Today has been tedious.
We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!
Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.
We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.
Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.
Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.
He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?
It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.
I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.
The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.
I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.
Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!
Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.
While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.
I love each of them and I tell them several times a day. I love them, always, forever and no matter what.
~Stephanie
7 comments:
Hi Stephanie,
I just read your last 2 posts. I'm sorry you didn't get any answers right away. I'm also sorry you didn't get to see the specialist while he was an inpatient, but in the same breath that's great. His c-diff cleared so quickly that you all are able to return home before the gastroentonolist could see him. Even though that is EXTREMELY frustrating, that says two wonderful things about his situation. One, his case is not so severe that the team had reschedule everything to see him. Second--most importantly to a mama--Xander Healed Quickly!!! C-diff can be really nasty, but once he got proper treatment he recovered quickly. He is strong! When Christina got a cold, she would litterally be in the hospital for months. Her little body could not fight anything. He spirit was strong, but her body was very weak. Xander is a strong boy and he's going to ok!
Going home is a wonderful thing; especially if his reluctance to eat has anything to do with his setting. My prayer is that he will feel so much more comfortable with everything returning to "normal" that he will begin to eat better. Ie... he's at home, you're at home, his brother and sisters are home.
If not, an NG tube might help take some of the pressure off. You all can relax more knowing he is getting the nutrician he needs and he can recover from the trauma he experienced when he was so sick without the pressure of having to eat. If Xander does need an NG tube, I would be happy to be your NG tube replacer and/or helper. That's the really annoying part about those things...they come out! Once you get the hang of it, it's not a big deal to put it back down--but it takes a little getting used to. Christina never ate by mouth. She had an NG tube for about one and a half years, so both Brooks and I are very comfortable putting them in place. Don't hesitate to ask for help! I can help you or do it for you, either way. My prayer is that you don't have to deal with it at all, but if you do know you have a resource who is ready and eager to help.
Our prayers are constantly with you!
Love in Christ,
Lesley Brendle
(((HUGS))) Praying that having all the kids home will help Xander and you both to feel better. Perhaps getting back to some normal time with everyone will help him.
debbie (momys)
Continuing to pray for all of you!
Terri (blessdinpvco)
Lesley- Xander's Cdiff did not clear, it only showed improvement. He was still released and we have continued treatment at home. The original plan was to treat him for the cdiff until it was much better and then have gastro consulted, but a busy body resident jumped the gun and that is why they refused to come see us.
I'm reading this a day late. How did your appointment go today? I hope you got to "see" your bean on the U/S today! Still praying!
Hey there Steph,
I have been following your blog some when I have a minute. I was just reading all your posts this morning and saw the mention of Cdiff. Has this been cleared up yet? This is a REALLY hard thing to get rid of. My grandma had this 5 times in the past few months. Have you tried a probiotic with the antibiotic?
Jess
Aren't residents wonderful;) I actually had one try to argue with me that nothing was wrong with Christina when I knew she could not breath and was coding!!! That didn't last long. Mama bear roared and the entire PICU came to Christna's room. They revived her and resident who "knew more than mama" didn't argue with me again.
It's hard. They mean well, but sometimes well-meaning help can actually make things more complicated...especially when a specialist is needed. Residents are supposed to take care of the patients with "ordinary" problems so the specialist can focus on those who need them most. Unfortunately that isn't always how it works. Sorry you had to deal with that. There are many benifits to going to a teaching hospital...that is not one of them!
We are praying for you and the doctors as you see the specialist tomorrow. Carry with you all Xander's information and a positive attitude. Just because you have had bad experiences before does not mean this will also be one. Perhaps these are the people who can finally help Xander. Don't worry, God will take care of all of you.
Love in Christ,
Lesley
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