Ally Heintz

Sorry for the delay in this e-mail update, we had hoped to send an update earlier in the week, however, Ally was keeping us too busy.. The week started out okay with Ally doing well with her feedings. On Monday when her surgeon saw her she was very optimistic and pleased with Ally's feeding progress.

Unfortunately, Ally started with a fever late Tuesday night continuing into Wednesday. On Wednesday Ally ran a temperature between 104 and 105 the majority of the day, and we got it down to 103 by Wednesday night. Thursday her temp never went over 101. Along with the temperature came numerous blood and urine cultures. Ally had a Staph infection in her broviac central line, bacteria in her urine and also a yeast infection. She was started on numerous antibiotics again and as of today the infections seem to be under control. It is actually amazing that Ally has gone this long without an infection in her central line and we of course attribute this to the superb care that she has been receiving.

As of Thursday night Ally had made it to 8cc. of formula per hour, which was astounding progress. Also that night Ally received yet another blood transfusion and later had difficulty breathing and was put on a nasal canula to assist her with her breathing. Unfortunately, when I arrived at the hospital Friday morning I was informed of some more complications. Ally's fistula was having a considerable amount of drainage and we resorted to an ostomy bag to keep the area clean and prevent her skin from breaking down . On Saturday Ally's feedings were stopped and she was placed on a medication again that should help to close the fistula. Today was pretty uneventful and Ally seemed to be getting some of personality back.

Tomorrow we hope to meet with Ally's surgeon and come up with a plan to heal the fistula and to not restart feeds until we feel that the fistula is completely healed. Hope to update you again in the middle of the week.

Needless to say our holiday weekend did not start off too well. Friday, Ally's bowel formed another fistula (hole). This time Ally's belly opened while Jill was holding her. After Ally's bowl released all the fluid, she was very relieved and happy. We waited for the surgeon to arrive to have a look. Dr. Dunn cleaned Ally's wound, and said that for now we would wait for it to heal, and that we were not going to feed for at least another 2 weeks anyway. Back to the waiting and healing game.

Well, it looks like Ally will not be able to feed for least another 2 weeks. Surgeons say that even though the barium passed through Ally's bowel on 5/26 faster than before the STEP procedure, it still is just sitting in the bowel, taking longer for her to pass it. This is because during the STEP procedure, surgeons made the bowel smaller than usual (1cm in diameter), knowing then it will dilate somewhat back to a more normal size. This will give the bowel better motility when she does feed.

To top it all off, Ally has a bacteria overgrowth in her bowel. She is currently receiving antibiotics for that now. She also has been retaining more fluid, possibly from the barium sitting in her bowel, backing things up. And finally last night she was running a 102 fever. Hopefully this is not a sign of infection.

Sorry for the delay with the update. As you can imagine, Jill and I are very busy. Ally has had an up and down week these last 7 days.

The Good News: Ally's fistula (hole) in her bowel has closed on its own. Her belly is healing nicely, and she continues to be very happy. Yesterday, Ally had another upper GI test with barium to check for any more blockages. The barium moved through the bowel to the rectum just as it should.

The Not So Good News: Even though Ally's test with the upper GI shows that the bowel is moving the barium through, Ally continues to struggle with her own stomach secretions. Meaning she has been throwing up more than we want. As the week has progressed, Ally has been getting a little better. I think the surgeons are going to forge forward with feeding, and see how much Ally can handle. Check back later next week, for hopefully an update on feeding.

Ally's surgeon was in today to see her, and gave her an upper GI test. This test, tracks barium through the intestine checking for any holes, and most importantly the amount of time it takes Ally to pass the barium.

The Good News: It took Ally about 4hrs. to pass the barium. The bowel is now able to move food along faster, meaning the STEP procedure was a success.

The Bad News: Ally does have a small fistula (hole) in her bowel. The surgeon said that she will not be able to feed Ally until the hole is closed. The procedure to close the hole, hopefully won't be to big of a deal. Look for an update on this later in the week.

After the STEP Procedure

Ally's 87th day in the hospital started very well with Ally pleasantly awake, cooing and smiling at mommy and daddy. We took this as a good sign that she would now be on her way to better days. Shortly after our early morning visit with Ally we sent her off to surgery. This was of course not an easy task and each surgery has become more heart wrenching for all of us.

Surgery was slightly delayed and didn't get under way until about 10am. Somewhere around 3pm Ally's surgeon, the wonderful Dr. Katz, came to let us know how things had gone. She seemed pleased with the outcomes of the surgery and said overall she thought things went a little better than she had expected. Ally did have some issues with blood loss and received some blood during the procedure and after.

At the end of Ally's 2nd surgery she had approximately 56cm of small bowel. At the beginning of today's surgery her bowel measured approximately 69cm. Meaning Ally had 13cm of growth over the last 8 weeks. After surgery today her bowel approximately measured 81cm. Showing that the procedure not only narrowed her bowel but also lengthened it another 12cm. Finally, Dr. Katz was able to completely close Ally's abdomen and no stoma was necessary.

We are extremely grateful for everyday we get to spend with Ally and are especially grateful that she made it through yet another surgery with no major complications. Thank you to everyone for their prayers and please continue to pray for Ally's bowel to function normally. Also, we want to thank all the staff at Bryn Mawr that have cared for Ally and will continue to help her on her way to health.

After 82 days, and 2 surgeries, Ally is about to have her 3rd surgery on May 3rd. The surgery would be the first ever performed by Dupont Hospital. The STEP procedure (Serial transverse enteroplasty) was first introduced back in 2002 on a baby boy with similar issues as Ally. That surgery was successful.

Ally's current issue, is that her bowel has become dilated. When this happens the bowel loses its ability to perform peristalsis, the contractions that move food through the digestive tract. The STEP Procedure will make the bowel smaller in diameter, and at the same time lengthens the bowel (which Ally needs, since her last surgery they had to remove some of her bowel due to blockage). Doctors expect at least a 7 day recovery period, before they would try to feed Ally via a feeding tube.

If not for such a strong and supportive family, and a wife who I love and could not get through all this without, these days would be longer and more difficult to deal with.

Jill and I both have great parents. They have spent every evening of all 12 weeks, rocking, comforting and giving all the love grandparents can give to help Ally through the night. They have done so much for us, that I'm not sure how we can ever pay them back.

Also, let me not forget our friends. Your prayers, thoughts and support are very much appreciated by Jill, Ashley, Ally and I. It helps to know that you are not going alone at this and you are there if we need you. So, Jill and I consider you part of our family. —Thank You.