Sunday, May 20, 2012

Caitlyn's 3rd Debulking - Her First 48 Hours

I have decided to do something a little bit different for this blog post.  Because I updated so often, in quite detail, and received so many wonderful comments on Facebook, I thought I might share them all here.  Names of friends have been removed for privacy except for a friend's first name if there was a conversation going on back and forth.  Mine and my husband's comments have been underlined to easier decipher who is writing what.  It's been a roller-coaster of a ride these last couple of days so read along and join the ride of emotions with me.

Posted: the morning of Wednesday, May, 16.
I can't believe it, the day is finally here, we leave for Milwaukee this afternoon and won't return for quite a while. Tomorrow is surgery and in a few days my little lover starts chemo once again. This is not going to be an easy road these next few months. My stomach is feeling very uneasy at the moment. Stay calm Mama and stay positive, it will all be worth it in the end. 
o   ill be keeping u in my thoughts & prayers! plz keep me posted! much ♥ & im always here if u need to talk! my # is on my profile. 
o   meant u all• 
o   Thinking of you!!! 
o   Hope all goes well. U will all be in my prayers. 
o   Thoughts and prayers are with you !!! Please keep us posted.. 
o   You and Caity are in my thoughts and prayers. Good luck hun and let me know if there is anything I can do for you at all. :-) 
o   All my love and strength I'm sending with you! Call me text me whenever! You can do this. Mommy power is stronger then anything. Hugs for both of you! 
o   Praying for your little on Sondra! Hope all goes as smooth as possible!! 
o   best wishes 
o   Thinking of you and Your Family in your time of need! Keep ur Chins up and try and Stay Positive! Give Little Miss Caity my Love! Hang in there Momma it will be ok! 
o   Sondra Gruenwald: Thank you everybody for all your kind words and support! We made it to Milwaukee and I will update tomorrow as I get updates from the OR. She is strong and I know will do GREAT!

Posted: evening of Wednesday, May 16th
made it to Milwaukee, along with losing my wallet, money, debit card, social security cards, car and health insurance cards...fml. But, we made it, went swimming, ate unhealthy pizza, then had baths. Caity and I are pooped and ready for bed....I will update tomorrow 
o   hope things get better 
o   crappy! try and sleep well tonight you two and digest that darn pizza ;) and start fresh tomorrow with cold pizza and cartoons..... still prayin for ya. We will pray harder. :) *hug* 
o   Hang in there.Tomorrow is a new day... You both Will be in my thoughts.. 
o   You guys will be just fine......sending happy thoughts your way!!!!

Posted: morning of Thursday, May 17th
Caity likes her versed, her face in on the ipad!
at Children's Hospital of Wisconsin with Louise. Let's hurry up and get here just to sit and wait. It's a good thing Caity is such a good girl about it all.
o   Sondra Gruenwald: And cue [my] heart racing and elevated blood pressure
o   Best of Luck with Everything, let us know what's going on as soon as you find out. ♥ ya lil miss caity!

Posted: Early afternoon of Thursday, May 17th
Update #1: PICC line went in smoothly, only one poke - HURRAY for that! Dr. King is starting to work his magic as we speak. The plan is to make two incisions on her leg. One running down right in between her "x" scars and another one down the lateral part of her leg. So lots of healing and she will be back in the OR every 3-4 days while we are here. Then, as I said before, chemo will be started in just a few days. Oh Lord, please give me the strength to make it through this day!

Posted: Mid afternoon of Thursday, May 17th
Update #2: I heard from the nurse a while ago but just now got a chance to update. Caity-bug is doing really well, her vitals are all staying stable. Dr. King is still (or he was when I talked to the RN) working on her first incision and will be starting on the second shortly. So it will be another couple of hours before he is finished. We did get a room number so at least Louise and I were able to lug all of our belongings to the room, it literally feels like we are moving in. 
o   Good to hear! Keep us updated!

put your hands in the air and raise the roof for an AWESOME new leg!
Posted: Late afternoon of Thursday, May 17th
Surgery is over and she is doing GREAT! Dr. King only made one incision and was able to get around her whole leg with just that opening! She did lose some blood so she may need a blood transfusion in a little while. I will post pictures as soon as she is settled. I can't wait to go back in recovery to see her! 
o   Cait we love you! ♥ 
o   Yay what great news, give her my ♥ 
o    
o   What great news! 
o   I love you guys! I hope recovery goes well, I miss keeping you company during these hospital visits. My heart and prayers are with you. 
 Bottom of Form
Posted:  Evening of Thursday, May 17th
she had to sleep with her balloon!
Update #4: We are settled in our room and Caitlyn is still asleep. This is really unlike her to sleep so long after sedation/surgery. We are having an issue with her O2 stats dropping and staying low. She does have a pain pump and is on a constant drip of morphine so this may be contributing to both her excessive sleepiness and her oxygen levels. The nurse is calling the pain management team now to discuss slowing her dose down a little bit. Also, she is losing quite a bit of fluid and blood into her VAC so the possibility of a blood transfusion is increasing by the minute. I will update if anything changes. Thank you all for the continued support! Now if only I had my damn wallet! 
  o   Debbie: prayers and hugs your way!!!
o   Sondra Gruenwald: Thanks Debbie, we are still fighting these oxygen levels, ugh!
o   Hey you how is baby girl doing? Keeping U n ur Family in my Thoughts and Prayers. Wishing my Little Peanut and Quick and Full Recovery. Let me know if you need anything.
o   Hannah: Sending prayers/good vibes your way.. And let me know if you ever need/want company on a hospital stay.
o   Sondra Gruenwald: Thanks! And we always want and need visitors! We are so far from family that most dont make the trip down. But we are here for two to three weeks if you would like to come be bored with us! Lol
o   Hannah: Which hospital are you at?
o   Arianna: omg thinking of you guys llove you and praying for you always <#!!
o   Sondra Gruenwald: ‎Hannah: we are at the childrens hospital in milwaukee, right next to the froedert hospital and clinics.
o   Sondra Gruenwald: ‎Arianna: love you dearly!
o   Lord we pray for your healing power to permeate Caitlyn.
o   Ohhhh gosh I am praying for Caitlyn .....you both have such strong souls... You are both warriors♥

Posted: Early morning hours of Friday, May 18th
Caitlyn still hasn't peed so we are talking to the resident on-call about putting in a folly, she is in quite a bit of pain which breaks my Mama's heart, and now she has started with a little bit of a fever. I'm so tired I just want to sleep but now I'm just focusing on her so my eyes will have to wait their turn.
o   Thinking about yall!
o   Crappy, but at least it will take away some pain for her. Did your docs reduce the morphine drip? Hang in there lady.

Posted: Early-morning of Friday, May 18th
Caitlyn has had a pretty rough first night. We did reduce her constant morphine drip but her oxygen levels have still staggered on the low end. She continues to have muscle spasms that cause her quite a deal of pain, we will discuss using a muscle relaxer with the pain management team this morning. She slept all day and now all night. Waking only for two banana popsicles, when they put the folly in, and briefly when she has pain. She is now on oxygen through a nasal cannula and she is wheezing quite a bit, especially in her right lung, I pray this is not the onset of pneumonia. 
o   Heavenly Father....we just lift Caity up to right now Lord, touch her little body....and heal her ....Lord You have said that if we come to You in 3or more....well Lord Im sure there will be and are plenty of us that are praying for her and Sondra. Please touch her body and heal her and take these muscle spasms away, and clear her lungs, and take away all her pain....Lord keep Your calming hand on Sondra and Peter as they stumble through thos ordeal with their baby girl. They are very good and strong parents and can come through this!! We thank You for ALL that You do and for Your healing power.......in Your name we pray......AMEN!!!! 
o   Lord nothing is impossible for you! We agree for Caitlyn's lungs to clear and pain be gone in Jesus Name. Caitlyn's muscles relax and spasms stop. Mercy and goodness will follow this family all the days of their lives. Peace be still.

Posted: Mid-Morning of Friday, May 18th
Her tears and cries of pain cut clear through my heart, without a second thought I would trade places with her...if only it were that easy
o   ‎:( hang in there girly, I know if I were you I would feel the same way, but its when Caity sees you breaking down, that's when its going to make it hard on her. Just take a deep breath and know that you are doing this to better her in the future! Give Caity my Love and if u ever wanna chat you have my number.
o   so sad about that...give her a lot of hugs, it´s not going to be easy, but you have to be strong girls!!!! you can do it!!
o   I'm so sorry you have to go through this. But it will all be worth it. Just try to be strong for Cait ♥
Thank you Leeanna for making this for me!

Posted: Late-Morning of Friday, May 18th
poor girl is out and about but not feeling the best
We were actually able to get Caitlyn out of bed and into a wagon for a walk. It wasn't easy and I'm sure it was painful but she really wanted to go for a ride, so we did! She still hasn't eaten anything but I think that will come with time. She is off the nasal cannula, for now, and doing really well. So far, no blood transfusion, I think we are going to do another CBC later and see where her levels are at. She is in bed now but having a hard time sleeping because the morphine keeps making her body jerk and then she cries out in pain...it's like a catch 22. I will update again after we see Dr. King and Dr. Kelly (her oncologist) this afternoon. Thank you all again, for your continued support, prayers, and kind words!

Posted: Early-Afternoon of Friday, May 18th
What a horrible day this has been. The morphine is kicking Caitlyn's ass. The poor girl jerks and jerks in her sleep and she scratched her eyes so bad that she started pulling her IV out. It took every ounce of my being to not take the chocolate pudding cup and throw it against the wall. I don't know what to do for her! And then I turn around and get frustrated with her when I know she can't help it. Oh, damn. She is FINALLY calm and settled...still jerking but the pain team ordered a different medicine other than benadryl to help her (because the benadryl didn't do a damn thing). Why does she have to go through this!? We have only been here a day and I'm ready to pack her up and run away! 
o   Mary: Try to stay calm Sondra. Caitlyn can sense your anxiety. Play music or take a walk for 2 minutes. I remember when I came out of brain surgery and was on my way to neuro ICU there was one nurse who calmly told me I was going to be better! Her encouragement gave me peace to make it! 
o   Sondra Gruenwald:  Music is a wonderful idea. Louise keeps telling me to leave for a while, I just can't. I feel like I fail her if I just turn my back and walk away. Maybe that stems from my mother when I was a child. Either way, I can't just leave her. I took a moment outside the room and called Peter. He let me vent and cry so now I feel a little better. We have only been here a day and I already feel so drained...how will I make it for 2-3 weeks? 
o   Mary: You are a great mom. Don't look back! Never compare yourself to anyone. You are confident and capable. God chose you to be Caitlyn's mom because He enables you to love her. We all had mom's and had difficult times growing up. Each time you forgive yours and others mistakes from the past you grow more to be like Jesus. His love is perfect and overcomes fear. Do not fear for you, Caitlyn or Pete. He will never leave you nor forsake you. He is always with Caitlyn...take a breather and show her you are confident. Love you.
 o   Peter Gruenwald: You don't have to make it for 2-3. You just gotta get through One then I'll be there with ya babe. I'll do everything I can I promise. Get what sleep you can and know you are and have been doing the right thing. Caitlyn will thank you for this for the rest of her life. Kisses. 
o   All I can say is breathe and then breathe some more. Sometimes you have to take things day by day and other times its hour by hour or minute by minute. This "IS" hard but just think about how much better she'll be when she's healed. You are an amazing mom!!! It takes some pretty special people to deal with kids and stress like we do. You CAN do this!!! Sending hugs, love. Prayers, and everything else!!!

Posted: Mid-Afternoon of Friday, May 18th
Finally snuggling with Caitlyn. That's all the poor lover wanted, was to hug her mama. If feels good holding again and having her sleep in my arms.

Posted:  Evening of Friday, May 18th
after all that, that horrible night and day, and Caitlyn didn't want to sleep with me, she wanted Grandma instead. Kinda breaks my heart 
o   Arlene: Sometimes i thought I saw my daughter's heart break too. I truly believe that a child who has suffered allot is close to Jesus and knows when mommie needs a break and needs more energy and who in the room needs to be able to give or be given to by the child. Don't worry she'll always want you when she is at her worst. She knows who takes care of all her needs all the time. 
o   Peter Gruenwald I second that. 
o   Mary:  Get your rest and be thankful Louise is there. 
o   Sondra Gruenwald I agree Arlene I just felt hurt, stupid I know to feel that way from a 2 year old, but I did nonetheless. But 20 minutes later she woke back up and asked for Mama to sleep with her. :o) I said,"Don't you want your Grandma?" "No, my Mama sleep in the bed." I can't stay mad for long with a sweetie like that! 
     Mary: I am incredibly thankful Louise is here. I don't know how I would have gotten through today without her. She is a blessing in my life, one that I will be forever grateful for! I will be so sad to see her go on Sunday. :o( 
o   Arlene:  Feelings aren't stupid, we can't help what we feel. I just know that when I am stressed and overly tired my emotions seem to take control and get the best of me. You are a mom, so strong even in your weakness. God certainly is with you.
Posted: Late-Evening of Friday, May 18th
We are having a MUCH better night. The morphine is finally leaving her system and her body spasms have slowed down drastically. She still has them but at least they aren't causing her pain or waking her up. The nurse came in a while ago so Caitlyn could have a dose of medication, I woke her up and asked if she could sit up to take her yummy medicine, she says, "sure mama," and sits herself right up in bed! HUGE improvement from this morning and amazing since her incision goes all the way into her groin and almost to her left flank. Hopefully, she does well over night and her pain stays at bay. She is still itching her eyes, belly, and mons quite a bit...I really do think she is allergic to the morphine. She did just get another dose of meds in her IV to help with the itching, let's pray it works better than the damn benadryl did! 
o   Thinking of you guys. Hope you guys get some sleep. Keep us updated. I will continue to pray for the little angel.

Posted:  Late-Evening of Friday, May 18th
From across the room, in a hospital bed, I hear the most beautiful sound coming from the most beautiful girl, "Ahhhhhhh." As if sighing in relief at last and a good, uninterrupted, night's sleep. Sleep sweet my sunshine-babe.

Posted:  Early-Morning of Saturday, May 19th
What a wonderful night Caity-bug has had; in fact, she is still sleeping soundly. She woke up only once, at 4am, to get a dose of medicine. She was so sweet and so good about it. Then I told her it was time to go back to bed and she laid back down and had to have her grandma's blanket. After laying back down myself, I hear her from across the room, "Caitlyn have her animals? Mooooom, I have my animals, please?" So of course I got up to give her all her stuffed animals. She fell right to sleep after. Praise the Lord I have my girl back! 
o   Sondra Gruenwald:  Rise and shine my pretty girl. She woke up and decided to play and talk with herself for a while...I miss listening to this when she was a baby! 
o   Lean not on your own understanding...His ways are not your own. He is good all the time. Rejoice and be glad. Love is your greatest weapon.

Posted:  Mid-Afternoon of Saturday, May 19th
Caitlyn's CBC levels were pretty low. She is now getting an adult size unit of blood which will take about three hours to transfuse. 
o   Arlene:  We really didn't mean to stay so long. Caitlyn is precious and so cute. She is a very strong person, taking things in stride. I really meant to talk to you more Sondra, so that I could have gotten to know you better while we were there. Louise has got my number, so if you want to chit chat call, I don't work. Hope she feels better after the transfusion. she must have felt so drained. You are a super mom. 
o   Sondra Gruenwald: Thanks Arlene! No worries, we really enjoyed your company!! Louise told me that she has your number and please feel free to come visit this week if you want, I would love to just sit and have adult conversations once Louise leaves! :o) The transfusion is going well, she isn't having a reaction which is good because she has in the past. And she is still sleeping soundly - she needed it. 
o   Arlene:  Really enjoyed being there. Called up my daughter Jennifer and asked her to have Sophia draw a picture for Caitlyn and send it to her, hope she follows through with it. Take care, I know that I'm going to miss Louise this week allot. It was so good to see her. she has always been so special to me. 
o   Arlene:  I feel honored and blessed by you allowing us to visit today. 
o   Sondra Gruenwald: I'm glad you both were able to reconnect, I could tell it was really nice for you and her. And THANK YOU for coming, it's nice for Caity to get visitors, especially since our family lives so far away. The dress was beautiful, too! And thank you again for the book!!
Caity found a star but couldn't find "her" moon

Posted: Evening of Saturday, May 19th
had a wonderful walk outside with Caity tonight in the cute little garden at Children's Hospital of Wisconsin. The air was warm and breezy and Caity-bug didn't want to come back inside. I think another walk like that tomorrow night will be really nice for her, especially since she is able to use a wheelchair instead of a little wagon!

Lovin my girl!

No comments: