Ally Heintz

So sorry about the update yesterday. I'm not sure who that ranting lunatic was that wrote the update!! Today has been a better day and our meeting helped releive some of the anxiety we were feeling.

Dr. Katz assured us that things were under control and that she and the GI doctors are the people managing Ally's feedings. Ally is now getting about 7cc/hour of diluted formula. She is still tolerating this well. She will be increased by 1cc every 6hrs. When she reaches about 12cc/hour the will then start to increase the strength of the formula.

The overall plan is to have Ally home in approximately 6weeks. We know this sounds fantastic, but Ally will have to remain stable to meet this goal. That means stable with feeding and respiratoy.

We have decided on a home nursing agency, a home equipment company, and infusion company who will all be treating Ally once she is home. The infusion company will be taking care of all of Ally's pharmacy needs along with managing her IV fluids. Once Ally comes home we will be in close contact with Dr. Katz and the GI doctors to help us manage Ally's feeds. She will also be followed by pulmonologists and they will determine her ventilator settings.

Having Ally home will be a lot of work and will take a lot of adjustment. She does not need to make a lot of progress to come home, but she needs to be making forward progress. So that's what we will pray for, slow steady progress!

I thought I should write a little update even though there has not been much news. Ally was without feeds through the weekend. Yesterday they started her on some pedialyte and she tolerated it well. Later today they will start her on half strength formula at 4cc/hour.

We have a meeting with Dr. Katz tomorrow. We have still been very pleased with her approach to manging Ally's feeds. However, it seems like her instructions are not always being properly carried out. We plan to discuss with her what can be done to eliminate some of these problems. We also plan on asking where Ally needs to be to get out of the hospital in the next month or so.

It was so nice to visit at Bryn Mawr this weekend we miss everyone and send a "hello" to all the people we didn't get to see. Visiting there made it even harder to come to duPont especially since we have not been that happy here lately. Shane and I often doubt our decision of having Ally transferred to duPont. We wonder if her feeds would be going more smoothly if she were still at Bryn Mawr with the people who know her best. We at least know that Dr. Katz's orders would be followed. Sometimes there are too many cooks in the kitchen at duPont. But, what's done is done and now we will make the best of the situation.

I will update again towards the end of the week. I'm sorry I spent this update complaining, but the last week or so has been rough. I think we are getting fed up with being patient and want to do whatever needs to be done to be able to get Ally home, and SOON!!!

Well, not the best day but I guess it could always be worse. Ally had a fever during the night and also was having some difficulties breathing. So, they started antibiotics and had to put Ally back on a regular ventilator.

The fever we think might be from a urinary tract infection. She had a catheter in to measure her unrine output and therefore got an infection. She seemed happy today and her vital signs had been stable. We were a little concerned because her belly appears larger and her feeds had been stopped yesterday.

Hopefully we will get through the weekend with no other set backs. This wasn't a major set back but, we were still a little dissappointed. They will possibly restart feeds this weekend and will be trying a different formula.

Ally is having a pretty good week, but we did have to back off on her feeds a little. She is currently getting about 20cc of formula per hour. She seems to be tolerating and absorbing this amount of formula.

Everything else is about the same. Her 4th tooth has not come in yet, but she is very busy chewing on her fingers. She has been busy with occupational and physical therapy this week. At the present time she is having a hearing test and is a little sedated so the test could be performed accurately. This is giving me some time to call some nursing agencies and check which ones we like best.

We will update around the end of the weekend.

PS: Big sister Ashley is getting her first haircut tonight over at the Ronald McDonald House!

Sorry it has been so long since the last update but, no news means good news. Ally had another good week and is currently getting 26cc of formula per hour. This means she is receiving about half her calories by formula. Ally is also on a home style ventilator and has been doing wonderfully since she went on that about a week ago.

Over the weekend Ally was having problems absorbing her formula which led to a lot of messy diapers and a very sore bottom. However, today she had a normal amount of dirty diapers and her bottom is slowly getting better.

Shane and I are mastering trach care and suctioning. Tomorrow we have another training session and also a family meeting. During the meeting we are hoping to get an idea on a date by which Ally might be able to come home! Today the social worker gave us the names of a couple of home nursing agencies and home healthcare equipment suppliers. So, the next couple of days I will be spending on the phone checking them out.

I promise I will update at the end of the week. Take care thanks for all the well wishes!

Just a quick update. No major changes so far this week. Ally is still doing great! She was a little unhappy last night because she had to get some immunizations, but today she was back to being happy.

She is currently getting 20cc/hour of pregestemil formula. I know she told you in the last update that her formula is very yummy, but I think she was joking because it smells absolutely awful!

Everything else is going good. Shane and I have some more training later today. This morning I got to help the nurse do Ally's trach care and then I got a chance to suction her all by myself. The more I get to help the better I feel because I think Ally prefers having the people she knows the best take care of her.

I will update again soon. Oh by the way Ally just got her 3rd tooth the other day and I think the 4th one is coming soon!

Well, I hope everyone is happy, I behaved myself for a whole week. I didn't take any backward steps they were all forward steps. Mommy and Daddy said to "knock on wood" so I don't jinx myself!

I know you won't believe this but I'm getting 14cc/hour of progestemil formula. Yummy yummy, everyone should try this stuff, talk about good food!!! I'm still on my TPN (IV fluid) diet and the docs have cut me back even more since I'm doing such a good job with my formula.

Dr. Katz, my favorite surgeon, came by to see me twice today. She was very happy with the progress I've made this week. She was especially excited about what I had in my diaper. I'm getting the hang of this pooping and eating thing and I know that makes everyone happy.

Mommy and Daddy are really proud of me, but they understand that the next weeks may not go as well. It's still tough for me to take forward steps, sometimes the backward steps are just easier to take. So, don't be surprised if I don't have some good days and some bad days this week. But, then you never know I can be a good girl when I want to be!

Hope everyone liked the new pictures. I really like the two pictures of Ashley and Rondald Mcdonald. My big sister is so funny! Mommy said it's time for bed, but she or I will talk to you soon! Keep saying your prayers I really do think that's what makes me better.

Fantastic, that is the word I choose to describe the past three days. Ally has been wonderful!!! Today she smiled so much that her plump little cheeks are probably sore. She had her first trach change today and I think that she is happier now because she can move her head so easily.

Currently she is being fed at 6cc/hour. She has not had any major vomitting since Sunday. The plan is to increase her feeds by 2cc every twelve hours. Sometime during the night she will go up to 8cc/hour.

The trach training went well on Monday and we have another session coming up on Tuesday. Today we had a meeting with Ally's primary doctor and nurse. We discussed the process of getting Ally home and some of the care she will need at home. This is an extremely long process which is why we began discussing it now. We still have no idea how long Ally will be here at DuPont.

Tomorrow Ally has appointments with physical occupational and speech therapists. The doctors may also try her on a different ventilator, which is designed for at home use.

Ally has been doing pretty well since the last update. That late night on Thursday must have done her in because she slept the whole day on Friday. Luckily she woke up for us a little on Saturday morning, before we left for the mountains.

Saturdady afternoon they had started feeds, but had to stop around midnight because Ally had vomitted a couple of times. Eventually she'll get that gagging and spitting under control it will just be a slow process, but we know all about going slow! Apparently Dr. Murphy saw her this morning and thought she was ready to try again. So, they restarted the feeds. She spit twice why we were visiting. Hopefully, she'll do well tonight and just sleep.

I almost forgot to say that the upper GI looked fine, which is why the doctors had decided to go ahead with feeding. Shane and I start our training tomorrow, to learn how to care for Ally's trach. I will update again around mid-week, unless there is any major news before that time.

Hi everyone, it's late at night but I'm still awake. My mommy just called to check on me and my nurse tattled and told her I was still up! Mommy said that since I had so much energy I should write the update. I think my updates are funnier than my mommy's updates.

I had a fantastic day today! My day shift nurse, Barbara, took care of me and we are really getting to know each other (she's really nice). I felt very good all day and the docs have even been skimping on my pain meds. My mommy and Ashley came to visit me this morning. I think my big sis is really starting to like me. She even held my hand.

I was awake and napped for long periods of time today, which showed everyone how I am so much more comfortable. When I was awake I was very happy and busy playing, especially with my big fish balloon. I love that balloon! I was able to move so much easier and I must say I look pretty good without that ET tube. I was also busy smiling at the nurses and melting their hearts!

Tomorrow I have to go for an upper GI, which I'm not all that happy about. However, if everything looks good the docs are gonna start to give me some food again.

You won't believe this but, I just heard that my mommy and daddy are actually going to go away for a full 24hrs!!! They are taking my sister to the mountains. I will try my best to behave while they are gone, but you know how I like to keep them on their toes! If anyone was planning to visit, they are leaving Saturday morning and will be back to see me by late Sunday afternoon.

Mommy and Daddy will update again soon. I think they might even bring their camera and get some new pictures of me!

What a good way to start off the month, Ally was finally able to go to the OR today!!! She did very well and came out with a trach and a new central line. It is so nice to see the ET tube gone and all the tape off her face. Her little lips look cuter than ever.

They didn't take her until around 12:30 p.m., but she was already done around 2:30. She required no blood during the procedure and was able to maintain all of her vital signs. After she was back in the PICU she began moving and opening her eyes, so they gave her some more meds to keep her sedated and comfortable.

Today was a big step in helping us to get Ally better and to help get her home. Hopefully, the night will go as well as the day has gone. Talk to everyone soon thanks for the prayers!

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.