We're home!!

We are home, yeah. Jax is doing great. I'm so mad though because the perscription for loratab they gave me is in compound form, and there are no compound pharmacies open right now. So What am I going to do for pain meds for my poor baby? Tylonel is not quite strong enough yet. I just hope it works for him. The central line they put in was in his groin. I can't fathom why you would put a line there in a diapered kid,or any kid for that manner. I told them he was an impossible poke, and I know they hear that all the time. But I found seven places were they tried to start an IV before they did the line. I just pray my poor baby was asleep before they did that, but I don't know if he was because they like to get access before they put him out.

Jax surgery battlewounds

Quick update

I just wanted to hurry and update everyone on Jax. He's doing great, I really think all the prayers help. This is the fastest he's ever recovered after surgery. I can tell his tummy is really sore. So loratab helps that. We are half way to his goal of 42 cc an hour continous. He should be up to full feeds tonight, and if he tolerates that then we are out of here tomorrow. Ok I'm going to go eat now because I'm starving. Lacey

pics of Jax

Jax when he came out of surgery.

Extubated 3 hours after surgery, yeah. I think he would still be intubated if he had his tonsils out.

Doing great

Jax is doing great. We only had one setback, that was they couldn't do his tonsils and adnoids. It makes me mad because we wanted to do the surgeries together for his sake. But his hemo doc called AFTER he went back for surgery and said that he can't be off his lovenox for the two weeks he needs to be for Tonsils. Tonsils usually are at the highest risk of bleeding 7-10 days after surgery. So we will be coming back in 4 to 6 months for that. They checked his hearing and put tubes in his ears. his hearing is not normal so they recomend hearing aids. The fixed his nissen, and put a central line in. He went to PICU still intubated about 11:00. They just extubated him at 2:30! I think his shortest intubation ever. He sounds really junky so hopefully he stays stable. He will probably stay in PICU overnight. The floor is more busy than PICU so their not in a hurry to push us out. I will post pics when I am home and can download them. I just wanted to let everyone know he is doing great.
Thanks for your prayers, Lacey

Surgery times tommorow

Surgery is bright and early tommorow. I have to be there at 6:45, surgery at 8:15. Anyone who wants to come up can. It will be about 3 hours, then he will go to PICU. I will update as soon as I can when he comes out. Please pray that everything goes smooth, and he doesn't throw us any curveballs.

Presents on the perfect day!

Last night we had a great time at our superbowl party. Although they were all Cardinal fans because they lived in Arizona, yes my hubby was very upset. But Tanner, my autistic 7 year old was having major asthma issues. The air quality here is pretty bad right now, but he was barely making it 2 hours between treatments. I Really didn't want to take him in, I'm still trying to get ready for Jax surgery on Wednsday. So I just got up last night every couple of hours to give him treatments. But I did take him in to my pediatrician today. She gave him 3 nebs and he still wasn't moving much air. She told me I should probably take him up to the hospital. ARE YOU KIDDING ME.

I took him up but once I got there i just kept thinking. I can do this at home. I have a sat monitor, I even have oxygen if he needs it. So I talked them in to letting us come home. It will be another long night though. So I got home exhausted tonight, and thinking that now I only have tommorow to get everything ready for Wednsday. There was a package on my table. It was from Gavins mom Alicia. It was a cute blankie for Jax, a sooo cute stuffed giraffe, and a great book called Give Us This Day. I was so excited. What a way to brighten my day. Thank you so much Alicia.
Jax and his new stuffed giraffe.






I recieved a couple of blog awards today. Thank you so much, and I just wanted to let you know,those who gave them to me, that I will pass them along and post them, but it will probably be after Jax surgery, I need to have time to pick blogs and get r done. Thanks again to my friends.

Superbowl Sunday

My hubby is having a superbowl party today. He's making his homemade chili. (yummy). I don't really care about the superbowl, but any excuse to have a party.

I finally finished my binder for Jax. I wanted it done before he had surgery on Wednsday. Now that its done I think it will be very handy. If you have a child who is in the hospital a lot and has a huge medical history, this is wonderful. Now when they ask me for his meds I can just hand it to them and let them copy it. Another great thing is, I'm constantly asked in the hospital if he has a DNR order, how do I decide that? So the first page inside says: Lifesaving measures, FULL CODE in red letters so they know. It also says that decisions may change based on individual circumstances. That is great to have written down in scary times. Heres what his folder looks like.

The cover has a pic of him and his birthday, and diagnoses

Inside are history, meds, surgeries and hospitalizations. It even says what comforts him.

In the next couple of days I will post a pic of our first blankie. I don't want to post it until she recieves it, but I'm very excited. And more are being sent out in the next couple of days, so if your waiting for one. It should be coming soon. If you haven't already, email me your address so I know where to send them.