Ally Heintz » January 2008 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Wed, Jan 30, 2008 10:20 PM
She is awake! Ally's paralytic was turned off this afternoon and an hour later she was awake in full Ally fashion. Immediately her right hand went for the A-line in her left hand. Then we moved onto trying to sit up. Next it was asking for water over and over again. After an hour of watching her struggle and just get more agitated her nurse was begging for some extra sedation (ketamine seems to be the drug of choice today). After another half hour of fighting the sedation Ally tuckered herself out and she fell back to sleep.

Also today the docs weaned the vent a little more down to a peep of 6. Her oxygen was increased back to 60% but hopefully once we get her sedation under control the oxygen can be weaned back. Her feeds were increased to 30cc/hour and her stoma output has been down the last two days. The biopsies taken Monday looked good and the docs will continue to run her prograf level a little lower.

So that about sums up the day. I am off to bed to gear up for a busy day tomorrow. Now that Ally is awake there will be no rest for the weary (not that there was ever any rest anyhow). Don't get me wrong though I am more than happy to see Ally awake and to see all the fight that she has in her. Afterall it is that determination that has gotten us through the last four years. Of course I can't believe Ally will actually be 4yrs old in another week! Although the newly sprouted gray hairs on my head definitely prove that it has indeed been four years:(

Jill

Comments:
Leon Everetts IV: I am praying for your little girl and you.
You have to be the strongest woman I ever read about.

Polly from Angel_Wings: Earnestly praying for you today, sweet Ally.

uni-brower: So happy to hear those 2 words-SHE'S AWAKE-we are still praying-love to all-keep on fighting

CarolYeager: I pray for the girls and your family each and every night and for you to just keep the strength that you have and also to have GOD by your side every step of the way.Keep strong and dont ever give up.

brenda: go ally go, glad she is getting better and awake she doesn't want to miss her birthday! god bless all of you and keep the faith jill.

Christina Hopkins: PRAISE THE LORD FOR THIS!!!!!!!!!! I am so glad that Ally is doing better. I've had everyone on my message board praying for her! I am so glad that I can post a joyous post about Ally! Take care and continued prayers for everyone!
Love & God Bless,
The Hopkins Family
and everyone @
Christ Haven Message Board!

D.Stinnard: She has moxie and energy and fight to keep you both strong. Go Ally Prayers for all the family. God bless

CONNIEJO/ANGEL_WINGS: SUCH A BLESSING!!!STILL HERE PRAYING FOR MORE MIRACLES FOR PRECIOUS ALLY~~HEAVEN AND MY LITTLE ANGEL SKYLAR~JADE ARE STIL LISTENING~~YOU WILL FOREVER BE IN MY HEART AND PRAYERS~~LOVE AND BLESSINGS~~CONNIEJO mommyto SKYLAR~JADE (DIPG)

The Davidheiser's: Keep fighting Ally! You are unbelievable! We are praying every day.

Sandra DiCesare: We are so happy, Ally is doing alittle better, Just take it one day at a time. Give kisses to those sweet girls. Love you all.....

MJ/Angel_Wings: Praise God for your progress. I am holding you close to my heart and forever in my prayers. Hugs special little girl.

Andrea Steffe: I am so glad to hear Ally is feeling better. What an amazing gift of strength and healing she has been given! My prayers are always with all of you.

The Bollingers: You are such a fighter Ally! Keep up the great work. Our thoughts and prayers are with you.

Michelle Z/Angel_Wings: So glad to hear that Ally is awake & doing better. Continuing to pray for your sweetie. May you also feel God's amazing love & grace giving you strength & encouragement.

phil h: glad to hear that Ally's awake and doing better

Sandy: I am so glad to hear that Ally is doing better. We think about all of you everyday. Our prayers continue to be with you all.

Pastor & Kathy Pearson: We rejoice at each bit of good news and we continue our prayers for Ally and for you. May God continue to grant healing for Ally and strength for Jill, Shane and Ashley. Pastor & Kathy

Tracy/Angel_Wings: Praise God! We're praying.

Etta/Angel_Wings: Praising HIS name. Thank you Lord. Keeping you in prayer....

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Tue, Jan 29, 2008 8:44 AM
Okay I know I updated this website yesterday but somehow it got deleted. So I am sorry if you read yesterdays update because some of todays update will be a repeat.

Ally has definitely been doing better the last few days. Her blood gases have been pretty good and the docs have been able to wean her vent a little each day. She is now down to a Peep of 9 (which was as high as 14) her peak pressures are 32 (last week they were 40) and her rate is down to 20 from 24. Also yesterday they were able to get her oxygen down below 60% for the first time in the last two weeks. Sorry if none of this makes sense but I know all the nurses that keep up to date with Ally's site will be happy to know exactly what is going on.

Ally is still being kept paralyzed. Yesterday the docs considered turing off her paralytic but thankfully reconsidered and decided to keep it on board until she makes it down to a peep of 8. I think this is a wise decision on their part. In theory Ally should require less sedation if she is not paralyzed. However Ally usually ends up requiring more sedation because she ten so fiesty. As of now we kind of have Ally's sedation under control. She is on a versed, precedex, and morphine drip. Plus she has chlorolhydrate and methadone scheduled around the clock.

Another scope and a biopsy were done yesterday and the scope looked good. I thought the biopsy was a rapid but it wasn't so we should have those results sometime today. I don't suspect it will show anything but like I said before it is better to be safe than sorry. Ally's stoma output has decreased some and is not as watery. Her feeds have been increased to 25cc/hour and she continues to receive some TPN to make up for the calories and nutrition that she is missing through enteral feeds.

Overall the last few days have been an improvement. Ally's lungs continue to look better on x-ray and I am hoping she has turned the corner. Time will tell.

Jill

Comments:
Carol Yeager: With everything you are going through I do feel as though you are forgiven for getting sidetracked or confused.Think nothing of it all is forgiven. Allways your friend Xigned Carol

Pastor & Kathy Pearson: We give thanks to God for Ally's progress. We always appreciate your updates. It's hard for us to be so far away. Our prayers continue. Pastor and Kathy

Tracy/Angel_Wings: Praise God for the progress! We'll continue praying for your complete healing sweetie!

The Bollingers: Keep fighting Ally...Our thoughts and prayers are with you.

Carol Brothers: Continuing to keep Ally in my heart and prayers everyday
Carol/Angel_Wings

Sheila Duffy: Jill:
They should give you an honorary nurse's degree! Prayers every night for Ally !

Sheila

Mark Snyder: Hey Guys,
Although I don't write often, please know that you all are in my prayers and the prayers of our small group. Ally is remarkable!
May the Lord continue to strengthen and encourage you,
Mark

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Fri, Jan 25, 2008 9:35 PM
The last two days have continued to be difficult days for Ally. Yesterday she had an episode in the morning where she dropped her oxygen sats and was unable to recover for quite some time. The docs ended up bagging her for about a half hour to try and keep her sats out of the 70's. After that some changes were made to the vent and at this point she is pretty much on as high of settings as the vent (and her lungs) can handle.

I was definitely thinking she would end up on the oscillator yesterday but, things seem to have calmed down a little. Today the docs were able to wean the vent the slightest bit which hopefully will by us the time we need to keep her off of the oscillator. (For those of you who don't know what an oscillator is it is another mechanical ventilator but it works a little differently and it is what the docs go to when they can no longer ventilate a patient on a conventional ventilator). Considering the settings that she is on her blood gases have been relatively okay.

The most frustrating part is that we really don't know why she seems to be acting sicker. Her chest x-rays have been unchanged this week but still look remarkably better than they did last week. Ally's white count was really elevated on Tuesday so blood cultures and trach cultures were ordered. The blood cultures were negative and the trach cultures grew some minimal bugs, all of which Ally has grown in the past and at this point would probably just be considered her normal bacterial flora. Due to the high white count two IV antibiotics were started and then after yesterdays episode two more were added along with an IV antifungal med. Thankfully today transplant and infectious disease took a closer look at Ally's meds and decided that this amount of IV antibiotics was a little bit extreme. Especially when you consider the fact that the only thing that we know we should be treating is the flu which of course is viral. They have scaled back the meds to just two IV antibiotics, one IV antifungal and have decided to keep her on the Tamiflu for now.

Today Ally also had yet another scope and biopsy done. Her output has still been high and although, I am beginning to think Dr. Kyle keeps ordering these biopsies so that he can just make me worry more, I am glad he airs on the side of caution. Her scope looked good and I am sure the biopsy will too. The only other problem today has been Ally's sedation. She continues to be kept paralyzed and she has an arsenal of sedation meds but unfortunately seems to be more awake today. Mostly we can tell this by her heartrate and the fact that her pupils have been very large. The nurses have been pushing for an additional narcotic drip and although I hate to see her start yet another drip I know she needs it be adequately sedated. (At this point she has a drip for Cisatricurium, Versed, and Precedex. Plus she also gets Chlorolhydrate every four hours, PRN Morphine almost every hour, and intermittent doses of Ketamine.) I am trying to just focus on what she needs now and not think about the nightmare it will be to get her off of all of these meds.

So like I said before I think it is just going to take Ally a long time to rebound from the flu. Yesterday Ally's doc told me to "POOF! make her better." If only it were that simple. Of course, I think I would have worked my magic a little sooner, probably like 5 months ago. Better yet I would have waved my magic wand over my belly while I was pregnant and fixed it right from the start. Which leads me to think, where would I be had Ally and all of these problems not come into my life. The fact is it doesn't matter because this is my life now. What is important is how I teach my girls (and maybe all you people reading this site) to take whatever life gives you and make the best out of everyday.

Jill

Comments:
uni-brower: We all continue to Pray for you all--keep your strength -Love to all

The Bollingers: Sorry to hear that Ally is having such a rough time fighting this flu. Keep staying strong Ally. Our thoughts and prayers are with you.

brenda and rod: dear jill, as i read your last update my heart goes out to you and the challenges god has given you to face everyday i have watched you grow from a little girl into an amazing young woman and a wonderful mom keep the faith and we keep praying for ally to beat the flu and fight to get stronger and healthier as she looks forward to her 4th birthday coming up real soon. please take care.

D.Stinnard: God's strength and grace be with you in this time of need.

Chip Conrad: Just wanted to let you know that I spoke at a Boyertown Chamber of Commerce dinner this past Wednesday on behalf of Corvettes for Kids. Your last paragraph in this entry proves what I said about CFK parents. I specifically used you and Shane, as the parents of Ally, our 2007 spokes child as an example. Hope you don't mind. Working with Corvettes for Kids over the past 20 plus years has shown me that God has given each of these kids extraordinary parents. We don't choose life's path, but you have shown that you have taken the path given to you and become an inspiration to everyone with whom you've come in contact. We are continuing to pray for Ally's recovery. May God bless you all as you stay by her side on the road to better health. Remember you are always in our thoughts and prayers.

Lisa: Jill you are one amazing Mom..I look at my life and think

Katie/Angel_Wings: Jill, you're an awesome mom. I'm praying that Ally perks up soon, and for all of you I pray that God gives you what you need when you need it.

The Davidheiser's: Jill, you are an unbelievable woman. Everyone should have the strength and hope that you have. You are an inspiration! We pray every day for Ally and your family, and hope that little Ally will get stronger and keep fighting.

Sheila Duffy: Jill:
You are an inspiration and have certainly taught me a lot about making the best of everyday just in this short time. We continue to pray for Ally and for strength for the whole family.

Cris: Hang in there Jill, Shane and Ashley. We don't know how you do it, but are just so amazed that you DO do it, day in and day out. You are the best inspiration for everyone in the universe. Be well, we wish you love and peace and less, so much less pain and suffering....and Jill, get some sleep!

Tracy/Angel_Wings: Praying for you precious one. I'm so sorry you are having such a tough time. I pray the Lord will protect you and work in a mighty way, healing your body. You are loved and prayed for...

Sandy: Our thoughts and prayers are with you all and the doctors. I hope that the doctors can find out what is making Ally so sick and get her on the road to recovery.

June: We continue to send our prayers and those of our church for you. What a wonderful message in your last sentence Jill! We can all learn from you.

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Wed, Jan 23, 2008 9:04 PM
Well so much for the start of better days for Ally. Today Ally was a little too fiesty for her own good. She ended up battling the vent so much that she collapsed her left lung and was not able to keep up her oxygen sats. Needless to say she is now paralyzed again and is back on even higher vent settings than what she was on last week.

On the positive side her scope and biopsies from yesterday looked good. Her output is still up but we are guessing this is just from her being sick. Her feeds have been holding at 15cc/hour so the docs did restart her on some TPN for now. Also on the good side her liver numbers have all returned to normal leverls.

I think it is just going to take Ally a while to bounce back from the flu. The ICU docs have already said that they will probably need to wean her vent settings even slower so that she does not have another setback (did I mention how thankful I am that Ally still has her trach). Since we are familiar with the waiting game I guess it really does not matter how long it takes to get Ally better just as long as she gets better.

Please continue to keep Ally in your prayers and Ashley could also use some prayers too. Right now Ashley has a cold and I think she is probably a little run down from all the craziness in our lives. I also know that she is sad that Ally is back in the PICU and that she does not have her to play with.

Jill

Comments:
Sandra Kerr: Sweet Beautiful Ally and Ashley remain in my prayers as the entire family does. May the Lord keep you sung in His tender arms letting you know His yoke is easy when you feel you cannot handle much more rest in His care. Keep up the good faith, oh how I admire your faith and love, you are in my thoughts and prayers daily. With much love in Christ's name. Sandy

Carolyn Wing/Angel_Wings: I am praying for you Ally. I hope that Ashley feels better. Hugs and prayers.

Johanna: Probably only a seasoned veteran would say they are thankful for a trach! The School of Life does change perspectives! I hope also that Ally will get better regardless of the timeframe and that Ashley will feel better too. Jill and Shane, I pray for strength, faith and peace for all of you.

uni-brower: Go Ally keep on fighting and Ashley get better soon-Pretty soon you both can PLAY again

D.Stinnard: Hey Ally keep up the fight but take some time to rest and feel better from the flu. Hey Ashley hope you feel better soon so you can visit Ally. It's hard having her away but she'll be home soon and bugging all the more to play. Let's hope it's soon. Always in our prayers. Keep up the courage and faith that everything will go okay.

winky bergdoll: Shared the latest with the Ladies Bible Study this morning. Our prayers are with Ally, Ashley, Mommy and Daddy. May God bless you all!

Carol Yeager: Please just keep on praying also and so will we ,I think of your family each and every day . I also think of how you can just keep on going through all this and still have your sanity,I do commend you for all of that.Remember that you are stronger than you think and with GOD right by your side you will get through this.KEEP ON BELIEVING AND YOU WILL RECEIVE. aLLWAYS REMEMBER THE GOOD lord HELPS THOSE WHO HELP THEMSELVES.

The Bollingers: Keep fighting Ally...We all want you back home...you are in our thoughts and prayes

Carol M: Ally, Ashley, Jill and Shane- you are in my prayers and the prayers of all those who surrond your life. Never stop, never stop fighting through this...you go, Ally! SHow them your colors! You have a long life ahead of you!

phil h: We will continue to pray for her in 2nd gr. Sunday School

MJ/Angel_Wings: Morning Sweet Ally I pray you had a restful night and that your lung is recovering. I am lifting you up for all your needs precious little girl. I am praying for Ashley also and hope she feels better quickly, I am sure she does miss you so much. Hugs

Pastor & Kathy Pearson: Father in heaven, uplift us when we grow discouraged. Strengthen Ally each day with your healing power and be with Ashley who misses her sister. Give calm and courage to Jill and Shane and all their family. We pray it in the name of Jesus. Amen.

Karen Owens: Go Ally Go! Keep fighting hard -- well not to hard. Take it easy girlfriend!

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Mon, Jan 21, 2008 9:24 PM
Hopefully yesterday and today were the start of some better days for Ally. Yesterday the ICU docs decided to reduce Ally's vent settings and turn off her paralyzing meds. Of course this meant Ally was trying to sit up in her bed a half hour later and trying to rip out her newest attachments. The docs then spent the better part of the day trying to increase Ally's sedation so that she was not fighting against the vent.

Today Ally was awake for a little bit and most of that time she spent rather mad. First she wanted water, then she wanted her arterial line out, then she didn't want her pillow, then she did, then she wanted to sit up, no not up that high! Next it was the pulse ox probe, this toe, no that toe, then we moved onto socks and what color we wanted and let's not forget the blanket, on-off-on, no not that blanket!!! Needless to say I was praying Ally would just stay asleep. Didn't I just say last week that it is always nice to see the fight that Ally has in her, maybe I should not have said always:)

Jill

Comments:
MJ/Angel_Wings: Morning Sweet Ally I pray you had a good night and that today will be a good one also. Please know that you are surrounded with love and prayers. Hugs

LEA....: Now Jill, you always know that we used to say that Ally was her best when she was fiesty... or at least thats what her aides from dupont think...I love when my Ally-Baba fights me because that means she's feeling better... Miss U all... Kiss her me...

uni-brower: this sounds like OUR ALLY-fighting all the way-xtra prayers for all-love to all

D.Stinnard: You said always and you got it. She's a fighter and that's a good sign. I agree with Tracy,you must be exhausted. The prayers are coming your direction for strength, and for the families strength and acourse for Ally. But she seems more in need of prayers for sleep.

Carol Yeager: I am hoping and praying every day that the day will come that you give us all the news that Ally is going home and that will be the las of the hospital for he.
God knows she has been there way to long and now it is time to be home with her family.Give her hugs and lots of kisses and tell her we are all just waiting to hear that she is home for good
and soon'

Sheila Little: Wow, sounds like Josh most days :) I'm glad to hear you're feeling better, Ally!!!! Hopefully tomorrow will be an easier day for you, Jill!

Sandra Kerr/AgapeLove: Praise God for small steps and little toes--no not that toe! Thnks you for little smiles too! What a beautiful angel and how precious and special you are as a family to share all of this you totally amaze and touch me to my core, my heart is so moved and I cannot even find the proper word for you wonderful precious people, Oh how I love, totally AGAPE LOVE all of you. Praying for you daily and loving you all the more. Thank you for all you have done for me and my Jesus continue to hold you in his arms and the angels contiue to minister to your sweet Ally and your precious Ashley, I have brought you into my heart. Thank you God Bless you and be with you. In Christ's Love Always Sandy

Carolyn Wing/Angel_Wings: Ali: I am praying for you. I am smiling from the demands, I hear them from Laura. Hugs and prayers. Laura's grandma Stage IV neuroblastoma carepage LauraVDB

Cris: No matter what, you still find a way to make us smile! Thanks Jill and Ally! You have made our day!

MJ/Angel_Wings: Precious Ally I can see that you are really a strong little fighter. I am thinking about you and holding you close in prayers. Hugs

Sheila Duffy: Wow she sounds like a typical soon to be 4 year old! :) You can never sedate her spirit!

The Davidheiser's: Keep up the fight, Ally. We are praying for your strength every day. We pray for Mommy's strength too!

The Bollingers: What a fighter you are Ally! Keep it up so you can get out of the hospital and go home. Our thoughts and prayers are with you.

Tracy/Angel_Wings: You must be exhausted mom. God bless you and know that we are praying for Ally's healing.

Lynne: That little girl's strength never ceases to amaze me! It's obviously coming from all the prayers she is receiving! May the prayers - and her strength - continue coming!!

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Sat, Jan 19, 2008 5:33 PM
Not too much going on here. Ally has been about the same since the last update. Today her chest x-ray did finally look better but we have still not been able to wean her vent at all. Therefore since her settings have remained high the docs have continued to keep her paryalyzed and sedated. Her stoma output has leveled off a little and her feeds have been restarted.

So for now things continue to be a waiting game. We'll update when we have something new to report.

Jill

Comments:
Sandy Kerr/AgapeLove: Sweet Baby Ally and Jill and Shane and Ashley, I have been praying for all of you. You are not alone in the fire right now, Jesus is with you and the angels are too, I will continue to pray for healing and may God continue to hold you snug in his loving arms. God Bless you, I love you and think of you often. Blessings.

Michelle / Angel_Wings: Praying for your healing, sweet Ally. I hope you had a restful night's sleep & that today is a good day for you.

MJ/Angel_Wings: Good Morning Sweet Ally I am praying your lungs are improving and lifting you up for all your needs. Hugs precious little girl, as always you are in my thoughts and prayers

Teri and Grace: Jill and fam, we're still praying, and won't stop! God is there with you, even in the status quo moments. His plan goes on. You're on our minds and in our hearts. Give Ashley a big hug from Grace.

Bud West/Angel_Wings: Precious little one I pray that God be with you and bless your family you being prayed for by a lot of Angels.
Bud?Angel_Wings

D.Stinnard: Keep up your strengh, and we'll keep up the prayers for the family. God Bless

Robin - Angel_Wings: Hey Little Girlie Girl! Praying today is a much better day for you and your family! Keeping you all in my thoughts and prayers! Sending GREAT BIG Angel hugs, smiles and rainbows!

The Bollingers: Keep fighting Ally, our thoughts and prayers are with you.

Carol Brothers: Keeing little Ally close to my heart and in my prayers daily.

Carol/Angel_Wings

Oscar S.: We continue to pray. Special prayers at Saturday Night @ 6 last night.

phil h: We will pray for her in 2nd grade S.S. today

Tracy/Angel_Wings: Praying for your healing today and I do pray that things begin to turn around today for you sweetie. God bless you!

Kathy and Pastor Pearson: Grant us patience, O God, as we wait and watch. Keep little Ally under your protection. Grant healing to Ally and strength to Jill and Shane and Ashley. We pray this always in Jesus name. Amen.

MJ/Angel_Wings: Sweet Ally I pray you had a restful, healing night. Please know that you are surrounded with love nd prayers. Hugs precious little girl

Roxann Nyce: I was notified by friend about Ally condition some time ago, and have been checking in on her daily, God bless Ally & your family . I am praying for your entire family at all times.

Landis family: We are praying daily for Ally's health to improve. God bless your family!

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Thu, Jan 17, 2008 7:15 PM
Kind of a status quo day for Ally, which is definitely fine with me. No changes to her vent settings and her oxygen is holding steady at 60%. She has required some extra doses of meds to help keep her sedated but overall I think she is comfortable. Infectious disease decided to stop all of her antibiotics and just treat her for the flu with Tamiflu. Her upper biopsies looked good but her lower biopsies showed some activity. This means Ally's steroids will be restarted and her prograf level will need to be run a little higher than what her docs would have liked it to be. This may make it a little more difficult to fight the flu but we also don't want to run the risk of her having severe rejection. Like I said it is all a balancing act.

Keep the prayers coming.
Jill

Comments:
MJ/Angel_Wings: Morning Sweet Ally I pray you had a restful healing night. I am thinking about you precious one and as always you are in my prayers.

Robin - Angel_Wings: Hello Heintz family - Just checking in on you and praying that you feel better Ally! Keeping you all in my thoughts and prayers and sending GREAT BIG Angel hugs, smiles and rainbows!

Carol Yeager: LOTS OF PRAYERS COMING YOUR WAY,now and allways and sure hope they give you the strength you need to get well Just keep on being thr strong little fighter that you have been all along and God will help you and give you the strength you need to get through this

Carol Brothers: Keepig you in my heart and prayers everyday..stay strong sweetie

Carol/Angel_wings

Rachel Frey: Ally- You are in my thoughts constantly, keep fighting and stay strong.

jodee reid: HI Jill
Think of you all everyday and hope Ally pulls through this like she has with everything else. Seems she was not quite ready to get off the rollercoaster ride!

Kirsten Yarnall: We will continue to pray for healing for Ally and peace for you and Shane. Our hearts go out to you. May God show his presence to you in every small step towards Allys healing. God Bless.

Traci / Angel_Wings: Precious Ally - I am praying that you fight that nasty flu and begin to feel better. God Bless You!
XOXO
Traci / Angel_Wings

Pastor & Kathy Pearson: Heavenly Father, watch over Ally and her family and grant them healing. Be with the doctors, nurses and staff who care for Ally and grant them wisdom and skill. And be with all those who watch and pray for Ally. In Jesus name. Amen.

MJ/Angel_Wings: Morning Ally and family I am praying you had a restful healing night. I am lifting you up in prayer for all your needs. Please know you are surrounded with love and prayers. Hugs

The Bollingers: Our thoughts and prayers are with you.

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Wed, Jan 16, 2008 3:42 PM
I started to update this site last night but decided to stop since it felt like I had no good news to report. Today I still don't have too much good news but we at least have a diagnosis for what is going on with Ally. Yesterday Ally had a bronch and some samples were taken and sent for viral and bacterial testing. We just found out she has Influenza A. Of course it is not like I am ecstatic about this but it is at least nice to have something definitive to treat.

Right now Ally's lungs are in bad shape. She is on fairly high settings on the vent and is still on a ton of oxygen. She was also having problems maintaining her sats whenever she was awake and sitting up or talking. The ICU docs thought it would be best if she was paralyzed so that the vent could do all the work and that she was not able to fight against the vent. Having her paralyzed would also make it easier to place some additional central lines, an arterial line, and for her to have an endoscopy and ileoscopy.

The scope and biopsies that were done on Monday looked good. Today's scopes also looked good and we will have the biopsy results tomorrow. The transplant docs will need to keep Ally's immunosuppression as low as possible so that she is able to fight off the flu. However, lowering the immunosuppression puts Ally at a higher risk of rejection. The next few days or so will be a delicate balance of meds. She will also be put on Tamiflu which is one of the few meds to help fight the flu.

You would all be happy to know that Ally was awake for a little this morning prior to the increase in her sedation meds. She is just as fiesty as ever and she knew exactly what she wanted and did not want. At one point her nurse wanted to take off Ally's shirt to place a hospital gown on her. Ally had already received a few boluses of sedation plus was placed on a continuous infusion of a paralyzing med. Needless to say we were convinced she was out for good but, once we tried to take off her shirt Ally flicked open her eyes, grabbed her shirt and told us to GO!

Ally could really use all the prayers you can say for her. At this point Ally's lungs are really sick. Getting over the flu is a huge fight for someone as immunosuppressed as Ally but Lord knows she has enough fight in her.

Jill

Comments:
D.Stinnard: Jill, Shane, Ashley keep up the fight. If Ally is as feisty as you say she'll do fine. We'll be praying for the Ally and the family. God Bless

Carl, Lois, Anne Wenzel: May God hold you all in loving arms, lift your hope, and help Ally find strength while God gives her the way to become well again. Prayers from your friends at St. John's, also in Kutztown. Lovingly, Pastor Carl, Lois, and Anne

Carol Yeager: God Bless Ally and I hope that she continues to be fisty and just as determined as she can be to fight this off. We here in Douglassville are all praying for her to get even better and if it is at all possible alot more fisty and determined to get well.PRAYERS BE WITH HER AT ALL TIMES.

The Bohn Family: Dear Jill,Shane,
Ally and your family are in our thoughts and prayers.

Nan Moyer: My thoughts and prayewrs are with you

sheila duffy: Lots of prayers coming your way. We know Ally is a fighter and will pray for healing for her lungs.

Sheila

Aunt Jeanne: God bless and keep you sweetie! You are always in my thoughts and prayers...Keep up the fight. Mommy is right. It is good to know you have enough spunk to fight a little bit.
Hugs and kisses...
Love Aunt Jeanne

Carol Brothers: I am storming heavens gates with prayers for you Ally...I pray the infections are all gone and you are back to healing completely

Love and prayers,
Carol/Angel_Wings

Trish/Angel_Wings: Sweet Ally we are surrounding you in very special
prayers.
Trish/Angel_Wings

Pastor & Kathy Pearson: O Lord, our Lord, how excellent is your name in all the earth. Send your healing power to Ally to fight the influenza. Give her the will to continue to fight. Give strength to Jill and Shane. O Lord, our Lord, how excellent is your name in all the earth. Amen.

The Bollingers: Keep fighting Ally...our thoughts and prayers are with you.

MJ/Angel_Wings: Ally I am storming the Heavens with my prayers for you. Please know that you are being surrounded with love and prayers precious little girl. Hugs

Cris & Mark: Ally, be well. You are in our prayers. God bless.

Deena: As always you are continuously in my thoughts and prayers!

Sandy Maicher: Oh Ally....I wish I could make it all better for you. We will say extra prayers tonight for you that God will help to heal your lungs and get you over the influeneza. We love you sweetheart and think about you every day. Maybe your momma could give you a great big hug from us.

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Mon, Jan 14, 2008 10:00 AM
Just a quick update to say that Ally's breathing is much worse today and that shortly she will be headed down to the ICU. Her chest x-ray looks significantly worse and the doctors will be treating her for pneumonia. She will also be getting a bronch to get some better secretion samples from her lungs. At this point her left lung is completely whited out on the film. She is on 100% oxygen and is barely keeping her sats above 90%. She will be placed back on the ventilator and hopefully the positive pressure from the vent will help to open up her lungs.

Please say a lot of prayers for Ally. I am also still not convinced that something is not going on in her belly given the fact that it is enormous. So if there is something going on it would be really nice to figure out what it is.

I'll update later.
Jill

Comments:
The Hoffmans: You are all in our prayers. Mothers as we know are instinctive, press the belly issue Jill. We hope that Ally is better soon.

Margaret Ann: My thoughts and prayers are with you and Ally.

sarita Staines: I put the updated info on our Church prayer chain. One of the women in our Church is fighting cancer and along with the cancer she has had two bouts of c-dif. She wrote back this info. I know that you have several experts but couldn't not pass this onAlly's sister recently had C-dif,
didn't she? Now, just curious, because one new
treatment of C-dif is the addition of Saccharomyces
Boulardii to the antibiotic meds.

S. Boulardii can sometimes cause infections, even in
people not taking it, if they are in a weakened
condition and get exposed to it some other way--on
someone's hands, for example.

So if you could send this on to whomever (was it
Sherrie?) is updating us, they could find out if
Ally's sister was treated with S. Boulardii. Not all
doctors use it, and maybe not on kids, I don't know.
So this could be a moot point.

But since I thought of it, I decided I should mention
it, anyway, just in case it was of help.

D.Stinnard: Hope you get good news. Hope everything comes out well. Prayers and more prayers.

Carol Yeager: I am so so sorry to hear the sad news and I will keep praying for your family,especially for Ally. My prayers will continue andin hopes that they will be answered by our LORD above.He is our protecter in all we do and I do hope with all my heart and soul that he will do his great work for Alley so she gets well and back on the road to recovery. Thoughts and prayers be with your family allways

The Bollingers: Our thoughts and prayers continue to be with you. Keep fighting Ally...need to stay strong. Hopefully soon they will figure out what is going on in your little body!

BS@CFK: OFT TIMES MOTHERS CAN READ SIGNS CONCERNING THEIR KIDS FASTER THAN DOCTORS=== STICK TO YOUR BELIEFS AND GET MORE TESTS DONE=== THE DOCTORS MAY HAVE MISSED SOMETHING YOU SUSSPECT==I'LL PUT ALLY ON MORE PRAYER LISTS==PRAYER DOES CHANGE THINGS

deedew06@Yahoo.com: May GOD keep ALLY in the palm of his hand Give her and her family the strength to rise above this hurdle. Our Prayers are with you EVERYDAY Love, HPHC

Andrea Steffe: I will be praying for all of you.

The Bohn Family: You and your family are in our prayers.

Nan Moyer: My thoughts and prayers are with you.

Pastor & Kathy Pearson: Heavenly Father, we need your powerful healing presence with Ally. Give her the resources to fight the infection and give wisdom to her doctors, nurses and staff to prescribe the right treatments. Grant strength and patience to Jill, Shane and Ashley and all their family. We pray it for Jesus sake. Amen.

Noelle: Sorry to hear Ally took a turn for the worse, but I am sure she will bounce back.Our thoughts are with you and the family to make it through this time of uncertainty.

Diane: We continue to pray for Ally and hope for a quick recovery from pneumonia. Stay strong; keep up your courage and faith. Give Ashley lots of hugs for being such a good, patient sister.

The Davidheiser's: Jill, we will continue our prayers for Ally and your family, here at home, and at Sunday School. We hope the Doctors can find out what is going on and help Ally to feel better. Stay strong!!

phil h: sorry that Ally isn't feeling better. I hope she gets better soon

Sheri Waldman: Sorry to hear that Ally is not feeling well. Hopefully they will figure out what is going on very soon. I will say an extra prayer for Ally and your family this morning. Stay strong.

Oscar S.: We prey that these

Sandy Maicher: Our prayers are with you. I'm so sorry to hear that Ally is having a tough time right now. We will continue to pray for Ally to get better and for you and Shane to remain strong.

MJ/Angel_Wings: Morning Ally and Family I am lifting you up in prayers for all your needs. Please know you are surrounded with love and prayers. Hugs precious little girl

The Dunnings: You are always in our thoughts and prayers! Stay strong. Remember a mothers instinct is usually right. Keep pushing the belly issue with the docs.

Mary & Maggie: Dear Heintz famil, My whole school is praying for you guys. Stay strong All. You have gone through worse.We're all cheering foryou! Love Mary

Dana (from A.I.): Hey Ally. Stay strong, you are in my thoughts and prayers. We are all still missing you back at your old stomping grounds. :) XOXO

winky bergdoll: Trust in the Lord with all your heart and lean not unto your own understanding. Acknowledge Him in all you do and He shall direct your paths!

Robin - Angel_Wings: Keeping you in my thoughts and prayers Little Miss Ally!

Miss Polly says you're in her prayers as well!

Hope you're feeling better soon! Sending GREAT BIG Angel hugs, smiles and rainbows!

Steph: sorry to hear she has pneumonia. I hope they just keep up with everything and you can get her straightened out. This is just ahorrible time of year anyway for sicknesses... Oout our way.. it is nasty.. Hope you can get her home and keep her well. You are inour prayers

Miss Wendy, a friend of Anthon: Please know we are praying for you in our household, as well as for Anthony!

Dayle and Dave: We are all praying for Alley, Ashley and your whole family. Stay strong for Alley.
God Bless you all
Love Dayle and Dave

Johanna: You've got my prayers, as always. I hope things can be figured out very soon and that Ally can improve and do better soon.

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Sun, Jan 13, 2008 10:21 PM
sWell the last few days have not been so great but I am hoping we are starting to see some improvement in Ally. She was at least out of bed today for the first time since Wednesday evening so that has to mean some sort of improvement. As far as finding out what is going on with her we are still at a loss. All cultures that have been done (which are too many to count) are negative. She is on a couple of IV antibiotics, and some antifungals, plus she is on some additional steroids. So even though we are not sure what is going on hopefully we have it covered.

I am trying to think of everything that has gone on in the last few days but there seems to be too much to remember. Ally's fevers are starting to diminish but she has still been needing a fair amount of oxygen. Her belly has been very distended but not tender. She has also had yet another increase in stoma output and is now having blood in her stool. Her liver functions have been elevated again and so the doctors have decided to treat her for rejection even though they really don't think she is having rejection.

Rejection means more steroids, which mean uncontrolled blood sugars, which means endless glucose sticks and insulin shots, which means lots of interrupted sleep for Ally. Ally's blood sugars have ranged from near 500 to 40. But the doctors have discontinued the hydrocortisone steroid and have put her on methyl-prednisone and thankfully this does not seem to affect her blood sugar level as much.

Today Ally had chest and belly x-rays and an chest and abdomen CT scan. All of which showed a lot of nothing and I am never sure if that is a good thing or bad thing. The fear of the unknown is driving me insane and sometimes it is just easier when you know what you are treating. Tomorrow Ally is supposed to have another ileoscopy so maybe that can help tell us something. There is also a new transplant doc on tomorrow so I am sure that will mean some change in treatment. I just love Mondays you never know what to expect when a different doc comes on and like I said earlier it is one of those things that could be good or bad!

Anyhow overall I would say Ally definitely seems better than where she was Thursday and Friday. Please pray that she can continue to improve and that we may find out what we are treating.

Jill

Comments:
Dawn Stinnard: Come on Jill tell us that you went in the bathroom and closed the door and let it loose. Scream as loud and long as needed. What could it hurt except maybe your eardrums but make sure Ashley knows your going to do it so she doesn't get scared. Relieve the stress. If it works fine if not you scared the neighbors. lol Sorry my sense of humor showed. You know your in our prayers. SCREAM !!!!!!!!!!!! AAAAAAAHHHHHHHH!!!!!!!!!!!!

sheila duffy: Our prayers for Ally continue every night - hoping you get some information on what the problem is. If you need anything let us know!

The Bollingers: Our thoughts and prayers are with you! Continue to fight Ally so you can come home soon! God Bless

Pastor & Kathy Pearson: We pray for healing for Ally, O Lord, for widsom for her physicians and patience for her family. In Jesus's name. Amen.

Sandy Maicher: Our prayers continue to be with Ally and all of you. It's very frustrating not knowing what is going on and especially not being able to fix it. Our prayers are with the doctors that they can find out what is going on with Ally so she feels better soon.

phil h: We are continueing to pray for you in second grade sunday school at St. Johns

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Fri, Jan 11, 2008 7:01 AM
I can't even believe that I am writting this but once again Ally has fevers. They started early yesterday morning and have not really stopped since. I think she was only up for about two hours yesterday, shortly after one of her motrin doses had kicked in. She had a fairly restless night but did manage to get some sleep.

We are of course waiting on cultures. So far respiratory and urine are negative. We will have blood and stool results later this morning. In the meantime additional IV antibiotics have been started (she was still on some from the previous infection). Yesterday morning she was acting pretty septic so everyone was a little worried. Her heartrate has still remained high and her blood pressures are definitely low for her but still within a normal range. She is requiring some oxygen but no additional respiratory support.

Please keep Ally in your prayers (as I know most of you already do). Fevers and especially line infections (which is what we all are assuming this is) should be a thing of the past now that Ally has been transplanted. She desperately needs to start drinking more so that we could get rid of this line!

I'll update when we know what is going on.
Jill

Comments:
Carol Yeager: Prayers and thoughts are continueing to be with your family

Dawn Stinnard: Prayers and more prayers coming your way. Hope things get better and the test come back negative.

The Davidheiser's: Jill, Shane, Ashley, and especially, Ally, lots and lots of prayers are with you all. We hope that Ally can beat these infections. Stay Strong!!!

Diane: Yet another bump in the road. I'm praying that Ally will conquer these fevers and continue to get stronger. I hope you and Shane find the strength and patience to see you through another difficult day and I hope that tomorrow will bring better news. Hang in there!

Sandra DiCesare: Thinking of you guys, Sorry Ally is not feeling well.We are hanging tough here at dupont, Anthony is feeling pretty bad today. Hopefully things will get better for Ally and Anthony real soon!!! Miss you All!!!!!!!

mandee: ally baby i've got your family in my prayers. get better missy<3

jodee reid: Oh Jill, thinking of you all. I'm sure this roller coaster ride is getting a little too old for you now. Will keep Ally in my prayers.

Carol Brothers: I am praying that the fever is gone today and that Ally is feeling better

Praying for no infections
Carol/Angel_Wings

Cris: We are sending prayers and best wishes for an uneventful weekend and a miraculous disappearance of fevers, etc. Love to all.

The Bollingers: Sorry to hear about Ally, keep fighting Ally...our thoughts and prayers are with you.

Pastor & Kathy Pearson: Heavenly Father, let your healing power be at work in Ally. Control the infection, help Ally to drink more fluids and be the constant strength for Jill, Shane and Ashley and all of their families. In Jesus name. Amen.

MJ/Angel_Wings: Morning Ally I am praying that this morning finds you feeling better. I will be keeping you in my thoughts and prayers precious little girl.

Melissa Davis: I'm always thinking of you guys. I check in almost daily for updates on Ally. I'm so sorry she's still having problems and I worry. I want so much for her to get well and be able to go home-home. I really miss you guys and miss sharing frustrations with our kids. I love you guys and will be praying extra hard tonight.

Karen Owens: I'm sorry Jill -- that just sucks, no other way to put it. We will be thinking of you all and praying for strength to keep going foward!

Karen Owens

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Wed, Jan 9, 2008 10:25 PM
Ally made out well with her ERCP and her liver numbers were even down some today. Her output has also been back down and hopefully we will be getting out of here by the end of the week.

Thanks for the prayers for Anthony he made out well with his surgery and is in the PICU at our old Hotel duPont.

Hopefully my next update will be to let you all know that Ally is back home (Pittsburgh home).

Jill

Comments:
uni-brower: Great News Still praying

Carol Yeager: I was so happy to hear the good news and I hope that you will continue to keep reporting good news throughout.Prayers are allways with you
Thank you so much for the update
tell the girls to keep up the good work.

D.Stinnard: Hey that's great news for Ally and Anthony hopefully everything goes well for their recoveries.

The Bohn Family: This is great that Ally is doing good and her numbers are down. I'm glad that Anthony is doing well. Our prayers are with you and your family,

Margaret Ann (PICU duPOnt): Glad to hear that the LFTs look better and Ally may get home soon. We are all still keeping up with Ally and her progress. Thank you for keeping us updated. Everyone really cares here and we can't wait to hear you're home..

Oscar S.: We continue to pray for all; an update was given last night during men's weekly meeting at St. John's.

Kathy & Jeff: You dear ones continue to be in our prayers. We're so happy to hear the good news about Ally and Anthony.

Pastor & Kathy Pearson: Thank you, O God, for being with Ally through the ERCP. Continue to provide healing each day. We thank you for watching over Anthony during his surgery at duPont. Grant him new strength each day. In Jesus name. Amen.

The Bollingers: Good News. Our thoughts and prayers continue.

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Tue, Jan 8, 2008 9:24 AM
Well I am definitely starting the year off on a bad note with keeping this site updated. But you know the story, I am just too busy to write. On another bad note, Ally is still in the hospital. It seems it is just one thing after another with this hospitalization.

First off the decanulation is not going to happen right now. ENT has definitely decided to wait a few weeks until everything else has settled down. Second Ally got her new line and everything seems to be good with that. Of course she is still on IV antibiotics so we will see after she is done with those.

So what is keeping us here??? Ally's liver functions have been up for a few weeks now. She first had an ultrasound done about two weeks ago and then she had a liver biopsy, then an MRCP (special MRI that looks at the pancreas and bile ducts) and yesterday she was supposed to have an ERCP but there was a lack of communication (how does that always happen) and anesthesia was not aware of the procedure. So now she is supposed to have the ERCP done today! Needless to say Ally is all screwed up with her days and nights becuase in the last 10 days she has had genenral anesthesia four different times, today will make five!

The liver biopsy did not indicate any rejection but it does indicate that something is going on with her bile ducts. The MRCP showed that the bile ducts look okay but we have been told that the biopsy can actually be more conclusive. So the ERCP is a procedure that uses and endoscope to take a look at the bile duct. Then some contrast dye is used and if needed a stent is placed in the bile duct. This procedure will be done over at UPMC Presbyterian by one of the GI doctors. Then main risk is pancreatitis and there is a chance that Ally may need this done more than once.

I am hoping that once the ERCP is done we will be able to get out of here by the end of the week. Ally's stoma output had been very high at the end of last week and over the weekend but it seems to have calmed down. If that would increase that would be the only thing that I would see keeping us here at this point.

Otherwise Ally has been good. She is definitley getting a workout with all the walking she has been doing. Ashley started back to school yesterday and had gymnastics last night.

I will try to update sometime tomorrow to let everyone know about the ERCP. Please keep our friends the Dicesare family in your prayers. Tomorrow Anthony will have a very involved surgery at duPont. Please pray that the surgery goes well and for strength and patience for Sandra and Tony.

Take care,
Jill

Comments:
Johanna: Probably only a seasoned veteran would say they are thankful for a trach! The School of Life does change our perspectives! I hope also that Ally will get better regardless of the timeframe and that Ashley feels better too- Jill and Shane, I pray for strength, faith and peace for all of you. Johanna

Carol Yeager: I will keep your family in all our prayers and hope all keeps going well

The Bohn Family: Our prayers are with your whole family and prayers that Ally's numbers come down,your family is thought of often during the day.

Heidi Snyder: Our prayers are with you and your family. God is walking beside you every step of the way.

phil h: We will continue to pray for Ally and your family in second grade Sunday School

The Bollingers: Our thoughts and prayers are with you. Hoping Ally will be able to come home soon. I'm sure Ashley misses her sister. Wow, gymnastics...my daughter was a competitive gymnast for 8 years. It's lots of fun.

Steph: Hope all turns out with allys numbers. Mine are still out of whack but after months of the same.. now accepted as norm. I too had/have bile duct issues.. But now they go by symptoms. Hope the out put stays down. It will also go up and down alot until the bowel gets comfortable in there... took mine a good while. Hang in there, thinking of you guys
steph

Sandy Maicher: Our prayers are with all of you. I'm sorry that Ally is having a difficult time right now with her bile ducts....John says to give Ally a hug for him and to tell her that everything is going to be okay.

MJ/Angel_Wings: Morning Ally and family I am praying that the ERCP does get done today and they can find the exact cause of the problem and find the correct treatment needed. I am lifting Ally up in prayer for all her needs. I will be keeping you all in my thoughts and prayers.

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