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

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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

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.

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

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.

Sunday, June 28th

For the past couple of days, Nicholas has been feeling pretty yucky.  Between the periactin and the nasal washes, he has been having fun days.  Last night he had a REEALLY  bad nose bleed – so bad that they called the doctor on call. He was passing huge blood clots.  The doctor said that the nasal spray and he washes had obviously irritated an already inflamed nose so we needed to stop them for at least the morning to give his nose a chance to heal.  He also said that if it started bleeding again and/or if it was worse – such as running blood – to call him back.

About 30 minutes later, we were calling the  doctor back.  His nose started bleeding again and it was dripping/running bleeding and he was passing blood clots again.  We put ice and pressure on it and it finally clotted off and stopped.  The doctor says that it was just because of the irritation, to not blow it, and that he didn’t think it was anything to be alarmed by because it was able to clot and stop.

They stopped the nasal spray and the nasal wash and the ENT docs will be by tomorrow to look at his nose again.  I hope not with that camera thingy because that would be kind of crazy considering it would probably make his nose worse and it probably would bleed again.  The pulmonary doctors are completely holding the nasal washes and sprays and they told Nick that if he didn’t want to do them anymore he didn’t have to – so of course he is not doing them anymore.  Last night he said that it really burned him.

He had a bleed today too but it was because he forgot that he was supposed to avoid blowing his nose.  It only bled a little before it stopped.  So we are going to talk to the pulmonary and the ENT doctors tomorrow about his nose and his appetite – which is dropping off – to see where we go from here.  They are checking is blood sugars a little more closely today to see if they could be the cause of his feeling poorly.  They don’t think that is the case but they want to cover all their bases.  I am still not sure when we will come home.

John went home today and Miranda is with Shawn and Susie Webb.  Pray for my family as we are still spread to the corners of our area.  I pray that God will heal Nicholas so we can go home soon, that John will have peace at home and try to rest, and that Miranda will continue to be satisfied where ever she goes.  Thanks for the thoughts and prayers and thanks for checking in today.

Robin