Ally Heintz

Well I am happy to report that we are all at home safe and sound. Of course, that is after a very eventful day!

It took me most of the morning to hunt down Ally's one doctor to find out if she would finally get to come home. Thankfully he said yes so my dad and I headed down to duPont to pick Ally up. Luckily Cheryl was taking care of Ally so she was very entertained and not missing me at all. However, when we got there and told her she was going home she wanted out of that room. Everyone that came in she said "bye-bye" to and when she wasn't saying goodbye she was saying "go"!

We actually made it out of the hospital, discharge papers and all, in record time and we were headed home around 2pm. I was beginning to think that we would be home early enough for me to be able to actually cook dinner. To my surprise luck would change those plans. As we were exiting RT. 422 and yielding onto Township Line Rd in Royersford, WHAM, we were rear ended!

Thankfully we were all fine and Ally even slept through the whole incident. The other driver had a lot of damage and was unable to drive his car. We have a good amount of damage and we can't open the rear door but the car was fine to drive. I am telling you I think there is never a dull moment in our lives anymore. We still managed to make it home by 4:30 but making dinner was out of the question!

Ally was excited to be home and played the whole evening and wasn't very happy when we told her it was bedtime. She will complete the rest of her IV antibiotics at home. They will do a blood culture next week once the antibiotics are complete. She also will have a checkup next week and than the following week we head to Pittsburgh for a checkup.

Hopefully the rest of the week will go smoothly and than we will update next week.

Take care,
Jill

P.S. There are only a handful of tickets left for the Beef and Beer this Saturday night. If you would like to go please call Mary Kay at 610-367-6693.

Unfortunatley Ally is still in the hospital and we just got the bad news that she will be in for probably another day or two at least.

On Monday Ally had a positive blood culture and they have been unable to identify the specific bacterial organism. Therefore they are not sure if she is taking the correct antibiotics to kill the bacteria. However, she had been having negaitve blood cultures, at least up until this morning when she had another positive culture. So more than likely the antibiotics are not working. This means staying until the organism from the new blood culture is identified.

It is very difficult to be back in the hospital after having such a long spell at home. I think the week has been especially hard on Ashley, she seems completely wiped out and she told me she just wants to go home!

Please pray that they identify this organism quickly and that there is a chance we could get out of here tomorrow or Saturday.

Thanks, Jill

Well, with no nurse Saturday night, everything of course on top of it made for yet another fun night. At 2 a.m. Sunday morning Ally started to run a temp of 102 degrees. This meant a trip to duPont Sunday morning of course.

As of right now, Ally is back in the PICU at duPont. She has another line infection in her new central line from last Sunday. She will remain here until she has a culture that is negative, and no temp. Her spirits are as always great. She is happy and loves seeing all the people. As for us, we are exhausted from all these long days and nights. The light at the end of the tunnel is getting further away, instead of closer!

We will update again soon.

Ally made a schedule trip on Thursday to have some additional tests done. One was for cystic fibrosis, and the others were for food allergies. We found out today some of those results.

Ally's one blood culture came back positive for yet another infection. Since she is acting fine, we will do nothing until her body tells us too. We also found out that Ally has food allergies to "wheat", "egg", "milk", and "peanuts". As if things could not get any more complicated, now we need to see an allergist! Yeah!!

I updated with some new snow day photos, and included links on the homepage to the new Boyertown Times News article, and the WZARTV link to the breakfast photos and video (Ally's info is on left side of WZAR's site). Enjoy.

Today it is one year since has Ally received her new liver and although we rejoice today another family is still grieving. Please say a prayer today for Ally's donor family and for all the other families who have made the choice to donate life.

Well Ally is back athome again and we are all trying to make up from our sleep deprivation. We got home Sunday night around 8pm and Ally had her new central line. Of course, we got a call to say we would not have a night nurse due to the icy road conditions. Anyway I forced Shane to take off work Monday I just couldn't see how he would make it for eleven hours in front of a computer on less than eight hours of sleep in 72 hours. I went to work Monday morning but only till noon. Ashley went to her Gram's in the morning so he could sleep and I got to nap in the afternoon. After all of that we enjoyed some play time in the snow. Ashley loved it and Ally hated it!

Ally has been well since being home. The docs were not concerned about the culture that was positive because it was taken from her skin and not necessarily a sterile site. The blood culture that was taken Sunday night was negative. However, when they remove the central line they usually send the tip of it for a culture and that of course was positive. As of now they are not planning on treating her with antibiotics unless she starts to act sick. Her new line is on the opposite side of her chest and since the blood culture was negative they are hoping that things will be okay. We have appointments down at duPont tomorrow so if things change they will begin antibiotics there and we can do the rest at home.

We took some pictures of the girls in the snow so Shane will have to put them up later this week. Thanks again to everyone who turned out to support us at the Breakfast last week. As special thanks to all the people who had volunteered to help I was amazed how smoothly everything ran!

Take care,
Jill

Fundraiser Info:

Beef and Beer Saturday March 4th at Keystone Fire Hall in Boyertown. Tickets are $20 each and should be purchsed in advance. DJ is Bruce Miller. If you would like tickets please call Mary Kay @ 610-367-6693 or LuAnn @ 610-367-0363. Tickets can also be purchsed at Bause's Super Drugstore in Boyertown. You can also email us for ticket purchasing and further info.

Longenberger Basket Calendars on sale now for the month of April. The calendars are $10 each or three for $25. A basket is given away each day. the drawing follows the PA daily number drawn at 7pm daily. For calendar sales call Mary Kay @610-367-6693 or LuAnn @ 610-367-0363. You can also email us for calendar purchasing and for further info.

Just as we should of guessed, Ally is currently in the PICU unit at duPont. Last night as Jill was trying to flush Ally's central line in order to connect her TPN, a clot in the tubing formed, causing nothing to be able to be flushed. We called the hospital, and they told us to go to Pottstown hospital where the duPont transport team would meet us to bring Ally to DE.

We left home at 10:30 p.m. and arrived at Pottstown at 11. Nothing like driving in a blizzard, with your child having a clot in her central line!! Not sure if this week could get any better.? I guess it beats having to drive to Pittsburgh on a night like last night.

After being at Pottstown for an hour we decided not to wait for a transport team, and drove to duPont ourselves. Pottstown turned out to be a big waste of time. Doctors there are never sure what to make of Ally when they see her.

We arrived at dupont at 1:30 a.m. We spent the next 4 hours in the ER. At about 5:30 a.m. Ally finally got into a room in the PICU.

Once again another spleepless night to finish off a sleepless week. Ovenight while transporting Ally she also had some strange fluid around where her central line enters her chest. They cultured it, and of course grew gram negative rods. As of now we are waiting until about 1 p.m. when Ally will go into the ER to have a new central line placed.

Hopefully later today we will be allowed to come home.

Thank you to everyone who took the time out of their day to spend a few hours with us at the breakfast. We had a great time and appreciate all the support shown towards our family and Ally.

We will update again soon.

Surprise, surprise, is what we had in store for us this morning at 2:45 a.m. We were awaking by Ally's nurse only to find out that her central line in her chest had exploded. Why? Who knows. Mostly I'm sure it's because we made plans for Ally to attend her breakfast later this morning, and her body had plans of its own. Needless to say Ally is currently at duPont, where a surgical team will hopefully attempt to repair the line. If this all goes well, Ally should still be able to make a small appearance at breakfast this morning.

We should of known this week was going to continue to be a week without sleep. With not having night nursing 2 nights this week, 3 hours sleep last night, and I'm pretty sure with the snow storm that is to arrive tonight, we will have no nursing, why not just finish off the week with a few more nights of no sleep!!

We will update again with how things have turned out with both the central line and the breakfast at church this morning.

Sounds like the snow storm will hold off for just enough time, to still have Ally's breakfast. We hope to see many of you there.

If you need the address to the church, it is:

St. John's Evangelical Lutheran Church
45 North Reading Avenue.
Boyertown, PA 19512

We still plan to have Ally attend the breakfast sometime in the later morning hours. Also if you have not yet seen the article, we did an interview with the Boyertown Times last week which is featured in this weeks paper in the Neighbors section.

Hope to see everyone tomorrow!!

Well Jill spoke too soon Monday morning. As usual, Ally had her own plans on what she was going to do yesterday.

Ally's feeding tube came out again yesterday, causing Jill and the nurse to make yet another trip to duPont to have it placed. If this keeps happening we may have to make a decision on what we want to do with keeping the tube in place. Since Ally is growing and becoming stronger, its getting harder for us to keep her from pulling at her lines and tubes. All of this is going to take time and patience to help her learn not to touch and pull on things attached to her. Easier said than done, trust me.

I went ahead and added some new photos of Ally's birthday parties this past weekend. She was a little unsure of the whole candle lighting and singing, as you can see her reaction in the photos. Not many smiles unfortunately.

Its hard to believe our little girl is two. It also amazes me to think back and realize just how hard we all worked, and how hard Ally fought to accomplish this milestone in her life.

This past weekend I took some time to organize all my home video footage of girls over these past two years. I couldn't help but wonder where all the time went. I watched some of our days back at Bryn Mawr hospital and watched Ally fight through some difficult times. As difficult as it was to watch her be so sick, it reminded me that even though it was two very long years of struggles, I still remember each and every day. Why? Because we changed the way we approach each day, stopping to enjoy every little moment, whether good or bad. Thinking back I would change nothing. Well . . . except for Ally to be healthy of course.

These two years have changed our family forever. We have had so many opportunities to learn life's lessons that I think we can only be thankful for what we have been given, two happy little girls! These days ahead of our family will most likely be the most difficult, but I now know, we can make it through any trial put before us, pulling together as a family.

Thank you to everyone for all that you have done to help Ally make it to her 2nd birthday. Whether you prayed for her, contributed to her fund, cared for when she was sick, or heck, if you even gave her some CPR to revive her when she was a nice shade of blue (thanks Karen!), I know she thanks you all. To reach this milestone took a whole town, a few hundred nurses and doctors, and grandparents who stuck with us everyday!
To all of you reading this... thank you for the part in which you helped Ally reach her 2nd birthday!!

Shane

Yeah, we beat our record!!! Last Thursday Ally officially beat her six week record of being home from the hospital. Up until last week that had been our longest spell home, along with a couple of four week and numerous two week spells. Of course we did still make two trips to duPont last week.

Monday morning Ally's G-J tube had come out so we made the trip to duPont to have it replaced. So, imagine my surprised when I looked in her bag Wednesday morning and saw that the tube was out again. Again we went back to duPont (both appointments weren't until late afternoon, so wwe got stuck in rush hour traffic too!) Thankfully Ally's tube has remained in since Wednesday, of course I am following her around everywhere and check it every two minutes!

We had a great weekend, with two birthday parties for Ally. Our family is a little too big to have everyone in the house at once so we split it between my family and Shane's family. Ally enjoyed herself and even managed to open a present or two by herself before Ashley took over. She also really loves seeing her cousins so that was nice too. I will try to have Shane put up some pictures one night this week.

The beef and beer tickets has been printed and are available. The event takes place on Saturday, March 4th from 6pm-11pm at Keystone Fire Hall. Tickets are $20 per person. If you would like tickets the can be purchased at Bause's Super Drugstore in Boyertown. You can also call Mary Kay Heimbach @ 610-367-6692 or LuAnn Reichart @ 610-367-0363, or you can email us at aajsheintz@yahoo.com

Take care, and hopefully this week will be less eventful. Don't forget Ally's breakfast is this coming Saturday February 11th at St. John's Church in Boyertown. Breakfast is served from 7-noon. We will be having pancakes, french toast, sausage, and scrapple. Plus juices, milk, coffee, tea, and hot chocolate. Adults are $6 and under 12 and senior citizens are $4. Hope to see you there, Ally will be coming by sometime that morning.

Jill