Wishing things were going better right now...but the storms keep rolling in around here. ALOT has happened since I last updated a couple weeks ago. Let me get Ashlee's status out of the way a minute...she's my healthy little bugger.
She did culture a new bacteria on her culture from beginning of July, Achromobachter. It's not something they are too concerned about. She had started on Bactrim before we found that out for a possible bladder infection. Urine sample came back neg, so we were supposed to stop the abx a few days in...then I got the call about the new bacteria in her lungs. They were not going to treat it at that point. She had been having a tab bit of a cough and still the urine issue...and I had read that most were treating the bacteria with Bactrim...so I figured in her best interest we were going to finish the 10 day course. She still has somewhat of an occasional cough...but I am monitoring that...otherwise seems to be doing well :o) She has had some respect issues due to all this crazy screwed up hospital life splitting us up all the time. But it's understandable. Need to get her back in control though! She can get on my last nerve easily as I have few left to play with! haha
So we went to Jordin's GI appt on the 15th. She was still having bad diarrhea, she had 5 watery ones in the docs office in a two hour time frame! They were sure she had C-Diff and wanted to address the vomiting issues we've been having. Asked me if it would ruin our life if they admitted us for a DAY or TWO. I agreed and said we could deal with a day or two. Mind you I had been trying to talk to someone over the phone all week about getting her in to do this right away to save a trip...we could have come prepared...but they refused to work with me over the phone! So I was pissed.
After they forgot about us and left us in the docs room for total of 3 hours...I popped out to see what the heck and she couldn't believe we were still in there! Thanks. Anyways from there we went to the car and back to the gift shop as I needed a phone charger, but they were sold out of course. So we just went to admission and got admitted.
JUST after getting up there, they are talking IV abx, PICC line, the whole works! OMG! I was furious! I KNEW that meant longer than 2 days! Pulmonary had taken over from the start and decided she had failed to get rid of her sinus infection with orals and needed to get a hang of the diarrhea, so they needed to switch to IVs again :o( So here we sat, with NOTHING...finally got a phone charger from security...my phone was dead...no way of communication. No money, $12 and Dewayne's credit card! lol I later ended up having Dewayne ship us a package with the main necessities as we ended up there a whole week.
Jordin had an Upper GI done to check the status of her Nissen...looked good and in tact :o) They are still stunned that she can puke so much with the Nissen done so well still! She ended up getting a port in her upper right chest...it will be permanent for her IV meds rather than getting numerous IVs and PICC lines every time we have to go in.
She was poked 12 times in the first 2 days there and she is now terrified of everyone :o( Makes me sad...she wasn't like that. I put a stop to it at that point...was not allowing anymore pokes for the time being. That was more than enough. She also at the same time got her g-tube replaced with a GJ tube. It has a J port on it that her feeding will go in...it is dirctly into her intestine so she can not puke up her feeding out of her tummy. This has been wonderful so far! She has not puked up any feeding! She has puked up her meds a few times though, and is still gaggy even with her empty tummy :o( Not sure why her body just want to throw up all the time? Not fun for her at all.
Only issue with the new tube is that it is a smaller size (not by look, it is like 4 times bigger than her old button...but the hole inside is smaller!) and the g-tube curves off the side causing for her enzymes to get clogged every time we do them...4 times a day! It is getting old quick...but I got a handle on it...just nervous about leaving Grandma with a clogging tube! She will eventually get the hang of unclogging it as well...it will just take time.
So, while she had those 2 operations, she also underwent a bronchoscopy to look at her lungs and airways and get samples of everything down there. (oh, I forgot to mention on BIG thing here...second day in...during rounds, I found out that she had cultured MRSA on her last culture at beginning of July and THAT is why we were in isolation (got out own room!!!! yay! I thought is was cuz of possible c-diff though...turns out it was the MRSA the whole time! Nice to know!)! MRSA is a very resistant bacteria, resistant to MANY antibiotics. Anyways, the bronch showed TONS of thick yellow mucous in her lungs and airways...and some super sensitive walls causing bleeding in her lungs :o( After the procedure she was coughing up blood when I cam to see her :O( She needed oxygen for a while after that, but soon was good on room air...better than the whole time since we had gotten there! Oh she had also been desatting a few times a night (oxygen dropping), but always popped right back up. They are assuming that will get better as she gets better. After a good nights rest, she was back up and feeling better the next day.
So, we're on 3 weeks of IVs again...this time 3 different ones, Tobramycin, Vancomycin, and Ceftazidime (was Cefapime in the hospital). She is also on Flagyl despite all her neg cultures for C-diff, something is def up so they are treating it. Before leaving the hospital I found out that her bronch culture was growing Aspergillus mold...they had to do another blood test to make sure that she was not having any allergic reactions to that or that it is not in her blood. I have not heard back on that yet...assuming it is okay. Got a call the other day from pulmo...checking on how she was doing cuz her culture has grown yet another bacteria! This one is Stenotrophomonas(steno for short). It is also very resistant to most abx. Actually hers is only sensitive to 1 antibiotic! So now what?! They are debating treating this newest one...depending on her improvement by Monday. If not much improvement she will add oral Bactrim to her list and will then be on 3 IV abx and 2 oral abx! Poor kid. NOT going to help with the stool issues at all!
How many bacteria can her little sick lungs handle? I am so scared for her right now. When is something going to give for her? I wish it would all just go away. I don't know what to expect at this point. I will be asking our doc at our next visit what all this means and what I should expect for Jordin's health. It def scares me to death.
(that is her hugging her cute doggy zooble she got for her blood draw out of her port! lol)
We have just finished up her second week of abx at home, 1 more week to go. She has another needle change on her port on Tuesday, first one was traumatic :o( I am hoping to learn to flush the port monthly myself...if I can get up the balls to stick a needle in her myself! I am def scared! lol I think once I do it once, it will be no problem after that, and considering it is still sore from placement makes me more scared to mess with it! I will be deaccessing it for them this next week...not sure if I will do the access or not yet! Prob should while the hole is marked for me so I get a feel for it before I gotta guess where to stick it at! Wish me luck!
And our Great Strides walk for CF is this weekend finally. I am so tired and worn down from IVs and meds that I am not sure I want to go. I really want to, but might be in all our best interest if we don't. IDK I have til tonight to figure out if we are going or not! I have only a couple people that would be walking with us...
Hopefully I have included ALL of the news brewing here...if I have left anything out, feel free to ask questions or I will include anything else i think of in a new blog when I get a chance! Please pray for my little baby girl <3