Monday, March 19, 2012

Day 0 - Twists & Turns


Kayla taking a LONG nap while I watched... just happy to be there with her.

If there is one thing I should know in this journey it's to never expect anything. Nothing is ever promised or guaranteed ever for a reason. I should know this because I see it all the time... every day!

With Radiation, things are pretty cut and dry. They give you your course of action (how many days/doses of radiation you will get). The only time you would not receive treatment is if the M-F is a national holiday or if the machine breaks... which seldom happens. Even if you are sick, you still go in. With Chemo, it's a whole different ball game, which is why we can't say how long we will be here. We have seen it all! You just can't know when until the doctor finally says, "you are free to go!".

Tonight Denny and Kayla were "supposed" to be released to come home. We had a few things going on that were of a concern. One was that Kayla's kidney function wasn't quite what it should be. It's not a huge concern. She could have come home on fluids. That alone would not have stopped her from being released.

The second issue was the pain control. They still didn't have a solid plan. Her tolerance to pain is low... this we know. When her jaw is hurting, she won't eat. So, our pain medicine regimen changed. They are now going to switch her to a P.O. Dilauded. (oral) That way she can go home on pain meds. Her stomach needs to be able to keep it down. We have an IV back up while we are in the hospital still just in case... while we test this new method. Also, she is now on a pain med schedule. Instead of just an "as needed" basis. Even though she was on an as needed, Denny was keeping track of the time and made sure she was getting it around the clock. Still, having it on a schedule should work better. Waiting until she is feeling pain and then giving her relief just takes too long and aggravates her beyond words. We are having a good response to the oral pain relief so far! YAY!  That is good.

Ok, so for our third concern... you all know it. Her weight. She went into this borderline too light. Now she has hit the point of we need to take action. Despite our greatest attempts to get her to eat on her own, she just won't. With this new jaw pain it's even harder. She says she is hungry. Cries in pain because her tummy is empty. When we bring her broth (she doesn't want anything cold), she takes the tip of the spoon and dips it in. She sips and cries. She does this twice and says she is "full". So she gives up. It's painful to watch. I have been battling this weight loss of hers since October when we first noticed she was not well. It's been a fight and a struggle and a stress for me that I can not describe. It's painful. I find myself eating because she won't. It's excruciating to beg and plead and give her anything and everything she wants constantly to have her take one tiny nibble and say she doesn't like it or she is full. I can't tell you how much waste we have had going on since this all started. It's hard to watch... in so many ways. We have explained it in kid terms. We have tried bribes. We have let her cook her own meals. We have had her eat with friends. We have tried the scare tactics where we tell her the NG tube or a feeding tube of some sort will be next. Nothing works. We have tried everything. We do know that she does best when she is home or at least at the Target House. Hospitals almost debilitate her. She goes in, lays on that bed and is "sick".  It begins this fight of getting her the heck out of there to save her. It's so hard.

While I was in with Kayla, the nutritionist came in to talk to us about TPN. They wanted to know what we knew about it and see how we felt about Kayla getting it. It was their recommendation that we do not wait, but start it immediately.  I knew that Denny was against it and was still wanting to try all he could to get her eating on her own. We were both concerned because TPN can be hard on the Kidneys which are already struggling to become "normal" again. I just felt defeated and so tired of fighting to get food into her. It's been a struggle for way too long. I wanted him to go out to the fishbowl where denny was with Anthony to talk to him about it too and answer any questions or concerns that he might have had. I went with him out there and after I had all of the same info he had already shared with me repeated, I decided to go back in to check on Kayla. She woke up and started to cry. I asked her what was wrong and she told me through tears that she is hungry.... of course she is! I asked her what she wanted me to grab her and she didn't know. I asked her if she wanted cold or hot? She said, "hot". So off I went to the pantry to heat up some chicken noodle soup. I watched as she sipped her Capri-Sun so well. I thought maybe a straw could do the trick. So I poured the broth into a separate cup and offered her a straw. I explained how this might help her to get it down quicker and easier...  While she was slowly fighting down sips I told her about the nutritionist and what they wanted us to do. She looked up at me with these sad tired eyes and I explained that her dad was out there in the fish bowl fighting tooth and nail over the fact that he was sure she could eat on her own. That once we were discharged, her appetite would improve. Maybe it would... I know it would... a little. Unfortunately, I just knew this would still be a battle. I told her that her dad was trying so hard to fight for her so that she could continue to fight to eat.  I told her this was when she needs to be strong and FIGHT! Prove that Daddy is right. She looked at me and slammed down her spoon on her tray. She screamed at me at the top of her tiny lungs, "YOU don't know what it's like to have pain in my jaw like I do".  All of her monitors that she was hooked up to started to beep and scream. Everyone and everything was screaming at me and all I could do was sit there and cry with her. I told her that "No. I don't know what it is like to have my jaw hurt that bad. I don't know. I wish I could make it better. I still wish I could trade places with her.".  Just then, the nurses came in to make sure she was ok. It was obvious she was worked up. I calmed her down and told her it was out of love and I just want her to not need this. It was clear to me in that moment that we had been defeated. It was time to surrender to TPN and pray for no complications from it. I told her I love her. She told me she loves me. I walked out and down the hall to meet Denny and see if we could agree on this. As Denny and I were talking, Kayla's doctor on call (Kim... who is AWESOME) came in to check on us and give us her opinion. We all decided it's time to start stepping in and making sure Kayla is getting the nutrition she needs. Her TPN will be administered through one of her lines. She will either carry it in a back pack or hang it on a pole if we are at home. For now it will be an all day feed. If she continues to EAT (which she is still very much encouraged to do) and her weight goes up, she can be tapered off to only needing TPN while she sleeps. I just know that this will help with her energy.

While I was in there today struggling to get my baby to eat, it reminded me of when she was a baby. She was born 4 weeks premature. Weighing in at only 5lbs and 5oz., it was hard to get her to stay awake to eat. I took every precautionary measure to ensure she would eat. My supply was low but I was determined to try and only give her milk from momma. I didn't have a birth plan. I didn't have any expectations, but that was one thing I was determined would go as planned. Well, it didn't. I need to remember that when it comes to Kayla. Despite every effort, the doctors saw that she was malnourished and not thriving. She was scrawny and slept all of the time. As a first time mom, I didn't see it. When I was told that I would have to supplement milk with formula it crushed me. I never had postpartum, but THAT crushed me. I feel defeated.... So seeing Kayla like this brings me right back. I remember the first time she was fed through a tube attached to my finger how crushing it felt to me... but then she started to thrive! Her coloring changed. She gained weight. She was alert. She was ALIVE! So, I can only feel that in my mommy gut, that this is the right move here. We are all exhausted from having this be a core subject for us.  It's time to put down our boxing gloves for a minute and surrender to it. It will be ok.  And it's not the end of the world. It's not forever.... it's just until we leave here.

Typically they make you stay inpatient for 3 days to monitor you. Kim is very confident in our abilities and our diligence with Kayla. They will start TPN tonight at 10pm. (why 10:00? I have no idea) They will for sure have to monitor her for 24 hours. After that, they are confident in our care for her. Also, Kayla will be at the hospital daily for blood checks and G-CSF shots. They will be monitoring her TPN while she is in there and weighing her daily as well.  So, it's been a long day. A long day with a twist. Kayla and Denny will not be home with us tonight. Most likely, they will not be home tomorrow night either. My best guess as of right now is that they will be discharged on Wednesday morning. We will still have full days at the hospital, but the end of the day will be here... under one tiny roof together.

Two new nurses just came on call. We have now had: Ashley, Andrea, Anna, Heather, Courtney, Sarah, Delilah, Jennifer, Beth, Troy, Haley, and Jessie. There will be a new one coming on after midnight tonight. Let's not forget Kim (the fellow), Melinda the TPN nurse, Theresa the CPA, and Janet from PT. They just keep coming and coming...

Kayla was very happy to have her bath tonight, her dressing changed, dinner (a full cup of chicken noodle soup!) and teeth brushed. She is waiting to be weighed so she can go to bed!!! She will be hooked up to her TPN at 10:00pm. Lets hope it doesn't wake her too much.......

Sweet dreams my baby girl, Kayla Rose. I love you. I miss you and want to hug you so badly it hurts.

Our new best/worst enemy

9 comments:

  1. We are behind you and love you every step of the way. I'm sorry you had to compromise but know you will win against the real enemy. Stay strong! You're doing an amazing job of being a mom and looking out for your daughter's best interests. You are always in our prayers. Xoxo, Christine, Morgan, Ryan and Alison

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  2. Oh Annie! My heart aches for you, Denny, and Kayla! It must be so hard for her and so difficult for you both to see and feel this with her. :( I hope and pray that this step helps her in the long run. Kayla and I have so much in common...let's start with our love of cats! When I was in the hospital, my kitty's picture was taped to my IV stand. ;) I was very premature also and Dilaudid was my very best friend throughout my recent chronic pain! I'm sure they've explained how it's so hard to "catch" the pain once it's started, so good for you guys to help keep it at bay. So much easier to stay on top of it that way. I had a combo of that an an extended release pain medication that was released in my system over an eight hour period - the combination was my life-saver. Does heat or ice help Kayla's poor little jaw? Gosh, she must be so frustrated! I hope and pray that this TPN helps her gain some weight and relieves a little bit of stress from your mind. I'm praying like crazy for your sweet baby! Sending lots of love and gentle hugs! xoxoxo

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  3. Gouldy Family - Chris, Jared and JeffreyMarch 19, 2012 at 9:49 PM

    Emotional, long day - our hearts goes out to you all. I feel the pain through your words - stay strong. Our prayers and love to you, daily. Love to you.

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  4. Oh MOMMY HUG from Novato, what a rough day for you all! OMG the screaming in the room must have been one tough moment, I can only imagine, but in that moment came the clarity to move forward! It's not giving in, nor are you putting down the boxing gloves by any means, you are merely listening to your most valuable tool "mommy's intuition", which you know dear friend I believe in greatly as it is rarely wrong. You have not been defeated only "twisted" into a new position or perception that will allow Kayla once again to thrive. Much love and one BIG CYBER HUG :) Jayna

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  5. I am so sorry that it is such a gut wrenching path to get to this point, but I do believe in you Annie and I think you are right. Kayla needs her strength to beat this and we all know strength comes from nourishing yourself with vitamins and minerals found in the right foods and rest. She will be able to knock it out of the park once the TPN starts to fill her up! I love you all so very much and wish we could all fly out there to be with you all during this hard time. TEAM KAYLA!!! ---Nicole

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  6. Gosh Annie, what an emotional day for you both. Your blog last night brought me to tears. I can only continue to pray the TPN gives her the additional strength she needs. And you are right, perhaps this is the next best thing to give her back her energy. Believe in yourself that you are doing the right thing. We believe in all of you! We pray for all of you!

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  7. Stay strong and healthy Kayla Rose!!!!

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  8. I can only imagine how tough this was to write. Thank you for sharing it all with us, so we can send positive energy and strength your way. What a tough decision to make, for all of you. I don't think you have been defeated, but this is just another turn in the road. You and Denny are such amazing parents and have the best team to cure Kayla. I wish there way something I could say or do to help make things better. You are always in my thoughts! Love, Allie

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  9. Thank's for keeping us updated Annie. I think about little miss Beautiful Kayla all of the time. Saying lot's of prayers for all of you. Love and Hugs.Xoxo!!

    Michelle

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