prayer

Another pain free day today!!  He's still not wanting to get out of bed, doesn't want to talk to anyone and would prefer sleeping the day away :-(  We are not going to get concerned right now because he has every right to feel miserable.  The CT is still showing some pretty yucky sinuses!  So early in the morning he will be sedated and they will drain all that yucky stuff.  Everything is done by endoscope but I've heard it's not a very comfortable procedure and to expect him to be sore for a little while :-(

Please pray that everything will go smoothly and this will give Nolan the boost he needs to feel better!

I'm ready to see my smiling Nolan again :-)

Brittany

much better day

Today was much better! Thank goodness!

The good news is this is the first day in a really long time that Nolan didn't need any pain medication, but coming off the narcotics was not fun either.  Nolan has not wanted to talk, smile or do anything except stare at the ceiling.  The physical therapist came in this morning to work with him which was no easy task because of Nolan's grumpiness and the fact that he hasn't walked in days.  She was cracking jokes and trying to do everything she could but Nolan would not smile or talk to her :-(  I was so relieved he felt better but so sad to see Nolan not himself.  Thankfully by the end of the day I was able to get him to watch a little spongebob and I heard a small familiar giggle.  That just made my day!

For the bad and complicated news...

Nolan has repsonded really well to the antibiotics, His face looks so much better, his pain is gone but the ENT came in today to explain what the complication is.  Basically if it was just his regular sinuses affected it wouldn't be a big deal but it's his sphenoid sinuses and it's completely full!  This makes treatment so much harder! Most of the time it always comes back after finishing antibiotics and we would be right back in the same situation.  This type of infection is known for it's incredibly bad headaches and all the symptoms Nolan has been having.  So this is the plan...

Nolan will have a sinus series CT scan in the morning.  The ENT will make sure everyone is in agreement with him and Thursday they will sedate Nolan and drain the sinus.  Hopefully with this procedure and 14 more days of antibiotics Nolan will feel so much better.  The only other thing that would be holding Nolan back from coming home is that he is not eating or drinking and he is vomiting his feeds.  We think his stomach is pretty tore up from all antibiotics.  So please be in prayer that Nolan will start tolerating things in his stomach again and that we can get Nolan's sinuses cleared without any problems.

Thank you all for your continued love, prayers and support!

Brittany

slightly better day

All though today was not as productive, it was better. Nolan had absolutely no pain all morning!! Woohoo! Then we decided to take him off the pain pump and he started having pain again :-(
The good thing is he's not on a continuous drip of narcotics with lots of boluses anymore, he only gets a dose when he feels pain :-)

He had a head CT early this morning and everything appeared stable and I'm not getting a clear answer on this but no change in the sinus area. I guess I'm going to have to convince oncology to get an ENT involved. This has to clear up!

Nolan made several attempts to get up but every time he did the pain came back. I see that he "wants" to but he can't. It's all so frustrating! For a little while Nolan will look good and feel good then he goes right back to looking bad and feeling bad :-(

Please pray we will continue to see progress and be able to come up with a good plan for tomorrow!

Brittany

a visit with family

My Mom brought the kids up to see Nolan today
but he didn't do much visiting :-(
He still feels absolutely miserable. In the picture his face is all swollen but we think this is due to IV fluids and staying face down in the pillow too long. The actual swelling in his eye looks slightly better...
They added another IV antibiotic in today to really get a hold of this "infection"
If things don't look better tomorrow we will talk about doing some more imaging to see how things are looking in his sinuses. I've heard one person say orbital cellulitis and sinusitis and another doctor say, Sinusitis that is triggering migraines. All I know is I haven't ever seen Nolan look so sick :-( It just breaks my heart...

Please, please continue to pray for Nolan's pain relief and to figure out what's going on.

Thank you to all who have sent me e-mail's and messages with advice and encouragement!
Brittany

pray4nolan

It's been a pretty easy day but no changes. Nolan sleeps all the time and still has episodes of pain. His favorite thing has become hot packs and his GT pillow he keeps his head buried in. He was started on IV antibiotics this afternoon and hopefully we will notice a change soon. If he doesn't improve we will talk about Nolan getting a CT scan or moving his MRI up early next week. None of that is set in stone, just stuff we briefly discussed.

Thank you for continuing to pray for him!

Brittany

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8

back in the hospital

Sorry for not updating sooner...
Nolan's pain got really severe Wednesday night and Thursday we tried to control it but he was going through lortab like it was water. Nothing was helping at all. I took him into the ER at Scottish Rite Thursday afternoon and by that time his right eye was really swollen and had a constant stream of tears coming down. They did a CT scan, blood work and admitted him for pain control. Morphine didn't help much so they put him on a pain pump which seemed to bring the pain down from a 10 to a 5. It's been crazy today! He's been seen by oncology, neurology, the pain team and a ophthalmologist. We still don't know exactly what is going on but we are thinking cluster headaches (which are more severe than migraines and harder to treat), a really bad sinus infection or both. I really couldn't imagine a sinus infection being this bad unless it's not your average sinus infection. The CT scan was stable but his sinuses are packed all around the right eye and his right eye is swollen so it's sounding like this could be it. They started him on oral omnicef, which I'm a little upset about because with a sinus infection this severe I'm thinking bring out the IV antibiotics and lets kick this stuff! Oh well, that will be discussed tomorrow. In the meantime Nolan is miserable even with the pain meds. His pain increased a lot this afternoon but come to find out his port needle came out and he wasn't getting the pain meds :-( Now his chest is swollen and sore...

Please continue to pray! I feel like we are headed in the right direction but Nolan really needs some relief!!

Brittany

#pray4nolan

This feels never ending...

Nolan is on several different pain medicines but is still dealing with horrible head pain :-(
It is so heartbreaking to watch him in so much pain and feel I can't help him in anyway. I have no idea what to do and the doctors don't know what to do. As a mom you put band aids on boo boo's or take your child to the doctor when they are sick but you don't expect this....

We were in Atlanta most of the day discussing meds and little bit of everything. We basically have been playing a guessing game and we still are. All the doctors agree that Nolan is still in some sort of medicine type crisis. We don't know whats not agreeing with what but we are going to little by little wean him off the things we don't think he needs anymore. Also the pain team recommended acupuncture so he started that today. It would be wonderful if he can get pain relief without taking another medicine that will only cause more side effects, I'm all for it!

We need lots of prayers for Nolan! Prayers for pain relief and for his upcoming MRI and spinal tap on May 17th.

Thank you so much for all the continued prayers and support!
Brittany

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34