Tuesday, December 28, 2010

Another Day, Another Rollercoaster

bath time beauty

So here's how the past 5 days have been:

Thursday, December 23rd: 
Lamp goes in for surgery.  She gets a g-tube inserted into her stomach.  Lamp doesn't actually need to feed through her g-tube, but since her stomach is folded up on itself the g-tube is being inserted to tack the stomach in place and attach it to the abdominal wall.  Surgery and recovery are not particularly fun.  Lampy is on morphine and is sad and confused.  We have a bad overnight stay in the hospital.  Boo!

Friday, December 24th: 
Lamp wakes up in a good mood.  She seems to be making rapid improvement and seems quite happy considering she now has a large tube running out through her tummy.  Once we're given the green light for Lamp to eat she starts out slowly, but eventually starts eating well.  She continues to improve through out the day.  Things are looking so good she gets to come home much earlier than anticipated.  Lampy comes home Christmas Eve.  Yay!

Saturday, December 25th: 
Christmas Day.  Lampy is doing well.  We're all in high spirits and having a good day.  The gifts were bounteous and plenty and all are happy.  Yay!  

Sunday, December 26th:
Lamp has a bad night.  She seems extra fussy.  Not sure what is going on but we decide to up her pain medication again to make her more comfortable.  She's not eating well and we can tell she's in pain but we're not sure what to do.  Boo!

Monday, December 27th:
We take Lamp to the pediatrician who tells us that her g-tube site looks fine and is healing well, but she has a nasty ear infection.  Since she was already taking antibiotics for a previous ear infection and it's clearly not working, we switch meds and start her on a new round asap.  Later in the evening she seems to be feeling better and once again sleeping well.  Yay!

Tuesday, December 28th:
Lamp is doing better.  She wakes up happy, chipper and eating well.  But her g-tube seems to have a lot more drainage around it.  So much drainage that it soaks through the gauze, tape and her clothing.  This is definitely not normal.  After feeding little Lamp, I watch the contents of her tummy spill out through her g-tube opening.  I quickly assess that the g-tube is leaking.  I then spend the day talking to residents, doctors, nurses, and assistants trying to convince them that the g-tube is leaking.  They don't seem convinced and our surgeon is out of town.  So once again I'm ushered back to the hospital, dropping big sister off at a friends house on the way, to take more imagining and to meet with another surgeon.  After the radiologist again dismisses the leak as no big deal, we go up to surgery where the surgeon on call proceeds to watch me feed Lamp as her stomach contents dribble out all over the place.  Finally the surgeon sees that yes the g-tube is leaking and yes this is a problem.  We're taken back to radiology where Lamp's g-tube is taken out and a new one is put in with just a little topical ointment to dull the pain.  We're now crossing our fingers that this g-tube doesn't leak and stays in place.

Once again Lamp did great.

And once again I feel frazzled.

I try really hard not to whine and complain, but it's hard to watch your baby girl go through so much and not feel a little overwhelmed and exhausted by it all.  I hate seeing her in pain.  Additionally, I don't mean to overstate the sweetness and calmness of this little one, but I don't think I'm being hyperbolic either.  When we finally got home from having her g-tube changed, she was hungry, tired and hurting.  As I was getting her ready for bed she was crying.  It was her painful cry.  As I was rushing around trying to get her medicine, clothes and other things ready I stopped by her crib for a second to try and calm her.   I started to sing.  She stopped crying, then looked at me and smiled.

She. Is. The. Best.

Yay!

13 comments:

  1. I was holding my breath while reading this entire post because I worry about our little Lampy Lou (and yes, I made that name up myself..hope you think its as adorable as I do!) haha. I am so glad she seems to be doing better.

    Boo for dr.'s who don't listen to mom's! Everyone knows mom's know best!

    I'm glad you fought for your girl and wouldn't take no for an answer! It will pay off! You are a GREAT mom to two AWESOME kiddos!!!

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  2. Wow, it's kind of incredible that no one takes your word to mean something. That is so frustrating, but kudos to you for pushing through, Miggy. If anyone can do that, you can girlfriend!

    So glad sweet little Lampy is such a strong little woman.

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  3. You're a hero! A champion! And one brave little thing. Coming from a mother who stresses out when her child has a fever, I can't imagine what an overwhelming week it has been. I think you're amazing. Here's hoping Lampy's recovery is smooth from here on out:)

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  4. Anonymous11:32 PM

    You are very strong woman,i hope and wish that your baby will never feel any pain.

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  5. Anonymous12:16 AM

    My 18 month old son had to be circumcised, due to urinary problems. Anyway, as the anesthesia wore off they gave him codeine, and he broke out in hives. The doctor said "oh well, you'll have to just give him tylenol" at which I grabbed his collar and told him I'M NOT LEAVING WITH MY BABY IN PAIN! So...they sent liquid demerol home with us to get him over the hump. My husband was in awe at my supreme (however embarrassing) mother lion instincts :) You are of the same Lioness family, I see!

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  6. You are amazing. That child is amazing and precious. Im sorry your holiday was so stressful. Here's to a speedy recover for the little Lampstress and hopefully no more painful cries. xo

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  7. I'm so glad that the problem got taken care of. Lamp sounds like she is one tough cookie. But she is also so sweet too. Sorry that you had to see her in pain again. Hope this time she heals how she is supposed to.

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  8. Oh my goodness, Miggy, oh my word. You're a strong mama and I'm glad you two have each other.

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  9. Linda P.8:57 AM

    I have been following your blog since reading yours and Reagan's interviews of each other. I also have a special needs child, a son, who is now a young adult. You and sweet Lamp have become special to me. I check your blog regularly now. I hope her stomach surgery recovery is smooth sailing here on out!

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  10. Thanks for updating, as I've been hoping/praying that everything is o.k.

    So glad you have things under control. I can't imagine how stressful it's been for all of you. But your daughter is amazing, and she has champion parents. I know you might be sick of hearing "amazing"...but for her to stop her painful cry, and actually smile, as you sing?! Well, that's just unheard of!

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  11. Thanks everyone for the comments of love and support...it really does help to read them and feel uplifted, validated and understood.

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  12. What a little doll baby. She seems like she is an old soul. Like she already gets life...the way she smiles at you through her pain.

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  13. Good night, thank goodness you're taking control of her health care needs. That little lamp is a trooper and a half!

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