. Poor Jaxson's 'hole'. That looks like it hurts! Poor baby! Praying things get better for you soon!
ReplyDeleteHolding Jaxson was the best. I could hold him for hours. Thank you for letting us barge in today. Lily told her dad all about it, no mention of how nervous she was at first ;-)
ReplyDeleteOh it's such good news to hear that his day was a little better. What a cutie! Tausha and I were talking today and we are going to bring you a meal or at least a visit as soon as it works for you. Hang in there. Hope to meet you two soon!
ReplyDeleteBetter days for Jax makes this momma feel much better herself.Glad you are seeing the surgeon soon.He will certainly make some decisions before infection can get an upper hand.How great was that that Lily and her mom came by?The sweetest thing and that Lily ... she is darling.Love you Lacey.I am here.Wish you guys were too so I could help out.Maybe soon.
ReplyDeleteSo happy to hear things went better last night! Always thinking of you and sweet Jax! Hang in there! God bless, megan and Keaton
ReplyDeleteI'm glad you all had a better day and night. I'm praying that he feels better soon and that the paed has some answers for you.
ReplyDeleteYay for a better day, even if it was only a little better. Better is better right? ;) love you guys!
ReplyDeleteJAX...ouch:( WOW, what a great surprise!!!
ReplyDeletePraying for you sweetheart!
Poor little man!!! I'm sure that breakdown would be painful, like a bad diaper rash! I hope that they have a good plan for fixing that soon!
ReplyDeleteI'm glad to hear that he had a better day and night! I'll be praying for an even better one for you guys today!
LOVE, HUGS and PRAYERS!!!
Lacey, you are definitely in my thoughts and prayers. You are an inspiration to me because you continue to roll with the punches no matter what comes your way. I am glad to hear that Jax is feeling a little better and I pray that you don't get any more bad news when you go to the pediatrician. Hugs!
ReplyDeleteCute pictures of Lily and Jaxson. I am so glad today was a little better day. His hole looks really sore - hopefully they can fix it before it gets really bad. Good luck at the pediatrician today!!
ReplyDeleteSo glad he slept better! Hopefully it's better days ahead. Although that site looks horrible, it looks like it hurts! Glad dinner came again too! Please keep me posted (email) on your needs and I will make sure I do whatever I can to help! :)
ReplyDeleteI'm glad today was a better day. Yea our daughter is up at Primaries in the NICU, fighting like a champ.
ReplyDeleteI'm happy that Jaxson is feeling better despite his hole :0(
ReplyDeleteI nominated you for yet another award!!! :0) Come see :0)
So glad their was a little sunshine in your day. How nice of Lily and her mom to stop by with dinner and a visit. Praying for better days ahead!
ReplyDeleteAt least he isn't screaming 24/7!
ReplyDeleteI am so jealous that Lily's mom got to come by and hold Jax!!! I'm glad they came and y'all had dinner
Lacey, I am sorry that you are feeling so overwhelmed right now. It would have been nice for them to tell you that the hole could leak so you could have been prepared. It seems like such an infection risk to have stool on broken skin.
ReplyDeletePoor poppet. I pray that he is in less pain soon!
Hey Jaxson, How cool that you got to meet Lily. You are looking better to today little man. I keep hugging my bear and saying prayers for you.
ReplyDeleteHappy to hear things are going a bit easier for you and precious lil Jaxson. We are new to the blog world so please feel free to stop by and say hello :)
ReplyDeleteHave a very blessed day!
cchmc is cchmc.org
ReplyDeleteThe Cinci Children's Hospital.
I'm sooo glad to hear our guy had a much better day!