Ally Heintz

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I realize once again it ...

I realize once again it has been awhile since I have updated you all on Ally but for once there was a method to my madness. Of course my method backfired so I figured I would just go ahead and update even though it won't quite be the update I had hoped to write.

First off I will start off with the good news, Ally got her trach out last Wednesday and has been doing wonderful without it. She was able to talk fairly loud with the trach but without her voice is even louder and much more clear. She is also so proud that it was taken out, she walks around lifting up her chin so that everyone can see!

Onto the other news. Today Ally's picc line was supposed to be pulled and transplant had planned to officially discharge us to home! Well apparently Ally was not quite ready to say goodbye to Pittsburgh so last night she spiked a temp. Blood cultures and labs were done today and we will find out those results tomorrow.

The really bad news is that we saw cardiology today and they said that if cultures grow they will try one more course of antibiotics but if the fever returns and cultures turn positive again than we will have to talk about surgery to remove the suspected endocarditis lesion.

Now some more bad news. Thanks to all of Ally's IV antibiotics (I am not really complaining about them because there has been no way for them to be avoided) she has some moderate hearing loss in both ears. The audiologist that we saw today recommended that Ally be fitted for hearing aids. Great! I am so glad we could add one more thing to her list of problems!

Can you tell it was a frustrating day? Though tomorrow is likely to be even worse if the docs make me bring Ally in to be admitted for positive cultures!

Since it is already 1 am I better just get to bed and focus on positive thoughts:)

Jill

comments

Ellen K / Friday, June 27 2008 03:20 AM

Jill and Shane: we will pray that Ally's fever abates and that you can come home!

heatherjay / Tuesday, June 24 2008 11:19 PM

hey jill....just letting you know that all of us girls at dr. greens miss you so much, we think about you all the time, and we know there is a huge happy light at the end of the tunnel...:)

♥ALYSSA♥ / Tuesday, June 24 2008 06:14 PM

YOUR AWESOME MOM

alyssa / Tuesday, June 24 2008 06:11 PM

ally is sucha great kid igo to bible school and see she does so great and today when she was saying bye to everyone was so great also i am a leader in asley's group u might of saw me outside with my sister my sister loves as well i do 2!ashley does well in bible school she is with katie alot i hear there cousin that is so cool!!!katie became one of my best buds in a day all she had to da was asl to sit on my lap!!!!!!!

Noelle / Monday, June 23 2008 03:44 PM

Sorry to hear the update was with some sadness. However, there is a light at the end of the tunnel and Ally seems to be taking the progress happily!! Wish you luck for the upcoming test results.

Agapegirl-Sandy / Monday, June 23 2008 02:31 AM

I am praying for Ally and your entire family, I will pray that her hearing if any is lost at all, will return 100%. God Bless you, you have an amazing family and your are such a great mom. God Loves You.

steph / Sunday, June 22 2008 02:16 PM

Jill, so sorry to hear the list of bad news. But I was so excited to hear ally enjoyed having the trach out and was showing it off. I will pray for neg cultures esp so you can avoid that surgery. You guys are all amazing. You will get through this...not that I need to tell you that. We cant wait to have you home. Hang in there. You are getting closer.

Diane / Sunday, June 22 2008 12:43 AM

Jill & Shane, Hang in there! Ally is strong and will get over this last hurdle so she can finally come home. She (and you) get stronger each day. We'll keep praying for you.

uni-brower / Saturday, June 21 2008 04:31 AM

We are all praying for negative cultures. You all have come so far and we are here to help. xtra prayers for all.

Heidingers / Friday, June 20 2008 11:39 PM

Jill, You are a strong woman and Ally is blessed to have you as her mother. One day at a time, and we in Pittsburgh are always here for your family. Our candles are lit for Ally.

Carol Yeager / Friday, June 20 2008 10:15 PM

Our thoughts and prayers go out to all of you and we hope that soon there will be a brighter side to look at and feel good about things for Ally.You must allways remember that the GOOD LORD above is allways watching over you and he will see you all through this.KEEP THE FAITH.

The Davidheiser's / Friday, June 20 2008 06:13 PM

Jill, we will be praying for Ally to make it thru this latest problem. It was so great to have her in Sunday School, talking up a storm, on Father's Day. She is a special little girl. It was nice to see the girls together, and playing with their cousins. Hopefully, you'll be coming home soon.

Sandra DiCesare / Friday, June 20 2008 12:56 PM

Jill, You all will get through this, you are a strong family!!! We are praying for negative cultures. We miss you all so much. Always thinking of you....

The Bollingers / Friday, June 20 2008 12:38 PM

Stay positive Jill. Ally is a strong little girl and this is just one more "little" hurdle she needs to jump. Our thoughts and prayers are with you.

Jodee Reid / Friday, June 20 2008 12:00 PM

Hang in there Jill -you have come so far!!!! Praying for a negative culture!

phil h / Friday, June 20 2008 11:39 AM

glad to hear the good news, but hopefully the bad news will turn into good news. We will continue to pray for Ally in 2nd grade Sunday School at St. John's

Sonyia Brake / Friday, June 20 2008 09:52 AM

I will update you in our prayer intentions at St. Matthew's Church in Wilmington. This all must be frustrating to you but the Lord is by your side. God bless your whole family.

I think it has been ...

I think it has been almost two weeks since I have updated so I will try to keep it as brief as possible. This was not one of those times where no news has meant good news, it just meant that I had a computer that was not working!

We did make it home for Memorial Day weekend and had a great time visiting with family and friends. I know the girls enjoyed their time at home a lot, especially all the time they got to spend with their cousins:) Unfortunately Ally and I had our trip cut short when she spiked a fever on Memorial Day. Once I got her fever down and felt comfortable with how she was acting we hightailed it back to Pittsburgh. I was worried that she would start to act septic again and I did not want her to have to be admitted at home and then transported out to Pittsburgh (just to much of a hassle and probably would mean more time in the hospital).

Thankfully all went great on our trip back and Ally did not have another fever. Unfortunately once transplant got wind of the fever they made me take her in to be admitted, blood cultures were drawn and in less then 24 hours we had a positive culture. I of course was not surprised by any of this because I was already having problems with the one port of her central line prior to even heading home for Memorial Day weekend. So last Thursday her line was pulled and a picc was placed. The picc needs to make it through this round of IV antibiotics and then an echo will be repeated to check on the endocarditis. If cardiology is okay with how things look then the picc will be pulled and Ally will be without a line for the first time in her life!!! This also means she needs to keep up with her drinking so that she does not become dehydrated but I will bribe her with almost anything to keep that line out of her:)

Next up is a million appointments this month to try and wrap things up so that we can head home to stay. This week we are trying to schedule a last minute bronchoscopy. If all looks good then next week when she has her sleep study they will downsize her trach and cap her off for the night. Then if all goes well that night the next day they will pull the trach out and observe her for another 24 hours and Ally will be decannulated for the second time!

I think this week we have 4 more appointments scheduled plus hopefully the bronch so it will be busy. Ashley has been home since last Friday so I am missing her terribly but when I talk to her on the phone she sounds so happy to be at home. Ally and I will be headed home for the weekend. What did I used to do with all my free time???

Take care,
Jill

comments

Kim / Wednesday, June 11 2008 09:17 PM

Ally, I am praying things are going better for you this week. AND that your tests turn out good enough for you to be removed from some of your lines/tubes etc. I'm sure you are ready for that! Keep up the great work and remember I'm here praying for nothing but the best of days for you. Love, Kim/Angel_Wings

steph / Monday, June 9 2008 07:46 PM

Hey guys I am glad the HOME word is in the vocabulary. I will keep you in our prayers that all of the tests go well this month and that ally can lose some tubes and things. It makes a huge difference..take it from me! We you get home, I cant wait to get together and get to know your girls better. Ashleys grad pics were soo cute. She is so tall. Looks like she made lots of good friends. Take care.

Johanna / Thursday, June 5 2008 03:01 PM

How wonderful for all of you! I wish Ally and all of you all the best, and hope things go well!

D.Stinnard / Wednesday, June 4 2008 12:50 AM

Sounds like good news hope everything works out this week and you can come home for good. Glad you had a nice weekend. Stay positive and things will work out. Always in our prayers.

Gelsina / Tuesday, June 3 2008 10:21 PM

Ally, you made my day today with the little hug you gave to me! I'm sad that I couldn't join you for lunch because just those few minutes visiting at our office wasn't enough time with you. I hope I can see you and your Mom again before you wrap things up in Pgh. I won't forget your beautiful, smiling face, your precious personality and your very pretty pink toes :)

Carol Yeager / Tuesday, June 3 2008 03:56 PM

I wa thinking about you and was hoping to hear from you soon and here you are.MMM isnt that amazing how people communicate through thinking of them?Oh well I am so glad to hear that things are coming along and I pray that they will continue going down the right path.Please tell your girls that I hope the best for them and to keep on being good girls for their mommy also.Oh and as a mother I do know that there just isnt enough hours in a day to accomplish all the things that we would like to accomplish.I will allways be looking for your emails and I will allways pray for all of you.

deedew06@yahoo.com / Tuesday, June 3 2008 01:26 PM

ALLY and JILL, Hurry Home! Can't wait to see you! As always our prayers are with you daily, hope this week is uneventfull

jodee reid / Tuesday, June 3 2008 12:57 PM

I can not believe the H word is on the horizon!!!! What a journey. Ally looked great when we poked our heads in the other day. Hope every thing goes smoothly this week and maybe we'll bump into you in the hall way of childrens.

Audrey Eddinger / Tuesday, June 3 2008 12:46 PM

Glad to hear the good news, hope all goes well and you can home for good. You are always in our thoughts and prayers. Take Care.

Sandy Maicher / Tuesday, June 3 2008 11:04 AM

Thanks for the update....I know how crazy things can be. We think about you everyday. It was nice catching up with your mom yesterday. Hugs to all of you.

Pastor & Kathy Pearson / Tuesday, June 3 2008 10:49 AM

We give thanks for the steps forward, even though they come with a step backward. We pray for continued healing for Ally and patience for all her family. How wonderful to read the phrase "for the first time in her life." May God continue to bless you all.

The Bollingers / Tuesday, June 3 2008 10:35 AM

Wow...It amazes me how you do it and seem to stay calm. Glad to hear that Ally is doing better, our thoughts and prayers are with all of you.

Sheila Little / Tuesday, June 3 2008 10:16 AM

I'm so glad to hear you had a nice weekend at home. Good luck this month; hopefully we'll see you in July!!!!

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