We have enjoyed our second day of being home from the hospital and things are going well, just very busy. I have not had much of an opportunity to get on the computer but I know that many of you are praying for us and wondering how things are going so I wanted to let you know how the last few days have been. BEWARE... it's another long post! Thanks in advance if you make it to the end! :)
I'm going to jump back to Monday. They were able to move her PICC (peripherally inserted central catheter) line procedure up to 9:30am. Ashley had a PICC line when she was about a month old so we kind of knew what to expect. They did the procedure right in her room which was nice. She was able to stay in her own bed and not be transported somewhere else in the hospital (which would help keep her away from other germs). The hospital has a special "PICC Team" which specializes in only taking care of PICC lines. They were having a hard time knowing if the IV in her hand (that she had gotten on Thurs. morning) was still good so they had to have some kind of pediatric doctor come look at it. At that point they put a mask on her to begin sedating her. Within 5 seconds she was out. We were then asked to leave the room and were told to check back in about an hour. After an hour we were very anxious to return to her room but as we got close we saw that the door was still closed and they were still working on her. We went back to the waiting room. About 20 minutes later our nurse came out and told us that they were having some problems getting her line in and that they would probably only attempt one more time. I asked, "What then?" She said that if they couldn't get it, then she would go back to her original 1:00 spot and they would have to put her under complete anesthesia and have an x-ray going while attempting to get it in. It would be a lot bigger process. Finally after 2 hours and 10 minutes the doctor came out and told us that they were successful in getting it in and that she was doing well. He said she woke up during the procedure but that she wouldn't remember any of it. He said we could go back to her room. Once we got there the two PICC team members came out in the hall to tell us more. They had to put it in her right arm and it's lower than what they had hoped for (it's in the front of her arm in front of her elbow- the part that bends). We were just so very thankful it was in and didn't care at that point! She said that her hand IV had gone bad so they had to start a new one in her foot. She also had been poked numerous times trying to get everything done, because her veins are so small. She told us how nice it was that the doctor had stayed to help and that he was the one that actually got it in- typically there is not a doctor in the room! Had he not stayed, then it probably would not have gone in! That was a HUGE blessing. He had given up over 2 hours of his day to help take care of our little girl and this situation! She then went on to tell us that Ashley had woken up and that she was chattering away and how funny they thought she was. (She is a pretty funny little girl!) She told them what she was going to be for Halloween and other things that totally made sense! The PICC team gal told us about a specific conversation they had about band aids and stickers. We were reassured again that she wouldn't remember any of it though. About 30 minutes later Ashley began to wake up. As soon as she did she told us that they had gotten the "thing" (IV) out of her hand and now she had it in her foot. She then also told us about the same conversation that the PICC team gal told us about!!! She did indeed remember some of the stuff, but didn't really seem to bothered by any of it. Since a PICC line is fed up to the vein right by your heart they have to do an x-ray to make sure it's in the proper place. So x-ray came to her room and then about an hour later the PICC team gal came back and said it was to far in by about 3 cm. So she and the nurse had to pull that much out. That was kind of a gross thing but we survived! Next came the craziness of trying to get us discharged! Talk about complicated! Thankfully the hospital has a person that takes care of all of this. Ashley had to get prescriptions from 4 different pharmacies (one that had to be over nighted from Denver- the CF pharmacy). Home Health Care (HHC) had to be lined up, we had to wait for some of her meds to arrive at the hospital, going through discharge papers, etc... it just seemed like we were never going to get out of there! Finally at 6:30pm we loaded up all of our stuff (and boy was there a lot- Ashley got so many fun things from visitors and the hospital) and headed home. Matt had to stop off at another pharmacy on the way home but Ashley and I arrived home shortly before 7:00. By 7:40 our Home Health Care Nurse had already shown up. She then began teaching us the procedure on how to do her IV meds. Ashley is on two different IV meds and it takes about an hour and a half to run them. We administer them 3 times a day, every 8 hours. She finally left around 9:45 and it was time to get Ashley to bed after this very long and draining day. Ashley then told us that she was scared to go to bed with her arm. But first thing she said when she woke up Tues. morning was that, "she could sleep with her arm like that!". I was feeling very overwhelmed Monday night with everything and trying to make sure I did all those little details (which are very important) with the IV. Everything has to be super sterile and you can't even grab the wrong end of a cap! In addition she is now on 5 different breathing treatment meds. and we were a little unsure about when to do what. She is on 14 different medications (and many of those 14 are more than once daily!!) It's a lot to keep straight! But after getting a better night sleep I felt pretty good Tuesday morning. Another HHC nurse came to the house and reviewed everything with her IV meds again and I felt confident then that I understood. I kept telling myself, we only have to do that until next Wed. night. The PICC line should come out a week from Thursday. The bummer with that too, is that the meds. take an hour and a half so last nights ran from midnight until 1:30 am. And with it being two different meds. you have to switch them in the middle and flush the IV a few times. Thankfully Matt stayed up and did it. Then I got up early and got it going this morning so we could adjust the schedule a little better and will start it tonight at 11:00pm.
How's Ashley doing, you might be wondering??? She is doing so good that if you saw her and didn't know about any of this you would not believe me if I told you that she had just spent 6 days in the hospital! She is completely back to her normal self (with the exception of still not eating as much as usual but doing very well). I had also asked our CF dr. if we were going to need to keep her home bound and away from people for awhile and she told me no (much to our surprise!). She did say, "You will be more home bound because your treatments will be consuming so much of your time but that she is free to do things when it works out". She can even play in her last soccer game on Saturday!!! Ashley was thrilled to get to go to AWANA Cubbies tonight since she had missed her first 2 weeks.
Her breathing treatments are taking a VERY long time which is hard for all of us, especially Ashley. Her morning one lasted an hour and a half and we only did part of one of the meds (it's okay- I shouldn't get in too much trouble for not finishing that one out!) :) Otherwise it probably would have been at least an hour and 45 minutes. That's a long time for anyone, let alone a 4 year old to sit on the couch with a plastic piece in her mouth breathing in and out! Not to mention she has to do this 4 times a day!!! Her noon, and late afternoon treatments only last 30-45 minutes, and then the late one before bed was over an hour long too. This is going to get old FAST!! We see her CF dr. for a follow up on Monday and we are hoping to drop a few of the breathing treatment meds. Her TOBI neb (antibiotic nebulizer med) lasts about an hour by itself and she has to do it twice a day for 28 days.
A Home Health Care Nurse will be back on Friday and will stay for several hours. She has to draw blood an hour before Ashley's IV meds and then again an hour after they are done. A HHC Nurse will come again on Monday to change the bandages, which I'm sure won't be fun for Ashley. Then they will return, for hopefully the last time, a week from this Thurs. to remove the PICC line.
Other good news... her second sputum culture came back and it's still showing "normal flora" so it doesn't appear that she ever had any CF "bug" in her lungs. She did have one more sputum culture taken at the hospital so those results should be back by Monday. We are thinking it was probably just a viral croup that turned into pneumonia.
So, did you make it all the way to the end? Now do you see why it took me a few days to sit down on blog! Stay tuned for pictures! We took a lot in the hospital. Some may make you sad (it's not fun seeing a cute 4 year old sick), some will make you smile, and some may even make you laugh!
I have always loved Halloween! As a child, I looked forward to dressing up every year and going Trick-or-Treating. So 10 years ago, before Matt and I were even married, I threw out the idea of having a Halloween Costume Party. My fun husband, was as excited about this idea as I was. So that's how our annual costume party began. It's a fun night that many of us look forward to each year!
Best Couple Costume winners were...
Best Individual Costume winner...
Scott and Heidi came as their older two children dressed for Halloween! How fun and creative!
Heidi had the coolest eye lashes- had to get a closer picture!
Due to sick kids at home, Tammy had to come solo. It was great to have Bat Girl around though!
Mike and Jana were "a pair of blue jeans"
Josh and Trisha were rockin' pretty hard in their costumes!
Darryl the Lifeguard and Staci the Ace of Hearts 
Marti and Brad said they realized on the way to our house that they were dressed like themselves 10 years ago- a nurse and a paintball player!
Daniel and Whitney made a great Superman and Lois Lane
Sarah the Sticker Girl was also solo since Alok was out of town.
Thanks for all the great laughs everyone!
We had another fun morning at the CF Great Strides Walk! On Wed. Ashley came down with croup and is coughing a lot so unfortunately she was still not feeling her normal self, which took some of the fun out of the day for her. But I think she still had a fun time and so did the rest of us! I was encouraged by how many walkers still came out despite the weather. The temperature was 47 degrees and it drizzled rain most of the walk. Team Ashley had about 65 walkers that ended up making it this morning which was also an incredible turnout! I am so humbled that we have so many wonderful friends and family that were so excited to walk with us and support our sweet Ashley and finding a cure for Cystic Fibrosis! This afternoon I said to Ashley, "there were so many people that came this morning just because of you." And she replied, "Yep, they love me, don't they?" And the answer to that is YES! Ashley is very lucky that so many people love and care about her! Thank you for being a part of our life!!! We love all of you too!
Some of Ashley's favorite friends... Kaitlyn and Emma
