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

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

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.