Logan update PICC

This has been my home away from home lately. Thankfully it's only 5 minutes from my real home.

Yesterday was supposed to be PICC day. It didn't happen. I can't say I was surprised. You learn quickly that things always change and the hospital seems to run on it's own special time table.

They reschedualed for today at 10:00am. I tried to get home last night and did for a while. When I called to tell Logan goodnight he let me know they were going to have to draw blood twice in the middle of the night. He tried to act like it was no big deal but when I asked if he wanted me to come the tears came and so I left.

The first draw was at 2 am and went well. It was quick and he basically slept through it. The 4 am draw was much worse. We've basically blown all his good veins to draw from. We were up until 5. I had to wake back up at 5:30 to drive home so Dustin could go to PT.

I got a couple hours sleep and was back to the hospital about 9am. He was NPO (no food or drink) all morning. At 10am we headed down to IR (interventional radiology) to get his PICC. They weren't ready. It was reschedualed for noon.

Come 12pm we were back at IR waiting for the doctors to assemble. I guess it's a good thing I love all the medical shows and stuff otherwise this room could be very scary. This was the first time an anesthesiologist would be in charge of his sedation. They brought in more high tech equiptment. Slowly more and more people gathered to watch. All asking if I minded them observing wich I thought was nice.

I helped get leads placed and masks on and equiptment placed... I love when they let me get involved. When it was almost "go" time I asked where I could find a lead gown. The Radiologist in charge told me it'd be best if I left cause I might pass out. I kinda laughed and said I'd be fine. "I know how to mind my manners and stay out of your way." I said. I think it's importnant for me to be there. I haven't missed a single one.

Logan's IV was very sore and temermental. They started to push his meds and had to stop. It was causing him lots of pain. You could see the red travel up his vein from the meds through his skin. They switched to general anesthesia and masked and cleared an airway. I thought for sure they'd ask me to leave at this point but they didn't. Infact they kept me more involved. Even one of the very young student Dr's stood at my side and asked ME the questions. I loved it.

It took over an hour to place the line. His poor veins don't like to be invaded and spasm everytime they try to advance the guide wires. Oh... just incase some of you don't know, a PICC looks like an IV but is a central line with the catheter running up his arm and into his heart.



Since general anesthesia was used he had to recover in the PACU before he could go back to his room. Once we got back up to his room it was almost 3pm. Logan started to complain about a bad headache. As the minutes passed he was in more and more pain. These are tears of bravery while he waited for pain meds to come.... for over an hour.



Here are a few more pictures I took today. It amazes me how quickly his room turns into a maze of wires and equiptment.

hospital update

We arrived to the pediatric unit at about 6:00pm last night. The floor layout reminds me of UCSF, which I like. It could use some updating as it doesn't quite feel like a pediatric unit. Logan's room is big. The curtain rails on the top give away that it once was a double room.

The nurses were nice but not quite as CF educated as I'm used too. I feel fortunate I know as much about the disease as I do. His first nurses got him all checked in and settled, but his night nurse started his IV. That's always the worst part for Logan.

I came prepaired with my own emla cream to numb his hands for the IV. The intern was impressed. The nurse came and got us, took us into the proceedure room, and got right to work. She slipped the IV right in, first try, with not one single tear from Lo. Awesome!

Later that night she got his med's going, and I ran home to gather a few more things.
When I got back the front doors to the hospital were locked and I had to drive all the way arround to the ER and wind my way back through the hospital... not fun!

We settled down and got right to sleep. At 2:00am the nurse came in to draw blood to check his TOBI levels. This one wasn't as easy as the IV and took a couple tries. She did get it though and after she left we drifted back off to sleep.

Now 4:00 am and time for one more blood draw. This one was easy, and Logan was barely awake for it. Again at 6:00am she came in to start more IV meds. He's not on fluids so at least we didn't have a million trips to the bathroom!

At 7:00 am started the parade of interns, residents, student nurses, nurses, respiratory therapists, and so on. I headed home at 10:00 to get Gavin and Jacey dressed and give Dustin a break.

His PICC was supposed to be today, but there wasn't any room on the schedual for him, so they say tomorrow. I'm not holding my breath though.

It's nice nice know that this won't be a marathon of a stay. In a few days he'll be home with us.

Too Hot....

It's too hot for anything today! Way too hot. It's already 93 degrees outside and has reached 86 in the house. It's not so much the temp, but the humidity is high today making things all the worse. Everyone is grouchy, understandably. The A/C unit comes tomorrow.

I'm suddenly very thankfull to be heading to the hospital tonight with Logan. At least it's airconditioned. I need to go out and grill some chicken for tonights pasta salad so it has enough time to get super cold in the fridge.

We got our delivery of the rest of our household goods today. I felt bad for the movers in this heat, but then the smell they left lingering in my house was enough to get over the guilt. I now have a lovely pile of boxes and totes sitting in my living room, still waiting to be unpacked.

I tried to work on Jace's room, but we kept arguing. Yes, I was arguing with my 3 year old. Apparantly she didn't agree with the placement of things. I was trying to get her things nice and wiped down since they were filthy from storage. She in the meantime was pulling everything I'd just organized and put away back out of her closet. I yelled (remember the heat) and she yelled back.

"Mom, it's not right! You can't put this here, it GOES HERE!" and she dropped a pile of toys square in the middle of the floor I was trying to clear. I wasn't very nice back.

"I am the MOTHER you are MY child. YOU do NOT tell ME what to do!!!"

An argument followed regarding wich direction I was to place her sheets on her bed and I lost it. I yelled at her to get out, to stay away from me until she was done feeling bossy.

Dustin returned only moments later holding a teary eyed Jace. He looked at me amused. I wasn't slightly amused by the situation. "She's gotten out of controll," I shouted... "ever since you got HOME!"

Ah.... pass the blame.... it usually makes me feel better, at least a little but so not helping at this moment. He left for work. I continued only for a few moments and had to leave the sweltering little pink room. I was too mad to concentrate, or too hot.

Searching for a peacefull moment I sent Jace and Gavin to the bath tub, thinking that some cool water to splash in might help settle them too, and ease thier bickering. Also knowing that with me gone with Logan, Dad would be the one in charge of baths and I doubted he'd remember to wash Jacey's hair.

I was WRONG. Gavin in all his.... Gavin-ness... made the bath water super hot. I'd told Jacey I needed to wash her hair before she got out. Sitting only feet away from the open door to their bathroom I heard wet feet on the floor. UGH! I went in and noticed the filthy state the bathroom was in, and discovered the hot tub.

I now sit trying hard to contain myself. To prevent the overly tired, overly stressed, overly busy, and overly hot emotional break down, that is inevitable, from coming. As I sit I'm loathing the sheer size and layout of this house that yesterday I loved. Honestly, there is probably more linoleum in this house than any other.... ever! My nice floor mop that was perfect for my hard wood floors was no match for linoleum, since it couldn't get into the cracks and cranny's of it.

UGHH!!!! I'm trying to breathe and calm down but it's too hot. I sent a text to Dustin that simpy reads:

I am having a serious meltdown.

No response. Maybe I need a cold shower?

Logan update #.... I've lost track!

I'm in love! L-O-V-E LOVE! With our new pulmonologist. He is awesome and thourough, kind and polite, but still speaks to Logan at an age appropriet level. Most of all I love that I'm right and someone acknowledges my concerns.

I'm jumping the gun here, let me back up a bit. ENT pre op went great. Pre-op and anesthesia went faster than expected. We made it to our 10am CF appointment with enough time for me go potty. We never waited longer than 5 minutes to see anybody today. (amazing I know!) We still have to go to CT tonight for his sinus CT and they're tacking on a chest CT as well.

This may get a bit technical sounding but really it's not to hard to understand- just keep reading you'll get it!

Logan's weight was good, height not so good. His lung function (FEV1) was at 77% today. That is down from his last PFT's in December where he was at 100%. It's a considerable decrease, but not enough to warrant a quick admit.

That said, it is not desirable that Logan go into surgery with compromised lung function. The surgery will put added stress on his lungs and only make things worse.

The soultion is Logan be admitted tomorrow evening to start IV antibiotics. Wednesday morning he'll get his PICC placed and possibly have a bronchoscopy (would be his first ever) while sedated. He'd spend a few days in the hospital with his surgery on friday. He'll most likely be discharged on Saturday with his PICC in place and receive his clean out at home with the help of a home care nurse.

So.... that's the plan thus far. I'll keep ya in the know as things develop.

A Busy Day

Today is a day full of doctors appointments for Logan. Most of them are pretty standard pre operative appointments but this is also the first time he will meet with the CF team here.

It's always interesting to see how diferent places do things. I know they aren't always the same but we are coming from a nazi Dr who was more obsessed with her clinic #'s than how happy her kids were. I think anything will be a welcome change! The only thing I'm wondering is have some of her standards worn off on me? I won't accept anything other than healthy from Logan. "Good enough" is not acceptable to me.

We had a doctor ask Logan why he was wearing a mask in the hospital... DUH! I think there is a difference between styles of care for sure. We tend to be more laid back with his care, in the belief that he should experience as close to normal childhood as possible. If he's healthy enough to thrive on only one-two breathing treatments a day then why push for more? Don't get me wrong, the first sign of illness is taken way serious, and treated approprietly. I feel he'll have enough time as an adult to worry about his health and while there is something to be said for starting a rigid routine as a child I think he'll lose more than he'll gain.

I'm excited and hopefull to see what his new doctor will have to offer. I LOVE that he got his CF training at UCSF, where we absolutely loved all the doctors. I hope he took some of the same practices away with him! I can remember many tearfilled nights at primary wishing he had those doctors to care for him.

I'll post again and give you my first impressions. Just remember I'm going into this with a very positive outlook and high hopes. Please pray for Logan and his upcoming surgery! I hope he is brave today for his "pokes". Yes, he's 11 but the name has stuck ;)