Waiting, waiting, waiting, the past four years of my life have been waiting. Well needless to say we are still waiting for Ally to have her line pulled. She was supposed to go to IR today and have it pulled and a PICC placed but we ended being bumped off the schedule. Now she is supposed to be the first case tomorrow so we will see. We are also still waiting to see if she can come home with the PICC or if she will have to wait to come home next week after she has a new central line placed.
We are also still waiting for Pulmonology to come by and see Ally. I told the transplant staff that I was fine with Ally not getting discharged until next week if they add decanulation into the plan for the next week! It never hurts to ask.
Some of Ally's liver numbers have been up so late this afternoon she had an ultrasound done of her bile ducts. We should get these results tomorrow morning. We also finally got some confirmation on Ally's latest ECHO and the cardiologist feels everything looks normal.
The girls have been having a lot of fun playing with each other and one other little girl that is a transplant patient. Today was her birthday so the girls got to go to the Birthday party tonight (which sadly enough was in a conference room down the hall). However when you have pizza, ice cream, and a Hannah Montana birthday cake who cares if you are stuck in the hospital!
P.S. if you didn't get a chance to check this out yet make sure you check the link listed on the homepage to the Heintz Elf family.
Sorry to keep you all waiting for an update. Ally is doing much better and Ashley has gotten her appetite back which should help her to get better. Ally was moved to the IICU late Saturday and yesterday I talked the doc into letting her be sent up to the transplant floor. Being up on the floor should help her to get some rest since she will have a private room.
Ally has yet another line infection. She is growing the same bacteria in her line that she was growing before when she ended up with endocarditis. Infectious disease first thought they would try to treat the line with yet another IV antibiotics plus antibiotic locks. However today was the fourth day of positive blood cultures so she will have to have her line pulled and a temporary PICC line placed. Interventional Radiology will try to get her in for Thursday and then she will probably have a new line placed next week. This line got infected just two days after it was placed and it has been nothing but infections ever since so I am all for having it removed.
While we are inpatient the docs will put in a Pulmonology consult to see about having Ally's trach removed. Getting the trach removed could ultimately help us get rid of the central line too. When the trach is in it is much more difficult for Ally to eat or drink. However if she had the trach out then we could push her to drink more and then she would not need to rely on IV fluids for hydration. Anyhow, things move much more rapidly when you are an inpatient so we will see what we can do.
That is about all that is going on. We did get to do some fun stuff with Ashley this weekend while her grandparents were in town. She finally got to try out ice skating down at the PPG building and yesterday we took her to see the Polar Express at an Omnimax theater. Not to mention she opened all her gifts from both of her grandparents so she has plenty of new toys and other things to keep her busy.
I hope everyone has a wonderful Christmas. As for us we will have a great Christmas despite being in the hospital.
Good News!!! I just brought Ashley home from the hospital.
Bad News!!! Ally was admitted to the PICU at 4:30 this morning. Shane had called me home last night because Ally was not able to keep up her O2 sats and was really working to breathe. By the time I got home she had a fever and was vomitting. The ER docs thought it was best to place her on the vent to give her a little rest. She calmed down pretty soon after that. She has been started on some high dose stress steroids to help stop whatever this is we are fighting. When I left to bring Ashley home Ally was getting an ileoscopy.
We will try to update later when we know some more.
Ashley is still in the hospital, and most likely will remain there for for a few more days. The cultures came back positive for C-DIF. This is usually something you catch by touching surfaces and then, touching your mouth or nose. I'm sure Ashley picked it up at the hospital. The bacteria attacks the colon, causing severe diaherra, vomiting, and in worst cases blood in your stool.
Ashley of course has had all of the worst symptoms you could get with C-DIF. Currently she is taking Flagyl twice a day to help treat the bowel. The docs said she needs to have less stools with no more blood in order to come home. C-DIF is a very serious bacteria, and in some people can become a lifetime disease.
To top all of this off, Ally has been acting a little off today. Currently she has been needing oxygen to take naps. Our worrying is Ally may have caught some of the C-DIF spores. Guess we will see how things go over the next two days.
Please pray that Ashley's bleeding resides, and that Ally can stay infection free, and not catch the C-DIF. If Ally catches this, it could kill her.
The drama never ends for our family. Ally was released from the hospital late yesterday. She had a central line infection, of course. So all of this is the good news. Ally is home......but Ashley is not.
Ashley for the last couple of days has not been feeling well. Today she took a turn for the worse and became very dehydrated, and was vomiting non-stop. Needless to say we had to take her to the ER tonight, and currently was just admitted to the hospital! She has been getting fluids non-stop through an IV in her arm, and cultures were drawn. We should know more tomorrow.
You know if its not one child, it might as well be the other. These last four years have been difficult, and every time we think we may be making progress, our strength is tested again, and again. At some point life has to get a little easier, right?
Well, so much for staying at home. Ally is back in the hospital. After putting her to bed last night, we discovered she was breathing much faster and also had a slight fever. At about 2 a.m. her fever reached 102. We quickly took her to the ER, and then was admitted to the hospital at about 7a.m.
Ally had a rough night and currently is sleeping.
Anti-biotics were started this morning, and an x-ray showed her right lung was a little hazy. If we had to guess, it may be a central line infection. Needless to say we will be in the hospital for awhile, at least until Ally is feeling better.
Will update again soon with any new information on Ally's health.
Ally has been home for nearly two weeks and it has been absolutely wondeful (and completley exhausting). She looks great and is doing her best at getting around and keeping up with Ashley. It is so great to see the girls laughing and playing together.
The last two weeks have been filled with more appointments then I can count (today we had four). Ally was seen in transplant clinic twice last week and they made some med changes at both visits. She also had PT and OT two times last week. Ally also had a scope last week and one done this morning. Overall things have looked pretty good on the scopes they just wanted to double check some things that showed up on the biopsy last week.
Today Ally had PT, OT and an appointment with Nephrology for her out of control blood pressures. The renal doc prescirbed yet another blood pressure med so hopefully this one will help. Yesterday Ally had a bronchoscopy and her ENT doc felt that there is no reason to keep the trach. He would like us to schedule with Pulmonology just to be sure everything is good and then they will schedule for decanulation. Hopefully we can get this done in the beginning of next year.
I can not even begin to tell you how busy my days have been. Ally is on so many meds that I could fill my days by just giving meds. Shane and I did get a nice break this weekend when we went to New York City for my work Christmas party. It made for a very hectic weekend but I was glad we could get away and so thankful that my Mom was here to take care of the girls.
Otherwise we are just busy getting ready for Christmas. I hope you all enjoyed the pictures of the girls visit with Santa. They both were excited and even told Santa what they wanted for Christmas. Ashley seems a little disappointed that we will be in Pittsburgh for the holidays but we will make the most of it. Later this week we will put up our Christmas tree and we are hoping to get out and do some other Christmas activities this weekend.
The updates will probably be less frequent now that Ally is home. I will update sooner if there are any major changes otherwise I just really don't have the time to update. I hope everyone is enjoying the holiday season. I will definitley update before Christmas.
Please continue to keep Logan's family in your prayers. Logan's little body could no longer take the stress it was under and he is now at peace. There are no words to explain Logan's family's loss but I think his mom put things in perspective when she wrote the following on Logan's website. "It is hard to comprehend that Logan is not coming home, but he is home"
Hug your children a little harder today, they are such a precious gift.
Please say a lot of extra prayers for our friend Logan. Logan's condition has become very serious today and he and his mother need these extra prayers so that they can make it through the next few days.