5 Days

Only 5 more days....

Today has been hard. Not because anything happened so much as that everything is really starting to get to me. I haven't had proper sleep in ages, Ashley and Harrison have colds and have been in the valley since last Thursday night and I haven't left this little room (other than to accompany Ben for tests) in over a week. Needless to say the mommy is going 'round the hat rack!

The residents started early, it wasn't even 7:30am when they arrived. The ones from ENT that is. I am not really sure why but they were questioning when Ben was having his bronchoscopy and honestly they knew about as much as I did.

Some of the residents and nursing students haven nasty colds so I have been making everyone put on a mask before going near Ben.

When the resident team came in I pointed out that the rash on Ben's face hadn't improved and that I am sure it is from the linens here, since he didn't have the rash at home. A hydrocortisone cream has been ordered although to this point I have yet to see it.

The main resident, Marlin, said that Ben's surgery "should" happen Monday. This makes me wonder if there isn't some internal force at work that may delay us farther in this journey.

Dr. Suzedec was in as well and is very pleased with how little Ben is growing. She agrees that it looks like his little jaw is growing on it's own. This is a very promising sign that surgery will indeed be able to fix Ben's airway.

Ben's weight is up again today. He gained another 50g since yesterday. That puts his weight at 4240g (4.240Kg). At least we are getting somewhere on that front.

The call bell system went down shortly after lunch and I was told to "Yell REALLY loud" if there was an emergency. Not very reassuring but luckily not something I had to test.

I have also asked that a note be placed on Ben's file in regard to his NG tube. The last time the tube was pulled out the ENT people put the tube back down the same nostril. I have asked the sides be alternated (like they are supposed to be!!) the next time he needs to have it changed or it becomes dislodged. Hopefully this will help, since his cheek looks pretty red and I want it delt with before it gets sore.

Messages have been left for our main ENT doctor (Dr. Hong) and our plastic surgeon (Dr. Belowzy). We should hopefully know tomorrow when our big presurgery meeting with them is. We also should know where the vanishing letter from Dr. Hong has gone and where and when the bronchoscopy is going to be exactly.

Ben loves his ladies on the unit, and the nurses all love him. Every one of them wanted to look after him and I basically got kicked off the unit! I broke down and did as they asked and took some time to leave the unit for a few minutes. Perhaps being cooped up in this room for so long is making me a bit loopy!! I walked over to the women's site via the link building and went to the Ronald MacDonald family room and used the phone there to call Ashley. I also had a fresh cheese tea biscuit, right out of the oven. It was so good and the closest thing to real food I have seen in a while.

It may have only been 30 minutes but I needed it. Hopefully once Ashley and Harry are feeling a bit better we can all go out somewhere for an hour or two and just clear our heads.

We are getting there slowly....

T-5 days....