Ally Heintz

Well so much for coming home this week and at this point next week is not looking so good either. Ally spiked yet another temp on Sunday and this time she grew bacteria in her blood, urine, and trache cultures. Her blood cultures have been positive for two days now so the docs are getting a little concerned. Thankfully Ally has not been acting sick and has not had a temp since Sunday morning.

Ally has also been having an increase in stoma output. She was rescoped last Thursday and then again this Monday and both biopsies looked good. Transplant is thinking that it is probably related to her Milk allergy and have decided to switch her formula. Hopefully we will see an improvement in her output over the next few days.

Both of the girls are excited for Halloween. The had some trick or treaters tonight via our webcam. The girls got to see most of their cousins in their costumes. The girls also got to talk to their Daddy and both sets of their grandparents with the web cam. Ally got to do some fun Halloween activites this week thanks to her stoma nurse, Patty. She also had a girly day for Ally yesterday complete with feather boas, nail polish, lip gloss, eye shadow, hand cream, glitter spray, a new princess nightgown with a magic wand :) Ashley is going to trick or treat in the evening with some kids from her class. They do not dress up at school but are having pajama day instead.

I have been busy having training this week on Ally's homecare equipment. I am starting to feel a little panicked about having Ally as an outpatient, or maybe just a little overwhelmed. Thankfully I did have a wonderful relaxing weekend with some of my girlfriends from home. I also went out last week with Lynne and some of her friends for my birthday. We went to a Hibachi Japanesse Steakhouse and we had a really great time.

Hopefully I will get some great pictures of the girls tomorrow in their costumes and then we will add them to the site soon.

Happy Halloween!
Jill

As always, our days have been filled with non-stop excitement here in the Heintz family!

Our weekend started off nicely. Saturday we had my cousins wedding to attend, and enjoyed every moment. I wish we could of done something for Jill's 29th birthday, but with all of our other committments, we just ran out of time. We tend to always somehow do nothing for ourselves, and always are too busy thinking of the others around us.

Sunday morning, came and before leaving for Pittsburgh we thought we would have breakfast with my parents and grandmother. While on the way to breakfast, the cars empty gas light was on. Knowing this the night before that our car was low on gas, and knowing from past experience we have driven it before numerous times with the light on empty for miles and miles, we thought we had plenty to make it to the gas station. Of course, as our black cloud would have it, we ran out of gas about a mile from home, just after all the steep hills have been passed, meaning only one thing.....I had to start walking home!!
Breakfast was delayed about an hour, but we finally managed to eat and then make our way to Pittsburgh afterwards.

On our way back, we learned that Ally was not feeling well, and had spiked a temperature. Cultures were drawn, and we knew before we arrived in Pitt, that Sunday night was not going to be much fun.

Once in Pitt, we found out another surprise. The oldest of out three cars (don't let the number 3 fool you, one has 200,000+, and the other has 160,000+ miles), the one I planned to return home in 2 days later, decided it was not going to start!! Again, what else could go wrong?

Monday came, we found a garage to fix our car, which of course needed a new fuel pump...another $800 out the door! Oh well, I guess it could be worse, we could be without the car at all, and I would be then flying home, minus one car.

Monday and today, Ally was feeling much better. She has not had a temperature since after having her antibiotics started on Sunday. The cultures that came back, shown she was growing something in her trache, and whatever it was is being treated and going away as the days pass.

Ally did some working out with PT, standing on her feet with the assistance of a workout board device for about 10 minutes. The goal is to get her muscles and body stronger, so that the rest of her will also feel better, including those lungs of hers!
Besides PT, Ally also had OT. She worked on playing and tasting food. I can tell you now, this will be one of our biggest challenges,,,getting Ally to eat by mouth!! Ally has never really ever eaten anything by mouth, so you can only imagine the struggles she may face ahead! Could mean some tough love, if you know what I mean?

Ally also had a scope of her small bowel yesterday. There was a few areas of some slight concern, so more test will be run Thursday. The doctors never really gave much explanation what they were seeing, but said we should not worry...easy for them to say of course.

The last final piece of information to share is that we are currently working with the hospital staff to develop a plan to get Ally out of the hospital, and home to our apartment in Pittsburgh as an outpatient. Needless to say, this takes a lot of work and planning, and for the most part we were told that Ally should be able to leave as early as November 1st. Don't hold your breath on that, because as past history goes, one doctor says one thing, and the next one on shift the following week has other ideas. At this point we know not to think that something is set in stone, and know to work a day at a time. If the November first happens, great, if not, we will try the next available day ;)

Continue to keep Ally in your prayers, and pray for continued strength, that she will soon be able to make it out of the hospital.

Shane

Not all that much to report since things have been going well. Ally finally is off her fentanyl (narcotic) and they will probably start to wean her methadone on Friday. She has also been doing CPAP all day and will probably start to do it at night too instead of the bi-pap. Tomorrow the docs said she could try a speaking valve so I am anxious to see how she does with that.

My Uncle Wally is in town on business so we got to visit with him some tonight. I also got to catch up with some of our friends at the hospital. Logan was looking good and hopefully he will join us on the floor soon (cotaforlogand.com) Matisse is another friend of ours and she is currently waiting for a multi-visceral transplant. She and her family are here all the way from New Zealand (and I thought I had it tough) Matisse was admitted early this morning with a line infection but seems to be doing better. (I don't know her official address but you could go to caringbridge.org and then click on visit a site then type in matissereid).

Grandmom also game into town today. Ashley and I will be headed home for the weekend so Grandmom can keep Ally company. Shane and I have a wedding on Saturday and then we will all be headed back out to Pittsburgh on Sunday. Ashley has open house at school on Monday so Shane will get to be in town for that and have some time with both of the girls.

I am sure I will not be updating again until Sunday so no need to worry. Oh yeah I almost forgot Ally's biopsies looked good from this week and next week they will probably switch her to an oral dosage of steroids.

Take care,
Jill

Yet another week has flown by and Ally is getting stronger everyday. Sometimes it seems so strange how time can move so fast and yet so slow all at once. I can't believe we have been in Pittsburgh for 2 and a half months. There has been more and more talk of Ally being an outpatient and I am hoping that this week we will be able to set a target discharge date to aim towards.

We had more visitors this weekend and Ally and Ashley both enjoyed their time with their grandparents and cousins. Ashley got to visit the Carnegie Science Center which was a ton of fun and is definitely a place we will re-visit. She also had yet another trip to the Zoo (I think that was her fourth visit) but managed to see some new things. Including one of the tigers face to face. She told us that if the glass wasn't between them the tiger would have licked her!

Ally got to have some one on one time with her Gram and Pop and then some alone time today with her Daddy. She is settling into a nice routine as far as being asleep and awake. This of course is a huge help because I know when she is napping I can have a few hours of alone time with Ashley without feeling guilty for leaving Ally. She has also been participating with PT and OT. PT has been working on getting her to stand a little (with lots of support of course) and OT has been doing a lot of food play. The girls also got a new Barbie video this week that we have watched a least two times everyday. (Annie and Sandra I don't know if I should thank you for this video or send it back!)

Medically Ally is doing well too. We have finally reached her goal on feeds (45cc/hour). This week I plan on working with her to get her to take some formula by mouth. She has been doing well taking some of her meds by mouth so that is at least a start. Her scope and biopsies looked good and that makes three weeks of good results. Her white count was on the rise a little so she had some labs to check for EBV and CMV which can be nasty viruses for bowel transplant patients. We should have those results tomorrow. She has been doing well on her Bi-pap machine and today did CPAP for the entire day. She was put back on BI-pap tonight because she was breathing rapid and seemed a little distressed but lasting all day on CPAP was a good first day.

Ally has finally made it off her insulin drip and her glucose seems to be staying between 70 and 200. Which means it is still fluctuating a little but much better than it was before when she was anywhere between 40-455. They have also been able to wean her fentanyl a little everyday and she should be off her drip by the end of this week. Then we will need to start weaning her methadone and then the ativan. She really seems to like the methadone so that might be a slow wean too.

I guess that about sums up the week. Sorry I never get to update that often but like I said time just seems to slip away. If I think I am crazy busy now I don't know what I am going to do when Ally is outpatient but I still can't wait to find out:)

Jill

I hope everyone is enjoying the new video that Shane added of Ally. I know it has been too long since the last update but we were just too busy enjoying our week.

Ally finally moved out of the 6th floor ICU she is on the 7th floor's ICU. This is yet another step down unit but with semi-private rooms. Ally's roomate and her family are wondeful so that helps a lot. Plus it is still all the same docs and most of the same nurses that we had downstairs. She was also move off of the vent and onto a Bi-Pap machine. I am hoping that in the next couple of days she can do some sprinting off of this machine.

I got a great look at Ally's belly today and I really think her belly could be fully closed in the next two to three weeks. She has progressed well on her feeds and dare I say it but she is at 40cc/hour. Her overall goal would be 45cc/hour. For the first time in her life Ally's docs wrote an order to discontinue TPN!!! We did have to work on Ally's blood pressures a lot today. The last few days they have been ridiculously high (150's/100's) and that is with Ally already recieving three blood pressure meds. All of her doses have been increased and at least by tonight her blood pressure was 130's over 80's.

Ashley and Ally really enjoyed themselves today. Ashley got to sit in bed and play with Ally. They played Barbies and watched a video, played Candyland and Ashley showed Ally the pictures from her birthday on the computer. The girls were laughing and giggling and just acting silly like little girls should. It was really a wonderful day.

If you didn't checkout the new video of Ally make sure you do, she is too cute.

Jill

Crazy, crazy, crazy, or busy, busy, busy!!! I can never decide which way to describe my life. Maybe it is because I am so busy that I am going crazy:)

Anyhow, Ally's last few days have been okay, certainly not as good as the beginning of the week. Thursday and Friday she had fevers and today she had growth on her blood and urine cultures. Yesterday she was started on IV antibiotics and she had been off them about five days. Not to mention the line that we are getting positive blood cultures from was just placed on Tuesday. More than likely it is an overall blood infection and not just a line infection. The good news is she did not have a fever today and she was much more happy and content compared to yesterday.

Ally was also having increase stool from her ostomy so the docs backed off on the feeds a little. The increase output along with the fever made the transplant docs think rejection, but a scope and biopsies were done and everything looks good. We are all in agreement that a line infection would be better than rejection (lesser of two evils). She is doing well on the vent and has been mostly on CPAP settings.

Thankfully today was a great day for both Ally and Ashley. Ally was extremely happy this morning and this afternoon (although in between she had some meltdown moments). She was laughing, smiling, playing games, reading books, and watching movies. She was also awake from 8-4 and was beyond exhausted. Not to mention somehow she missed her noon methadone dose so by 4pm she was getting a little wild. The nurses were nice enough to sneak in all of her cousins to visit. I think Ally enjoyed this just as much as all of her cousins did. She even got dressed up for them. First she applied her big girl chapstick (which is bright red and Ally applies it for about five minutes. We have to get a picture!). Then she put on her new princess dress (thank you Patty her stoma and wound nurse) along with her matching headband and shoes. She was really too cute!

Ashely had a blast at her glow in the dark miniature golf birthday party. Afterwards she went with her cousins back to their hotel to swim. Then we all had a nice dinner out and headed back to the apartment for presents and cake. However, I think I forgot to mention that it was 10pm or after when they all went to bed last night and they were all awake before 7am. Not a good combo. Tonight I am praying that they all sleep to 8am (I am not joking either I am really going to pray for this). Tomorrow Ashley has another birthday party to go to for a little boy in her class and then I think we are headed to the zoo or the childrens' museum.

So I guess overall the week has been good. Ashley had another babysitter the other night (her one theache's daughter) which was a help and I think she will be helping out on a regular basis. Not to mention she was such a well behaved girl all week at the hospital and really got to enjoy being with Ally again. Ally's week was up and then down but seems to be back on the upswing and that's all that matters. We have a ton of pictures from the week so I will try to have Shane post some soon. Please leave Ashley some birthday messages in the guestbook and enjoy the rest of the weekend.

Also before I forget thank you again to Lynne. All of our faithful website followers may start to get sick of seeing her name but it is going to come up a lot because she has been such a huge help to me (not to mention she has now enlisted all of her coworkers, friends, and family to help me too). Lynne had planned a little outing the other day for Ashley as part of a birthday present and Ashley had a blast with all of the kids. Thank you Lynne, Terri, Grace, Kelly, Sidney, and little Jack too:)

I'll try to update by Monday.
Jill

Today was the first day that the "H" word has been mentioned (the "H" word is home and I don't dare mention this in front of Ally). Of course this is a long way off but the nurse who does all the homecare coordinating came by to talk to me this morning. It is never to early to get started on insurance approval for homecare infusion, equipment, nursing, therapy, and whatever else it takes to get Ally out of the hospital. We talked a little about what Ally will need and what companies she will start contacting. If all goes very smoothly Ally could be outpatient in another month but that is a big "IF".

Ally's last two days have been good. Yesterday she had a wonderful morning and by noon she was completely worn out from playing all morning. Needless to say she slept for the next four hours only to wake up on the wrong side of the bed. Ashley was very dissappointed that Ally wanted nothing to do with her and would not even play one game of Candyland:(

This morning Ally was in an okay mood. She had her melt down moments but twice I caught her smiling. I was also pleasantly surprised when she worked with her OT instead of throwing the toys back. She was supposed to get her first trache change today but she had scheduling conflicts. ENT came in to change her trache just as she was headed downstairs to IR to have another central line placed (double lumen then we can loose all of her other lines). I hope ENT comes by early tomorrow to do the change. Once she has her first trache change she will be allowed out of her bed and then I can finally hold her!

The scope that was done yesterday looked good and Dr.Kyle said that the biopsy looked better than last weeks. However he said he would like her scoped again on Thursday because the biopsy was not perfect. She has not had her feeds increased at all this week so hopefully we will get around to that tomorrow. Most of the day today her feeds were off so that she could be sedated in IR. The only other changes have been the vent weans. Ally did a CPAP trial yesterday and ended up doing so well that she was on CPAP for almost 6 hours. She was then put back on a rate for a few hours and then went to CPAP again. During rounds the docs said that she could just switch to CPAP all day:) Of course then she got sedated and paralyzed for the new line so she is now back on a rate:( Hopefully she will be back on CPAP tomorrow.

Ashley has also been having a good week. I think she may explode with excitement and exhaustion by the end of this week. She is counting down the days to her birthday celebrations (yes, celebrations not celebration) I think next year she may be dissappointed when things are back to normal and she just has her boring birthday party at home. The festivities begin Thursday and will not stop till Monday. Plus she has a party for one of her classmates on Sunday. She also had a new babysitter last night (someone from home who goes to school at Duquesne) and one of her teacher's daughter is going to babysit for a little on Thursday. This is a huge help for me and Ashley loves all the attention. I am going to add a link to Ashley's school. Ashley is one of the featured artist this month in their online art gallery.

Take care,
Jill

I wish there was a way for me to describe what a wonderful day today was for me but all I can say is Ally is back!!! She is by no means anywhere close to 100% but she is definitely back. Today we got to see her spunk, determination, and her laid back happy self (I could be that laid back if they gave me all the meds she gets). I think Ashley is even more ecstatic than me and she was even complaining that she had to leave the hospital and couldn't continue to stay and play with Ally.

I also wish I knew how to add pictures to the website because I had the chance to capture the moment. Needless to say you will all have to wait for the weekend when Shane can add the pictures.

On to the details. We had a list of things that we wanted discontinued and Ally's docs happily obliged. Her NG tube was removed so now she has a completely tube free face:) She also had her foley catheter removed. Her vent settings were weaned again and her narcotics were weaned during the night. Her feeds were increased and her stoma output has slowed down which means she has time to absorb her food.

The big news tonight when I talked to her nurse was that Ally is moving to IICU!!! This is great news a huge step in the right direction and a step closer to the floor, a step closer to discharge, a step closer to home (need I say more).

I really wish there was a better way for me to capture today. Seeing Ashley and Ally playing together again after so long left beyond emotional. A week ago I would have said that this roller coaster ride was never going to end but now I am praying we turned the corner and we can finish out the ride smoothly. As i always tell Ashley, "the sooner you get to bed the sooner tomorrow will come". Well I am going to listen to my own advice and go to bed because hopefully tomorrow will be just as wonderful as today.
Jill