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.

Friday, November 20th

Nick has not had a good night. Yesterday was SO awesome! he was on the radio for the NC Children’s Promise. He met so many people and he has been promised concert tickets and an autographed Marty Fish tennis racket.

He texted me at 1:30 this morning to tell me that he was carrying a low grade temperature. This morning he told me he was short of breath and he was coughing more and coughing up junk.

The doctors are running a bunch of tests. They are testing for flu, H1N1, and they are going to check just to make sure he doesn’t have an infection in his port a catheter. They are pretty sure he doesn’t.

I just talked to the doc. The nurse didn’t tell her that Nick was short of breath. He is on precautions now because of the fever. All visitors have to wear a gown, gloves, and a mask. He can’t leave the room until he is off precautions or until he is discharged until he has been without treat temp for 24 hrs. The doc also said that if his lung function was below 50, he probably would not go home. Needless to say he is not happy. They are so busy here so he still has not had the test yet. Praying for good results!

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