Mother's Day {in photos}

I don't have anything nice to say, except I thoroughly enjoyed my Mother's Day with my family.  I shouldn't say I don't have anything nice to say, because I am sure I do, I just don't want to say what I really want to say until I can fully process myself.  Confused? I am.

It was a very normal day but special in it's own way.

top:: naked booty juicing, juice {spinach, kale, cucumber, beet, carrot, celery, apple, lemon, ginger}, running
middle :: daddy's red fish necklace, park, oreo stacking competition {they both won!}
bottom :: father in law's vegetable garden {protected from the cold spring temperatures}, lunch {salmon, tomato salsa, roasted asparagus, cauliflower rice}, Willy Wonka naptime with Teagan.

It's been a really difficult couple of days emotionally.  Specifically having our family split in several different locations.  I'm not going to get into the nitty gritty, because in the long run it will all be insignificant crap that only mattered at the moment because of the compounding stress.

What currently matters is that I am at the hospital with Nathan where my heart wants to be.  Meanwhile my heart also aches to be home with Jay and Teagan.  Soon, we will all be together again.  Really soon actually.  This entire hospital admission came to be like it typically does for Nathan, not for pulmonary exacerbation per se, but more so because of the complications that arise from typical illness/viruses made worse by Cystic Fibrosis.  The vomiting/dehydration was due to salt depletion.  While rehydrating and monitoring Nathan's dietary/fluid intake, the admission turned into a tune up, iv antibiotic clean out.

The tune ups typically last 2 weeks but since this admission was not called for pulmonary issues the pulmonologist didn't see 2 weeks as a requirement.  When we spoke this morning and I was told discharge by Thursday the latest, I thought to myself "the latest? I wonder what the soonest could be?".  I came back and asked to be discharged as soon as possible but not sooner than recommended.  I don't want to be bringing Nathan home for my personal convenience but I do want to bring him home.  So, it's looking like if all goes well, Tuesday will be discharge day.  That will be 10 days of iv antibiotic, which is good because knock on wood, no c. diff yet (the reason he was discharged early in September).

Soon, so very soon, all four of us back under one roof, to sleep in our own beds, to get back to stupid twice daily breathing treatments instead of 4, medications, cleaning.  I can't wait!

*****His rash is almost entirely better, the visible portion at least.  Hopefully his skin isn't blistered and raw when they finally remove the dressing and picc line.  He was on prednisone the past weekend and this evening was his last dose.  I am thrilled that he will be done with the oral steroid because he has been acting very unlike himself the last few days.

*****I also find it interesting that he has passed up his vest the entire admission in favor of manual clapping.  He was given the option to use the vest two of the four daily breathing treatments and he has yet to choose the vest.  The nebulized medications are alternating between xopenex/hypertonic saline 7% and albuterol/mucomyst/cromolyn, twice a day of each.

Allergic reactions and admission update

Nathan is feeling well, smiling as always. We are both a little stir crazy, I'm sure he is more bored than I am since I do escape for a bit when my dad or father in law visit.

The only thing bothering him is the rash from the tegaderm and cloroprep.

This photo shows four days of the rash progression. Left to right, top to bottom.

The visible portion is almost healed but the cloroprep that was applied near the picc line incision under the cotton dressing is nowhere near better.

He was pulling at the bandage and trying to scratch it up so I requested the nurse change the dressing before he exposed his picc line.

The bandage was discolored (yellowish) and the adhesive was still stuck to his skin, and his skin looked like it was blistering.

We have to keep an eye on this because it is very close to the picc line.

I'm home today and tomorrow morning. I'm irritable and not feeling much like socializing or acting like everything is honky dory. I'm also not going to complain because it could be worse, I could be the little happy boy admitted two doors down in the hospital who waves at me from inside his "jailed" crib saying hi with a smile as he sits in his room alone, with the tv on. Or the baby who cries the majority of the day/night. I'm just not going to complain.

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.  

Admitted

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.