Ally Heintz

Ally Friday's visit back to duPont yesterday, went OK.
They were able to get some blood back from her central line, but still had a difficult time. Ally's liver function levels were up slightly, but her bilirubin did not rise.

Ally returns back to duPont on Monday for more labs to test her liver.

I didn't put this news on before, because I thought speaking about it might jinx us, but a few weeks back, Ally had an ultrasound to see how her hepatic artery was doing, and they could see some blood flow around the clot. The clot was still there, but there was a chance Ally could keep this liver. The docs said they never seen this before, but if anyone could do it, Ally could. Also there were no injuries to her bile ducts. That was all great news, but did not mean we would not need to re-transplant Ally. The doctors could not give us a definite answer to which way this would all turn out. Another reason why I did not say anything. Dr. Dunn said we should know by June for sure whether or not she needs another liver. The way we will know is by going to clinic each week and seeing if her liver function levels rise. I guess the reason I'm telling you now, is since her levels went up, I know keeping this to ourselves was not what to do, it should be shared so Ally can continue to get all the prayers she can to help save this liver. Please continue to pray that Ally's liver survives this clot.

Some other Ally news: Thank you to everyone who turned out last Sunday to give the gift of life through blood donation. Even if you were rejected for certain reason, we still appreciate the effort to support others. Thank you to Carol from Miller-Keystone, for the continued success of collecting blood in Ally's honor. To date 132 people have donated blood in Ally's name.
Keep up the great work!

Ally had her first visit back to the hospital yesterday for clinic. They were going to test her liver functions, but an issue came about. Ally's central line in her chest that feeds her TPN, was not allowing the docs to draw blood from it. However, the line still allowed for it to be flushed and still was able to run the TPN in. This like all of Ally's past issues is a mystery.

So, today Jill and our nurse Julia are making another trip back to duPont. We will update again with what today's outcome is.

Ally's next fundraising event:

Boyertown Ambucs Fitness Week, 4/23-4/30:
Location: Daniel B. Boyer Center
For ages: na

Work out at the Boyertown Area YMCA Daniel B. Boyer or Hendricks Family Centers, raise money, feel great about yourself while helping others, and possibly receive a prize.

Anyone who wants to participate in the Ambucs Fitness Week gets a one-week free membership pass to work out at either the Daniel B. Boyer Center or the Hendricks Family Center for the entire week and then be part of the celebration on Saturday, April 30.

Pick up a sponsor sheet and a one-week Ambucs
pass at one of the Boyertown Area YMCA facilities -
The Daniel B. Boyer Center at 301 W. Spring Street, Boyertown
The Gilbertsville Center, 144 Holly Road, Gilbertsville
or The Hendricks Family Center, 3065 N. Charlotte Street, Gilbertsville.

Can’t join us? Just mail your tax deductible contribution to: Boyertown Ambucs, PO Box 302, Boyertown, PA 19512, with checks payable to ‘Boyertown AMBUCS.

The recipient of this year's Ambucs event is Ally. For more information call Kim Slonaker at 610-369-9622, ext. 225.

Ally finally was able to come home today. The day however was not easy at getting her discharged. We thought for sure she was not going to be able to make it home.

Ally had come down with a 102 degree temperature Saturday, and since you usually need 48hrs for a culture, we had to wait until later this afternoon to see if that would be negative. Transplant also was a bit leary at letting us go, being that Ally's NG drainage, and urine output were not quite stablized. They thought she might be a bit dry. So, before we were able to leave they ran a half hour bolus of saline fluid to "juice her up".

Ally will return to clinic Thursday for her weekly tests, and then twice a week .

So as of right now, Ally is resting comfortably, sleeping back in her own bed. The night was made much easier, by having our wonderful day nurse Julia, available to settle us back into home.
Also tonight, we started the process of meeting our first new night nurse, and getting her settled in to take care of Ally.

Thanks to everyone today and the past few weeks who helped making coming home possible!! A big thank you to Johanna for all her great work at settling the staffing and discharge issues we have had the past few weeks. Without her, we truly would not have been able to make it home. Thanks Johanna!!!

Check out the photos from today, and we will update again soon to let you know more of how things are.

Shane

No news usually means good things are happening.
Ally remains to be very happy, and we are working on getting everything ready for her big day home on Monday. Next week will take some time to adjust to being at home, but it sure will beat staying in Delaware all week.

I would go into how Ally's liver is doing, but everytime I mention good things, bad things happen. So, it is still premature to what is happening, but I can tell you this...someone is listening to your prayers, so keep sending them Ally's way. I will fill eveyone in on more detail when this are certain.

Anyway, not much to report on right now, but hopefully soon we will be home.

Also tonight if you have time, check out the Discovery Health channel, our friend John Maicher (his link is on our site)is going to be on the program. The show is scheduled for 8 and 11p.m.
The show is about the Gift of LIfe.


Take Care

Sorry for not updating until now, things have been very busy. Ally is doing much better. We are still on for coming home on the 18th.

Yesterday, we have made some vent changes, and Ally did 4 hrs on CPAP. Today she did 8hrs. Maybe this week we can try her on an HME. All this is the process of weening her from her ventilator. It would be great to finally get her off it.

Ally is also up to 18cc of formula per hour, and that is doing OK. She right now has a very soar bottom, due to her short gut, not able to absorb quickly enough.

Besides all that, things have been crazy. Lots of running around and keeping up with Ashley. This week looks to be no different.

Before I go, this week is Ally's blood drive. Please consider donating, you could save someone's life by doing this.
Sunday, April 17th - Contact Miller-Keystone at 1-800-486-2566 to sign up.

Also another event that is being done in Ally's honor will be held the same day as her Beef & Beer event on June 11th (the beef and beer is from 6pm to 11pm the other event will be taking place during the daytime.)

Galeotti Family Chiropractic Center Presents Family Day'05 on Saturday, June 11th from 11am-4pm. You are invited to a fun filled day for your entire family. This year's event will benefit the "Ally Heintz Recovery Fund".

The planned highlights are Dora the Explorer, Simba, SpongeBob, Free Bounce ride, Free water slide, Pipper the Clown, D.J'Ernie, Fodd & Bevarages (Pig Roast), Crafts & Games, Free Spinal exams, Free Chair Massage, Face Paiting and More. Place; 1003 Egypt Rd., Oaks. Take Oaks exit off Rt.422 and head 1.3 miles down Egypt Rd. towards Phoenixvill. We're on the left on thecorner of Egypt & Longford Rd. Look for the signs.

Phone:610-935-3066. Free Admision, Donations will be accepted for the Ally Heintz Recovery Fund.

Ally finally was awake today. Not much herself, but did manage to give a few smiles to let us know she was Ok. The docs say we are now focusing on getting her home, and will continue on working on feeding, physical, occupational, and speech therapy.
Ally has been listed on the transplant list, but since her liver levels are still so good, her score came back today at -1. No not even a zero, a negative number. I didn't think you could even score negatives. So it looks like we will be in for some waiting time now. As you may know, the higher your score the more likely the chance of getting a liver. 40 is the highest. Long ways to go from -1. So it could be months to years before we get a liver, it will all depend on her health.

The transplant team would like for Ally to go awhile before having another transplant, this would give her a better chance at surviving the surgery. So, maybe before she turns 2, we could hope for a liver. Also by that time Ally maybe off the vent, feeding, and who knows, walking or even talking. Of course all this will take alot of work.

Some good news today, is we have a discharge date to work towards. We are hoping to bring Ally home on the 18th of April.
Cross your fingers and pray, that we can make this happen before all our nurses run off and find other jobs.

Enjoy the easter photos. Trust me these are much better than the current Ally photos. The poor girl is so puffy and swollen from not moving the last 5 days, but she is improving.

Shane

Well so much for the clot busting TPA medicine. This morning when the sheath was pulled an ultrasound was performed and it showed no blood flow through the hepatic artery. Ally has developed some collateral blood flow and the portal vein also supplies some blood to the liver. Unfortunately this will not be enough and eventually Ally will need to be re-transplanted.

As of now Ally's liver enzymes have come down from the jump they had taken last week. However, the enzyme levels are still not within normal range. The doctors expect the enzymes to rise but they are not sure how long that will take. So, in the meantime Ally will be put back on the waiting list for a new liver. Once again she will remain on the list unless she gets too sick and cannot wait any longer and than the docs would use Shane's liver.

The hope is that Ally can maintain her liver levels for a few months and that we can get her home within the next few weeks, like we had planned. We are extremely dissappointed that the clot could not be broken up but at this point there is nothing else that can be done.

It doesn't seem fair that Ally has to be put through all of this but this is the way it is. Now we need to focus on getting her well enough to come home and well enough for re-transplantation. We are discouraged by this latest news but we will never give up hope that eventually Ally will have the opportunity to live a normal healthy life. Please don't give up hope on Ally and please keep her in your prayers.

Things changed Saturday night which lead to more issues. One of the issues Saturday night was that Ally's right leg was not getting blood, and was stone cold. This was thought to be from the catheter inserted in her thigh that went up into her liver to distribute the clot busting TPA. The catheter stopped blood flow to the leg because the diameter of the catheter was the same size as the artery in her leg, acting as a plug. The docs were very concerned about her leg, and used a doppler to listen for a pulse and of course could not find any. So, instead of pulling the entire catheter out, and loosing the chance at continuing the TPA, the docs let just the sheath of the catheter in and said they would evaluate the leg for 4 hours, then discuss whether or not we could leave the sheath, and continue running TPA over night.
Things improved through Saturday night, and Sunday we were able to go to Christiana again to see if the blood clot resolved.

The docs worked for about 3.5 hours this morning, and during that time used a tool that acted as a jet cleaner to bust up the remaing blood clot that still was existing in the hepatic artery.
They said that they had good blood flow now to the liver, and that working so much in the vein, did cause some injury to the area, just from the amount of time spent in their cleaning. This however should heal. They also decided to leave the catheter in until tomorrow morning, still running some TPA, and blood thinners to see if this will help resolve anything from reoccuring.
All of this is really pushing limits to how long this can be done to a person without risk, but they feel Ally is so strong, that she can tolerate one more day.

Tomorrow, we will remove the catheter, and then also stop TPA. Ally will remain on blood thinners for the next 3 months. We will not know if any permanent damage has been done for at least 6 weeks. The concern is the her bile ducts could have sustained injury, which would then result in her needing another liver. So we are far from being out of trouble yet. All we can do is pray for the artery to heal, clots to stay away, and that the bile ducts are OK.

If Ally would need another transplant, I have now passed all my tests including the final one (CT Scan) so I would be able to donate to her. This of course would be our last hope at saving Ally.

We will update tomorrow to let you know how Ally is doing.

Shane

Ally made yet another trip to the OR this morning to Christiana hospital. The procedure lasted maybe a half hour or so. Dr. Dunn then gave us the update that as of right now, there is better blood flow then from yesterday, and it seems that the TPA is doing its job.

The best way to describe what is happening is if you can imagine a blocked pipe, the catheter was first inserted at the end of the pipe, and is slowly being moved backwards to the other side, and as then pull back the clot is resolving. We just need to finish clearing the rest of the vein out so that there is no more clot.

So the catheter will stay in place today, Ally will remain sedated all day, and we will be taken another early morning trip back to Christiana on Sunday morning to see if we have made any more progress over the next 24 hrs.

We need this to be resolved by tomorrow, because running TPA for more than 3 days is dangerous, and could lead to bleeding. Dr. Dunn seems optimistic, and feels this is our best shot at saving Ally. He said there is no way of knowing what to expect, because we are now in uncharted waters. It figures that Ally would want to be the first at attemping this feat here at duPont.

We will update again today if anything changes, or by tomorrow after her visit to the OR. Please, please, keep your thoughts and prayers with Ally today and tomorrow. I know she hears them, and is working hard at getting through all of this to get home to be with her sister.

Shane

After a long morning Ally's procedure finally got under way around 11:30 a.m. Shane and I both went to Christiana with Ally but Shane had to leave before the procedure was over because he was scheduled for a CT scan at duPont. This way if Ally would need to be re-transplanted Shane has completed all of his testing process for living donation.

Around 1:45 the doctor came to get me and to take me into Ally. He said that after several attempts he was able to reach the clot and the catheter was in place and infusing the medicine(TPA) to dissolve the clot. The catheter has been left in and tomorrow we will head back to Christiana so that they can check the catheter and see if the blood flow through the hepatic artery and to the liver has been re-established. The procedure took longer than anticipated but thankfully they could access the artery.

Tomorrow they will decide if the catheter needs to remain for another day or so or if they can pull it. If blood flow looks good they will pull it. If blood flow hasn't improved they may leave it in place and give the medicine(TPA)more time to dissolve the clot or they may opt to pull it and try to remove the clot surgically.

Right now the docs are keeping Ally sedated and paralyzed so that she does not dislodge the catheter. Tomorrow we go to Christiana around 8:00 a.m. We will try to update the site sometime in the afternoon. Thank you for all the extra prayers today.
Jill

Today was yet another one of those days we have become to familiar with. We learned today why Ally has not been feeling so well the last couple of days. It turns out that she has a blood clot in her hepatic vein which is one of the main arteries of the liver.

Ally will be transported tomorrow at 9am to Christiana hospital for surgery that will start at 10am to hopefully remove the clot from the vein. Dr. Dunn will perform the operation in radiology to see if he can save Ally's liver. Ally then will be transported back to duPont to recover.

The worse case scenario is that the clot can not be removed, which then means Ally would need another liver within a couple of days to survive. So, I may become her donor on Monday, if I pass the CT scan which I have yet to take. Again, this is worse case, please pray for Dr. Dunn to remove this clot, and for Ally to have no permanent damage to the liver due to the clot.

We will update tomorrow night after everything settles down.

To any of Ally's nurses reading this, please know we are sorry if we can't make it home by the 11th. In fact it could be longer. We should know more by end of day Friday.

Shane