Monday, April 29, 2013

Tune up

Nathan is feeling well.  Aside from being cooped up some place he doesn't want to be, he is generally in good spirits.

I was able to escape the hospital Saturday to Sunday because Jay relieved me for the night.  I managed to do some overdue cleaning at home, I couldn't take sticking to the floors one more minute.  I also squeezed in a nice long run, and it couldn't have been any more beautiful out.  

Nathan managed to trip while goofing off, those were his words, and pull his IV out of the vein.  The meds were administering in his dermis and Nathan said it was hurting.  That makes 4 IV's in 4 days.  

Last night I had to get the tegaderm removed because he is allergic and I knew it.  He started breaking out in a rash where it covered his IV.  I'm certain his picc line will be covered by tegaderm as well but I'll have to get it replaced by a paper covering.  

He had to peak and trough blood draws last night for his tobramycin levels after 10:30 pm.  I don't remember the time of the second draw.  Poor boy looks like a pin cushion.  I am thankful he barely woke for either blood draw.  I was really annoyed it had to be the evening dose but I guess it worked out for the best because he would probably would have been upset during the day.

He has been NPO since midnight and is still awaiting his picc procedure.  I almost pulled a Terms of Endearment, that's for you Becky, because the doctor said he wouldn't be going down until later this afternoon.  Really? He has been asking me for food all day.  He wants grandpa to hurry up and bring his spongebob mac and cheese, he wants me to go get him "just one cookie", he is "really, really hungry", he told me "when people don't eat, they die".  It breaks my heart to deny the boy who rarely eats any food so I am NPO with him for solidarity.  No food for either of us, I'm cheating with spark and coffee, but I am starving.  My poor little fella.  

Friday, April 26, 2013


This is going to be somewhat brief as I'm typing on my phone while my (adorable) little booger hogs the iPad next to me.

I type this here rather than on facebook because I do have family and friends not on FB.

Where are we? At the hospital.

It went down something like this:

Sunday, Nathan wants to sleep in our bed, we allow him, just before midnight he vomits, clean up and back to sleep, few hours later I feel the heat of his body from across bed and know instantly he has a fever, I take temp - 102+ give Tylenol and back to bed.

Tylenol/Advil around the clock until midday Tuesday. Fever never returns.

Eats essentially nothing since Sunday with very limited liquid intake.

CF clinic was scheduled for Wednesday. We keep our appointment, he vomits his liquid breakfast (I'm not even sure if it was even pediasure). His weight was down 4 pounds, and from our appointment we go directly to the emergency room for IV fluids. Once rehydrated, he ate toast and butter and we went home, stopping at a park first to play.

Thursday morning, he still will not eat solid food but does drink his pediasure. Later that afternoon he dreams some Gatorade and root beer and then vomits.

I bring him back to ER for abdominal X-ray to rule out intestinal obstruction.

We are transferred up to the pediatric floor for more IV fluids.

Today, one minute I thought we'd be discharged and then the next we are being get cozy for the next two weeks.

His nasal swab shows rhinovirus, a basic cold that affects individuals with preexisting lung conditions more severely. His lungs are currently sounding ok but the pulmonologist doesn't want to ignore it and then have to treat when his lungs are crackling.

We were just transferred to another room on the other side of the building which is awesome since the last admission and the room we were just in had the same view of the parking garage. This room is bigger too, and has a princess decal on the hallway window that Teagan will love when she visits.

So he is on first IV antibiotic at the moment, he needed a new IV placed because the one from last night failed. We are up to 4 needles this week, 3 IVs and one failed attempt to start an IV.

Monday he will get his PICC line.

I'm ok. Just throwing that out there, surviving the best I can. Nathan is doing well given the circumstances. He is truly a warrior and definitely my hero. I am a little, a lot rather, pissed that this is so normal for him but it is what it is, just trying to make the best of a super crummy situation. Good night - leaving typos as is.

Thursday, April 18, 2013

This is the life

Those were here exact words...

This IS the life!

Wednesday, April 10, 2013

Sweet Boy

One day, a sweet sick boy and his sick sister went to the supermarket with their sick daddy to buy {alot of junk food for themselves} and some roses for their sick mama.

Can you guess who that sweet boy is?

He saw the flowers and asked daddy to buy them for me and when I got home from a friend's birthday party, they were waiting for me in a very special vase.

This is the vase that Jay brought me full of flowers at the hospital when Nathan was born.  Well, that is not entirely true.  That particular vase was broken by one of our cats after being discharged from the hospital and in a postpartum hormonal meltdown I made it clear that I needed a new vase.  Jay contacted the hospital gift shop, and after describing the vase they gave him the contact info for the flower shop supplier.  There was only one more vase exactly like the one in question and he would have to purchase the vase with the arrangement.

Tuesday, April 9, 2013

An afternoon at the park

These past few Spring days have been amazing, especially now that we are all beginning to feel better.   The windows have been open, the birds have been chirping, and we have been spending a lot of time outside.

Some of my favorite moments:

The breeze that blows through our curtains in the evening

Nathan calling out the window to people walking through the neighborhood "What's your name? I need to tell you something! You can be my friend, whenever you would like..."

Both kids having so much fun together (rather than constantly fighting)

Nathan making friends and playing hide and seek / catch with two older boys near grandma and grandpa's house

Playing pirates in the park

Nature hikes, treasure hunting

I caught him.

Nathan likes to play hard to get with his smiles.

This is Teagan blowing me a kiss and then giving me a hug from afar. 

She is fearless

Sunday, April 7, 2013

Back to square one

I am sure it has something to do with this cold that Teagan has been passing around our house for the past couple of weeks but Nathan is back to not eating.  His entire routine was thrown out the window.  All progress he made from that month long feeding program, gone.

We all feel like garbage, we are all sniffling, coughing, and cleaning our throats.  I know for certain that my head is pounding all day long and I am more than tired of boogers and irritable children.

What used to be somewhat easy to feed Nathan is now a fight again.  He is gagging and vomiting even the more preferred foods like, waffles.

His cough has been particularly wet and more frequent.  I called the pulmonologist on call Friday afternoon and he will begin an antibiotic as soon as the pharmacy orders it and as soon as they get the authorization, hopefully Monday.  His last culture was MRSA but he is already on prophylactic Bactrim so it looks like he will get Zyvox.

When I took Teagan to the pediatrician last Monday her lungs sounded clear and the doctor was certain it was a virus, but I may have to bring her back for another check tomorrow if she doesn't improve.

So when Nathan recovers it looks like I am going to have to start back with 4 puréed meals every day and move on from there.  It is a bit discouraging for me.