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.
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.
