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.

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

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

Thursday, June 18th

The doctors came in this morning very pleased over the progress Nicholas had in his lung function test yesterday. However, they want to make sure, as I do, that they get everything they possibly can this time. The plan is to continue on with IV antibiotics here at the hospital and recheck his lung function next week. We will go from there.

He also continues to have a great appetite. His weight is showing that. He was up to 113.8 pounds this morning! That is just awesome!

Miranda and mama are coming sometime this afternoon, so we are looking forward to that.

Pray for continued increase in weight and lung function. Also, we are having some issues with school so please be in prayer about that as well.

Thanks for checking in.
Robin

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