Clinic Visit

Nicholas went to Chapel Hill today. I wish I could say that he got a good report. His weight was 108 (at 5′ 10 and 3/4″ that’s not too good) and his lung function has dropped to 38%. They got a sputum culture, but we’re going to have to wait until Monday to see what he’s growing.

He had a long talk with the doctor and they are going to put him on Homebound for a month. They also talked about long term homebound. Thank you all so much for the prayers you have already sent up. We seem to need them more and more these days. We will keep in touch..

eh…

This past week hasn’t been a great one for Nick. He hasn’t been feeling well and he has had a LOT of stomach issues.  He’s going to try to go back to school tomorrow.  He has to go back to Chapel Hill on Wednesday for a follow-up visit.  We have no idea what the numbers are going to show us.  I’m not sure I want to know.  John will be taking him so I can work.

Please pray for Nick as he continues to work on getting back into the swing of things – doing all of his treatments AND going to school.  One or the other is hard enough, but both of them together is a real problem for him.

Thanks for checking in…

What’s Up With Nick

Nicholas has begun his SENIOR YEAR! I know…where does the time go? He has has a rough summer and a rough go getting started with school. It is so exhausting for him, but he is determined to go and stick it out. We are having a hard time getting into the swing of things AND keeping up with his treatments.

His lung function is not the best in the world. He is hovering around the low 40’s and his weight continues to be a struggle.  We began a new inhaled antibiotic a little over a month ago.  We did see his numbers go up, but only time will tell if it was a one time thing or if it will be a welcome trend for us. We are praying for the latter.

I have been a terrible blogger.  I have to blame part of that on Facebook. So many of our friends and family are facebookers now that I have let the blog go to the wayside. Now that we are back in school, and I have a classroom website, I will make an effort to get over here and post as well.

I promise, if nothing else, to post regularly when he is in the hospital. I wish I could say we would be doing the whole hospital thing less, but I don’t feel that will be the case. Only God knows the answer to that one.  We have many more friends now that we know on a personal level that are dealing with this disease as well.  We ask that when you say a prayer for Nick and our family, that you say a little prayer for them as well.

As always, thank you for your prayers and your support! (especially those of you who check the blog everyday to see that I have not posted. 🙂 )

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

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!