Pictures from NC Children’s Promise

Nick with Jake Owen

Jake Owen visits with Nick

Nick on 96 Rock with Blade

The Latest…

OK…because Nicholas has a fever, he is on droplet and contact precautions.  This means of course that you have to wear a gown and gloves and a mask when you come to visit.  Well, because of that, he cannot do the lung function test.  If there is ANY chance that he has the flu or any other bacterial infection, he could blow the germs into the machine and the technician can’t clean every surface of it.  So we can’t do the test…so he can’t go home.  Not to mention that the doctor is not comfortable with his being out of breath.

If Nicholas were to get the flu, it could be very bad for him…She says she feels much more comfortable having him here so they can watch him.

SO…he will be here at least until Monday.  I guess we will do it all over again on Monday.  If he is off droplet precautions, he can do the lung function test.  It will ultimately determine when nick can go home.

Update – Tuesday, November 17th

OK…so the doctor on service at Chapel Hill called me.  Well, she had Nick call me.  She wanted Nick to go down for another lung function test today.  His lung function was back down to 50 and she is not happy with that – neither are we.  They are going to add a 5th antibiotic (yeah, I know) and start him on prednisone.  Now I don’t know if he will be able to come home on Friday… 😦

I’m sure we probably won’t really know anything until Thursday or Friday, but I’ll keep you posted.  Praying for a miracle people, because I need that boy to get better so he and John can come home.  This has been the hardest time in the world for all of us.

AND, Monica is not doing the best in the world either – they may re-admit her.  She will find out tomorrow.

Sunday, November 15th

Yesterday was a great day here on the Hill.  We watched the Dookies lose to Georgia Tech and then we watched and heard the Tarheels in an awesome game against Miami.  It was the best game ever!  Nicholas needed a pick-me-up because he wasn’t feeling the best in the world yesterday morning.

Other than bood sugar issues, he’s had a pretty good weekend.  They have added another antibiotic.  This one is inhaled through a breathing treatment.  He hasn’t been able to tolerate it in the past because he has floppy airways called bronchialmalaysia.  With his airways already being this way, breathing the drug would make his airways collapse and he would cough more.  They wanted to give it another try because it would put an antibiotic directly in the lungs.  Tobramycin is a popular drug and he has taken it through his IV, so we know he is not having a reaction to the drug itself.  He seems to be tolerating it pretty well so far.  He is doing his regular breathing treatments to open up the airways, then the therapist comes in for his chest pt, and after all of that, he gets the inhaled TOBI.

The doctors are hoping this will help to get his lung function back up at least into the 60’s.  Nobody likes the fact that they have been remaining down in the 50’s for a while.

So today, I am praying for continued weight gain, that the inhaled drug will help to open his airways more, that his lung function will climb higher than the 50’s, and that he can come home on Friday as planned.  Thank you all so much for your prayers and support.  It means a lot.

Robin

They Came Baaaack!!!

The football players were making their rounds today before the game tomorrow!!  It was SO cool!  Go Heels!!

UNC Football Teammates

Tuesday, November 10th

Sorry I haven’t posted lately…busy, busy, busy.  🙂  Hospitalizations are a process for Nicholas.  They place him on high dose antibiotics, a fierce regimine of physical therapy and excercise, and they monitor his weight.  Unfortuantely, that makes it difficult for all of us because we just simply have to wait to see how he progresses.

The doctors are concerned because he is not gaining weight.  We weighed right at 112 pounds when he went in and he dropped to 111.  He has been at 111 pounds for over a week now.

He also continues to have blood sugar issues.  They are doing a glucose tolerance test today, so it will be interesting to see what the results are from that test.

The doctors say that he will probably be there for the full three weeks.  Tomorrow is Veteran’s Day so there is no school.  I will probably be going up for the day, and then I will be back on Friday.

That’s all I have for now.  If anything changes, I will let you know.

Robin

We Had Some Awesome Visitors Today!!!

Some members of the UNC Tarheel football team stopped by to say “Hello” and “Happy Birthday!”  It was awesome!!!

UNC Football Teammates

Birthday Pictures

Wanted to share some pictures from yesterday.  Thanks for all the cards everyone!

Updates

Ok…so Nicholas went down this afternoon for his lung function test.  It was up to 54% from 37% a week ago.  I am so relieved that he is getting better.  We are so thankful…that thirty-seven percent scared me a little. 

He’s had a great birthday considering he is in the hospital.  The nurses decorated his door with a sign and balloons.  He got a BUNCH of cards and he has just had a great day.  The cafeteria staff gave him a birthday cake.  My mama went up to visit with my niece and nephew and I think he really enjoyed that.  She took him stuff to eat too.

And I am happy to report that Monica went home today.  We also have another praise…our preacher’s wife, Rosa, had surgery to remove a tumor from her brain today at Duke.  She came through the surgery just great, the doctors got all of the tumor out, and they say that it wasn’t cancerous.  Isn’t God just a wonderful God?  We have had some much good news today. 

I have taken the day off tomorrow so I can go up to the hospital for the weekend.  Can’t wait to see my boys.  Thanks for checking in, for the prayers, and for the cards that Nicholas has recieved.  He told me that he has gotten 37 as of this afternoon.  That is just awesome!  🙂  You guys are the best!

Thursday, November 5th

Today is Nicholas’ 17th birthday.  It is amazing how fast the years have flown by.  It seems only yesterday we were pulling him around in a wagon for entertianment…now he’s driving us around.  When I really sit down and think about it, I feel like I have missed his growing up.  We have all been so busy with school, work, and trying to get through day by day with his illness, that the years are gone and we can’t get them back.

This realization just makes me want to cherish each moment even more.  He is growing up, he needs us less, and that will not change.  It will only get worse for John and I as parents.  While we realize he is growing up and he is becoming more independent, we still know that he is our son and we want to do everything we can for him.  I guess that is the case with all parents.  I don’t even want to think about the fact that my baby girl is 14 and a freshman in high school.  Then that makes me realize that OMG Nicholas is going to be graduating from high school next year!!!  Wow…

So the word from the Hill is that everything is progressing along.  Nicholas is going to be doing a lung function test today so we are praying that his numbers are WAY up from the 37 % he went in with.  Sorry I haven’t posted in a couple of days.  It is hard to post sometimes when I’m not there and I have limited conversations…  🙂  Anyway, as soon as I hear the results of the lung function test, I will post again.

Happy Birthday Nicholas!!  We love you!

Tuesday, November 3rd

Talking to Nicholas and John yesterday and last night, things went well yesterday.   Nicholas went to the playroom yesterday when John left for work so he has been occupied with the playroom and his birthday present.  As far as I can tell, things are progressing as they should.  He is getting two IV antibiotics and physical therapy four times a day.  While I was on the phone with him last night, he had gotten a bunch of mail delivered to him and he was reading through it.  I really appreicate that and so does he.  He LOVES to get mail so thank you all for doing that.

Hopefully, today, he will try to start of some of his school work.  It’s kindof hard to concentrate on stuff like that when you are feeling so well.  So today I am praying for continued progress in his lung function and lung capacity, weight gain, and that he feels better so he can work on school assignments.  I also pray for continued strength as I am separated from him, for John in his traveling back and forth to Kenly to work, and that this will all be over quickly so we can all be back under one roof.  I pray for Miranda too eventhough she is happy to be in her own house and in her own bed.  She is usually living with my mama or John’s mama or someone else while Nicholas is in the hospital so that is a praise for her.  🙂

Thanks for checking in today.  I’ll post when I know more.

Pick me Up

Nicholas has a little pick me up… 🙂

Sunday, November 1st

First of all happy birthday to my sister-in-law, Stephanie!  Hope you have a great day.  We love you.

Nicholas had a pretty good night.  His blood sugar was 68 this morning when they checked it, so they went ahead with the tests.  THANK GOD!!!  Now we are waiting to get a urine sample…

We are beginning to notice that his cough is getting a lot wetter.  It sounds bad, but it is really a good thing.  It means that the junk in his lungs is already starting to break up and move.  The doctors are please with that news.

John has gone to hunt down his birthday present…this is the second year he will have been in the hospital on his birthday.  He wants a PSP with the Grand Turismo bundle.  He went to Walmart – they were sold out.  The specialty shop in the mall near here has it, but it doesn’t open until 1pm.  So now he is back in Durham looking at Target.  I guess it’s better than sitting here in the hospital all day.

So that’s what’s going on so far today.  Ashley is on the way up here to visit today, so that has made him feel better already.  If anything else happens, I’ll post it…

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.  🙂

Friday 10/30/09

Good morning from Chapel Hill, NC!  It’s a yucky, cloudy day outside.  We’ve been up for a couple of hours now…seeing doctors, respiratory therapists, physical therapists, nurses, nurses assistants…the normal group.  🙂  We had a pretty good night.  I died around 11:30 last night so I don’t remember much except for hearing Nick’s pump beeping a couple of times.  He did ok…’round the clock finger pricks overy 4 hours with no complaints.

We are really just getting into the routine of things so nothing much to report yet.  Just wanted to check in.

On another note, the doctors wanted me to tell everyone that while we LOVE visitors, but due to the flu and H1N1 epidemic, children under the age of 12 are not allowed to visit up on the floor.

Hope everyone has a great day.  I’ll post more if things change.

P.S.  Nick’s friend Monica is hospitalized too so if you could add an extra prayer for her, we would all appreciate it.  🙂

Admission

Nicholas was admitted to UNC Hospitals today.  He has not been feeling the best in the world for a few days now and he was beginning to get short of breath.  He was supposed to come up for a clinic visit on the 25th of November but he didn’t think he could wait that long.  His wonderful doctor told us that he could see him at 3:00 today.  So, John picked him up from school and they hopped in the car and came on up.

His lung function was 37%.  Monday when we came up, the scales said he had lost 7 pounds.  The scales he weighed on today, said that he weight 112 which is 3 more pounds than Monday.  So I asked for a re-weigh to verify.  He actually weighs 114 pounds so we already have a praise!

They have started him on hi IV antibiotics, and they are getting his physical therapy scheduled, so we are on track – I hope – to better days.

In response to all of his blood sugar issues, they are checking his levels every four hours – around the clock.  So maybe we will have some answers soon about the whole blood sugar thing.  I will be asking questions about all the bloodwork they did earlier in the week.

So that’s about it for now.  Please pray for our family.  This is new territory for us because I will not be able to stay here with Nick for the full stay now that I am teaching.  John will have to stay and travel back and forth to work from here at the hospital.  Miranda and I will be at home this time….  I’m really trying not to think about it.

I’ll try to post everyday.  Thanks for checking in.

Robin

Home At Last!

Believe it or not, we finally left Chapel Hill around 5:00. I know…long, unimportant story. We stopped in Wilson to pick up a few things and then went home and unpacked the car. I mean…literally, we threw everything in my room, used the bathroom, and then got right back into the car to go get my baby (Oscar). Oscar is our miniature Dachshund and I missed him SO much. My daddy was not too happy to give him up I think. My mama is in Florida so it was just daddy and Oscar hanging out. I think he’s going to be kinda lonely until mama gets back.

Then we stopped at Brian and Heather’s house to see them and Kailey. Gosh she is growing up so fast. We finally got back home around 9:30.

I have almost completely unpacked everything and I am waiting for John to get home. He doesn’t get home from work until 1:20ish – AM.

Thank you all so much for your prayers for Nicholas over the past three weeks, but especially over the past couple of days. It has been kind of rough and we couldn’t have made it through without your prayers and God’s gift of grace.

We are now praying that Nicholas will continue to strengthen now that he is home. He has got to work on building his strength and stamina back up. He is really looking forward to the holiday so he can get some swimming in at his Aunt Kim’s house before the fireworks and homemade icecream. He has talked of nothing much else today.

He is not scheduled to go back until August 5th, but I will keep in touch through the blog so you guys will know “What’s Up With Nick.”

Love to you all,
Robin

Still Waiting…

We are showered and packed and ready to go.  All the paperwork is ready, but no lung function test yet.  He said he would be here around 11 am but, alas, nobody…

God bless America!!!  They just came in and said that he is going to try to squeeze us in between 1:30 and 2:00.  UGH!!!  Patience is not a virtue of mine – can you tell?  Please pray that our anxiousness will be calmed and that they will hurry and come get him for the test so we can go home!

I will let you know anything new as soon as we can.  🙂

We did have some good news on top of all this…Nicholas’ weight is up to 116.9 pounds!!!!!!  Almost back to his all-time high!  I had to leave on a good note.

Robin

Going Home…Unless Something Happens…Which I’m Sure It Won’t

OK…so the doctors came in this morning and said that because this is the end of three weeks of antibiotics, as longs as his lung function is up, we should go home today.  Let’s put it this way, they are already working on his paperwork.

Words cannot express how happy we are at the prospects of going home.  This go around seems much longer than the normal three weeks and we are SO ready to be home with the whole family under one roof.

When we get his test results and the final word, I will post again.

Robin

Quick Update

I want to say thank you to all my praying friends.  Nicholas woke up from his nap feeling much better.  He ate a really good amount of food for supper and is back to talking to his friends on the computer.

NO ONE can tell me that prayer does not work.  I love you guys!  I praise and thank God that he is the all-healing physician.  Now we are praying for his lung function test tomorrow.  If his numbers are high enough and the doctors think that he feels well enough, we may be able to go home tomorrow.  We will have to wait and see what God has in store for us.