One week from today, my daughter A will go into the operating room. She will be seen by 3 doctors: her ENT doctor will scope her trachea to see if her trach is ready to come out; her GI doctor will scope her esophagus to check for signs of reflux; and a surgeon will REMOVE HER FEEDING TUBE!!!!!
I am trying not to get my hopes up that her trach might come out this summer. Actually, I don't have a good feeling about it at all. So I'm not focusing on the potentially dreaded ENT news...I am focusing on the fact that regardless of what happens with her trach, a week from today she will have one less tube in her body. We've worked really hard for her to get her g-tube (feeding tube) removed; I thought this day would never come.
She will have to spend one night in the hospital (mainly for observation due to possible infection). I am nervous about that. As hard as it may be to believe, A hasn't really been in the hospital much. Yes, she was in the NICU for 12 weeks. Then she got her trach put in, and was in the hospital for another 4 weeks. And she had her cleft lip repaired and was in the hospital for one night after that surgery.
But that last surgery (the cleft lip repair) was in February 2007, at age 7 months. AND SHE HAS NOT BEEN IN THE HOSPITAL SINCE!!! Even though she has gone into the O.R. the last two summers for her ENT to scope her (and look at her trach), both times have been out-patient...we were home before lunchtime both visits. This will be different, as the surgeon insists on the overnight stay. It's a small surgery---she will be putting a stitch or two in A's stomach to close the hole up, and a stitch or two in the skin on her tummy to close the stoma--but surgery nonetheless.
What I'm most nervous about is that A won't understand she is going to the hospital. She has no experience going inpatient (in her recent memory) and I don't think she would understand if I explain it to her beforehand. I should take A on a pre-op tour of the hospital. I just found out that they offer one every Wednesday evening...but the next one would be the night before her surgery, and I want her in bed early to rest up. It's from 6:30-7:30, so we wouldn't get her home and in bed until about 8:30...and her normal bedtime is 7:00.
I am planning on going to Target and buying fun, new things for her to do in the hospital--coloring books, stickers, etc. I hope this helps. And I will be there the entire time. I won't leave her side all night unless I have someone else there (my husband or my mom) to relieve me.
If anyone has any pre-op suggestions, I'd love to hear. I'm nervous...but super-excited to get this feeding tube finally removed!
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5 hours ago
I am so happy for you guys! Sending you majorly positive healing vibes :) Please keep us posted on her progress
ReplyDeleteI expect specially-made products already exist - books that prepare children for surgery. Childlife specialists in hospitals often have toy-like materials to prepare children for medical procedures. Is there one at your hosp? In lieu of those, a soft dolly that you can use to teach her with - use markers to upgrade the dolly to have a trach and stoma.
ReplyDeleteTalk about sleeping in a different 'special' bed. Tell her you or someone else she knows will be there even while she is asleep.
Sending good thoughts (I call prayer) for a good outcome for both of you. Barbara
Totally understand the nerves but just trust she's in good hands and that all will be fine. Children are more resiliant than we often give them credit for. I would tell her honestly, with as little detail as needed, about what will happen and that she will spend the night in the hospital. With Paulo I've found that answering all of his questions, even the tough ones, helps ease his mine.
ReplyDeleteNext Thursday will be a GOOD day!
ReplyDeleteKeeping eyes, toes, arms, legs, fingers all crossed for good luck! Hugs!!!
ReplyDelete