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

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

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!

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.

Sunday, November 1st

First of all happy birthday to my sister-in-law, Stephanie!  Hope you have a great day.  We love you.

Nicholas had a pretty good night.  His blood sugar was 68 this morning when they checked it, so they went ahead with the tests.  THANK GOD!!!  Now we are waiting to get a urine sample…

We are beginning to notice that his cough is getting a lot wetter.  It sounds bad, but it is really a good thing.  It means that the junk in his lungs is already starting to break up and move.  The doctors are please with that news.

John has gone to hunt down his birthday present…this is the second year he will have been in the hospital on his birthday.  He wants a PSP with the Grand Turismo bundle.  He went to Walmart – they were sold out.  The specialty shop in the mall near here has it, but it doesn’t open until 1pm.  So now he is back in Durham looking at Target.  I guess it’s better than sitting here in the hospital all day.

So that’s what’s going on so far today.  Ashley is on the way up here to visit today, so that has made him feel better already.  If anything else happens, I’ll post it…

Update

Ok…so they found the orders – the interns had them, but they assumed that the target level was 50.  That’s why they didn’t want to do the labs at 62.  I quickly informed the doctors that when the level fell under 65, the tests were to be done.  So now that I told them what they are supposed to be doing, 🙂 they are still pricking, but are now shopping for a level below 65.  Yeah, I know.

At least we got it straight…

Happy Halloween

Good morning everybody.  Been up since about 8:30.  John came in about 1:30 this morning.

So…they have been pricking his finger every four hours.  They need for Nicholas to fall into a low blood sugar so they can do tests they can only do while he’s in a low blood sugar.  Well, this morning, they checked it and it was 62.  That was almost an hour ago.  Nobody knows what they are supposed to be doing.  I don’t understand how you can order to have his finger pricked every 4 hours – around the clock – to look for low blood sugar and not have orders in place for what to do when it happens.  God bless America.  Now the doctor on call is trying to sort everything out and she tells us that the level is not that much below 65 and they want to keep checking the levels every 4 hours.  I may have to put my mama hat on not be nice.  UGH!!!

I just hope this is not a preview for what it to come for the day…  On a better note, Nicholas had a pretty good night.  We are still getting the kinks out of his schedule and trying to get everything in place for the next three weeks.

Don’t forget to turn your clocks back before you go to bed tonight.  At least that is one good thing to look forward to – an extra hour of sleep!!

I hope everyone has a great day.  When and if things happen, I’ll post it.  🙂

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

Still Waiting…

We are showered and packed and ready to go.  All the paperwork is ready, but no lung function test yet.  He said he would be here around 11 am but, alas, nobody…

God bless America!!!  They just came in and said that he is going to try to squeeze us in between 1:30 and 2:00.  UGH!!!  Patience is not a virtue of mine – can you tell?  Please pray that our anxiousness will be calmed and that they will hurry and come get him for the test so we can go home!

I will let you know anything new as soon as we can.  🙂

We did have some good news on top of all this…Nicholas’ weight is up to 116.9 pounds!!!!!!  Almost back to his all-time high!  I had to leave on a good note.

Robin

Going Home…Unless Something Happens…Which I’m Sure It Won’t

OK…so the doctors came in this morning and said that because this is the end of three weeks of antibiotics, as longs as his lung function is up, we should go home today.  Let’s put it this way, they are already working on his paperwork.

Words cannot express how happy we are at the prospects of going home.  This go around seems much longer than the normal three weeks and we are SO ready to be home with the whole family under one roof.

When we get his test results and the final word, I will post again.

Robin

Prayer Request

I know you guys are already praying for Nicholas, but I have something specific to request.  Nicholas is not feeling well today.  He has no energy and his appetite is almost completely gone.  Please pray that he will feel better and that he will feel like eating something.

He is supposed to go down tomorrow for a lung function test.  The results of the test and how the doctors think he is doing over all will determine when we go home.  I want to go home, but I want Nicholas to be better – even if that means we are here a while longer.

Thank you all for your continued prayers and support.  Help pray us through the rest of this day and tomorrow.

Thanks for checking in.

Robin

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.

CT Scan Results

The doctors came in today and told us that Nicholas’ CT scan showed lots of disease in his nasal cavities.  Yeah I know that kind of freaked me out too when I heard it.  Dr. Dellan must have seen my face so she went quickly into explaining that this was typical for a person with cystic fibrosis.  The only thing is that there is so much, that they think this is what is causing his headaches.

He had some nasal polyps removed several years ago, but they can come back.  So they are going to contact the ENT Team (Ear, Nose, and Throat) to get them to review the scan so they can decide if they need to see him now or if they want to wait until Nicholas comes back for his follow up visit.  My hope is that they will choose to go ahead and see him now – that way if he needs to have nasal surgery, he can go ahead and have it done now instead of having to go home and come back.  I would love for him to be able to go home and enjoy the rest of his summer.

Everything else seems to be going well.  He felt a little sick to his stomach last night so they stopped his feeds for about an hour.  He started feeling better so he was able to get back on the feed pump.  His weight is up to 114 pounds now.  They have changed his weight check to once a week so we don’t get any reports except on Mondays.

So that’s what’s going on up here on the Hill.  I’ll will post more when we here more.  Thanks for all your prayers and thanks for checking in.

Robin

Monday, June 22nd

Everything had been pretty much status quo up here.  The only thing that has given us concern is the headaches that Nicholas has been having.  He has them at home too but for some reason they have worsened since being here.  Plus, he is not allowed to take ibuprofen with one of the IV meds he is on so he is restricted to Tylenol.  Tylenol is not very effective on his headaches.  We have ruled out any of the medication that he has been taking, so the docs believe it may be his sinuses.  He has had nasal polyps removed in the past.

So now we are waiting for someone to come get him for a CT scan.  They are going to scan his sinuses to see if they can tell if anything is going on up there.  I know… I resisted the jokes about what they might see up there. 🙂

ANYWHO, when the results come in, I will post again to let you guys know what they found.

Thanks for checking in.

Robin