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

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

Our New Toy

Irrigation tool

This is the tool we had to invent to get Nicholas’ new medication up into his sinuses.  The prescription says to put 100 mls of fluid into each side of his nose, but we only did 50.  They said that they didn’t even know if he could do it, but he did and it was kind of fun trying to figure out just how we were going to do it.  Now we just have to pray that the antibiotic works.

So if you ever need to irrigate your sinuses, here is the list of ingredients:

1 – 10 French Suction Catheter

1 – Drainage Hose

1 – Mucosal Atomization Device

1 – 60 cc Syringe with a blunt tip

1 pc. of Tegaderm adhesive

1 pair of scissors

Robin 🙂

Lung Function Results

Nicholas finally went down for his lung function test.  Today is a clinic day so they are REALLY busy.  His lung function was unchanged really.  His upper airways were down a percent and his lower airways were up a little.  So as we suspected, we will be here at least another week.

The hospital pharmacists are still in negotiations about how the new antibiotic they want to use for the nasal passages should be given, but we are told that it should start today.

His appetite is starting to wean off a bit, so they are going to consider increasing his periactin to 3 times a day.  We were kind of hoping that the prednisone would help increase his appetite, but is so low a dose that it may not benefit him much in that respect.

So we are still waiting to see what the culture grows from the nasal passages.  they know that it is growing some bacteria, but it hasn’t been long enough for it to completely grow out yet, and we are still waiting to get the new antibiotic for his sinuses.

Let you know more when I can.  Thanks for checking in.

Robin

Wednesday, June 24th

Yesterday, the ENT doctor came in and to our surprise, did a procedure on Nick right here in the room.  They made him snort some numbing liquid, then they put gauze soaked in more to numb is nose and his throat.  Then they took a lighted scope and went up into his sinus cavity.  Let me tell you – I saw a red light in his head up above the bridge of his nose.  It was crazy.

The CT Scan showed lots of disease, but he said that on first glance, it didn’t look as bad as he thought it would – although, he was only able to see into the very closest cavities.  They took a culture to see if he was growing any bacteria up there that they may be missing and they have started him on Prednisone (30mg) once a day.   They want to begin him on an antibiotic for the sinuses but they are in disagreement as to how that should be given.  They are trying to work out the details now.  So we have to wait and see about that one.

Nicholas is also supposed to go down at any minute for a lung function test.  We are praying for better numbers.  His cough is still very wet.  Knowing that and now the issue with the headaches and the sinuses, we will more likely be here for another week.

As soon as I know more I will let you guys know.  Thanks for checking in.

Robin

P.S.  Thank you to Brooks, Jordan, and Jameson for the visit yesterday.  it was wonderful having friends from home.

Wednesday, June 17th

Today has been pretty much the same as yesterday.  Nicholas went down at 1:30 for a lung function test.  His numbers were up – from 46% to 55% – he was pushed very hard; to the point that he was having chest pain, so the person who does the test is going to talk to the doctors to let them know how the numbers were obtained and the condition of Nicholas when they were done.

At this point, I believe that we are still going to be here, but it will be interesting to see what the docs say.  His appetite has increased dramatically.  He is eating more and more on top of his feeds at night.  He even at during his feeds last night.

That’s it for now.  I will post more as it becomes available.

Robin

Tuesday, June 16th

Sorry I didn’t post yesterday.  There really wasn’t anything different to report.

Everything seems to be going as planned.   The new medicine for Nick’s appetite seems to be working.  He is eating A LOT.  He has been able to tolerate the new vitamin they gave him, and his weight is up a bit.  They will be doing another lung function test tomorrow to see what his progress is.

John left to go to work and home yesterday and Miranda will be coming up on Thursday to stay with us for a few days.  John will be back to visit on Sunday and will take Miranda back with him.

Thanks so much for all the thoughts, calls, emails, posts to Facebook, and most of all for the prayers.  They are felt everyday.

Love to all…

Sunday Morning – June 14th

Nicholas is finally awake after 14 plus hours of sleep.  The new medication they started him on definitely has him zonked out.  I hope that the effects are beginning to wear off and he can stay among the land of the living.  🙂 He probably needed some really good sleep, so I guess it wasn’t a totally bad thing.

This morning has been pretty laid back…the normal Sunday routine.  Missed going to Sunday School and church today.  It seems as though we have been here longer than 3 days.  It’s going to be a LOOOONNNG 3 weeks. Mama is coming to visit today so maybe that will help pass the time.

Thanks for checking in.

Robin

New Room Information

OK.  So…a patient moved out of a larger room on the floor and Nicholas asked if he could move into it and they said yes!  We have moved to 5C03.  This room is so much bigger it is not even funny.  It will make being here for 3 weeks much easier on all of us.

Please make note of the change to the information on the right.

Things are still going as planned.  The nutritionist came in to talk about his weight.  They are concerned about his losing weight, but more so because he hasn’t gained more.  He has really just leveled off.  So they are going to add an appetite enhancer to help with his wanting food – especially when he is sick or not feeling well.  The only thing about this drug is that it makes you sleepy when you first start taking it.  Your body has to adjust to it.  So for the first few days, he will probably be “zonked out” they say.  We are very excited about this.  His BMI is only 16.4 so we have got to try to do something to get it up.

That’s what is going on today.  If there are anymore changes I will let you guys know.  Thank you so much for your thoughts and prayers.  We feel them everyday.

Robin

Room Information

OK…Nicholas’ weight and oxygen levels were down.  His lung function was also down to 46%.  So he has been admitted.

We are in room 5C06 and the phone number is 919-966-4335.  They are going to go ahead a start him on IV antibiotics tonight,  increase his physical therapy and breathing treatments.

I have to go home and pack some things and John has to go to work.  Please pray for our family as we are all split up again.  I will be posting here most everyday to let you guys know what is going on.

Love to all,

Robin

What’s Up With Nick

I know it has been a long time since I have been on the blog. I have been trying to to get finished with school and keep our heads above water at the same time.  After 81/2 years of going to school, I finally graduated this past Sunday.  I am thanking God that it is over and that my family didn’t kill me during the process.

Nicholas has been doing about the same as usual.  He has not really been to school consistently since December.  He was home bound for a while, then he was in the hospital and now he is sporadically at home and school. 

It’s been very hard for him to go to school.  His stamina is just not where it should be.  Now that my student teaching is over, I have extended my leave of absence so that I can be home with him to help him stay on track with his meds and his treatments, and stay on track with his school work. 

I can’t promise that I will be back to blogging full-time, but I will definitely be better about it.  So you can definitely check back periodically to see What’s Up With Nick.

Robin

What the Doc Said

Well the doctor came in this afternoon and said they were very pleased with Nicholas’ lung function today.  They think he may be fine to go home in time for the weekend.  They are going to repeat his lung function on Thursday or Friday just to make sure, but hopefully things will be the same if not better and dwe can go home on Friday.

They are also pleased with the fact that Nicholas is gaining weight.  He was up to 10 and a half pounds today.  We just have to get him through the next week of food.  After a while, due to the antibiotics, he loses his appetite.  Finding things to get him to eat becomes a scavenger hunt.  🙂  So we will be focusing on that this week too.

We are all so excited!  I can’t wait to have my whole family home under the same roof and to sleep in my own bed.  Thank you for your prayers, calls, messages, and cards.  They are so appreciated.  We love you all dearly!

Robin

Lung Function Update

Nicholas went downstairs this afternoon for his repeat lung function test.  The test says that his lungs are functioning at 54%.  That’s down from 57%, but it is still pretty good.  We haven’t seen the doctors yet.  I think they are waiting for all the retests to be completed.  Regardless of what they say, we are thankful for the improvement.  God has truly blessed us.

They will probably retest nick again on Thursday, so those results will decide whether we can go home early or not.  We are praying that his numbers will continue to rise and that we can all be home together this coming weekend.  It would be a wonderful gift.

He is getting to the point where he is getting tired of the food and the antibiotics are causing him to begin to lose his appetite.  This is normal for him, but it doesn’t make anything easier.  He is hungry, but at the same time…he doesn’t want what they have up here.  It is very frustrating for him.  At least he is feeling better and he has been going to the playroom more.  He is exercising now and I hope he will go to the playroom this afternoon.  Getting out of this room is one of the best things for him.

That’s really all that’s going on.   I will post more when I know more.  🙂

Robin

Wednesday, April 8th 2009

Sorry I missed posting yesterday…  There is really nothing new to report.  Nicholas is continuing to get his physical therapy and his IV antibiotics.  We are able to see that they are beginning to work.  His cough is beginning to increase – which is a sign that the therapy and antibiotics are beginning to work.

We are also concerned that the antibiotics he received at home were not mixed correctly or something was wrong with them.  We never saw the changes that we normally see when he is on antibiotics, so we are going to be looking into that.

There are many new visitors to the blog and I am so glad that you are able to read what is going on with Nick.  Please feel free to stop by daily to check for updates.  There are also many informational links I have posted so people can learn more about what cystic fibrosis is and how it affects so many children and adults around the world.  Please read to learn more and if God puts it upon your heart to do so, please donate to the Cystic Fibrosis Foundation so we can quickly find a cure.

Monday….Monday

Things aren’t much different today than they were yesterday.  Nick is getting his chest pt as we speak.

Nick is complaining about the computer that he is being allowed to use.  He goes insane when he can’t do what he is supposed to do, so now they are in the room trying to get it to work.  I think he enjoys making people squirm.  🙂

We are keeping an eye on the weather.  There is some baaaad weather going on back where we live.  So that’s really all that is going on…other than the fact that this place is stirring with basketball madness!!!!  Go Heels!!!

Robin