Update from Today 10/27/09

I know many of you have had questions about what has been going on today.  Nicholas has been having problems with his blood sugar levels.  For those of you that don’t know, Nicholas is hypoglycemic.  This means that he has low blood sugar levels – the oposite of a diabetic.  For the past few weeks, those levels have been dropping more frequently and the numbers have been lower than normal.  He dropped to 35 last week and felt as though he would pass out.

Of course we have been very concerned, as nothing has changed in his diet or activity level, so we contacted his doctors in Chapel Hill.  In the past, the endocrine team would not see Nicholas because he is not a “diabetic.”  But we felt that this was something that needed to be looked at.  The doctors in pulmonary and endocrine agreed. 

They told us they could see him at 3pm this afternoon, so John picked Nick up from work, I left school and got on my way.  Basically all they told us was that they couldn’t tell us anything today without running several bloodtests.  They drew blood to test his insulin, and to get an average of what his levels have been over the past three months.  It is amazing that they can do that.  They are testing him for something else, but I can’t for the life of me remember what it is.

They also suggested that, while Nicholas is doing a great job with his intake on carbs, that he needs to be more conscious of the protein that he eats.  He needs to include more protein with the carbs to try to balance them out.  They also encouraged him to get back on a regular schedule with his feeds.  Nicholas eats so much during the day, he has a hard time geting hooked up to his feeds over night.  We have got to do better with them.  This is also affecting his weight.  When he was released form the hospital in July, he weighed 116 pounds.  Today, he weighed 109…

They say the only other tests they can do is while he is experiencing the low blood sugars.  If we don’t see an improvement, they may have to hospitalize him, wait for his levels to drop, and then run the tests.  We really don’t want to have to do that.

So that’s what’s been going on today.  We were back home by 8pmish.  It was a LONG day.  We are hoping that the suggestions they gave us will help.  Thank you all for the comments, prayers, and good thoughts today.

Clinic Visit Update

Nicholas had the expected appointment today. He lost 4 pounds since December 3rd and his lung function had dropped even more. It was 45% today. He has had a little nasal congestion so we are hoping that it could be the cause of some of what is going on. The doctor has put him on two oral antibiotics and one inhaled antibiotic. He has also requested that we step up his physical therapy and other breathing treatments to at least three times a day.

The youth at our church are having a lock in tonight for the new year and he REALLY wanted to go so both he and Miranda are there. I hope he will be able to enjoy himself. He has been having problems with being out of breath…he was playing basketball when we left them.

We are praying that the next three weeks will show us an improvement – they go back to school on Monday – he goes straight into exams. 😦 Thanks for your thoughts and prayers today.

What the Doc Said

Nicholas’ doctor does not want to put him on any kind of antibiotic.  They did a gag sputum for a culture so they are going to see what that grows – if anything.  He also wants Nicholas to just concentrate on doing his treatments and staying active.  There are some other issues that have to be worked out, but we were not able to resolve them today.  Unless anything changes to cause us to come back sooner, we have to come back on December 31st.

Thank you for your prayers today.

Lung Function

His numbers are down.  His lung function is at 51%.  We have talked to the doctor, now he is talking to the doctor without us.  I’ll post when I know more…

At the Clinic

We are here at the clinic, checked in and weighed.  HE HAS MAINTAINED HIS WEIGHT since his discharge!  He weighed 115.1 pounds today.  He was 116.5 when he was weighed last.  Not bad.  Not bad.  His oxygen levels were hovering between 95 and 96% – that’s “ok.”  We are waiting to see what his lung function is and waiting to see the doctor.  I’ll post when we know more.  So far so good… 🙂

What’s Up With Nick

Well there’s not really been alot going on lately.  Nicholas had a pretty good Thanksgiving holiday.  He has been having some issues of feeling poorly and some issues getting back into the swing of PE at school.  He was not able to go to school today.  He will try tomorrow.  We are going to Chapel Hill on Wednesday for a follow-up visit from being in the hospital.  It’s been 28 days already.  Time sure does fly by.

We are praying that his numbers will be about the same as they were when he was discharged.  I will post as soon as I know something Wednesday.  We have a REALLY early appointment, so it could be mid-morning when we know something.

Clinic Update

Well, things were not so good.  Nicholas’ lung function was 48%.  The doctor was very impressed with the fact that he has been able to maintain his activity level and the fact that he was able to play tennis Monday night.  They wanted to get a culture and while getting it, Nicholas coughed up some blood.  That’s not really a good thing, so Nick has to stop his breathing treatments for a couple of days – which he really needs.  If he coughs up any more blood, we have to call them immediately.  We are going to increase his physical therapy while we wait for his culture results, but it looks like they will probably be admitting him to the hospital on Monday.

I just ask that you please pray for our family.  I really do not have the time to take off work, but I do not feel comfortable leaving him here by himself.  I realize he is almost 16 years old, but nothing is ever done the way it is supposed to when he is here.  Home IV antibiotics are really not an option because he needs physical therapy 4 times a day.  We have a lot of “life” going on right now, so it’s just difficult on all of us when Nick has to go in the hospital.  The bottom line is that he comes first.  So whatever we have to do get him well and keep him healthy, we are going to have to do.

Robin