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

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

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

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.

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

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

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…

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