Ally Heintz
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< > September 2007
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Sun, Sep 30, 2007 10:43 PM
I wish there was a way for me to describe what a wonderful day today was for me but all I can say is Ally is back!!! She is by no means anywhere close to 100% but she is definitely back. Today we got to see her spunk, determination, and her laid back happy self (I could be that laid back if they gave me all the meds she gets). I think Ashley is even more ecstatic than me and she was even complaining that she had to leave the hospital and couldn't continue to stay and play with Ally.
I also wish I knew how to add pictures to the website because I had the chance to capture the moment. Needless to say you will all have to wait for the weekend when Shane can add the pictures.
On to the details. We had a list of things that we wanted discontinued and Ally's docs happily obliged. Her NG tube was removed so now she has a completely tube free face:) She also had her foley catheter removed. Her vent settings were weaned again and her narcotics were weaned during the night. Her feeds were increased and her stoma output has slowed down which means she has time to absorb her food.
The big news tonight when I talked to her nurse was that Ally is moving to IICU!!! This is great news a huge step in the right direction and a step closer to the floor, a step closer to discharge, a step closer to home (need I say more).
I really wish there was a better way for me to capture today. Seeing Ashley and Ally playing together again after so long left beyond emotional. A week ago I would have said that this roller coaster ride was never going to end but now I am praying we turned the corner and we can finish out the ride smoothly. As i always tell Ashley, "the sooner you get to bed the sooner tomorrow will come". Well I am going to listen to my own advice and go to bed because hopefully tomorrow will be just as wonderful as today.
JillAdd a comment:
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Sat, Sep 29, 2007 10:06 AM
Yesterday was a good day for Ally. She seemed comfortable and rested well throughout the day. When she was awake she was content but still her fiesty disagreeable self. Her vent settings were weaned again and she tolerated that just fine. I really don't think she will be vent dependent long. We also were able to wean her narcotics for the first time in weeks.
Ashley had a great time at the Pirates game. It was one of those magical type of nights (I can't believe I am saying magical and Pirates game in the same breath). Ashley was so happy at the game and I think she felt lucky to have Shane and I all to herself. During the inning breaks Ashley would get up on Shane's shoulders and try to get the camera guys attention. It took until the bottom of the 9th but she finally made it up on the big screen in center field. She was dancing to the "YMCA" and pointing her big red "Go Pirates" foam finger. The fireworks after the game made for a great ending to our evening and on our way out people kept saying to Ashley 'we saw you on the big TV". She was tickled pink.
Shane will add some pictures from the game sometime this week. We think we may have some video from the beach that we haven't added so maybe he will get around to that too.
Take care,
JillComments:Oscar S.: GREAT news for all. Pictures were great. Sister Millicent shared the good news at the Saturday at 6 service last night. We keep praying for youThe Bollingers: Glad to hear that Ashley, Shane and yourself had such a good time at the game. A well deserved break. Keep up the good work Ally. Our prayers are with you.Steph Dean: I'm glad you guys had a great time on Friday night. I heard the fireworks from my room and thought of you guys! It was awesome to see Ally even though every question I asked her she said no to. She's a cute little stinker just like Ashley! Hope to see you guys soon!phil h: I will share the good news with Ally to my Sunday school class this morning, and we will continue to pray for Ally and your family
Pastor & Kathy: What a joy to read your good news--for Ally and for Ashley. Our former organist, JT Ellenberger is a Pirates fan and would be delighted that you had a magical night at the ballpark. Our prayers continue.Dawn Stinnard: Ally looked content sleeping after the trac. Way to go Ashley it's always nice to see yourself on the big screen. It sounds like a lot of people gave Ashley that boost of confidence she needed at the game. Sounds like everyone had fun and a well deserved break. Keep up the spirit and the good feelings. Bless the family and know we are all praying for you.
Sister Millicent: What wonderful good news for all of you on this Ally's two month anniversery of transplant. Know our prayers continue for all of you.
winky bergdoll: Good for all of you! I was happy to hear the good news for Ally. The light at the end of the tunnel is about to be seen.
Way to go, Ashley! Sorry I missed you on the big screen though.Add a comment:
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Thu, Sep 27, 2007 11:11 PM
Today I took a huge sigh of relief! Around 4:00 Ally was wisked off to the OR for her tracheotomoy and returned around 5:15 with a beautiful tape and tube free face (I am not counting the NG tube that she still has). I would have never thought I would be so excited to see a trache again but I really feel that trache is going to be the turning point for Ally.
The ENT docs started with a bronchoscopy to look at Ally's airway. It is true what they say a picture can speak a thousand words. The scope pictures clearly showed while Ally was struggling with extubation. About half of Ally's airway is blocked with granulation tissue that has formed around the endotracheal tube (breathing tube). With the narrowing of her airway it was just too difficult for her to get the amount of air that she needed. The trache will allow us to bypass that inflammed area and allow it the time it will need to heal on it's own. Also her vocal cords looked great so I am sure it won't be long till we hear her precious voice.
Ally did great with the procedure and did not need to have her vent settings increased at all. I am really hoping that since this looks like an airway issue she may not be dependent on the vent too much longer. She will have her first trache change sometime next week and then we will begin our training (again).
Thank you to everyone for the extra prayers for Ally and our family. We are hoping for a calm and dare I say relaxing weekend! Tomorrow night we are headed to a Pirates game complete with fireworks, so Ashley should have fun. Not to mention it will be nice for her to have Shane and I all to herself. Ashley has been dragging a little bit this week. I feel like she was a little lost in the craziness of things. Her allergies have really been bad this week so that certainly is not helping things. Hopefully she will get the chance to catch up with her rest over the weekend.
Take care,
JillComments:Dana (from A.I.): I am so glad to hear that things went well! Keep up the strength!Bingener family: Ally looks great in the pictures. She looks so restful while sleeping and has great color in her cheeks. Your whole family continues to be in our prayers for strength during this tough time and for health for Ally.Sandy: It's nice to see the pictures of Ally. She looks much more comfortable. Our prayers are with you all and Happy Birthday to Ashley.D.Stinnard: Hey that great news hopefully it's the point that the family needs to go forward. We'll keep praying for the family. Enjoy the Pirates game and have a good time.
Carol Yeager: Hurray for you and your family Things are beginning to look up and I pray that they continue to do so from here on in.Please keep up the good thoughts and keep on praying
The GOOD LORD will allways look down on you and help you to get through these hard times
Our prayers are with you allways.The Davidheiser's: Hooray for Ally! It is great to hear that things are going better. Hope you all have a fun weekend together. Our prayers are still coming your way!winky bergdoll: Wonderful news and wonderful picture. Please tell Shane and Ashley we pray for them also. My husband walked by one day as I looked at the dancing girl video of Ashley. He stopped and watched with me. It brought a big smile to his face. He loved it, she is such a joy.Alissa and Kevin: I'm glad to hear things went well. Keeping you all in our prayers.Kirsten: We are keeping all of you in our prayers. It is great to hear you being as positive as you are. I have no idea how you guys do it all. You are an inspiration to all of us as parents and whenever you are tired and weak and sick of it all-just look up. God is still there with all of you. Give Ally a big kiss from all of the Yarnalls. We hope to hear even better news in the days and weeks to come. Take care.phil h: Glad to hear the good news, and we will continue to pray for you in 2nd gr S.S.
Enjoy the ball game
The Bollingers: Great news. Glad to hear everything went well with the trach. Enjoy your time with Ashley and Shane at the ballgame. Our prayers continue.MJ/Angel_Wings: Thank you so much for this wondeful update. Will continue to hold Ally close to my heart and alwys in my prayers. Have fun with Ashley at the ballgame.Pastor & Kathy: We are delighted to hear this good update. We rejoice with you and continue our prayers. Enjoy the ballgame.Add a comment:
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Wed, Sep 26, 2007 11:06 PM
Sometimes you have to take a few steps back to be able to move forward. Ally has apparently been mastering this process for the past three years and is about to take yet another backward step in the hopes that we can finally start to move forward. Late tonight ENT stopped by Ally's bed and I signed consent for a tracheotomy. Ally will probably be headed to the OR sometime tomorrow or Friday (more than likely it will be Friday).
Over the last few days Ally has not made any progress in weaning from the vent and has even had her vent settings increased. Today her x-ray showed that the right lung's upper lobe was collapsed. Her agitation and frustration has her exhausted and the consensus seems to be that at this point she is at a higher risk of infection continuing with the breathing tube than what she would be with a trache. ENT also agreed and when they were by the bedside tonight Ally was once again trying to self extubate and was thrashing her head around. ENT said she is probably doing more damage to her airway with the ET tube than what will be caused by the trache. He also said that since she did so well with the previous trache this should be just as simple.
Of course all of this is not what we wanted but I feel very strongly that this will be best for Ally. Shane seems to be having a hard time with this and I think that is mostly because he feels like we are taking a huge step back. In some ways it does feel like that but it also makes me feel like we could finally start to make some progress and begin to work on what we need to do to get Ally out of the ICU. I can not think of the long term effects of another trache (nursing care, equipment, sleepless nights, of course who says I get sleep now!) But I can think of the positive effects, Ally will not need to be dependent on narcotics and sedation, she will be able to sit up in bed and turn her head. We would also finally be able to hold her and comfort her and maybe get to hear her precious little voice. When you look at the positive, wouldn't it be worth it?
JillComments:Barbara: Jill and Shane
I know this seems a hard thing to do but like you said it will be for the best. I am still planning to come in Oct. I'll try to call Shane tomorrow. Try to think positive...i know it's hard,but at least this is a known..you've been through it before. Ally's a fighter and she'll get through this too. Lots of love and prayers are coming your way. Miss you all.
Love
BarbaraKelly J, 3CSouth: Jill, you and your family are in my thoughts everyday. This may seem like a huge set back right now, but the benefits of Ally being more alert are well worth it. Keep fighting, and stay strong!Carolyn Wing/Angel_Wings: I am praying for you.Dana (from A.I.): Hey Ally, I just read the update your mommy put on your page and I want you to know that you, and your family, are in my thoughts and prayers (especially the next couple days!!) I hope everything goes well and stay strong!!Cindy Bohn: Our prayers are with dear Ally and her family and her doctors,Jill I think of you often you and Shane are strong keep the faith.Noelle: Sorry to hear about the trache, but the best part is being able to hold her. I can see why she would be agitated without comfort, other than companionship that you are already giving her... I look forward to hearing that she has taken a huge step forward...she always seems to bounce back.. Jill, I'll bet you cannot wait to hold her again!!! Huge hugs from home!!Gelsina: Jill, whenever you are doing what is absolutely best for Ally you can never be wrong - always know and believe that. I have onlyTrish/Angel_Wings: Sending up very special prayers for precious Ally and your family..
Trish/Angel_WingsLori: Praying for sweet Ally that this will be the step to her recovery! I will be in prayer for her and her family!
Lori/Angel_WingsThe Bollingers: Never feel as if you are taking steps backwards. You are doing what you feel is right for Ally to heal and move forward. Our thoughts are prayers are with you all.Sandy Maicher: We are praying for you. Stay strong. I can hear the frustration in your posting. Remember 18 months ago the struggles we went through with John. You need to do what you have to do to keep Ally comfortable. So you take a few steps backwards, but the outcome could create a giant step forward. We are hear for you.MJ/Angel_Wings: Praying for you sweet little girl. Know that you are in my heart and forever in my prayersAdd a comment:
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Wed, Sep 26, 2007 9:10 AM
Yeah! Ally's biopsies looked good and for the first time since her transplant Ally's steroids have been decreased. She will not have another scope done until next week.
Unfortunately Ally did not have the greatest day and by evening she and I were both falling apart. For some reason she was extremely agitated yesterday whenever she was awake. Numerous times she was pulling on her vent tubing and her new central line. No matter what we did we were unable to calm her down and then she would eventually fall asleep out of exhaustion. It was so difficult to watch her struggle so much and it was the first day she seemed like she was saying "I have had enough"!
Thankfully Gram and Grandmom were here to the rescue so they could stay with Ashley and I could head back over to the hospital late last evening. Ally was asleep when I first got back but then she woke up and we played some games and she seemed to be in much better spirits. Then I helped give her a bath (which she of course hated) and then she was exhausted again so she drifted off to sleep.
As always I am praying for a better day today. I can't keep having these emotional days it is just too draining. Hopefully Ashley and I will get some alone time today and maybe go to the park.
JillComments:Carol Yeager: My prayers are with you as allways and Ally also .May the LORD watch over her and see that she will overcome this ,I just dont know what else to say except that you must be one of the greatest wiied person that I ever heard of
PLEASE dont give up and just keep on believing in our LORD above
Carol Yeager: My prayers are with you as allways and Ally also .May the LORD watch over her and see that she will overcome this ,I just dont know what else to say except that you must be one of the greatest wiied person that I ever heard of
PLEASE dont give up and just keep on believing in our LORD above
Jodee Reid: Finally some good news for you all! I think of you all everyday and hope we can get together again soon. Praying for Ally and the family.The Bollingers: Glad to hear the good news with Ally's biopsies. Stay strong Ally, we are all praying for you.Pastor Pearson: Jill, I subscribe to the Moravian church's Daily Word by email and these are the two scripture verses that Moravians around the world will share today. I thought that they are most appropriate for you.
Then the Lord God will wipe away the tears from all faces. Isaiah 25:8 Rejoice in hope, be patient in suffering, persevere in prayer. Romans
12:12
Pastor & Kathy Pearson: Heavenly Father, watch over Jill, Shane, Ashley and Ally. We rejoice at the good news for Ally and we pray your continued healing power. We pray for strength for Jill at Ally's bedside and for Shane watching from home. Grant them courage to face each new day. Bless Ashley in school and be a comfort to all their family and friends. In the strong name of Jesus, Amen.Polly/Angel_Wings: Hi sweetie! I hope and pray you are having a better night tonight. I am praying for you today and every day. I know the Lord hears and answers our prayers. You are a beautiful Child of God.
Sending you oodles of Angel Hugs, Praises and Prayers. Keep up the good fight, sweetheart. I am praying for Momma, too. ;D
MJ/Angel_Wings: HI ALLY hope you are having a good day Sweetheart. As always you are in my heart and always in my prayersbs: Remember GOD answers knee mail and HIS phone has no hold button.Add a comment:
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Tue, Sep 25, 2007 7:58 AM
A super quick update before I leave for the hospitl. Ally had a busy day yesterday, she lost her right IJ line that had numerous meds running. So she had an ultrasound done to check her venous access and a new line was placed. Of course she had to be sedated and paralyzed for the line placement so all of her vent settings were increased.
On a good note her scope looked good so hopefully the biopsy results will be good too. I will update more tonight.
JillComments:Carol Yeager: As allways I am praying for you and Ally just keep the faith and believe that our Heavanly Father will allways be by your side to guide you and give you strength.GOD BLESS
Etta/Angel_Wings: Praying for you sweet babyTrish/Angel_Wings: Praying for a good day for you precious Ally
filled with our Lord's many blessings.
Trish/Angel_WingsThe Bollingers: Stay strong Ally, our prayers continue for you. Always in our thoughts and prayers. God Bless you all.MJ/Angel_Wings: Ally praying for a good day for you today little one. Know that you are being held close to my heart and always in my prayers.Tracy/Angel_Wings: Sweet Ally,
Praying for you this day sweetheart. Know you are loved and prayed for. God bless you.
Tracy/Angel_WingsD.Stinnard: sorry hit the add button twice. but worth repeating. God blessDawn Stinnard: God bless you for staying strong. We are all praying for the family. Little breaks are needed now and then and yes we all feel guilty when we have to let someone behind or out for a few minutes or hours of down time. But they will understand that you need it. Good luck and God bless and stay strong. We're in your corner praying.
Dawn Stinnard: God bless you for staying strong. We are all praying for the family. Little breaks are needed now and then and yes we all feel guilty when we have to let someone behind or out for a few minutes or hours of down time. But they will understand that you need it. Good luck and God bless and stay strong. We're in your corner praying.
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Sun, Sep 23, 2007 7:58 AM
Sorry for yet another long delay in the updates. I guess the reason I have not been updating is because of my frustration. Ally has now been in the ICU for 57 days and although this is still a relatively short hospital stay for her it feels like a hopsital stay that is never going to end. Ally has struggled through another week on the ventilator. At my last update Ally's settings had been weaned down and we were getting ready for CPAP trial. Ally did a trial on Thursday and ended up collapsing her left lung again. She began to have difficulty maintaining her oxygen saturation and her vent settings were increased significantly.
At this point I am concerned that Ally is just too weak to come of the vent and any time her body becomes stressed (rejection, fever, infection, big belly, poor nutrition) she will have a set back in her respiratory status. Talk of a trache has been mentioned again and if it was my decision I would opt for the trache. I think if Ally had the trache she would be in better spirits because she could communicate with us and sit up and interact. However, transplant is not ready to commit to the trache because it could potentially be another source of infection since Ally is so immunosuppressed.
Ally's bowel is the next issue. The stool from her ostomy has been extremely watery and feeds have been reduced to a minimal amount (5cc/hour). She was also started on immodium and benefiber which have been helping. Her bowel has not fully recovered from all of the rejection episodes. She will have another scope and more biopsies done tomorrow. If we could increase Ally's feeds we could improve her overall health and in return may be able to get her off the vent.
All around it was a very emotional week. Ashley (and mommy too) had a couple of breakdowns this week. Ally also seemed frustrated and had a couple of days were she was crying. I think the combination of exhaustion and frustration made for a bad week. Ashley and I took a much deserved break (mostly for my sanity) this weekend and came home. It has not been a restful trip at all but it was great to be at home and to see all of our family. Grandmom, Pop and Gram kept Ally company while we were at home. Even though I have been away for Ally less then 48 hours I miss her terribly and feel out of touch with her. Ashley and I will be headed back out to Pbugh after church.
I will update tomorrow with some news from Ally's scope and biopsy.
JillComments:MJ/Angel_Wings: Will be holding Ally in my heart and praying for her constantly. Hugs Little GirlCarol Yeager: I am so sorry that you are going through all this but I know you have alot of suport from family and friends.Just dont give up and remember that all of us are praying for you and ally.GOD will see you through this you must believe
GOD BLESS
Christie: Jill, I read your updates as every other day or when you post and every day I think about you and Ally... and your whole family. Keep the faith. Ally is here because she wants to be here and you are her rock. I think of her each time I treat a child (emergency medical services) and remember how precious thier lives are. May god grant you the strength to continue your journey and Ally the strength to heal. Many blessings.mbh: Your strength and bravery inspire me every day.Sherrie Staines: Jill our prayers for Ally are never ceasing, but in reading your journal entries over these last months, she is NOT the only fighter in your family! I stand in awe of all that you do, and I pray that God continues to give you the strength, grace and mercy in each new day, for that day. Your entire family is an inspiration and all of us who have healthy children are reminded how blessed we are, no matter what we go through in a day, it can't compare to yours! Praying for a week of wonderous strides for Ally.deedew'06@yahoo.com: Jill,Shane and Ashley, May GOD provide you with the strength you need right now. There is not a day that goes by without thoughts of ALLY! May you get the much needed peace you deserve. ALLY will continue to fight and win, we are sure of that! Our prayers are with you. Love,HPHCThe Bollingers: Our prayers continue for Ally's recovery. Everything that your family has been through, it is normal to have those frustrations and breakdowns. Our hearts go out to all of you. Positive thoughts and prayers continue. God Bless.Sandy Maicher: We continue to keep all of you in our prayers. I'm praying that Ally can keep up her strength and that the doctors all agree what is the best for Ally. I hope that this up coming week brings betters things for all of you.phil h: We are continuing to pray for Ally in 2nd gr Sunday School at St. John's
Margaret Ann (PICU): WE are all continuing to have you in our thoughts and prayers. We wish we could be their to help. We all want Ally to continue to heal.. We wish we could do more. I am hoping for a better and more peaceful week! Ally and Ashley are lucky to have you as their mom. Margaret AnnSheila: Jill,
I hope you had a safe trip back to Pittsburgh today. Sorry to have missed you this morning in church - I had to work. I'm praying that this week brings some peace and calm to all of you.nana42@hughes.net: I have been reading your journal for a long time and cannot imagine how you continue to be the positive Mommie you seem to be. Know that prayers are going up for your entire family.Add a comment:
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Wed, Sep 19, 2007 10:15 PM
The last two days have been pretty good for Ally. She basically has her vent settings weaned down to were she was a couple of weeks ago just prior to being extubated. Her chest x-rays have been looking better and her bowel scopes and biopsies looked good as well. She also had a CT scan done yesterday just to check out her abdomen (or maybe just to waste more insurance money). There was really no reason for the scan the docs just wanted to make sure there are no areas of fluid collection in her abdomen before they stop some of her antibiotics. Of course her white count has still been elevated so they will keep her on the antibiotics until her count is in the normal range.
Ally spent the majority of the day sleeping which always concerns me a little. I guess I can never be happy. I worry when she doesn't get enough rest and I worry when she sleeps to much :( She did get a chance to watch some of the videos on her website and I caught her smiling. She also needed to have her ostomy bag and belly dressing done twice today so that definitely kept her awake. Her belly looks fantastic and if she keeps granulating tissue at this rate, her belly should be closed in another month!
The key now is to continue to get her stronger so she does better with extubation the next time. I also think she should be doing longer CPAP trials on the vent so that we are sure she is ready to be extubated. There has been no talk of starting CPAP trials yet. I definitley think she could still use a break for another day or two.
Ashley had a great day today. She went to her classmates' house (a boy and girl twin) and had a wonderful time. Their mother also told me that Ashley found something new she liked for dinner, Salmon! My daughter, who last week told me she couldn't eat the bread that I made her sandwich with because "it had stones in it" (most of us would have called it grain but Ashley insisted that they were stones). Not only did she eat the Salmon but she had three helpings. So I am sure that they think I don't cook anything healthy and they probably also think I am starving her! Oh well, she asked if I could get the recipe so we will see how much she likes it when I make it.
JillComments:uni-brower: we love to hear of clear xrays-praying xtra hard-hope everyone is hanging in there-love you allDawn Stinnard: Groat for Ally little steps are better than none. Ashley sounds like any other child they're better in someone else's home. Better little helpers and eaters. Than they come home and tell you what they did and you try to get them to do that at home. Ha. ha. At least she had fun. Your always in our prayers.Steph: We continue to pray for Allys healing and your family's strength.. Glad to hear things seem to beThe Bollingers: Glad to hear the Xrays and scopes were all good. As parents, we are never satisfied, good or bad. Our prayers continue for her strength and as well for Ashley for great days at school. God Bless you all.Carol Yeager: Lord please watch over Ally and also help her to get stronger and keep on fighting to overcome this Bless her with your everloving care and keep her from any pain or suffering,God knows she has been through too much in her lifetime as it is.My family will allways remember her in all our prayers.Noelle: Just dropping a note to let you know I am still keeping up with you and the family. It is great to hear that Ally is improving, even though it is slow, she seems to make up for any of the backwards steps she takes!
As for Ashley, my kids love fish too! My older son calls it chicken, but who cares, he eats it! The other mother knows you feed her well, don't worry, we all understand that kids are picky and are better eaters away from home!The BohnFamily: Dear Ally,we are praying for you and your family and for your doctors. Please keep your beautiful smile. I'M Glad your sister liked salmon. May God Bless You.Kristin Hedgelon: I pray for Ally and your family's strength every day. Hang in there.Heidi Snyder: I am so glad Ally is doing well, and I am glad Ashley likes salmon. That little one is better than me to like salmon. Way to go girl! My heart and prayers are with Ally, Ashley and you and Shane everyday. This congregation and I will keep you in our prayers.Pastor & Kathy: O God, we give you thanks for clear xrays, good bowel scopes, good biopies and for salmon! We pray for a smooth weaning from vent to CPAP and for your presence with Ally, Ashley, Jill and Shane for Jesus' sake. Amen.Add a comment:
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Mon, Sep 17, 2007 12:13 PM
Well Ally worked as hard as she could but ended up wearing herself out. Around 4 am the ICU team called to let us know that they were reintubating Ally. Yesterday Ally's left lung had collapsed again and she just couldn't breathe effectively with out it. By late last night and early this morning her blood gases looked horrendous and there was no choice but to intubate. She seems so much more comfortable on the vent and at least now we can clear her secretions.
Her white count is very elevated today so they are a little concerned about pneumonia. She will be pan cultured today and we will wait and see if anything grows. She is already on broad spectrum antibiotics so hopefully they have her covered. Her blood gases have improved this morning therfore, some of her vent settings were weaned. I am sure she will be spending at least another week on the vent.
Ally also had a scope done this morning and we should have those results by the end of the day. OT also came by to see Ally and she threw all of the toys at the therapist, so at least she is working on her strength! Since her respiratory status is stable on the vent, feeds are going to be restarted at 10cc/hour.
Not much else to report. Please pray for Ally's strength.
JillComments:D.Stinnard: Go get them Ally throw all you toys at everyone. Show them how strong you are getting. Be strong and the breathing will come alone to. Bless all of you. Hope Ashley is having fun at school.Aunt Jeanne: Hi sweetie! Hope you're feeling better. Keep fighting and stay strong. I do love to hear that you are throwing things at the therapists. What spunk! As always, much love, many prayers and constant thoughts to you, Ashley, Mommy and Daddy...
Love, Aunt JeanneThe Dunn's: May not have the chance to write daily, but always know that the whole family is in our prays daily. My Ally grow stronger each and every day, in her own way.Bonnie & Greg: We continue to pray for Ally and hope she gets stronger every day. She is a fighter and has alot of people praying for her recovery.Carol Yeager: I am praying each and every night and day for all of you,Please tell Ally that she should keep up the great fight and not to give up
The Good Lord will see that she is strong and then he will see that she keeps her strength to carry on through this and she will overcome this
God be with her and keep her from too much suffering or pain.
MJ/Angel_Wings: Good Morning Sweet Ally am thinking of you and holding you close to my heart and always in my prayersNan Moyer: To be sure, Ally is in my prayers.Oscar S.: We continue preying for Ally. A little bump in the road, but she is definitely a fighter. Would like to have seen her throw her toys at the therapist.Judi: O God, how great thou art! Continue to hold Ally and her family in the palm of your hand, and be with the doctors and nurses that care for Ally. AmenThe Bollingers: Our thoughts and prayers continue. Keep fighting Ally, we are all behind you 100%. God Bless you all.Pastor & Kathy: O Lord our rock and our fortress, give strength to Ally with her breathing. Help the antibotics do their work and bring her healing. Be the strength of Jill, Shane and Ashley and all their family and friends, for Christ's sake. Amen.melinda/Angel_Wings: Ally, I am praying hard for you. God bless you!Sandy Maicher: Our prayers continue to be with all you and especially Ally.Add a comment:
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Sun, Sep 16, 2007 9:51 AM
I know it seems like forever since we updated and I can't decide if it is laziness that has kept me away or the craziness of my life! Ally has really been working hard the last couple of days. She has been trying her best to stay off the vent even when some of the docs were wanting to intubate again.
There seemed to be a big difference in opinions between the attending docs and the fellows in the ICU on what the best course of action was for Ally. The attending and her wonderful nurses wanted to see Ally stay on the CPAP machine as long as she was not getting worse. A couple of the fellows thought she should just be intubated since she was not getting any better. Thankfully she ended up staying on CPAP and for now will continue to work on getting stronger.
I got a great look at her belly yesterday and I can't believe how much her wound has healed over the last week (thanks to not being on steroids). Unfortunately some of the cells in Ally's biopsy looked a little abnormal so she was started on high dose steroids again. Her transplant doc said that it did not necessarily look like rejection but it did concern him enough to start treatment. She will be scoped again Monday or Tuesday. The GI nurses that help with Ally's scope are quickly falling in love with her and are now bringing her little presents everytime they come to see her!
On and off Ally has been awake but she is not very happy (not that I blame her). It has definitely been another difficult week of watching her struggle. She does seem to be doing okay with some of her narcotic weaning so that is a positive.
Ashley had a good week at school. One of her fellow classmates had a birthday and she got to be a helper in the kitchen to bake the birthday cake. She also went to a birthday party yesterday for a little girl in her class. They watched "Snow White" at a local childrens' theater and got to dress as their favorite princess. It was a long week at school but I know she is enjoying it.
Hope everyone is doing well. I miss everyone at home especailly my family. Ashley and I are hoping to come home next weekend for a day or two. My mom and dad will be staying with Ally in Pittsburgh.
JillComments:Carol Yeager: I was looking to hear from you and I am glad to have heard from you today. I am praying allways for you and your little girl and also for the family also.I cant imagine what it is that keeps you going as long as you have been, I only hope that when the time comes and you can take Ally home that you will have the strength to go on taking care of her without collapsing under too much stress and pressure,She is going to need you so very much you know. May God BLESS you all and give you the strength that you will need to carry on.My thought and prayers are with you allways
Trish/Angel_Wings: Sweet Ally we are storming the Heavens with special prayers for you..
Trish/Angel_WingsMJ/Angel_Wings: Ally I am praying for you and keeping you in my heart.phil h: We continue to pray for Ally and your family, every week in second grade Sunday School
The Bollingers: Are thoughts and prayers continue for you all. Keep fighting Ally! You are doing a great job. So glad to here Ashley had so much fun at school, very busy for the first week of school.Pastor & Kathy: We prayed for Ally today at church as we do every week and as we all do on the days inbetween. We are thankful for Ally's progress and Ashley's delight in school. We pray God's presence with Jill and Shane and all the family.--Pastor and KathyAdd a comment:
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Wed, Sep 12, 2007 4:16 PM
Well so much for the good updates. Although things could always be worse so I won't complanin too much. Ally had a very bad night last night and ended up going on Bi-pap. A chest x-ray showed that her left lung was completely whited out and her blood gases were looking pretty bad. Thankfully she is tolerating the bi-pap and her chest x-ray from this morning looks a hundred times better than the one taken last night. Hopefully she will get by on the bi-pap and not have to be reintubated.
Since she had so much respiratory distress her feeds were stopped. She has been asleep almost the whole day and I am not sure if this is because she is exhausted from all of the breathing she is doing or if it is her way of dealing with having to wear the bi-pap mask.
Ashley had a good day at school and helped make a cake for a fellow classmate's birthday. After school Grandmom and I took her to the park to work off some of her extra energy. Grandmom said that she would have to head back to the hospital to use some of Ally's oxygen after all of that running around (remember she is older now). Speaking of people who are older today is Shane's Dad's birthday. Happy Birthday Pop:)
JillComments:Steph Dean: I hope Ally's health will continue to improve. I'm hoping to be able to go visit her next week and see how she is doing. Your entire family is always in my prayers!The Bohn Family: Ally your a strong little girl keep fighting and you and your family are in our prayers. BLESS YOU AND YOUR FAMILYuni-brower: hope everyone gets some rest-Happy Birthday Pop-So happy Ashley is enjoying school--hugs & kisses to allDawn Stinnard: Keep up the good fight all will be good soon. I'm glad Ashley is enjoying school and happy that the children have accepted her as one of their own. Enjoy the fun times and let the doctors worry about the other stuff. Your in our prayers as with the other families you spoke about. God bless and know he's looking out for all of you.Toni: JIll,
You don't know me. I am the sister of a BWH employee and have been known to so the pee dance. I am also a nurse. I have been reading your updates and am glad to know Ally is off the respirator. It sounds like her lungs are much better today. I'm glad she can sleep with BiPAP.
My thoughts all with all of you, especially you and Ashley. It sounds like you have a tremendous
support system. Take care of yourself and let others do the other 'stuff'
ToniCarol Yeager: I was sorry to hear the not so goodnight news but I am so glad that she is so strong willed that she isn't going to let this get her down.Keep smiling and GOD BLESS YOU AND YOUR FAMILY
The Bollingers: Keep on fighting Ally. We are all praying for you. You are in our thoughts and prayers. It is good to hear Ashley is enjoying school.Pastor & Kathy: Heavenly Father, bring your healing power to Ally. Heal her lungs and let her breathing improve. Be present with her Mom and Dad, her sister and all her family. Let them know your strength and care. In Jesus' name, Amen.Jana Ulrich: Jill, You amaze me more and more each day...AND, Ally is a strong little fighter. What a trooper. Please know that you're in my thoughts and prayers.Landis family: We hope for a restful night so Ally can regain her strength and get back on track with her breathing and her feeds. We are continuing to keep her in our prayers!Add a comment:
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Tue, Sep 11, 2007 9:01 PM
Ally is still holding her own. As long as you don't count high flow nasal canula and about a million types of nebs not to mention enough chest pt to probably leave bruises. She was awake today in short spells but did a lot of sleeping. I am hoping this is just because she is tired since she has to do all the breathing on her own. She did seem comfortable most of the day but she still needs to have more productive coughing so that she can clear her secretions.
Ally also had a scope done today and Dr. Kyle was pleased with how things looked so hopefully the biopsies will look just as good. Her feeds were restarted at 10cc an hour and they will probably go up another 5cc tomorrow. Dr. Kyle also said it would be fine if Ally wanted to start drinking some water and I think that was the highlight of Ally's day:) She was able to vocalize her requests a little more today mostly "no" "off" "up" "water" "Mickey" and "go" (which she told her nurse when she wanted to suction her mouth). Definitley 3 yr. old appropriate behavior:)
Happy Birthday Grandmom and Happy 5th Birthday Anthony (I don't think Grandmom would appreciate it if we made her age public knowledge but if you want to guess it falls between
54 and 56!)
JillComments:Carol Yeager: I am so overjoyed to hear about the good news and I feel as though prayers being sent to you are going to help more and more everyday.Just keep on believing and the LORD will see you through this.Lots of hope and prayers are sent your way and I will keep on praying also.
KEEP SMILING
Judi: Lord, we just lift up Ally and her family that they know and feel your arms of comfort around them. We praise you for continued progress. AmenThe Bollingers: Keep up the good work Ally! We are praying that each day gets easier for you.Pastor & Kathy: We give you thanks, O God, for the good progress for Ally and we pray that it will continue. Thank you for letting her be a typical 3 year old. Keep watch over her mom and dad and sister. Amen.Add a comment:
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Mon, Sep 10, 2007 8:55 PM
Yeah!!! Ally did it she was extubated around noon today:) Even though this is a big hurdle I am holding my emotions in check to see how she does with her breathing over the next 48 hours. She did very well initially but now seems to be having some difficulty clearing her secretions.
Overall she had a great day. She was awake most of the morning and is perfecting tooth and gum care. She has had a mouth swab in her hand or in her mouth constantly the past three days. I think she likes this because she can do it all by herself. Plus she likes the water that they dip it in. Imagine how awful your mouth would feel if you had a tube in it for 6 weeks, nothing to drink, and then twice a day they sprinkle powder in it. (Ally's rejection meds are in a capsule that they open and sprinkle the powder under her tongue.)
Ally also tried to talk some today. Mostly just a whisper since she is very sore and hoarse. However she manages to be very demanding in her own ways. She points and vigorously shakes her head and thankfully has a lot of patience with us while we try to figure out what it is she wants. I am hoping tomorrow she will be able to vocaliz her needs a little more.
Ashley had school today and she also had her first dance class tonight. Which we managed to be 10 minutes late for but she still had fun. It is tap dance and she was already telling me that her shoes were not that loud so she thinks she needs to practice at home. We are also busy making some plans for her 5th birthday (wow!) which will be here in less then a month.
Hopefully tomorrow's update will be all good news!
JillComments:Mary and Maggie: 3 cheers for Ally!! Congrats on 1 less tube!! Wow! I can't belive your in school Ashley! I remeber meeting you when you were a little more than 2 when Ally was at Bryn Mawr! Hope Everything goes well for you guys these next couple of days!!!Barbara: I knew you could do it Ally girl...stay strong, all of you. I hope to get up there soon. Going to New Orleans next week but I'll be up there real soon I promise.
Love to all..and I'll keep on praying.
Love
BarbaraOscar S.: Horay for Ally; horay for Ashley. Such great news all around!!!Judi: Our prayer team at church (St.Paul's UCC) has been praying for Ally since she was born! This is such good news. God is a great provider!Ken and Becki: Yeah!!! We love the good news updates. We'll all keep praying.Pastor & Kathy: What wonderful news! Your Mom stopped at my office to tell me that Ally was extubated. We give thanks to God. Tell Ally to keep working on her words and tell Ashley to work on her dance steps.Aunt Sherry & Uncle Wally: Way to go Ally. What wonderful news. Keep up the good work our little friend. Thoughts and prayers continue for you and your family.
Love ya, Aunt Sherry & Uncle WallyThe Davidheiser's: Hooray for Ally!!!Wonderful news. Hooray for Ashley and her dancing shoes. Better turn up the volume on them! This is great news. Bless you all.Carol Yeager: AMEN HALALUYHA AND GOD BLESS, I am so glad to hear the great news and I am praying that we all hear nothing but good news from here on in.
It is GOD's will and he is the one we need to keep looking up to so that he will know that we are all GREAT BELIEVERS and nothing will ever come between him and us for he watches over all of his children, I know he will keep on doing his best to give Ally the will and strength to overcome all her obstacles because he sees that she hasnt let this get the best of her and she is going to have the faith that it takes to get her through this.Keep your head up and just keep believing and he will see you through this.
GOD BLESS
Kurt and Janine Davidheiser: Awesome news! here's to her talking your ear off soon :) Glad Ashley enjoyed school and her first dance class!Jeff & Lisa HOuck: Great to hear the wonderful update.Sandra DiCesare: Way to go Ally!!!!! We are thrilled at how great you are doing!!! Glad to hear Ashley is enjoying school and dance classes. hugs to all of you.Heidi Snyder: I am so happy for Ally that she is doing well. My prayers are with her and your family.The Bollingers: Way to go Ally!! Keep up the hard work, we are all proud of you. Glad to hear Ashley had a good day at school and enjoyed her tap class. Tap away Ashley!!! What joyful noise. Always in our thoughts and prayers.phil h: glad to hear that Ally had a great day. Things are starting to look upSandy Maicher: Yeah...keep up the good work Ally. Ashley, John would love to help you with your tap dancing. Our prayers and thoughts continue to be with all of you.Sheila: Yeah Ally!! Hope today is full of good news as well! Glad to hear Ashley is doing better as well. Love to you all.Michele: way to go Ally.........i will be praying for you..............Steph: So glad to hear good news. Glad ashley is enjoying her school and dance too. You guys are amazing and just dont give your selves enough credit! Always praying for you and cant wait to meet Ally in person... either here or in PGH!
stephLiz: Way to go, Ally! You'll be talking your mom's ear off in no time:-)Sandy Y: What a wonderful update!Add a comment:
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Sat, Sep 8, 2007 11:23 PM
Not much going on here we are just waiting for Ally to get a little stronger so she can be extubated. She had two CPAP trials yesterday and two today. I am really hoping she be off the vent in the next two days. She was awake for a while today and seemed fairly pleasant. She was determined to sit up in bed and Dr.Sindhi, her surgeon, was at the bedside when she did this. He was happy to see her so determined and he seemed pleased with her progress this week. She was finally restarted on feeds so hopefully this goes smoothly.
As all of you know Shane and I are huge advocates of organ donation and organ donor awareness. Everyday about 18 people on the national waiting list will die while waiting for organs. Yesterday one of those people was Brady. Brady was born premature at 25 weeks old on September 6th 2006. Brady held out to his one year birthday and then his little body could hold out now longer. Please keep Brady's family in your prayers especially his parents, Laura and John.
Remember to talk to your family and let them know your wish to be an organ donor.
JillComments:uni-brower: go Ally--we are all behind you--we are still praying xtra hard--We will keep Brady's parents in our thoughtsOscar S.: Praise be to Ally's progress. Will add Brady's parents to our prayers. Like Pastor and Kathy, we too have organ doner noted on licenses.Heidi Snyder: We are so happy to hear of progress of Ally. We continue to hold Ally in our prayers.The Davidheiser's: Jill, We are so glad to hear that Ally's doing better. We pray for her every day. We have little Luke in our Sunday School class now and can't wait for Ally's return. Give her our love.
Mike, Betty, Kyle, and Zach
Carol Yeager: You go little girl ally,Keep up the good work and remember there are lots of people here rooting for you.I see the strength that you have in that little body of yours and it is so strong that you can get through allmost anything and allways have faith in the Lord up above and he will allways be looking down on you to see you through all this.God's love be arounds you allways. sighned with all our love and prayer's allways The Yeager family also known as Sissypop52.LOVE YA!!!!
MOPS friend: We are having MOPS this week and will miss you dearly! Rest assured, prayers will be said for all of you during our morning hour. And we will have a nice surprise for you after the meeting . . . God bless you all!The Bollingers: Keep up the hard work Ally! We are all behind you. Our prayers will include Brady and his family. God Bless you all.Pastor & Kathy Pearson: We give thanks for the good progress that Ally is making and we will hold Brady's parents Laura and John in our prayers. You give special meaning to the organ donor cards in our wallets. Pastor and KathyKaren Owens: Go Ally! Keep getting stronger little girl. Jill --I think about you everyday, you are an amazing mother for both your little girls!brenda norman: i am up late checking emails, this update is the kind i like to read, keep up the good work ally and keep getting stronger our prayers are with you and your mommy and daddy!Add a comment:
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Fri, Sep 7, 2007 11:41 AM
Sorry for yet another long delay in the updates but I kept hoping that my life would get less crazy this week (why would that happen!) and that I would have time to update. Thankfully, Ally was not the one keeping me so busy this week she had a relatively good week. My mom and my girlfriend Katie came into visit this week and it was great to see Katie and as always my mom was a huge help with both the girls. Currently Ashley is busy playing and catching up with her Gram who came in last night with Shane. The past two weeks it has felt like we have a revolving door:)
Like I said Ally's week has been pretty good. She has been awake a lot more and seems to be fairly content when awake. She has been watching videos and managed to squeeze in a manicure and pedicure (thanks to her night nurse). She has finally finished the high dose rejection meds that she was on, which is why I think she had some good days this week. Yesterdays he seemed more agitated but they had also weaned her fentanyl significantly. It was obviously too aggressive of a wean because she became so agitated that her vent settings needed to be increased along with increasing her methdone and then later back up on her fentanyl again.
Ally has been strong enough to do some CPAP trials on the vent (this means she does not get a ventilator breath but the vent delivers pressure when she takes her own breaths). I think the rejection last week really set her back so if we can just keep her rejection free I think she could be off of the vent in the next few days. She had another scope and biopsies done yesterday afternoon so we should have those results soon. That was her third scope and biopsy this week. The other scopes looked better than last week and the one done yesterday looked better than the one done Tuesday so hopefully the biopsy looks just as good.
Ashley had her first few days of school which went well. She seems to like it and was excited the first day. I think the school will be a good fit for her and the rest of our family. The staff is wonderful and extremely helpful too. She was already invited to a little girls birthday party next weekend so that will be exciting. It is a princess theme so she told her Daddy to bring out her Ariel costume!
It was a very difficult week in the ICU for some of the other patients and their families. Although Ally has had a tough road she has always made it through, over or around any bumps in the road and we know she has been one of the lucky ones. We are truly blessed for every moment we have had with her good or bad because in the end she is still here with us and that is all that matters. I also know we are so fortunate to have the support system that we do. I have met two other mothers since I have been in Pittsburgh that have children in similar situations to Ally. They both are mostly here alone and are facing these obstacles on their own. I pray for their strength. I pray that they always have their children.
JillComments:Carol Yeager: I am praying to keep on hearing nothing but good news about your little girl and just am so happy to hear that things are going a little better for the family with being in a new school and all.I will keep on PRAYING for you and your family every day.GOD BLESSphil h: Glad to here things have gone well this week, and the 2nd gr Sunday School class at St. John's will continue to pray for ally
Oscar S.: We keep praying for Ally as well as for the rest of the family. Maybe there is a smallThe Bollingers: Wow sounds like Ashley is fitting into her new school well. That is great news. Keep up the hard work Ally, we are all praying for you. Our prayers continue for you and your family and for the families that are going through a difficult time with their children. God Bless you all.Dawn Stinnard: thanks for the updates on the family and Ally our prayers are with you and so many more. let the other families know that they are in our prayers and hopefully they are blessed as well. thanks and God blessSandy Maicher: Thanks for the update Jill. I'm glad to hear that Ally has had a somewhat better week. We think about all of you daily and our prayers continue for all of you. I'm glad Ashley is enjoying school. Hugs to all of you.Sister Millicent: Thanks so much for the positivve update. It is good to know that for Ashley and Ally this was a good week. We continue to pray God's richest blessings for all of you.Johanna: I will continue to pray for Ally's improvement and for increased faith and strength for all of you. Jill and Shane, you are doing a great job with everything, and I know you will continue to do so, even though it isn't easy!Add a comment:
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Tue, Sep 4, 2007 10:39 PM
Not to much to report today. Ally spent the majority of the day sleeping. She had an endoscopy done this morning so she had some extra sedation. Her docs thought the scope looked improved compared to last week's scope. Tomorrow she will have another scope done through her ileostomy. The docs will then compare the scopes and biopsies from the last three days and then decide what treatment should be next. Ally's vent settings were not able to be changed much today due to the extra sedation.
Ashley had a chance to visit her new school today. She seemed to like it and I think she is even more excited about starting school. She has three teachers since there are about 22 students in her class. All of the teachers seem wonderful and they went out of their way to make Ashley feel welcome today. Thursday is Ashley's first day and she starts at 8:30 so it will be a challenging morning (of course Ashley is not a morning person so every morning is a little challenging!)
I am praying that Ally can make some steady progress over the next few days with weaning from the ventilator. Today Ally tried to talk numerous times and she becomes so frustrated when she can not tell us what she wants or needs. It is very difficult to watch her struggle and the more awake she is the more withdrawn she becomes. I feel if she had the tube out we could talk with her and would be able to comfort her more. Mostly I just miss my little girl and her adorable, happy, voice. I think Ashley is missing her too because she loves to sit and watch the videos on the website. Please pray for our strength.
Jill
Comments:Steph: just wanted to let you know we were thinking of you. steph and nateCarol Yeager: May the GOOD LORD bless all of you and especially your children.The children are the ones that need your strength and also you faith,dont ever give up and also remember that prayers are answered.I know it probably has crossed your mind as to why this is happening to your family but sometim,es the Man up above does strange things to test us and our strength.You must allways believe in him and trust in him and he will see you through this weather it be good or bad he knows what is best.I do believe that the GOOD LORD GIVITH and He also taketh away if he sees that suffering is just too much, but I do believe that is way of testing our strength.so PLEASE be strong and keep praying and believing.Thoughts and prayers be with you allways
Nan Moyer: My thoughts are prayers are with you.Carol: Ally and Ashley are always on my mind and in my prayers. God has given you all extraordinary strength and wisdom.The Amands: We are thinking of you guys and praying for you every day. You all are doing an amazing job.The Bollingers: We continue to pray for Ally and your family. May Ashley have a wonderful 1st day at school and meet lots of new friends. Keep fighting Ally!Pastor & Kathy Pearson: Heavenly Father, be with Ally in her healing. Help her to do more of her own breathing so that the vent can be reduced. Be with Jill, Shane and Ashley as they love and care for her. Amen.Add a comment:
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Mon, Sep 3, 2007 11:32 PM
I hope everyone had a wonderful Labor Day weekend. It was beautiful in Pittsburgh and we were busy, busy, busy!!! Ashley had fun showing her cousins around the city and generally just enjoyed having someone to play with. Today we got a visit from Ashley's Sunday School teacher from home who has started college at Duquesne a couple of weeks ago. Also my Aunt Shelley and Uncle George stopped in on their way back from Warren, PA (near Erie). So it was nice to see some familiar faces.
Ashley and I also had a chance to visit with two other families. The one family is currently leaving in Pittsburgh while their daughter waits for a bowel transplant. They are here from New Zealand and have four children ages 16 to 3. (Just when you think we had it bad). Matisse is six years old and they have been living here since January when Matisse was evaluated for her transplant. Matisse and Ashley managed to sneak in a couple of games of Go Fish and catch up on the latest High School Musical gossip.
This evening Ashley and I headed out to meet one of her new classmates. I had met his parents last week at Ashley's school's open house and they called to invite us over for a cookout. Ashley had a wonderful time playing with their son Jack and she will feel better having a familiar face at school. It was so nice to sit back and relax a little and comforting to know that we have made yet another friend in Pittsburgh.
On to Ally who has also had a busy weekend. Ally is still having some sedation issues. Which means she is spending a lot of time being agitated. She has longer periods of being awake but is generally withdrawn and unhappy, which of course is difficult for us to watch. On the positive side she seems to be more restful when she is sleeping. Her vent settings have been up and down with very little progress since last Monday. I have noticed that the breaths she is taking on her own seem stronger than what they were last week. However, when she is asleep she hardly takes any breaths on her own and lets the ventilator do most of the work. It is difficult to find a balance where she is sedated enough that she is comfortable but not sedated too much that she can not take breaths on her own. One of the many things I have learned since Ally was born is that an ICU stay is all about finding the right balance.
The newest thing we are having trouble balancing is Ally's Prograf levels (rejection med). Since Ally is being treated for rejection the docs like to keep her Prograf levels high. Needless to say Saturday morning they were through the roof. Her Sat p.m. dose was held and yesterday morning she had a nice level. Her meds were restarted but this mornings level was the lowest it has been since she was transplanted. A low level makes it even more difficult to fight the rejection, so we are still trying to find her right dosing schedule.
Ally had a scope done this morning and rapid biopsies were taken. Tonight I spoke with Dr. Sindhi and he said out of the three biopsies two looked unchanged since last week and the third looked slightly improved. He thought we should continue on the OKT3 rejection med and definitley work on getting her Prograf levels back up. He wants Ally scoped again on Wednesday.
Ally has still been having bleeding from her bowel. The docs were not overly alarmed by this and actually were surprised that it had not begun sooner with this latest round of rejection. She did have some more significant bleeding last night so she required yet another blood transfusion ( a reminder to everyone to donate blood if you can!)
Well that about sums up the weekend, I guess this is why I shouldn't take a break from updating because then the updates get too long! This week will be busy too (aren't they all). My Mom and my girlfriend Katie are coming to visit tomorrow so that will be nice. Ashley has a visitation day at school tomorrow for just an hour and then has her first day on Thursday. If you ask Ashley about her school all she ever says is that the only days she has off are Saturday and Sunday (which is exactly why I picked that school!). Anyhow I can't tell if she is excited by this or dissappointed so I guess I'll find out soon enough.
Before I forget I want to thank Lynne and all of her colleagues at Burns, White, & Hickton for participating in a dress down day in honor of Ally. The money raised will go to Ally's recovery fund and of course will be a huge help to us while we are living in Pittsburgh. If I had the time I could spend the rest of my life writing thank you notes to all the people that have helped us over the past three and a half years and I still would not be able to complete the task. Thank you to everyone who has supported us in any way, we are forever grateful.
Take care,
JillComments:The Bohn Family: Jill,Shane, Just want you ro know that you and your family are in our prayers.Jodee Reid: Hi Jill
So glad we finally got to meet you and Ashley. What a wonderful mum you are. Looking forward to meeting Shane and the amazing Ally!
All our Best
The Reid ClanCarol Yeager: I will keep on praying and hope for the best for you and your family.I also hope that your little girl is as comfortable as she can be considering all that she is going through.Prayers be with you all the days and just keep the faith.The GOOD LORD above hears all our prayers and grants them as he can.
GOD BLESS
Sandra DiCesare: Jill. I was so happy to see you finally got meet Jodee and Matisse. As Always you are in our thoughts and prayers. Hugs to all of you!!!!AUNT SHELL: WE WERE SO GLAD TO SEE YOU,ASHLEY AND ALLY ON SUN. I CAN'T WAIT TO FIND OUT WHAT ASH COOKS FIRST AT SCHOOL.Margaret Ann (PICU dupont): I am continuing to think of you and pray for Ally and your entire family. I am hopeful that everyday brings some progress for Ally towards her recovery. You are wonderful parents... Ashley and Ally are lucky to have you both. Love, Margaret AnnThe Bollingers: Our prayers continue for Ally and your family. May each day get easier for Ally and her healing continue. Ashley will have a blast once school starts and she meets all her new friends. She won't stop talking about school. God Bless you all.Sandy Maicher: Our prayers continue you to be with all of you.Pastor & Kathy Pearson: We pray that all of the balancing of medications and vent will go well for Ally and that the rejection durgs may do their work. We are so glad to hear that your family had a great weekend and that Ashley is getting a good start in school. Our prayers continue. Pastor & Kathy.phil h: hi Shane,Jill,Ashley and Alley
Glad you had a great holidy weekend, and it sounds like it was a busy one. We will continue to pray for Alley in the 2nd gr Sunday School class at St. John's
Carla: You are in our prayers every day. The first thing I do when I get up is check for updates on Ally. Each tiny step of improvement leads to larger steps. We'll keep praying for those steps forward.stephanie: Hey Jill and shane,
Just wanted to let you know I am always thinking of you and praying for Ally and your family
steph and nateAdd a comment:
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This latest update is the BEST news! We all pray that the
Love,
Aunt Sherry & Uncle Wally
Love,
Dawn ~ ^i^Brandon^i^, Jordan, & Seth's Mom
www.caringbridge.org/de/brandonhastings
All our love,
Mom and Dad