Tuesday, September 21, 2010

A Really Rough Day- September 20, 2010

Although it didn't have any of the ups and downs or drama of the last week, today has been one of the roughest days so far.  Lolly has been miserable all day. 

My mom stayed here with Lolly last night, and I don't think either of them got much sleep at all.  Mom and I traded off around 9 this morning- she took care of Sammi at the apartment, and I came to the hospital to be with Lolly.  She was asleep when I got here, and snoozed for a few hours.  But once she woke up, she did not feel good at all. 

She is severely sleep deprived, anxious, scared, thirsty, bored, worried, and she seems to feel just awful.  She can't get comfortable and hardly sleeps at all.  She has pretty much just moaned about 90% of the day.  It is completely heartbreaking to watch her.  She doesn't want to be read to, and most of the time, she doesn't even want to be carried.  She tosses and turns all over her hospital bed, and seems to prefer to have her legs dangling off (perhaps she's forming an escape plan- unfortunately, she wouldn't get very far- she doesn't have any energy to even stand).
Yesterday, our nurse found us a baby swing for Sammi, and Lolly asked to sit in it today.  She dozed off for about 10 minutes before she wanted out and started moaning again.

Later on, she did snooze for a minutes as she cuddled in bed with me.  We were worried about her breathing, and respiratory therapy came in to check her and she woke up.  Since she was extubated on Saturday, her throat is sore, and she doesn't want to cough and get any junk out of her throat.  She hasn't sounded good all day, but did seem to do better after a Racemic Epinephrine breathing treatment (which she HATED). 

She was also coughing so much that she threw up.  :(

Her voice has still not returned completely after being intubated- she's still got a very weak, breathy, hoarse voice and cry.  It's so sad.

O2 sat monitor:
Poor baby girl is terribly bruised all over
Our nurse today was so sweet and carried Lolly while the check changed her sheets (after she threw up):
And a few pictures from last night, Sunday, September 19, 2010:

I got her that green "Choose the Right" bracelet yesterday at church- it goes all the way up on her skinny little arm:
I need to remind her to look at the bracelet a little more often throughout the day (like when she's refusing let the doctors check her, or when she's refusing to drink her formula, or when she's trying to pull her NG tube out).



Now it's 2 a.m., Tuesday morning- I'm finally heading to bed. 
After watching Lolly toss and turn and moan the entire day, she finally drifted off about 8 p.m. tonight.  I drove back to the apartment, nursed Sammi, finally ate dinner, and packed a bag for overnight at the hospital.  When I got back to the hospital after 9:30 p.m., Lolly had just woken up and had pulled out her NG tube (her feeding tube- which is a life saver since she refuses to drink her formula).  The nurses put a new feeding tube in, and a short time later, she'd pulled it out again.  They had to put a THIRD one in, and they had to put "No-No's" on her arms (so she can't bend her elbows to reach it again).  It made me so sad- thumb sucking is her one comfort, and now she can't do that.  :(

So for the past four hours I've been here, poor Lolly has had two new NG tubes placed, and was so miserable that I finally requested some morphine.  The first dose of morphine helped her sleep for about 20 minutes before she was up and thrashing about again.  Her second dose of morphine and Ativan has finally helped her sleep.

It's been one of the hardest days of Lolly's whole life- she hasn't smiled or laughed once today.  I just want to cry and cry when I think of all the terrible things she'd had to endure today.  She just looks at me, with the saddest eyes, wondering why she has do go through so much.  It really and truly is breaking my heart.  I am so, so sad tonight.  And the fact that she will be here for a few more weeks (at least) is making me even more sad.  

Sad day today.  Tomorrow has to be better, right? 

P.S. Tomorrow, I'll tell you about our nurse send straight from heaven (she's been the biggest blessing today!!!).

14 comments:

  1. So sorry Robbie! That is so rough. We love you guys!!! Things have to be better today.:)

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  2. Hoping for a better day today. That just breaks my heart. This must be so confusing to her. You remain in our prayers.

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  3. That pic of the nurse holding her breaks my heart- you can see she is plain miserable. I'm sure it is so hard to not be able to take that away for her. Hang in there, hopefully today is a better day!

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  4. Poor little girl and poor mommy and grandma too! I am glad that she is "with it" enough to be miserable, but that breaks my heart to know that she has not found much relief yet. I hope and pray that tomorrow is a much better day and that you are continued to be blessed with incredible nurses to make this whole experience a little better.

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  5. Break my heart. I can't even imagine the confusion for her. I wish that there was something she really wanted that would make her smile. Sure prayin hard that she has a better day. Mom. We love you and pray that you have the strength to stay happy in the hardest of times. Love you Robbie.

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  6. My heart broke reading this last post. I am so sorry that you are faced with this trial at this time. You have got to be one of the most patient, positive, upbeat person I know, and so to hear the heartache in your words, I know this must be REALLY hard for you. So many are praying for your sweet little girl. I know Heavenly Father will help you through this to help you be strong and to comfort her. It is hard not to be discouraged at this time but just know that you are loved and cared about by so many people. God is watching over you and is aware of your pain. THINGS WILL GET BETTER! Hang tough, Rob! We love you

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  7. Hang in there Robbie and Siri (and the rest of the family). You will have moments of improvement and then something else happens, but those times will pass too. Also, remember it is okay for you to loose it too (but not around Lolly). The one time I fell apart I could not believe how the nursing staff pampered me and took really good care of me. I felt like an idiot, but realized I needed to take of myself emotionally too. Be sure you get enough sleep and rest also. I know it's hard when Lolly can't sleep much, but try hard. You have so many people praying for you and willing to help out. I know PCMC is a great place, however, after a few days it gets really difficult. We love you all.

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  8. Hey Robbie, If she can't reach her thumb, get her a pacifier. It might be a good sub. I want her to feel some comfort any way she can get it.
    If she gets hooked on it, blame me. Hey, I'd even help pay for braces in the future.
    Keep your spirits up. By the way, has anybody told you how great you look sleep deprived and worried. I'm sure it's a real comfort to Lolly having her beautiful mom around....happy face and all. You amaze me!!!! You can even keep the days straight. Me..... I'm just counting the days till your life is normal again. Hope it's sooner than you think.

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  9. ugh...im so sad for you! i was really hoping yesterday would be a nice mommy-duaghter day. my heart breaks hearing how miserable lolly is and i know as a mother it is so hard to watch our children suffer. like alli said, at least she is cognitively "with it" enough to feel the agony, but im praying for a quick end to her misery! you guys are sure troopers, hange in there...one shift at a time. im here if you need me.

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  10. My heart is breaking for Lolly!! I know it's so hard to watch our babies feeling miserable and not having the power to take it all away.

    I love that she has a little spitfire in her. It's going to help her fight this!

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  11. I just need to get rid of this cold sore, and I am there.
    I feel like I am thinking about you constantly. I ache for you.
    Keep fighting, Lolly.

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  12. That breaks my heart, too, that she lost her comfort of thumb sucking - I wonder if a binkie would help?

    I am so sorry for all you and Lolly are having to endure. It sounds so difficult. We will continue to pray for strength and peace for both of you! Sending many hugs your way!

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  13. Robbie, I don't even have words for you. My heart is full of sadness for you having to endure another major medical trauma in your family. Hang in there. There is no doubt in my mind that the Lord is with Lolly and all of you at this time. He loves you and I know He will strengthen you to endure. I love you and pray for continued improvement.

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  14. I am so sorry Robbie! Let me know if I can help out at all. What hospital is Lolly in? I hope that she continues to get better and just know that I am praying for you guys. Hang in there and know that you are strong and have the strength to overcome this trial. Heavenly father knows your limits and turn to him with anything he knows exactly what you feel and are going through. I know you probably don't want to hear that. But I know that you can get through this heard long fight.

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