Being sad about Danny…

After an overnight of way too many pokes (IV try, blood sugar, IV try, blood sugar… see a pattern??) things finally calmed down at about 4 AM… and transport arrived at 5:30 to take Danny to the OR.

Danny was too tired to be nervous.  He just wanted to be left alone for a few minutes to get some more sleep.

but in the preop holding area things are too bright and busy to allow a good nap…  

“Danny, I need to check your blood pressure again” 

 “Danny, I’m the CRNA who’s going to be taking care of you, can you tell me when you last ate?”  

 “Danny, can I scan your bracelet?”  

“Danny, I’m the anesthesiologist who’s going to be taking care of you, can you tell me when you last ate?” 

“Danny, I need your mom to sign some forms” 

“Danny, I’m the nurse in the operating room who’s going to be taking care of you, can you tell me when you last ate?”  

ARRGGHHHH!  Two hours of this was more than we could take.   On the other hand, I was not particularly eager to have them wheel my baby away either.

Danny really is in that bed… if you look closely you can just see the very top of his hair.  He looked so little.  But he was seriously brave.  Most of the time they give kids a dose of a sedative called Versed before taking them away from their parents… it’s better for Danny’s breathing if they don’t give it to him, so he just gets wheeled back wide awake.   Here’s how wide awake he was:  He likes to count backwards from 100 while the anesthetic drugs start working, and the first thing he always asks is what number he got to.  This time he decided to count by twos and got to 72.  They were all impressed 🙂

 Once the surgery was done, they came out to show me photos from the endoscopy part.   Poor Danny.  His esophagus is just a mess.  He has scars and bumps and erosions and even abscesses.  They took lots of biopsies and had a bit of a challenge getting the bleeding from the biopsies to stop. 

Eventually we got back upstairs.  Danny has such a sore throat!  Between being intubated for anesthesia, the endoscope, the biopsies and all, he is really hurting.  Popsicles help, and jello sounded good…

We eventually got to go home… there are advantages to having just about as much medical equipment as a peds ICU in your boys’ bedroom… and we decided not to start any drastic therapy for his esophageal troubles until we get the biopsies back.  

But I’m sad.  Danny puts up with so much already, and none of the treatment that he’s going to need for this is easy or fun.  Plus they will re-scope and biopsy in three months.  They didn’t do anything to fix his feeding tube troubles because of all the inflammation… my hope, though, is that if they can use the biopsy results to guide treatment, he’ll be in less pain, and that would be nice…

For today, it’s naps to catch up on our sleep, a little yardwork for the boys, some brainstorming to think about special foods that Danny might like (that are soft, smooth, not acidic, very low protein…) and maybe even another nap… tomorrow is infusion day for me, so it might be smarter to be proactive with laundry… hmmm…

20 thoughts on “Being sad about Danny…

  1. How hard it must be to see your little one go through this…you guys are in our prayers! Prayers for clarity and peace. Hug on those little ones today and rest in Him! 🙂

  2. Hugs to Danny. Hugs to you, too. Laundry will wait. I think you probably need the nap more.

    Today is the first day of Sock Summit. I met you two years ago in a class there (Cat Bordhi’s?), and gave you some Sox Stix. Thinking of you today, and praying for your family.

  3. Tell Danny that many people are thinking of him, which doesn’t ease his physical pain but hope he likes being supported by your invisible online friends.

  4. Oh, Danny. Thanks for the update– I’ve been thinking about him nonstop. Praying the pain gets better and you all get some needed rest.

    Kristi

  5. My thoughts and prayers are with Danny, you, and your whole family. May the Lord hold you all in His loving arms.

  6. I will definitely keep him, and all of you, in prayer!
    Is there any way they could give the little guy a port? I have one, because I am awful to stick (and all my veins are scarred over), and it makes life SO much easier…

  7. I don’t even know what to say. It just sounds like too much. May
    God bless your sweet boy. I will continue to pray for him and for you. +JMJ+

  8. Oh, Elizabeth. It can all be so hard, and I am so sorry. As ever, I am holding you and Danny both in my prayers. Prayers for healing and peace and courage to endure that which you are given are gently winging their way to you from the sunny midwest.

  9. Broken <3. Danny is one of my heroes. Much love to him and the whole family. May God hold him tightly through this and his upcoming ordeals.

  10. Poor fellow. I am glad he did okay with the surgery, but it must be so hard for him now. He is in my prayers. I hope his esophagus feels much better soon.

  11. Just want you to know you and Danny are in our prayers. Hopefully the doctors can make Danny feel better soon! I know his mom has some special talents in that area!

    Glad you’re back home trying to get some rest.

    Love, hugs and lots of prayers!

  12. Pingback: It was the best of days, it was the worst of days… « Keep on Spinning

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