God is in the details.
We have had another amazing week with God revealing His love for Celia over and over...
~A story that I don't ever want to forget, but didn't want to embarrass my boys to share. I decided that I'd risk their embarrassment for this precious story:
When Celia got her Ipad, I immediately texted the boys to share her good news. Justin called me, and says with a trembling voice,
"Mom, we didn't want to say anything but Ryan and I have been trying to get Celia an Ipad for a few weeks now. We just didn't have enough money, so I told Ryan I was shipping mine to her tomorrow."
Two 20-something age boys who tried to pool their resources to get their three year old sister such an expensive gift.
And when that failed, being willing to so freely give away what he saved up to buy and needs for his work.
Can I tell you how much that blesses my heart?!?
What a precious gift that all the girls have been given in those big brothers of theirs!
I love you both boys, more than you will ever know.
~My friend LeAnn, whom I haven't seen for 2 years,(which is a crying shame we are trying to remedy) but who reads my blog went to a quarterly meeting at CHOA with her daughter and saw her GI Doc (In the same practice as the infamous Dr. L) and explained Celia's situation and why we didn't want to start with NG tube feedings. She agreed to take our case, set time aside this afternoon to consult with us, scheduled an endoscope for Monday with surgery next Friday. She was AWESOME and is a fantastic addition to Celia's medical team.
She is having a PEG button surgically implanted (Usually, they do a g-tube and you keep the tube for about 6-8 weeks and then you get a Mic Key button. Because of Celia's involuntary movements, she was convinced that she would pull out a G-tube as easily as we feared she would a N-G tube (nose-gastric) so she will have her button which will be stitched into her tummy directly out of the OR. She completely agreed that Celia was a "wild-card" with those flailing hands and could easily yank a tube.
Yes, I feel vindicated, thank you for asking.
She will probably be in the hospital for 2 nights if all goes well.
What a precious thing that while at a clinic for HER DAUGHTER, that our sweet friend would remember our family and a child she has yet to meet.
What LeAnn could not have known was, the same day she saw her daughter's (and now our) GI, "The infamous Dr. L" as we will now be calling him, called me and told me he was waiting at the hospital and I had missed my appointment for her NG tube placement. I explained to him that I had made it VERY CLEAR to his nurse that we were not comfortable with that as our option and may have to schedule another appointment to discuss further. While I had him on the phone, he gave me a few reasons to why he would not deviate from the NG to G tube route. He wanted to schedule her NG tube placement, and was very insistent that it was done Thursday (today) and all the while the lovely Dr. P was holding a spot for us for today in her office because she disagreed with him and was not afraid to tell him so.
And take Celia's file off his desk.
And review it.
Gotta love a Dr who has no problem challenging another Dr's protocol when she disagrees.
Did I mention that I was right?
You know, just in case you missed that fact.
HA!
Yes, God is in these details.
~A story that I don't ever want to forget, but didn't want to embarrass my boys to share. I decided that I'd risk their embarrassment for this precious story:
When Celia got her Ipad, I immediately texted the boys to share her good news. Justin called me, and says with a trembling voice,
"Mom, we didn't want to say anything but Ryan and I have been trying to get Celia an Ipad for a few weeks now. We just didn't have enough money, so I told Ryan I was shipping mine to her tomorrow."
Two 20-something age boys who tried to pool their resources to get their three year old sister such an expensive gift.
And when that failed, being willing to so freely give away what he saved up to buy and needs for his work.
Can I tell you how much that blesses my heart?!?
What a precious gift that all the girls have been given in those big brothers of theirs!
I love you both boys, more than you will ever know.
~My friend LeAnn, whom I haven't seen for 2 years,(which is a crying shame we are trying to remedy) but who reads my blog went to a quarterly meeting at CHOA with her daughter and saw her GI Doc (In the same practice as the infamous Dr. L) and explained Celia's situation and why we didn't want to start with NG tube feedings. She agreed to take our case, set time aside this afternoon to consult with us, scheduled an endoscope for Monday with surgery next Friday. She was AWESOME and is a fantastic addition to Celia's medical team.
She is having a PEG button surgically implanted (Usually, they do a g-tube and you keep the tube for about 6-8 weeks and then you get a Mic Key button. Because of Celia's involuntary movements, she was convinced that she would pull out a G-tube as easily as we feared she would a N-G tube (nose-gastric) so she will have her button which will be stitched into her tummy directly out of the OR. She completely agreed that Celia was a "wild-card" with those flailing hands and could easily yank a tube.
Yes, I feel vindicated, thank you for asking.
She will probably be in the hospital for 2 nights if all goes well.
What a precious thing that while at a clinic for HER DAUGHTER, that our sweet friend would remember our family and a child she has yet to meet.
What LeAnn could not have known was, the same day she saw her daughter's (and now our) GI, "The infamous Dr. L" as we will now be calling him, called me and told me he was waiting at the hospital and I had missed my appointment for her NG tube placement. I explained to him that I had made it VERY CLEAR to his nurse that we were not comfortable with that as our option and may have to schedule another appointment to discuss further. While I had him on the phone, he gave me a few reasons to why he would not deviate from the NG to G tube route. He wanted to schedule her NG tube placement, and was very insistent that it was done Thursday (today) and all the while the lovely Dr. P was holding a spot for us for today in her office because she disagreed with him and was not afraid to tell him so.
And take Celia's file off his desk.
And review it.
Gotta love a Dr who has no problem challenging another Dr's protocol when she disagrees.
Did I mention that I was right?
You know, just in case you missed that fact.
HA!
Yes, God is in these details.
Hugs, and smiles. And may the PEG tube be a blessing for that little babe, and give her lots of energy and hydration without fear.
ReplyDeleteSounds like a good plan to us, and we are so happy to see the procedure finally getting scheduled. We know it will be a positive development for her. We (and many friends and colleagues!) will be praying for a completely successful surgery next Friday.
ReplyDeleteAwesome!
ReplyDeleteMoms are ALWAYS right!
ReplyDeleteKeep fighting the good fight. God knew you were the perfect mommy for such a precious gift!
ReplyDeleteSweet girl, please please tell me what I can do to help. I may not work on the GI floor but I will find you if you let me know what nights you are there!
ReplyDelete