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

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Tue, Aug 31, 2004 9:20 PM
Today was a good day. Ally was awake for longer periods of time on and off today. The latest blood culture is negative (yeah!!!) Therefore, Ally is supposed to go to the OR tomorrow around ten o'clock.

The plan is to start with a bronchoscopy, which allows the doctors to thoroughly check Ally's airway and lungs. The ENT doctor already told us that he will more than likely choose to do a tracheotomy with what he expects to find during the bronchoscopy.

After all that is complete another doctor will be placing a new central line. Even though Ally's latest culture was negative, she has now had two infections in this line, and it also has been in place since the day after she was born. That is a very long time for a central line to stay in place. Thanks to the nurses at Bryn Mawr, since they are the reason the line lasted so long!!!

We will update tomorrow afternoon. Ally is scheduled to be in the OR for about 3hours.

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Mon, Aug 30, 2004 9:30 PM
Ally had a pretty good day today, but she unfortunately was not able to make it to the OR. She was scheduled to go around 11:30 and shortly before that time a blood culture that was pending came back positive for a staph infection. The infection is in her central line. Another antibiotic was started to try to clear up the infection. A repeat blood culture was done today and if that is still positive tomorrow the surgeons will probably want to pull her line and place a new central line.

Once again everything with the trach is on hold until this infection is cleared. The doctors are hoping to go to the OR late this week, but we will see. Ally was not showing any clinical signs of the infection, which is good. She was awake a couple of times today and she loves her big fish balloon, thanks Aunt Jeanne!

We will update as soon as we have some news.

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Sun, Aug 29, 2004 11:00 PM
Hi everyone, Mommy and Daddy said that I should send the message this time, so here goes. I've been feeling much better the past couple of days the medicine is helping, but the prayers are what really make me better.

The word around this place is that I'm probably going to the OR tomorrow. I'll be an add on to the schedule so it will probably be tomorrow afternoon. I won't be feeling that well so my mommy will send an update tomorrow evening.

I'm getting to know some of my new nurses and I have about a thousand doctors. The doctors were nice enough to let me wake up a little. Since Friday afternoon I've been opening my eyes and trying to move a little. I got rid of all that extra fluid that I had, thanks to my favorite medication, Lasix. Now I'm back to my normal trim size!

Thank you to all my visitors this weekend. It was nice for some of my Bryn Mawr family to come and visit. For a little while it felt like I was back at my old place. Take care everyone and thanks for everything you are doing for my family. Look for mommy's update tomorrow night.

Love, Ally

P.S. A special thank you to Andrea and her family
and friend. Those special Padre Pio prayers
will help me tomorrow when I'm in the OR!!!

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Thu, Aug 26, 2004 10:30 PM
Ally had a much better day today. Yesterday I would have to classify as one of her worst days yet, we were taking it hour by hour. The doctors seem to have her ventilating better today and overall her vital signs have been more stable. It will be at least a week until she is healthy enough to go to surgery for the trach. She is currently being treated for a bacterial pneumonia. She had a couple of blood transfusions and numerous meds to help keep her stable. Please pray,pray,pray, yesterday was very scary for us and thankfully she was better today. We will keep everyone posted. We miss everyone at Bryn Mawr.

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Tue, Aug 24, 2004 4:26 PM
No tracheotomy today, possibly later this week. The doctors are having difficulties ventilating Ally and would like her to be a little more stable with respiratory when going into the OR.

We will keep you all posted. If we do not update in the next 24hrs. that means no changes and no surgery.

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Tue, Aug 24, 2004 10:00 AM
Ally did not have any procedures done yesterday. Mainly because of a lack of OR time, but also because she had spiked a temp on Sunday a.m. She is supposed to go to the OR today around noon. We will update later today .

We are currently staying, at least for the next couple of days, at the Ronald McDonald House. If you would like to get in touch with us you can call us here at 302-656-4847 ext.207 or room 207. You can leave a message on our phone.

Thanks for the prayers!

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Mon, Aug 23, 2004 9:30 AM
Ally is now all moved in to her very own room at the PICU at DuPont Hospital. Nurse Karen from Bryn Mawr surprised us early with a welcoming visit. It meant so much to Jill and I to see her there. Karen once again, saved our day, by looking over us and making sure all the staff at DuPont came familar with Ally's case and answered any questions they might have.

Allys tracheostomy surgery is schedule for sometime this afternoon. I will update how things went later tonight.

Anyone who would like to visit Ally, please feel free to stop by. We are allowed 2 people by the bedside, and no children under age of 12.

We especially, look forward to the days when more of our Bryn Mawr family can stop by to say hello, and give Ally a kiss :)

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Sat, Aug 21, 2004 12:00 PM
I don't even know were to begin with Ally's most recent developments. Yesterday we were informed by the ENT specialist that it would be in Ally's best interest to be transported to DuPont. This will be happening Sunday morning. The reason for the transport is because Monday afternoon Ally will have a tracheostomy.

A tracheostomy is a surgical procedure where the trachea is brought up to the skin and a breathing tube is placed directly into the trachea through the neck. This is not a permanent procedure, but we were told it could be in place up to about 18 months. This will help to prevent gagging and vomitting caused by the ET tube.

This has all developed very quickly and has not only been a shock to us, but also to the staff here at Bryn Mawr. We are very sad to leave Bryn Mawr not only because Ally has received such fantastic care here, but because the staff has become our second family.

We will never forget all the people that have touched our lives in the past six and a half months. Especially the nursing staff which has played with, held, and cared for Ally like she was their own child. The staff has given us hope and kept us sane during this most difficult time in our lives. They have laughed and cried with us and most importantly have always helped us do what is best for Ally. Thank You.

To everyone else, we will now be taking you all up on your offers to help us!! The next couple of days will be a big transition and very busy, but we will keep you informed. Keep praying and Ally will eventually be a healthy little girl!

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Fri, Aug 20, 2004 12:45 PM
This week has not been the best, but then it could have been worse. Ally has been doing okay with feedings and is up to 6cc/hour. She is spitting up quite a bit, however she is still intubated so some times the tube gags her and causes her to spit up.

Once again Ally's major issues this week have been respiratory. The doctors tried to extubate Ally on Wednesday, but she was not able to oxygenate well enough off the ventilator and on CPAP. Therefore, they had to reintubate her about 45minutes later.

An ENT specialist form DuPont will be seeing Ally later today to determine if there has been some kind of damage to her airway that is preventing her from breathing on her own. After the consult hopefully they can determine when they might try her off the ventilator again.

Ally tried to be helpful early this morning by extubating herself The doctors tried to leave her off the ventilator, but she did not succeed. After giving her some sedation medication they reintubated her. Now she is resting peacefully and I will probably spend the day watching her sleep!

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Mon, Aug 16, 2004 3:00 PM
The weekend went well and Ally even started to be fed. The feedings were just started last night and ran continuously through the night. The plan right now is just to feed her at night when she is sleeping and seems to digest easier. She was started at 2cc/hour, which is about a half a teaspoon.

As far as respiratory goes, Ally is stable and still on the ventilator. We are hoping to get her off the vent around mid-week. She has been having a couple of doses of Lasix a day and that seems to be helping her respiratory status.

Jeanne, we just heard the good news can't wait to see you next week! Karen we hope your feeling okay and we will see you soon too.

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Fri, Aug 13, 2004 3:35 PM
Ally has had a very nice and stable week. She is still on the ventilator, hopefully coming off over the weekend and back on the nasal CPAP. For the majority of the week Ally was happy and alert and kept to a good schedule of being awake and sleeping at night.

The other plan for Ally is to possibly start feeds this weekend. This of course will depend on her respiratory status. Today I got to hold her for the first time since Saturday, so that was a nice treat for she and I. We will update sometime over the weekend!

Nurse Karen, Ally told me to tell you to feel better, we are all concerned about you. We hope to see you next week.

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Mon, Aug 9, 2004 11:00 PM
As usual the last couple of days have been up and down. Ally had good days on Friday and Saturday and then ran in to some problems on Sunday. Thankfully nothing as serious as her episode on Thursday.

Unfortunately, Ally began to have breathing difficulties on Sunday morning. They tried to keep her on her nasal canula and place her under a cool mist hood. Ally decided she didn't like that and became rather spastic. Once we finally had her calmed down she was placed back on CPAP.

Ally's respiratory state grew worse as the day progressed and in general she looked awful. I decided it was best to spend the night at the hospital again. Around 2am Ally's nurse woke me to inform me that Ally had to be put back on the ventilator.

Obviously, being reintubated is extremely uncomfortable, but I could see Ally relax as soon as she was back on the ventilator and breathing comfortably. She even opened her eyes and smiled to let me know she felt better.

Ally's surgeons are pleased with her GI status and may plan to feed her closer to the end of the week if she is stable with respiratory. The upper GI and barium enema were cancelled due to Ally's respiratory status. The surgeons also feel that since Ally is stable with her GI issues, she may no longer need these tests.

We will update again soon. Nurse Karen if you are reading this we hope you feel better and we hope Ally isn't the one who made you sick!

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Thu, Aug 5, 2004 11:30 PM
Well I guess we can add today to the list of bad days. Ally gave everyone a big scare today, but by the end of the afternoon she was back to her happy self!

Around 8:30 this morning Ally was sleeping when an alarm on her monitor started to ring off. Luckily, Ally's nurse was sitting by her crib and she was rather surprised when she turned around and saw Ally's heart rate had taken a drastic dip.

She immediately went to try to stimulate Ally by shaking her a little, but when she did not respond she had to begin CPR. Ally came around after only about a minute, but it was enough time to scare everyone. She spent the rest of the day having numerous tests and lab work, but so far we haven't found the reason for this episode.

The cardiologist thought it best to discontinue the one medication Ally was on because in an extremely small percentage of people it can cause heart arythmias. She also had her abdominal ultrasound completed today and everything looked okay there.

So once again Ally is the medical mystery that we are beginning to think she likes to be! A big bright spot to the day was that we got to hold Ally today for the first time in two weeks. She of course enjoyed every minute of this and we can't wait to hold her again.

This wasn't the kind of day we had hoped for, but we are so grateful that Ally was okay at the end of the day. We now are even more in debited to her angel, nurse Karen. Thank you

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Wed, Aug 4, 2004 6:00 PM
Today was a good day, Ally finally came off the ventilator. She currently is on nasal CPAP, which is pressurized oxygen administered through prongs in her nose. Obviously this isn't the most comfortable thing for her, but she is tolerating it pretty well and it definitely beats the ventilator!

As far ar her GI situation goes we are still on a wait and see basis. Since last Thursday she has had no unusual drainge from the drain or the wound area. This of course is great news, but does not explain the unusual drainage she had.

On Friday Ally will be having a repeat ultrasound of her abdomen. The doctors will compare this to the one from last Thursday. Basically they are looking to see if there is a collection of fluid anywhere in her abdominal cavity.

Then on Monday they are planning to do an upper GI or a barium enema. If they see no leakage or no fistula they will start feeding her. If they see leakage or a fistula they will need to decide if it needs to be addressed imedaitely with surgery or if we can wait until Ally is healthier.

For now Ally will be staying here at Bryn Mawr, which we are very happy about. Her surgeon and the developmental specialist thought it best for her to stay put for now. They are planning to move Ally to a semi private room located here in the NICU.

Sorry this update came so late, last week was extremely difficult and we just felt wiped out. This week has been better and any day that is a good day is a day we treasure!

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