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

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.

Checking In

It’s been a while since I posted, so I thought I would let you guys know what is going on with Nick.

He has had a REALLY great start to the school year.  He has been struggling with a sinus infection for a few weeks, but he is getting better.  We actually went and played tennis last night. 

He went to Chapel Hill on Wednesday – his weight and his lung function were down, but we contribute that to the sinus infection. 

He has a new special “friend.”  Her name is Ashley and she is good medicine for him. 

We are all busy with life…John is working hard, as usual.  After a long, wonderful life of service, his truck passed away and we had to purchase a new car.

Miranda just celebrated her 14th birthday.  She got an electric, acoustic Fender.  It is solid cedar and it is gorgeous!   

I started work in my new job as a 7th grade Language Arts and Social Studies teacher at  the middle school I attended.  It is so wonderful to be back where I grew up.  I am actually teaching the children of some of the people I went to school with – and that is hilarious.  You can look at some them coming down the hallway and be able to say, “Hey!  I know exactly who your mama or daddy is.”  🙂

Brian and Heather are doing well also.  Heather has a new job and is LOVING it and it is so hard to believe that Kailey will be a year old in a few days.  She is growing up SO fast.

SO…we are all doing well.  We haven’t fallen off the face of the earth.  I have just been so busy.  I’m going to try to do better.  If you have a Facebook, look me up and friend me.  You can definitely keep up that way.  We are so thankful that Nicholas is well and that everything is going along smoothly.  Thanks for checking in.

Getting Settled

Well we’ve been home for a little over a week now.  We are so loving being home.  Nicholas seems to be adjusting to being back home more smoothly than usual.  He is doing really well with keeping up with his meds, physical therapy, and other treatments.  John has taken him fishing this week while he has been on day shift.  He goes back on night shift next week so we won’t see much of him except on the weekend.  😦

I am praying that we can keep Nick active enough that he will continue to do well so he can enjoy the rest of the summer and have a good start to the school year – if we can ever get the end of this year straightened out.

We are also praying for me in respect to a job.  I never thought I would be worried about a job at the end of my education, but here we are.  Please pray for our state government.  They are working to pass a budget.  Our counties are on a hiring freeze until they can pass one.  Education is taking a beating right now.  I won’t go on about this one ’cause it will put me on my soapbox.  🙂

I just ask that you continue to pray for our family and I thank you for your prayers for us so far.  Coming home from the hospital does not mean that everything goes away like a regular illness.  There is still a lot of work and maintenance to do to keep Nicholas healthy.

Love to all…Robin

The 4th of July

Everybody always likes the 4th of July holiday.  After all, we are celebrating the Independence of our country…right? Some people have birthdays on this day so that gives them something extra special to celebrate.  By the way, happy birthday Nancy!  I love you!

The 4th of July holiday holds something different for me.  Fifteen years ago today, John and I were at Pitt Memorial Hospital with Nicholas.  We had been agonizing for months; wondering what was wrong with our precious little baby.  Due to my suspicions as a mother of what he may have, we had been through several doctors and were feeling helplessly at the end of our ropes.  We could see that Nicholas was getting worse and no one would listen to us.  We were not in a relationship with Jesus Christ at the time so we had no peace…no comfort. 

After 6 months of trying to get a doctor that would test Nicholas for cystic fibrosis (cf), Dr. Taylor came in the room at 1pm on July 4th, 1994 and told us what I knew all along.  Nicholas had cystic fibrosis.  See what I didn’t realize was that even though we were not acknowledging that God was in our lives, He was there all along.  He had been with me my whole life preparing me for what we were about to go through as a family. 

Most of you know that my mama and daddy had been foster parents while I was growing up and we had Amie with us for a while.  She had cf and we learned all about the disease, medications, and physical therapy with her.  You can read more here (You should start at the bottom and work your way up.  Later, as an adult, one of my first jobs was with the Cystic Fibrosis Foundation.  God had been preparing me for this day.  He had been with me through all of it and He is still with me today. 

As I look back and see the steps along the roads of my life so far, I feel blessed to be able to see the proof of what my mama and my grandmother had always told me – “everything happens for a reason.”  For whatever reason, God has chosen me and my family to fulfill a task for him.  We may never know what it is.  We may never know who it is for.  We may be doing it now.  It may take years, months, a day, an hour, a moment…All I know is that where ever we go He is with us.  Whatever we go through, He is carrying us.  Whatever is in store for us tomorrow, He has it under control.

As you celebrate this 4th of July, be thankful that we have an independent country.  Pray that our country can stay this way and recover from its burdens.  Be thankful for your family.  Be thankful for your health.  Celebrate your life.  I thank God for the many blessings He has bestowed upon our family.  Things could always be worse than what it is.  We are thankful for the time we have been given.  Tell your family you love them today.  Reach out to the ones you don’t see everyday and tell them you love them too.  Celebrate every moment.

Happy 4th of July everybody.  Thanks for checking in today.

Love in Christ…Robin

Home At Last!

Believe it or not, we finally left Chapel Hill around 5:00. I know…long, unimportant story. We stopped in Wilson to pick up a few things and then went home and unpacked the car. I mean…literally, we threw everything in my room, used the bathroom, and then got right back into the car to go get my baby (Oscar). Oscar is our miniature Dachshund and I missed him SO much. My daddy was not too happy to give him up I think. My mama is in Florida so it was just daddy and Oscar hanging out. I think he’s going to be kinda lonely until mama gets back.

Then we stopped at Brian and Heather’s house to see them and Kailey. Gosh she is growing up so fast. We finally got back home around 9:30.

I have almost completely unpacked everything and I am waiting for John to get home. He doesn’t get home from work until 1:20ish – AM.

Thank you all so much for your prayers for Nicholas over the past three weeks, but especially over the past couple of days. It has been kind of rough and we couldn’t have made it through without your prayers and God’s gift of grace.

We are now praying that Nicholas will continue to strengthen now that he is home. He has got to work on building his strength and stamina back up. He is really looking forward to the holiday so he can get some swimming in at his Aunt Kim’s house before the fireworks and homemade icecream. He has talked of nothing much else today.

He is not scheduled to go back until August 5th, but I will keep in touch through the blog so you guys will know “What’s Up With Nick.”

Love to you all,
Robin

OK…Final Word…

We are going home!!! See ya when we get into Edgecombe County!!! THANK YOU GOD!!! We thank you for your grace and blessings upon our family. It is going to be wonderful to have everyone in the same house again. Love you FB people!

Lung Function Results

Nicholas’ lung function is at 57%.  This is three points up from last week.  So now we have to wait to see what the doctors say.  I feel like they are going to send him home.  I feel like they are going to say that this is as good as he is going to get.  I don’t think I am ready to accept that.

I’ll post again when then they give us their decision.

OK…

OK…Gary just came to get him for his lung function test!!!! Keep your fingers crossed and PRAY HARD!!

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

Quick Update

I want to say thank you to all my praying friends.  Nicholas woke up from his nap feeling much better.  He ate a really good amount of food for supper and is back to talking to his friends on the computer.

NO ONE can tell me that prayer does not work.  I love you guys!  I praise and thank God that he is the all-healing physician.  Now we are praying for his lung function test tomorrow.  If his numbers are high enough and the doctors think that he feels well enough, we may be able to go home tomorrow.  We will have to wait and see what God has in store for us.

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

Visitor #2

Today we had a visit from an old friend.  Clara comes to visit the kids at UNC Hospital about once a month.  She got to spend time with Nicholas when we were here in April as well.  She is a Burmese Mountain Dog and she is as sweet as she can be.  She LOVES to get on the bed and hang out with Nicholas.  She doesn’t do that very much.  They had to tell Clara it was time to go because she was SO comfortable that she was beginning to dose off.  We love it when she visits and so do all the little kids.  Here are some pictures…

We wonder Who’s Next?????

Our Visitor

We are SO EXCITED!!! We had a visitor at the hospital today.  Jason Michael Carroll came by to visit.  It was awesome.  He has been here since 11 am visiting the kids.  What a wonderful talented guy.  His wife took a picture, printed it out, and Jason signed it for him. Here is the picture I took.

He came to visit Nicholas last year during the North Carolina Children’s Promise Radiothon and we got to see him perform.    He has always been great to the kids here and we are thankful to know him.nicholas and Jason Michael Carroll

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 🙂