Wednesday, May 29, 2013

It's been a while

Ever since Nathan got discharged from the hospital, life has been a little...well, we've just been living life.   I feel like our life is usually very fast paced so I am just trying to enjoy it.

To be honest, the entire hospital admission left me a bit lifeless.  I desperately needed to catch a break which definitely wasn't in the cards for me.  The week after the discharge, Nathan and Teagan caught yet another virus.  I am so sick and fed up with viruses right now especially since the kids were supposed to visit Florida with my in laws over Memorial Day and I was beginning to sweat whether or not they would be well enough to go.

We had them both in our bed for almost an entire week, taking temperatures, giving tylenol/advil around the clock and pushing fluids.  Finally, I cancelled the trip because Nathan was just so out of it, coughing excessively, and I was worried that being in the heat would only exacerbate his problems.  His biggest problem with viruses is restricting fluids and becoming dehydrated which leads to vomiting and lack of appetite, which leads to further dehydration, which eventually leads to a hospital admission.  




Another day passes, and I decide to send the kids to Florida after all.  My mother in law booked a flight rather than driving down and I knew they cared as much about his health as I do and would fly home in a heart beat if need be.

I needed a break.

They deserved a vacation.  Nathan and Teagan both deserved some fun in the Florida sun.



I didn't really sleep in at all, even without my two little alarm clocks.  But I did find time to take some baths and naps.  I was also extremely productive.  The first day I cleaned Teagan's entire bedroom.  Every drawer got emptied, sorted through, folded, organized - spotless.



I had planned the entire week, to thoroughly clean one room per day, leaving the garage and basement over the weekend with Jay.  Well, as usual, I didn't adhere to my plan but I accomplished alot regardless. 

My dad and I decided to tackle the floor in Nathan's room.  After conferring with a friend, another CF mom, it became apparent that removing the carpet  and carpet dander where Nathan sleeps could only help.  It was a perfect time to get this done.  


Nathan spilled red gatorade on his carpet right before leaving, since we were going to rip it up I decided to not bother with it.

I went to Lowe's with my dad to choose a laminate.  I am so grateful that my dad volunteered to not only help install the floor but to pay for all the materials involved in the project.  It is so frustrating to know what could improve his health and air quality yet to lack the means to take action.  

The project took a couple of days, which took some time away from my daily cleaning goals but it was worth it.







Tuesday, May 14, 2013

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.

Sunday, May 5, 2013

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.


Saturday, May 4, 2013

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.