Happy Halloween

Good morning everybody.  Been up since about 8:30.  John came in about 1:30 this morning.

So…they have been pricking his finger every four hours.  They need for Nicholas to fall into a low blood sugar so they can do tests they can only do while he’s in a low blood sugar.  Well, this morning, they checked it and it was 62.  That was almost an hour ago.  Nobody knows what they are supposed to be doing.  I don’t understand how you can order to have his finger pricked every 4 hours – around the clock – to look for low blood sugar and not have orders in place for what to do when it happens.  God bless America.  Now the doctor on call is trying to sort everything out and she tells us that the level is not that much below 65 and they want to keep checking the levels every 4 hours.  I may have to put my mama hat on not be nice.  UGH!!!

I just hope this is not a preview for what it to come for the day…  On a better note, Nicholas had a pretty good night.  We are still getting the kinks out of his schedule and trying to get everything in place for the next three weeks.

Don’t forget to turn your clocks back before you go to bed tonight.  At least that is one good thing to look forward to – an extra hour of sleep!!

I hope everyone has a great day.  When and if things happen, I’ll post it. 

Getting Settled

Well we’ve been home for a little over a week now.  We are so loving being home.  Nicholas seems to be adjusting to being back home more smoothly than usual.  He is doing really well with keeping up with his meds, physical therapy, and other treatments.  John has taken him fishing this week while he has been on day shift.  He goes back on night shift next week so we won’t see much of him except on the weekend. 

I am praying that we can keep Nick active enough that he will continue to do well so he can enjoy the rest of the summer and have a good start to the school year – if we can ever get the end of this year straightened out.

We are also praying for me in respect to a job.  I never thought I would be worried about a job at the end of my education, but here we are.  Please pray for our state government.  They are working to pass a budget.  Our counties are on a hiring freeze until they can pass one.  Education is taking a beating right now.  I won’t go on about this one ’cause it will put me on my soapbox. 

I just ask that you continue to pray for our family and I thank you for your prayers for us so far.  Coming home from the hospital does not mean that everything goes away like a regular illness.  There is still a lot of work and maintenance to do to keep Nicholas healthy.

Love to all…Robin

Surviving the First Night

Yesterday was such a LONG day. John and I left the hospital about 4pm to go home. I had to go home to pack the house and John had to go home so he could go to work. Once we got home I started the painstaking task of packing up everybody. I had to pack myself up, Nicholas, and Miranda. Oscar went home with mama around 9pm and I finally got Miranda’s things to her around 10:00.

I was so worried that I would hit all those storms on the way back up here, but thank God I was spared everything except for a few sprinkles here and there. I finally got here around 12:15. Nicholas and one of the nurses came down to meet me at the car. They took all out things up to the room for me so I could go park the car. It was so sweet and helpful.

So we are up early after a tiny bit of sleep…still working out the kinks of the first few days. Can’t be here without some kinks you know. We are trying to remember they are the “norm” here and we just have to be patient.

They started Nick on his IV antibiotics last night. They just started him on the normal – Timentin and Ceftazadime, they already have him on the physical therapy schedule so he started that last night instead of today so that is definitely a plus. His oxygen level was pretty good last night so he hasn’t needed any additional oxygen – that is a good thing as well.

That’s all that’s going on here so far. When things change I will post extra, but I will try to post at least once a day.  They will check his progress with lung functions once a week, so they will repeat it again next Thursday.  Thanks to all for you thoughts and prayers. It looks as though we are here for the long haul.

We also have another prayer request;  Nicholas’ friend Monica, who has CF as well, is here in the hospital too.  She was admitted on Wednesday.  I think their lung functions are about the same now.  Please pray for her.  She can’t leave her room while she’s here, so that makes for a very long stay.

Robin

Room Information

OK…Nicholas’ weight and oxygen levels were down.  His lung function was also down to 46%.  So he has been admitted.

We are in room 5C06 and the phone number is 919-966-4335.  They are going to go ahead a start him on IV antibiotics tonight,  increase his physical therapy and breathing treatments.

I have to go home and pack some things and John has to go to work.  Please pray for our family as we are all split up again.  I will be posting here most everyday to let you guys know what is going on.

Love to all,

Robin

Back in the Saddle Again

I had to take a break from blogging for a couple of days to get caught up on being home.  It’s sad when you can say you have to get used to being home again.  But it has been wonderful sleeping in my own bed.  Of course getting caught up meant doing some of my most favorite things in the world, like… unpacking, washing clothes, finding places to put everything we brought back, and getting into the normal day to day routine of Nicholas’ meds and therapy.  In that sense you get kindof of spoiled in the hospital because the nurses have to be responsible for that.  Nicholas seems to be about the same as he was when we left on Monday.  No real change.  We have to go back to Chapel Hill on Juy 3rd and then again on the 16th, so they are really keeping an eye on him. 

And poor Miranda gets around as bet she can on our little house on crutches, so now Nicholas gets to wait on her like she has waited on him for all these years.  I think she kindof likes that part.   She has to go back to the orthopaedic doctor on the 17th of July for an xray that will determine if the cast can come off or if it has to stay on longer.  That visit will determine if she can go to camp or not.   She isn’t happy talking about that.  We are just praying that she will be fine and the cast will come off and she can go.

I also have finals this weekend so I have my head in a book.  Then I have a loooong break until January.  This is my first break in 8 years of going to school.  No sure how I feel about that.

Thanks for checking in on us.  That’s pretty much all that’s going on here.  This week, I like boring…