Ally Heintz » July 2004 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Fri, Jul 30, 2004 10:00 AM
Well, not sure where to begin. Yesterday was a tough day for all of us, including the doctors and nurses. We found out that Ally is developing another fistula from her bowel surgery which has been the cause of her high fevers.

At this point, I'm not sure how not to feel a sense of defeat.

I guess these next few days, we will develop a plan on what the next steps are. Some of the ways we are going to combat this fistula are using meds, and putting Ally to NG suction. Both these tactics will hopfully help keep fluid away from the fistula promoting healing and closure. We are also going to cycle her TPN off for 12hrs. then back on 12hrs. giving her liver time off from being exposed to the TPN fluid.

Ally also is still on 30% oxygen, and needs a lot of suctioning to help clear her lungs. She continues to fight and stay strong just as she has in the past.

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Tue, Jul 27, 2004 4:30 PM
Ally is having a much better day today. Yesterday when we arrived back at the hospital, after spending the night, we found Ally in the middle of a seizure. This was more than likely just due to her high fever, which again was around 103 degrees. A brain ultrasound was done and everything looked okay.

We still aren't sure why Ally is running a fever, all her cultures have been negative. Ally's respiratory state has been stable today and in general she seems comfortable. Ally also had an abdominal ultasound to make sure there was no leakage where her bowel was cut. This would be something that would cause a fever, but again everything looked okay.

We are hopeful that Ally has gotten over the hump and that each day will be a little easier for her. Thanks everyone for all your support.

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Mon, Jul 26, 2004 12:30 PM
Ally has had a difficult weekend and the recovery road is not going as smoothly as we had hoped it would. For the majority of Friday and Saturday Ally had been doing pretty well. But, yesterday Ally needed a nurse by her bedside the whole day.

Most of her complications seem to be respiratory related and she started a fever yesterday. A blood culture was sent to the lab to help us determine the cause of the fever. Her surgeon was in and is optomistic that it is not an infection in the bowel, but we can't be clear on that until the culture is back.

Late last night and early this morning Ally was extubated from the ventilator because she was not breathing well enough on it. Ally was then reintubated with a larger tube that seems to be helping her breathe a little easier.

It has been a very long weekend and we have spent the majority of it by Ally's bedside, including staying with her overnight. We have shipped Ashley off to the beach with her grandparents for a couple of days. This way we can focus on Ally for now. Thank you all for the wonderful words of encouragement that you have given us. Keep Ally in your prayers!

We will try to update again soon.

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Fri, Jul 23, 2004 4:00 PM
Ally made out well with her surgery, however, it did take a little longer than expected and therefore they were not able to place a gastrostomy tube. The tube placement was a secondary procedure to the primary procedure of removing the fistula.

Once they were able to get to the fistula it was just a matter of removing that section of bowel. However, it did take approxiamtely an hour and a half to get into the abdomen to remove the fistula. They were not able to see the stomach from the incision line and therefore, chose not to extend the suture line to access the stomach for a g-tube.

We were a little disappointed that the g-tube was not placed, but in the grand scheme of things that is a very minor thing. All in all things went well. Ally did not require any additional blood or fluid during surgery and that shows us that she should probably be able to recover easier.

Thank you all for thinking of us and especially for praying for Ally. We will update again soon. Now start praying for a speedy recovery.

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Fri, Jul 16, 2004 8:14 PM
Hope you all are enjoying the new site with lots of pictures! Ally has a lot of news since our last e-mail update.

The fistula feeding tube was not working out and the tube had actually fallen out twice this past week. After numerous attempts we realize this method of feeding and treating the fistula will not work.

This leads us with really only one option, which is to send Ally back to the OR for more surgery. Her next surgery is scheduled for Fri.7-23. During the surgery Ally will have approx. 3cm of bowel removed, where the fistula is present. She will also have a gastrostomy tube placed, which is a feeding tube inserted directly into the stomach.

Removing the fistula is the main reason for the surgery, but we feel the g-tube will help a great deal with Ally's feedings after her surgery. Plus it means no more nasal tubes!!!

This surgery should not be as extensive of a procedure as her last surgery. Hopefully, that will mean a shorter recovery time. We will probably not be updating the site again until after surgery. We will let you know how Ally is doing after surgery and in the meantime don't forget to sign the guest book and send Ally a message. She loves getting e-mails!

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Tue, Jul 6, 2004 8:49 PM

This past week was a good week for Ally. On Monday we spoke with Ally's surgeon,Dr. Katz, at length about what Ally's options were as far as feedings went. After speaking with her she informed us that it was imperative for Ally to begin feeding again as soon as possible, mostly to prevent any further damage to her liver caused by the IV fluids. So we came up with a plan and on Tuesday Ally went to radiology and had a catheter put in to her bowel through the fistula. This is basically like a feeding tube in the stomach would be, but it goes directly to her bowel.

Ally has been tolerating her feeds fairly well this week and has been having her feeds increased daily. Once they had the fistula tube established they also began feeding her through her NG tube again. Currently she is up to about 13cc/hour total between the NG and fistula tubes. The major downfall to Ally being fed through her fistula is that it commits us to another surgery because the fistula will never close with the tube in it. Dr. Katz's plan is to get Ally up to half of her calorie intake through her NG and fistula tubes. Once she is tolerating the feeds at that level, she may be able to come home. Then we would get to have her at home for a couple of months and then she would go to DuPont for a surgery to remove the fistula and a small section of her bowel.

Ally going to DuPont will make it more difficult for us travel wise but it will be good for Ally to be in a pediatric ICU as opposed to a NICU. This is all still probably a long ways off, but the thought of Ally coming home for some of this time gives us something very positive to look forward to.

Otherwise it was a stable week and we of course celebrated the 4th at the hospital. Big sis Ashley even came to visit and the girls wore matching patriotic outfits. Ally is going to radiology again tomorrow to have the current catheter in the fistula removed and a larger one placed. This is due to the fact that Ally is still having a considerable amount of drainage out of the fistula around the tube. To keep the drainage under control she wears an ostomy bag which prevents her skin from being irritated. Hopefully a larger catheter can minimize the drainage out of the fistula. Just to let you know this procedure is in no way painful for Ally, in fact I think she enjoys going to radiology because they keep it so cold there and Ally is a hot tamale Last week she spent the majority of the time smiling and talking to the radiologists, it's like a field trip for her!

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