Gabi is certainly keeping me on my toes. She is so pukey and so gaggy and I was told that was going to get better after the Glenn, and so far she is still suffering from throwing up and choking on the spit up/vomit. I called her doctors and they all said things will get better with time.
One of her home nurses was over a few nights ago and agreed with me that her G tube area was bothering her. The G tube heals up to be similar to an earing hole. Usually when i do my daily cleansing, she isn’t affected by it at all, but all of the sudden she was in pain from tenderness. Called surgery and answered their list of questions and she determined that Gabi probably just yanked on it too hard (which is really hard to avoid because she is so grabby now). She is grabby, gaggy Gabi. Ha! After a few days, it is feeling better.
Starting on Sat evening, she looked really terrible, was breathing fast and very pukey. I checked all my bases, sats, temp, felt her tummy, even listened to her with our stethoscope and everything seemed fine. Today, she is still breathing fast and her night sleeps are miserable, so after smiling a bunch this morning, she is taking a long nap. It is so difficult to decipher whether she is tired, has a cold, even gas, or is her heart failing…
2 side notes:
1. A baby girl named Ellie Potter was born a month after Gabi at CHW with the same diagnosis, HLHS. She is awaiting a heart transplant and she is so very sick. I know her parents well and I pray for strength for them and for courage to hold their little Ellie tight as long as she is with them here. Their website is elizbethbrianne.com.
2. THE COLTS WON!! We are beyond the Colts’ biggest fans as they are family. Literally family. I am so thrilled for the entire Colts crew as they head to another Superbowl victory!! Although Ethan and I are SO SAD that we weren’t able to attend the playoff games in Indy because of Gabi, we were just as excited at our own party feeling blessed that she was sitting on my lap and Ethan was teaching our 2 boys about football in our living room. GO COLTS!!
have a wonderful week!
Love,
Teri
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Hi Teri,
Sorry to hear about her discomfort with the g tube. I know all to well..Honestly, it took Ben MONTHS to adjust and he was uncomfortable at every cleaning etc. Funny, I don’t remember my earrings taking that long. He is finally used to it, but as you said, the more active they are, the more opportunity to pull. We put a frog on the actual site during feedings and one on the line so he can’t get to it. Did I say Frog? Hmm whereever did I get that from? I hope all is well, hope to see you in March at the Buchmann’s event!
Teri,
Lydia had feeding issues for a couple months after the Glenn before they got better….unfortunately the Dr.’s are probably right with that one….I counted every calorie and made myself sick over it..infact…I took her to the ped’s office a few times too over it! Eventually time did help a bit as did me calming about it…..per her Cardiolgist’s orders otherwise I would have just kept on freaking out about it.
I know how you feel about the other heart kids…this a wonderful family to be part of but also a hard family to be part of….I will pray for Ellie’s family and for her. Sometimes things don’t make sense nor do they help you feel a calm but overall this is a ‘heart family” of strength either way it goes…….
Lydia had fast shallow breathing when she had an effusion have they checked that out? Probably not likely this far out from surgery being over a month by now….just a thought. Is she still on Lasix and Aldactone….every kid is differnent….just trust your instincts and in the medical staff together…I will pray for an answer soon and for it to just go away as well……..I’ll do a little food dance as well!!!
Lydia’s development was behind as well…she too caught up a few months after she should have reached milestones…with Gabi’s time in the hospital I bet that OT and PT expected that. We too worked with OT and PT and Speech Therapy (feeding issues). I love those ladies!!!
Prayers for all things good Gabi’s way!!!!!
Heart Hugs,
Lisa Butler
Cincinnati, Ohio
carepage: Lydiasjourney
Hi Family~ I am glad to hear that Gabi is still home! I have been praying for “the girls” Gabi, Ellie, and my Lilly daily…not that I don’t pray for everyone else, but we have the GIRLS! Hope to see your family and the kids at Wings of Angels event in March! Prayers still coming!! Love you all Heart hugs XOXOX
The Gesler Family
Paul, Naomi, Dylan 2years and Lillyann 10months HLHS
Thinking of you always!! love you