Clean Out #3

Doernbecher Childrens Hospital

Room 40 /9 North

I wanted to bring you behind the doors of a CF patient in Isolation,(a 4 year old patient).All CF patients are in isolation to keep them from giving others the bacteria that they grow & vise versa. Isolation means that she can not go to the "communtity areas", like the play room. And she cant walk the halls of the floor, but we can leave the room if she wears a mask & go out to the mail hall & cafateria & out door playground (on ground level) & to the courtyard on the 9th floor. Even when we did go to the cafateria or the main hall I had her keep her mask on just cause hospital s are filed w/ germs, everywhere. She pushes elevator buttons w/ her elbows!Also all "workers" that come into the room have to wear gowns and gloves top prevent cross contamination.The sign on the top left was made by a teenage CF patient for her. The letters pop of the paper. (Thank you Amanda!)

So this is what her picc line looks like.The circle is where the line is inserted in her arm & the blue oval shape is a snap system that is snaped around the tube &stuck to her skin. Then there's strips & big sheets of tape over that.It's very secure. The part hanging down is where we attach the IV line when it's time for antibiotics & lipids.They can also do blood draw fron there.On top of all this she waers a stretchy tube to keep it covered,(we call it a sock).As you can imagine the worst part of all this is getting the dressing changed. They use some detach stuff that disolves the stickyness but her arms are covered in peach fuzz.

So she was admitted on Friday the 20th. We've never been there on a weekend b4 & it turned out great. Shane took Fri. & Sat. off work & came up w/ the kids. They got a motel for the weekend & came to visit Hayla every day. That was a great treat.This is Talon & Hayla.

Partners in crime..Aden & Hayla.

What'a up w/ the tough-guy lips?

She was doing the pulp fiction dance...no they've never seen that movie!

This is me, Mom, from Aden's point of view. I n the back ground is TYalon on the bed & Shane in that chair that makes into a bed. Every time you sit in it, the seat slides out from under you a little bit!

Shane & the kids left for home Sunday. So we had to entertain ourselfs the rest of the week. This is whear I slept & our awsome veiw. The hospital is built in the hills above portland, so the views are all great. From the main hall thier are windows the length of the hall that over look the hillside , the river w/ all the differant bridge, the "east side"of Portland, and above all that in the distance is Mt. Hood,(with the sun rising the thr right of it). Thats the Doernbecher section & it's attached to OHSU.

Her antibiotic schedual is 6am/2pm/9pm(for a differant one)/10pm

She was on the 9pm dose, just goofing around.She wouldnt spot "skating" on the pole.

We spemt a whole week just hanging out in between treatments. Besides IV's she also is doing respitory treatments 4 times a day. Because she was in isolation they brought in activities for us to do. You can see the play dough behind her.

The bag hanging on the IV pole is the lipid drip I mentioned in the other post.

This is called "pep", its basically exercise for your lungs. She's suposed to blow in the mouth piece & hold the right amount of preasure to keep the ball in between the 2 lines on the part she's holding w/ her keep. Yes, feet to her are just another set of hands! Before we left Mama (Shanes mom) & Talon got her some things too keep her busy. You can see the eraseable book she was working on. Mamma also got her glow ing the dark braclets. That was the coolest. When we went to sleep she had be hang them on the IV pole & the nurses thought it was great when they would peek in to check on her.

We had only planned on being there 4 days but we ended up staying for 7. Good thing they have a family laundry roon, free too!

In case you couldn't tell in the first picture, yes those are underwear on her head! Don't worry they are clean. I had to trick her so I could get them away from her cause she wanted to wear them down to the cafateria! What a wierdo.

On Tuesday Burgerville can & had a ice cream social but cause of isolation we couldn't go. But we did get our hands on some ice cream. Also later that day they were doing jewerly making. I went down & asked if they vould bring some for her to work on.

This is my favorite activity that they do. Also my favorite picture of the trip.On Wednesday is BINGO day! Hayla's fav. activity. We had to play in the room...but just as fun. You watch from the tv (they set up a camer in the play room on the south side) & call in when you have a BINGO. Everybody's a winner at Doernbecher. Then the bring around a prize cart & she picked a toy & a stuffy. (But no touching, they have to hold things up by the door.) She picked a "barbie"doll type doll & a Pound Puppie that came w/ a DVD.

After Wednesday we were back to entertaining ourselfs. Wed. evening I finished a book I've been working on forever. (Hayla took this pict!). I called Ruth (Shanes' mom) & told her that my book had a sequil I didn't know about. She was at home w/ the kids. Since Shane had the next day off she gathered the kids & went out to the thrift stores to find my book! That was so sweet. They brought it to me the next day..they were already coming so Ruth could visit Hayla..& Shane had a door to pick up at the distributers in Portland (for his business). Anyways I really appriciated, by the time we left Fridat I had read more them 1/2 of it. (Nanny- they're about a family & thier connection to Ireland & to each other..maybe I ll send them to you)

So Thurs. & Fri. there was nothing to do but read & be board.Of course we went to the outside playground(Thur. we spent hours there, on & off), and I hauled her all over in the wagon.

Nothing to do but be goofy. Then Friday came....

....just nothing to do, but wait to be discharged. We didnt get out till 4pm. Ther was a big accident on the I5 earlier in the day so the 45 min. drive home took 2 hours. We go back up on Tues to get the picc line out (hopefully). She did a great job diring her RT. She got a lot of mucus & chunkies out of her lungs. She's also on oral antibiotics M-W-F for forever tohelp prevent her from needing a clean out every 6 months like what been hapening.

Detailed Clinic Update

So I wanted to give you more info. on how the last clinic appt. went. First it was a crazy day. We got to Portland early so we decided to park at the bottom of the Tram & ride up to the appt. instead of riding down & back up after the appt. But I parked in a timed spot & I was doubting my estimate if how much time I fed the meter for. Then in the office the kids were getting roudy cause we were all excited to go to the Zoo & see the new Dinosaure Exibit. So my mind was all worked up. Then he said he heard crackeling and everything went in slow motion. The meter didn't matter, I wasnt upset w/ the kids, it didn't even matter that I "started" & hadnt packed any supplys. All that was washed away.

Before he started "examining" her we started talking about what made me determine that there was a need for oral antibiotics,(cause I had called asking for them about 4 days b4 the appt./she was 2 day into them at the appt.). I explained how her cough sounds when it's getting worse and that even when she's not "sick" she still coughs a little. I told him that I'm becoming too used to the coughing...that its her new normal. Dr. Powers said that it shouldn't be her normal...it's not what we want. In a way I was glad too hear that because I was wondering if my expectations were too high...for there to be no cough between rounds of abtibiotics. Together we decided that when I feel she needs antibiotics that I should bring her up to be listened to. We keep regular check ups every 3 months but it makes me think that maybe she has had congestion (enough to hear crackeling) for a longer period of time cause every month she's on antibiotics (I'll post an antibiotic time line page). They do thier job, she sounds better (to me), and a few weeks later she needs more.Maybe because we are used to a little coughing, that by the time it seems bad to us, it is actually really bad & what she needs is stronger than oral antibiotics. That's just my theory..I havnt brought it up to the doc.s yet. In any case it really dosn't matter why.... Another point he brought up is that fall is coming , so getting her lungs in the best shape we can, now, is critical.

We havn't told her yet. We have a family event planned this week so we are putting off the hospital untill next week. Every one looks at me like I'm crazy when I tell them that..but the truth is CF is a progressive killer so a week isn't going to matter. Honestly it breaks my heart cause she seems fine. I wish they would just say she sounds better, so we don't need to do it. But I know that is not going to happen...and I'm thankfull that they arn't like that. They are very agressive...I am trying to be more agressive too...doing all the treatments we are suposed to be doing. 3 hospitalization in a row..every 6 months. And the look on his face...that was the worst! The doctors & Ben are wonderful & thier compassion is true....but to see it directed at our baby...she's so full of life...she's a fighter. I find comfort in knowing that we are not wasting time...we are contiously taking advantage of the oppertunitys to do things as a family.The challange is to take the oppertunity then live in the moment.

Pictures to Ponder

She was loving on the dogs today.

My little bobble head.

I think this is her favorite outfit.

At the zoo after her Clinic Appt. yesterday.
Check out the moccacins, they were Talon's.

Maning the snack table at our yard sale this past weekend.