Ally Heintz

Sorry for the long delay in updates but thankfully there has not been much to report on the past few days.

Yesterday Ally had her dialysis catheter pulled and thankfully with it out the bleeding has subsided. Unfortunately her need for blood products has not. Since the bleeding has stopped she has not needed as many blood transfusions but she still received platelets about three times yesterday and already she received them twice today. She also received some more IVIG (immun oglobulin) due to the amount of platelets she is receiving.

Yesterday and today Ally has been awake quite a bit. Most of the time she is just quiet awake and enjoys when we read her books or play a video for her. She is still responding appropriately to yes and no questions. It is hard for Shane and I to see her awake because her eyes show the fear that she must be feeling. We can tell she looks scared and sad so that breaks our hearts. On and off she becomes aggitated and begins to cry. Of course you wouldn't know she is crying if it weren't for her face and the tears. The ET tube prevents her from making any sound which also must be a little frightening for her. Right now Shane and I would be happy if she would just sleep because it would be easier for all of us.

The plan right now is to take Ally to the OR early next week (hopefully even Monday). Place a new central line and then get her ready for extubation. As of right now we don't think we will go ahead with any surgery on her stomach. We have dealt with it this long and it doesn't seem to be the source of any infection it just added to the problem a little.

Before I forget, people have been emailing about blood donation and how they can help, well we have the answers. Two blood drives have been set up in honor of Ally. Both drives were coordinated by Miller Keystone. The first drive will be at St. John's Lutheran Church in Boyertown. The drive will take place on Saturday April 7th 8-12. To set up an appointment please contact Carol Meeker at 1-800-486-2566 x125. The second drive will take place at New Hanover United Methodist Church located on Swamp Pike in Gilbertsville. The second drive will be on Monday April 16th from 2-8pm. To set up an appointment contact Sue or Harvey Hohl at 610-385-6671 or Don Green at 484-945-0232. If you have any other questions please feel free to contact Shane or I.

We will update again sometime this weekend. If you don't hear from us you can assume that no news means good news or at least it means no change. Thanks again for all the support.

Jill

Another status quo day for Ally. The docs were able to wean some of Ally's heart meds and some of her ventilator settings. Unfortunately, she has needed platelets 4 times in the past 36 hours and blood 2 times in the past 24 hours. We are not sure why her body is not recovering by now and not starting to make new platelets and new red blood cells.

Speaking of blood, today I contacted Miller Keystone Blood Center which is our local blood center (there is a link off of Ally's website). We informed them that we would like to set up a replacement blood drive to help replenish the blood supply that Ally has been using up. They are working on a date and it could be within the next two week. I will post the date as soon as I have it.

Not much else to report right now which is fine with me.

Take care,
Jill

Today was another good day for Ally! She was awake for a little on and off this morning and afternoon. She is just kind of quiet awake, she is still on a lot of sedation meds. Tonight she is resting very well and her heart rate is nice and low so we know she is comfortable.

Ally has made huge strides from where she was a week ago, but while listening to rounds today I was reminded how sick she still is. Of course, we will only focus on the positive and that is exactly why I should not listen to rounds. The docs present all the best and worst case scenarios for everything during rounds.

Ally has stayed off of the dialysis machine and is really holding her own as far as fluids go. She did receive platelets twice today and blood again tonight so I am hoping she can keep up with the extra fluid volume. She was weighed today and she still is up a little over 2 kilos from when we came in (which is about 4 1/2 pounds). I can't even imaginge how much she weighed last week. Considering for three days she had about a liter and a half of fluid pulled off (which is about three pounds worth of fluid each day).

Since the dialysis has stopped and Ally has had to clear her own fluid she has gotten some fluid on her lungs again. The docs are trying to control this with some other diuretics and by increasing the support she receives from the ventilator. If she continues to produce enough urine then tomorrow they will probably pull the dialysis catheter (one less place to get an infection). Also, tomorrow the docs may restart her rejection meds. She has been off of these for about a week but they can also be very ####### the kidneys so we'll see how her numbers are tomorrow morning.

Shane and I are very excited about all the support we are receiving for Ally's Angels team for the Dash for Donor Awarenss. Ally's social worker from transplant was down today and she said she is jealous (I think last year we had more people than duPont's team so we told her we just may take over their team). Anyhow, Shane and I really enjoy watching the team grow and we are thrilled to see people support such a great cause. One quick note about the walk, kids are welcome in the walk but you don't have to register them. Just make sure you email us t-shirt sizes for everyone that will be there the day of the walk.

Thanks again for keeping us in your prayers. Today I would like you to say a special prayer for all the nurses here at duPont they really are such a special team and it seems like lately they have been run ragged. Not to mention half the PICU nurses are pregnant and I can't imagine the mixed emotions they must feel when caring for such sick children. The worries they have must be ten fold compared to other expecting mothers. Please pray for all of them to have strength and to stay positive.

Take care,
Jill

Another good day for Ally! She is no longer on the dialysis machine, and the amount of meds is decreasing. Her kidney function is getting better, and she is producing much more urine. Ally is still sedated and on the ventilator, and most likely will stay that way until we figure out what tests or procedures she will have done later in the week to get a diagnosis of what caused her to become so sick.

Ally was awake a few times today and was answering "yes" and "no" questions. She was happy and asked to see Ashley. Ashley was doing much better today seeing Ally in better health. Sometimes I think people forget that Ashley has paid a huge price for having to deal with Ally's illness, and that was clear as we watched her this past weekend. Please say a few extra prayers for Ashley as she trys to cope with Ally's illness.

Please, also continue to pray for Ally as she makes her way to becoming more stable with her health these next few days.

Walk information is below. Let's try and make Ally's Angels the #1 team and if we can, have Shane's contribution area be #1 so that we can win both categories for the top fundraising awards! Top single fundraiser wins two airline tickets this year. Would come in handy for Pittsburgh, if you know what we mean! You can see our progress via the homepage link on the gift of life site. Keep up the great work at raising funds and awareness. Every dollar helps, and just might save a life, even Ally's!!!

If you do not feel comfortable making a donation on the web via a credit card, you can either download the online form and mail your contribution to the Gift of Life, or make a personal check out to Shane and Jill Heintz, and we can then send your money to the Gift of Life for you. Just make sure the check gets to us in the next two weeks.

Remember also, that if you join the team to send us your t-shirt size(s), even childrens, at aajsheintz@yahoo.com Thanks!

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Reminder:

If anyone is interested in participating in the Donor Awareness Walk on April 22nd 2007 as a part of the "Ally's Angels" team, below are some details. If you cannot walk and would like to make a general contribution, please visit the general contribution area after you have clicked the link off of Ally's homepage.

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Registration is $25 per person. This will entitle you to a FREE Gift of Life Walk t-shirt. Unfortunately they do not have children's sizes.(Children under 5 are free; however, they will not be eligible for a t-shirt). Strollers are permitted for the walk.

Remember that if you join the team to send us you t-shirt size, even children!

To Register: Visit the link off of Ally's homepage. You can join the team or click the general donation tab to Shane's area and make a small contribution there. When you register, they will ask you to do it w/a credit card. After April 16, the registration fee goes up to $30 if you plan on walking.

Walk/Run Details: The walk is a 3K (1.8 miles) walk, everyone needs to meet at the steps of the Philadelphia Art Museum at 10:45 a.m.(rain or shine) on April 22nd. The walk will begin at 11 a.m. There will be an award ceremony & refreshments afterward. You can also decide to join the 5K (3.1 miles) and 10K (6.2 miles)runs.

Sponsors: They would like everyone who walks to make a personal donation or to get sponsors to raise money for the Gift of Life.

Incentives will be given: 100-149 raised - Dash baseball hat; 150-249 raised - Dash bag; 250-349 raised - Dash hooded sweatshirt; 350-499 - Dash jacket; 500+ raised Dash warm-up jacket/pant set. Top fundraiser will receive 2 round-trip tickets from AirTran Airways. To receive an incentive all money must be received by April 22nd.

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How else you can help:
You can add the donor designation to your license at anytime in Pennsylvania and Delaware by visiting www.donors1.org.

The ability to save or enhance the quality of life for patients depends on more families giving consent to organ and tissue donation. Quite simply, to ensure your wishes are fulfilled, the organ donor designation should be added to your drivers license or state ID and also discussed with your family members so they understand your decision. Then, and only then, will more lives be saved and improved through transplantation, which is why education on donation is so important.

Thank you! Please email (aajsheintz@yahoo.com)with any questions of if you are interested in walking.

Another fairly stable 24 hour period. Actually it was nice to see that Ally's two nurses were slightly bored this morning.

Ally's clotting factors have finally stabilized so no more plasma exchange for now. Today they have worked on weaning some of her heart and blood pressure meds. They have been up and down so it will be a slow wean. Also they have weaned her oxygen a little and got rid of the nitric that they had been giving her through the vent.

She is still on the dialysis machine and we are not sure when they may stop that. As of now there is no talk of stopping in the next day or so, we'll just wait and see. She is still just having a tiny bit of urine out so keep praying for her kidney function to return to normal.

I think the plan over the next couple of days is to keep getting Ally more stable and wean some of the meds she is on. She may also head to the OR for some tests to see what got her so sick in the first place. The docs are putting in for a referral with a hemotologist and they may aspirate to get a bone marrow sample to look at. Also they had talked of a bronch to getter some deeper lung samples for testing.

Thanks again for all the support, prayers, and food. We couldn't have made it through this past week had it not been for our family, friends, and prayers.

Take care and we'll update tomorrow morning.
Jill

Another long day in the PICU for all of us.

For the most part a fairly quite day with some progress. Ally has lost some more fluid, needed more blood due to some of her line wounds and clotting factors. Her ventilator settings have dropped some, but not much. She is still on the dialysis machine, which had some mechanical issues today, but is back and running now. The doctors thought they could stop her paralytic med today that keeps Ally from moving, bad idea! Ally became very restless and was trying to get up and out of bed. She even opened her eyes a few times, but only for seconds. Needless to say they knocked her out to keep her calm and peaceful. She needs this in order to heal and get better. There is still some concern for her kidneys, and are keeping close measurement on her urine output. We need the next few days to continue to improve so that Ally can maybe get a call from Pittsburgh at a Status one on the transplant list to be transplanted.

Thanks to all our visitors the last few days, and those you have sent gifts, food, prayers, and support! Without your help we would have had a much more difficult weekend. We are looking at a very long and difficult road ahead of us and will take whatever support you can offer. Balancing Ally, Ashley, our jobs, hospital and insurances, and just our daily way of life is very stressing at times. We do our best to remain positive, but sometimes are so exhausted from the day we just need to lean on others. Thank you!!

As long as we have your attention to the site, we will also continue to remind you of the donor walk and the difference you could make by joining our team or just by donating a few dollars to support the Gift of Life. This is extremely important to both Jill and I, and should be to you also.

To see first hand, someone have to come from the Baltimore area to bring blood product to duPont, rather than Philadelphia to give the gift of life to Ally all weekend concerns us. We as an entire community take for granted that blood will be readily available if we would need it. It's just not the case. Through Ally we can make a difference and are shooting to be the leading fundraising team at the Gift of Life walk. Please help if you can. The link is on Ally's homepage to make a donation that is tax deductible!!! Thanks!

Ally has managed to remain in critical but stable condition over the past 24 hours. The docs were able to lower her ventilator setttings more and to decrease some of her heart meds. Yesterday the plasma exchange was put on hold because the docs felt it was more important to keep her on the dialysis machine all day. We think this is why we got behind on Thursday on the fluid removal because during the plasma exchange she is off the dialysis for 4 hours.

Ally was the incredible shrinking baby, Thursday she had puffed up again over night but during the day Friday they pulled off a lot of extra fluid. The docs got a little to aggressive with the dialysis so we had to back off a little but that is helping to keep Ally more stable. Unfortunately she is still barely making any urine so we are a little concerned about her kidney function and how well it will return after we get through all of this. For now that can't be something we worry about though.

The docs may opt to do the plasma exchange today. Ally's clotting factors have been holding were they are at but they are still out of normal range. The good thing is she is now only oozing blood from the dialysis catheter site and her g-tube stoma, and the bleeding there has diminished.

Thanks to all of you for the prayers and words of encouragement for Ally and for the rest of our family. Also thanks for helping to build our team for the donor walk. Shane and I have been keeping track and noticing how many people are signing up. If you have signed up remember to email us your T-shirt size so that we can get you a T-shirt for our team (this is different than the shirt you get for registering for the walk). Our email is aajsheintz@yahoo.com.

Since Ally is looking a little bit better today maybe we will get some pictures and try to post them when we can. Here's praying for a good day!

Jill

Just another quick update to say that things have remained status quo during the night. We made some progress yesterday with the plasma exchange but had some issues transitioning back to the dialaysis. Later they were able to pull of some extra fluid through dialysis but than had issues with other numbers so they needed to give it back.

Today Ally will be having the plasma exchange done again and we will keep trying to get the fluid off. The vent settings have stayed the same mostly because Ally has been very stable with them (at least for right now) so since she is not going to be extubated for quite some time there is no reason to push her. Also right now her pressures and oxygen settings are kind of moderate or at least not as high as they had been so they are not causing damage to the lungs while trying to ventilate her.

We will post later this afternoon. Keep the prayers coming. Please pray that they can continue to pull off fluid and that while doing that all her vitals will remain stable. Also pray that they can relieve some pressure and distention in her abdomen so that her bladder could do some work on its own. Finally please pray that God gives the nurses, docs, and all the support staff the strength to care for Ally and all the other children (right now the PICU seems to have so many children stuggling.)

Jill

Ally is back to being very unstable. She had a procedure done this afternoon that took all of the blood plasma from her body and replaced it with 600cc of new plasma, (courstey of the Red Cross).

When the docotors make any small changes, Ally's blood pressure increases or she then starts with low saturations. We are having a hard time keeping up with her and getting a balance that will stabilize her. The plan tonight is to get her back on the dialysis machine to lose some more fluid every hour, which will help her breathe much easier. Tonight will be just like last night, longggggg!!

Please pray that God gives her the time to lose the fluid so that she can rest more comfortably.

We will update again later with any more changes.

Please remember if you have not had the chance to think about joining us on the Donor Awareness Walk this April 22nd, or maybe just a small donation to the team. Without the Gift of Life support we would not have Ally today, nor would many others be able to continue living. Your donations help support the Gift of Life continue their education programs to help save lives. The link is on Ally's homepage to our team. You can join the walk, or just a small donation is greatly appreciated!!!!
Thanks!

Ally has made it through the night!!! She is slowly improving, and I mean slowly! She has lost some fluid on her body, the dialysis is working and she is urinating much more. Her blood clotting is getting better, she is off the osalator machine, her settings on the ventilator are also improving. We are heading in the right direction, but the road ahead can always change within a second, this we know.

Last night was the most difficult night we have ever faced! Not much sleep, alot of crying, and thankful for the huge team of doctors, nurses, medicine, and prayers that kept Ally alive. Without the support from everyone, we would not be able to do this.

Today looks to be another long day. The doctors are working around the clock to bring Ally back to health. Ashley is also here today, and will be getting a small lesson with some great people here on some medicine and what Ally is dealing with. Ashley has not seen Ally in this condition in a very long time, and needs some education before coming into the room to see her little sister.

On top of all this, Pittsburgh has been well aware of the situation, and Ally has moved to a status 1 on the transplant list. Not that it means much now, because she is too sick for the surgery, but if we can get her just a little better by next week, hold that status, we could be going from here to Pittsburgh.

Another decision being made is whether or not to close her g-tube site while she is on the vent. This would help with some bleeding issues we where having since Ally likes to pull at her stoma site, causing it to bleed. We have to weigh the decision on do that surgery, run the risk of a set back, or hold steady and see if transplant calls.

On a more positive note, before Ally was sedated on Tuesday, she was watching her favorite Disneyland video saying she wanted to go there. Well, starting today we are going to contact the Make a Wish foundation to see if her dreams will come true after she awakes from sedation. We want to make sure she gets there before we may never have the chance.

You never realize how precious life is until your back is up against the wall like last night. Be thankful for all you have, tell the people you love, just how much they mean to you, because all I could think about the last few days was what I said last to her before I went off to work, thankfully we both said I love you to each other!

We will update again later this afternoon with any more changes.

Please remember if you have not had the chance to think about joining us on the Donor Awareness Walk this April 22nd, or maybe just a small donation to the team. Without the Gift of Life support we would not have Ally today, nor would many others be able to continue living. Your donations help support the Gift of Life continue their education programs to help save lives. Last night was a perfect example just how important it is to do all we can to help others. The blood bank was pretty much out of Ally's rare blood type AB negative, but somehow managed to save her through miracles of medicine. To here that you may die because someone could not take the time to donate blood, and realize that impact is mind blowing. Something so simple we take for granted, could one day effect your life in a huge way. So please consider helping the Gift of Life today! The link is on Ally's homepage to our team. You can join the walk, or just a small donation is greatly appreciated!!!!

Thanks to everyone for you words of encouragemnent, we look forward to reading all them when we have time during the day. It's very comforting to know your there, and were not alone! Thanks.

This entry is difficult to write without becoming overwhelmed with emotion. Ally is still fighting. She needs to lose alot of fluid over the next few hours in order to live. I ask that if you are reading this, please, please, please pray for her!! The strength to do this is just too much. No parent should have to see or deal with what we are having to endure tonight.

Ally is now hour by hour. We are not giving up! However, we need alot of hope, faith, prayers, and support to make it through tonight.

Medically everything is done what can be done, we now have to wait and pray.

I can't promise when the next update will be, but the hope is it will be good.

We will try to keep updates steady and short through out the day so we can keep everyone informed. Today is not much better, in fact worse than yesterday. Ally needs prayers for her kidneys to start functioning, lungs to clear and her heart to keep fighting!!

She is about to go on a more critical ventilator (osalator) and may even start dialysis for her kidneys. There is a ton of work going on here to keep Ally fighting.

This is got to be the toughest day yet we have ever faced. Please keep those prayers coming!!

I am not even sure where to start with this update because it has been such a long day.When Ashley and I arrived at the hospital this morning Ally was wearing her oxygen mask and was obviously in respiratory distress. By ten o'clock it was clear that Ally would not be able to continue breathing on her own. Grandmom got here just in time to wisk Ashley out of the room while Ally got intubated and placed on a ventilator.

It is not like we haven't been in this situation before but it is so much harder to go back when a month ago Ally was looking and acting better than she ever had. Ally's vent settings are pretty significant and we are sure she will remain on the vent for the next week or so. She has still been having a lot of bleeding from her g-tube stoma site. Because Ally's clotting factors are so high we are having a difficult time getting the stoma to stop bleeding. She has received more platelets and fresh frozen plasma today and her clotting factors are slowly improving.

Another major dilema is Ally's IV access. Her central line has become infected, which is scary because Ally is already on so many IV antibiotics so it must be a very resistant bacteria. The docs thought it would be best to not waste any time trying to clear the line so today her line was pulled and another central line (femoral) was placed. She also has a couple of peripheral IVs. Ally is being sedated but not paralyzed and she is on a couple of continuos med infusions.

The main goal for tonight is to try and stabilize her clotting factors and possibly wean her oxygen (she is currently at 90% which is down from 100%). The vent settings they will leave alone for now unless Ally's condition worsens. She is also having some issues with electrolytes and her glucose so we will try to straighten that out as best we can. Actually because her electrolytes are so off balance Ally's TPN was stopped (hopefully just for today). Also due to the fact that Ally is so sick the docs thought it was in her best interest to stop her immunosuppression meds (rejection meds). They told us not to worry to much about this causing any kind of liver rejection because typically when kids are this sick with infection the body kind of ignores the liver.

I hope this brings everyone up to speed a little. I am sure it makes for some unanswered questions but that's the best I can do right now. We are beyond emotionally and mentally exhausted. Had it not been for the PICU staff's (nurses, doctors, clerks, aides, social workers, everyone!!!) exceptional skill and emotional support we would not have made it through the day and I mean that literally. Right now they are doing just about everything medicine has to offer so mostly Ally needs lots of prayers.

We will update tomorrow when we have some good news.

Jill

Ally had an okay day today. Most of the day she spent trying to get some rest only to be disturbed by yet another doctor or nurse. I forgot how chaotic the PICU can be and today was very busy! She is resting comfortably right now and I am hoping she will have a good nights sleep. Last night she was up a lot due to fevers and because she is on so many meds plus needing blood products, they needed to start another IV and Ally is not an easy stick.

Most of the day today she had a fever. The docs are trying to keep tylenol and motrin to a minimum because they can effect your bleeding time (platelets). They will only give her tylenol every 6 hours which helps to maintain her temp but doesn't really bring it down much. When I left her room she was 103 but like I said she was surprisingly resting comfortably. She will also need to get platelets again tonight. Ally has a rare blood type (AB negative) so they can not match her platelets exactly. Therefore she also needs to get a special med called immunoglobulin to protect herself from antibodies. Her blood type is okay for a regular blood transfusion because AB is a universal recipient so she usually is transfused with type A blood. All of this reminds us how important it is to donate blood. Tonights platelets will be Ally's fourth blood product she has received in the past nine days.(To find out more about blood donatiion go to Miller Keystone's Blood Center link at the bottom of Ally's home page.)

Today Ally was needing more oxygen than yesterday but not as much as she needed Saturday when she was really in respiratory distress. She also had an ultrasound done of her kidneys (I am still not sure why but hopefully I'll find out tomorrow). Dr. Dunn would like to have an upper GI done with a small bowel follow through but its takes quite some time for contrast to pass all the way through Ally's bowel so he feels she is too sick to have this done right now.

I don't forsee Ally moving to the floor anytime in the next day or to. It is hard to adjust to life in the PICU again. It also makes it more difficult for Ashley to be here so she will be heading home to school and to Grandmom's and Gram's for the next few days. It is nice to see all of Ally's old nurses and we know that right now this is the best place for her to be.

We'll update again tomorrow hopefully with all good news! Don't forget to go to the link for the Dash for Donor Awareness. We already have people signing up to be Ally's Angels!

Take care and please keep our friend John Maicher in your prayers. John and Ally were both admitted the same day two weeks ago and now John too is battling some kind of infection. Although we wish both John and Ally could be at home it is nice to have someone else here that we can talk to, misery loves company!

Jill

Well so much for a smooth and easy recovery. Ally has started back with fevers again late yesterday. Early this morning at 3 a.m. the hospital called to say she needed blood and platelets. We will just have to see how today goes.

We also added a link on Ally's site for you to join us again this year as we will form a team to help support the cause of Organ Donor Awareness. Please consider making a small donation or better yet, join us on April 22nd as we walk as a team to support the Gift of Life. This cause means a great deal to Jill and I and would love to see our team grow in size!! Please consider taking the time to show your support!

If you plan to register for the team, please do so early (by April 1), so we can have the correct number of t-shirts made.

Thanks!! Shane, Jill, Ashley and Ally.

By some small miracle, and Allys strong fight, she pulled a complete 360 degree turn for the better over night!!! She was talking, smiling, and out of bed for the first time all week. We still have no answers to what is causing the distended belly or fevers and breathing issues, but to see her in better spirits feels like we got by another big hurdle! Ally has not been that sick since maybe transplant. So today is a good day, and for that we are thankful!

Ally may be able to leave the PICU unit tomorrow, and be put back on the floor tomorrow. I'm sure we will not be coming home to soon, since she is still on 5 different anti-biotics.

We will update again soon with any new information. Thanks for those prayers, keep them coming!

Its been now over a week in the hospital, and we still have no answer to what is making Ally so sick. She had a CT scan or her head, chest, and abdomen yesterday, along with an ultrasound of her left leg which was swollen and cold. Today, she had a chest x-ray which was much worse than the previous days film. She is being tested and treated for every known infection and virus now.

Ally also had an EKG of heart because her heart rate has been extremely high. She also has had alot of small blood vessels breaking all over her body due to the high blood pressure.

Ally continues to only get worse as the days are passing. Today we were forced to leave the floor, and were admitted to the PICU!! Ally's breathing is not getting better. She is on about 5 to 6 liters of oxygen. If she continues to go down this route, the next move will be bypap, and then possibly moving to a ventilator.

Please pray she can fight this battle and remain strong enough to get over these issues. These are scary times, and Ally needs all the help she can get right now. Please keep her in your thoughts!

Sorry for the long wait on the update, but its hard to leave the room when she is so uncomfortable and in pain. We will update again soon with any news of what is causing Ally to be so sick.

Well once again I am wishing I had more to report but we still don't really know what is going on with Ally. Thankfully, she does seem to be having a much better day than yesterday which isn't saying that much because yesterdy was such a bad day. Ally also has not had a fever since yesterday afternoon so I am hopeful that the fevers have at least stopped.

The docs have switched her antibioitics again, this time to treat an inflammation type infection in her liver. The last two times Ally had labs drawn her liver numbers were very elevated and her abdomen is still very firm and distended. She also had pretty much stopped stooling yesterday and was gagging and retching all morning. X-rays were done to rule out an obstruction in her bowel and they showed no change so that was good. Her chest x-ray showed that her lungs were still a little hazy looking and she is still needing a liter or two of oxygen.

Also, Ally was so uncomfortable and in so much pain that they had decided to give her morphine. This certainly made her more comfortable and she was awake and out of bed for a few hours but she was still miles away from her normal happy self. The docs held off on labs today to try to prevent her from becoming more anemic. If her liver enzyme levels don't look better by tomorrow than they will probably re-scan her (CT) to make sure nothing new has developed since the scan that was done on Monday.

Please pray that tomorrow Ally's liver enzymes will come down and that each day she will feel a little better and get a little stronger.

Take care,
Jill

At this point I really wish I had something to report but unfortunately Ally is still being a mystery. Yesterday evening I had hoped she was getting better because she was awake for a little while and even playful but today she was the most lethargic out of all the days and only awake for about one hour.

The CT scan showed nothing which is good and bad because it doesn't help us figure out what is wrong. We had thought Ally's fevers were diminishing and much lower but today she has had two temps and her latest one was 104. Also when she is awake she is extremely irritable and seems to be having a hard time comprehending things and focusing. She has also been needing more oxygen and they were going to do another CBC because she may need to be transfused again (she was just transfused on Saturday).

The docs seem puzzled and Pittsburgh didn't have any additional ideas so we will kind of wait and see. For now they changed her IV antibiotics again and also started her on an antifungal IV med. Hopefully something will help and tomorrow I can report better news.

Jill

Ally still is not much better than the last few days. Fevers are not quite as high, but none the less she is still running temps. Today her belly looks a bit distended, so we are going to do a CT scan of her belly first thing Monday morning. No one can figure what is causing the fevers, since all her blood cultures have been negative.

Ally was tested for the flu and other virsus, and they all turned up negative. She had chest xrays and that also showed nothing. So we will continue to search for the cause of fevers and discomfort.

We will update again with any new updates. It looks like we will be here for awhile.

I think Shane and I have both been trying to delay the inevitable. We thought by not reporting any news we could keep things at status quo but, needless to say Ally was admitted to duPont earlier today. We actually felt like we had such a long healthy spell at home but the resident in the ER was quick to point out that it had only been five weeks since our last hospital stay. Our dear friend John Maicher had surgery earlier today (and thankfully is doing very well) so we think Ally just wanted to be here with him.

The past month or so has been great. Ally has truly looked and acted better than ever but all good things must come to an end. Ally began having fevers yesterday and due to the fact that her last few infections have been so severe, her doctors thought it was best to play things safe and admit her right away. As long as her temp is not up Ally is acting like her usual active self. Her hemoglobin is low as usual but she does not need blood (at least not yet). Other than the fever she really has no other symptoms so we will see tomorrow if the cultures have grown anything.

We also wanted to thank everyone for another great fundraiser. Ally's beef and beer was a huger success and Shane, myself, and the girls had a wonderful time. Both Ally and Ashley requestted songs and both were excited when they heard their selections played. It was great that they could be there and take part in such a special event.

I made a couple of announcements at the beef and beer that I wanted to mention again. First we will once again be getting a team together for the Gift of Life's Dash for Donor Awareness. This is a 5K or 10K run or a 3K walk. Last year we had a few runners and than they all joined us on our 3K walk. This event takes place in front of the Philadelphia Art Museum on Sunday April 22nd. If you are interested in joining our team please email us at aajsheintz@yahoo.com. Once we register our team, individual participants can start to register(we will add the link at that time).

The second announcement we made was that Ally has been chosen to be the spokeschild for the Corvettes for Kids fundraiser. This event takes place every August and has helped to releive some of the financial burden that families with medically compromised children may face. Since I am currently not at home I do not have all of the information to post about this event. But, I will soon be adding a link to their website and adding some more info about this event. In the meantime if you would like to help in any way with this event (volunteer, phone calls, donate something for silent auction) please email us at the address listed above.

Sorry for such a long update but that's what we get for being lazy with our updates. We'll try to post an update tomorrow to let you all know how Ally is doing. Please keep John in your prayers (pray for no more fistulas!).

Jill