Well I had plans for today but they all got shelved....
Checked with our pediatrician and Selah grew THREE bugs out of of trach sample. Soooooo.....as I was on my way to the dealership to get some stuff done on my van, I turned around.....
He wanted her to be on Cipro or she had to go to the hospital for an IV. Since we had gone through it with Cipro already, I talked to the pharmacist about it and he actually called the manufacturer and found out that Cipro can't be given through a gtube because it does not interact with the body correctly that way. Evidently it needs to work all the way through the digestive system to be effective. So our doctor put her on another drug, it's new and our pharmacy didn't have it.....but one 25 miles away did. So I drove through a storm to get it. I called the nurse and Selah was having her own "storm" UGH!
We are hoping this medicine will work and clean her out. I am frustrated.....if you remember JUST TWO weeks ago, she was released from St Joe's...the doctor basically did it against my wishes. Since that was her THIRD admission in just six weeks, and each time she tested positive for the same stinking thing....I did NOT think just a little amoxicillin was going to keep her healthy....so now only one week after finishing the bottle, she is sick for the FOURTH time since the first of April. To say I'm ticked off would be an understatement!!!!! I can assure you, there are quite a few adjectives that are in my mind as I am typing this that are not wholesome.....nor am I adding them....
I'm MAD because there is such a lack of COMMON SENSE in the medical community.....I saw this with Sam when he was little and I knew I'd see it with Selah. In my opinion it is worse in the South (in Florida) than up North. I could be wrong but having experienced health care in NY with Sam and Selah....I can at least say in our situation that has been what we have seen.
IF the doctors had listened to me when Selah was admitted the SECOND time for the same thing...maybe this would have cleared up. Maybe if they'd listened to me at the THIRD admission for the same thing, maybe this would have been cleared up....but NO! They would not listen to me OR to Selah's regular nurses (each time they went with us when she was admitted) The doctors were too busy either trying to turn it into something more than an infection (in one case calling in both neuro and cardiology twice-because of the storming that happens when she is sick- and that has been documented) or in the other case acting like I was making a mountain out of a mole hill....
So common sense does not prevail and who suffers??? My little girl...not the doctors who made stupid decisions and wouldn't listen to me but this little girl and that is what makes me MAD!
So she has been sick since Thursday night, it keeps her from progressing, she feels bad and she has neurological storms and has to take more meds to keep her calm. Now if this new antibiotic doesn't work, then she will be admitted once again. I can assure you THIS time someone will listen to me. Selah HATES the hospital and she regresses just being in there! She stiffens up, she gets jumpy and has many more storms.
I've thought about IF she has to go in taking her to All Children's but then we are further from home and having to start all over again. To be honest, Sam was in there several times and each time something happened to him that was NOT good! So it is not really where I want to go with her and they have residents and interns which just annoy me to no end.... There is a hospital in Orlando called Neumores but we tried to get them to take Selah so we could transfer her down here from NY and ALL they wanted to talk to me about on a conference call was their "nursing homes for children" As you can imagine I told them quite bluntly they were wasting my time and their time.... It was not a pleasant conversation. So I have no big hope for them either.
I'm sure I sound like a WITCH and will probably get a few emails telling me how nasty I am.... well I can promise you, you ain't seen nothing till you see me fighting for my child. I am not ashamed of it, I know God has given me wisdom (but for some reason, absolutely NO Tact) and I go with my instincts. I am seldom wrong about things that I feel in my gut. I've known since Selah's first admission with this crud that she needed something strong to get rid of it. I should have pushed harder this last time but I didn't. As it was, they had a social worker talk to me about their "discharge plans" I believe they did it to try and intimidate me which did not work. They did not threaten me in any way, but there was the feeling that I was a "problem mom" who thought I knew more than the doctor. Which I did.... We did want her home and felt she was more upset being in the hospital and hoped that if she got sick again we could manage it at home.
It's not like I'm home with her alone, we have 24 hour nursing, two different shifts a day so medical professionals are taking care of her and they could tell if she started to take a turn for the worse. Plus they are only working with Selah and they know her, they know her normals and what is not normal. But amazing no one wants to listen to them either!
We have a good pediatrician but once she is admitted, he is out of the picture until she is released. That is how it goes..... If we can keep her out of the hospital, she has an appointment on Friday with a pulmonogist. Our pediatrician wanted her to see him so maybe she can be put on a long term antibiotic so we can get her well, then work her off the trach and hopefully be done with it! Alot of kids get infections in their trachs no matter how clean things are kept, it is an opening in the body that doesn't have any natural defenses. So maybe that will be the answer for her.
So I am beyond frustrated! It would be easy for me to just put her in the hospital and let them deal with all the ups and downs of her being sick. We can't be there all the time, so I wouldn't have the minute to minute worry about her. Heck it gives us a "break" BUT it is not about us! We want to do what is best for her and she just freaks out in the hospital plus being in the hospital puts you at risk for so many more germs!
What should have happened at her last admission - the THIRD one for the same thing- was she should have been placed on IV antibiotics and sent home. I already had cleared it with the home health agency, it could have been done. Then the antibiotic would have been strong enough to totally clear out her system. The first doctor she had agreed with me, but then before the process could be started, a new doctor rotated in and called in several specialists (for no NEW reason) and once she was cleared by them....(for cardiac and neurology) he felt she was fine and should go home WITHOUT the IV antibiotics. He said amoxicillen would be enough....yeah right....
So this time IF she does end up having to go to the hospital....I can assure you she won't come home till she either has a full course of IV antibiotics OR they send her home on it......
Ok enough of my ranting....sorry this is just beyond frustrating to me! Just be glad you can click off my blog LOL!!!!
Please pray this new medicine will kill all three bugs and help her to recover!!!!!!
And for the ones of you who thought I was some spiritual giant....you may have changed your mind after this blog! Sorry but I hate when I have to deal with foolishness, when it has to do with my child! Maybe I don't handle it the right way and probably do not handle my anger very well either .... But I can tell you I love my little ones, and will see that they get the best care possible!
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While I was hanging out in CVS for hours..... I did find a toy for Sarah. Sarah is not a big toy player but I thought she might like this and she did very much! She definelty can see light! I love she actually starts holding it, that is big for her!
for some reason, I have always loved Sarah's little hands, I noticed them on all her orphange pictures we saw and I still love her tiny little hands. I really love to see them holding a toy:)
what a sweet little girl she is, with a soft smile for everything.
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For what it is worth I see nothing wrong with some tactless fighting for your child. Go on Momma!!! Is Arnold Palmer in Orlando not an option?
ReplyDeleteI *love* that you are real and know that you have a real God who can handle your real issues. I *dislike* that Selah is having to suffer for the sake of a high-falutin' dr's 'know-it-better-than-you' attitude. And I am praying for her, for you, and for God to show Himself mighty in all of this...
ReplyDeleteI don't see why a mom being a mom would offend anyone. Not me atleast, I get the same way with my boys. Hugs mama bear, hang tight. Praying everything calms down for you soon and that Selah starts feeling better very soon.
ReplyDeleteNo apologies. I believe Jesus would want you to fight for Selah's best possible care. My husband has had a few surgeries, resulting in long term problems and complications. I have been the crazy hateful person to plenty of Dr.'s, Nurses and other staff who thought they were the genious in the room. Making things more or less than they were. We have had many wonderful medical professionals most times giving us awesome care, but sometimes we have more insight because we live with them. And yes, Jesus lives in my heart. I am pretty sure my Husband wouldn't be here to watch our kids grow up if I would have sat back and let some situations go on as the medical pros thought they should. Go Mama!! God placed our Loved Ones in our lives to take care of each other and sometimes we have to act a little out of our normal range before people will listen. I have also had the hospital "Ambassador" or whatever they are called stop by to visit with me. Whatever, It is still my job to fight if need be! LOL!! Keep up the good fight Mom and be Selah's voice - She finally has a Mom to fight for her and you are standing firm on your promise to take care of her Thank you for standing strong!!
ReplyDeleteYou have every right to be down right frustrated and annoyed. You are Selah's best advocate, so keep advocating until things are RIGHT.
ReplyDeleteI don't blame you for going off on them! And I don't see anything wrong with how you feel or what you are saying--we have this instinct to protect our kids for a reason!! I HATE IT when docs think "they know better"--like we can't educate ourselves (through life experiences--like you had with Sam) or through our own research (even I know that amox. is no longer used by so many docs because too many germs are resistant to it!!).
ReplyDeleteI am praying so hard for her, that the doctors will LISTEN and she will get the right treatment and feel better (and be off the trach!) very soon.
Sarah looks so precious!
Hang in there--go mama lion!!
How infuriating! We'll keep you guys in our prayers.
ReplyDeleteNo matter the age when someone is helpless and in the hospital they need an advocate. Without one any number of bad choices, mistakes, oversights can be implemented. When Jesus had to leave us here on earth He sent us the comforter, the Holy Spirit. He is also our advocate. I believe that you are doing what is necessary and right to be Selah's comforter and advocate. And sometimes when you need to be heard tact just doesn't do it. I pray you will continue to be her advocate both in and out of the hospital. I'm speaking from personal experience, as a Stephen's minister and also as a pastor's wife too. God Bless You! And stick to your spiritual "guns".
ReplyDeleteYou are an incredible mom- I love how you are keeping it real. I will completely agree with you on the quality of medical care. I live in Seattle, and have incredible medical care- cutting edge, experimental, etc. I love my hospital/docs; the same way you feel about your doctors up north.
ReplyDeleteI was on vacation last Summer to FL, and I experienced a horrible Lupus attack. I was admitted to the hospital. The hospital docs hadn't heard of half the meds I was on (all mainstream, been out for several years), when I was going over my different types of Lupus-- the docs hadn't even heard of two of the types. It was horrible. The treatment plan they had me on was horrible. Not trusting them at all, feeling like I was going to die from kidney failure in FL I ended up calling my doctors in Seattle...and they worked with the docs in the hospital (aka telling them what to do) to get me better. My cousins live in Georgia and they have the most horrible stories from their docs and hospitals.
Hopefully she can go on an antibiotic for the long haul, and she can FINALLY get better and continue to improve. I'll be praying!
Yvonne - you mention that people who thought you a spiritual giant would have changed their minds after reading this post - on the contrary (at least for me!). I see you as more of a spiritual giant, because you are putting aside your own needs to fight for your daughter! I'm glad you recognize that no one knows Selah like you do, and that you will fight to get the medical "professionals" to listen to you - there's nothing more formidable than a Mama Bear fighting for her kids! There's a reason God made you Selah's mom - you'll stop at nothing to get her what she needs. I hope this latest infection is cleared up soon. You, Selah & the rest of your family are in my prayers.
ReplyDeleteI don't know about the Nemours in Florida but I know the original one here in Wilmington is good with special needs. Moms of kids with special needs have said that the hospital seems to look at the "whole child". Maybe I shouldn't say special needs but "multiple needs". Selah has several things to watch and I think hospitals are so specialized that they only want to deal with one thing at a time. That's okay for appendicitis in a typical child but not for our Selah! So I say, Yell and Scream, Mama! I can't figure out why they can't put an IV in at a outpatient center and let her go home. Craziness in the healthcare system. I will keep praying.
ReplyDeleteKeep advocating for your daughter! don't give up! Just and FYI though, I'm a pediatric RN and cipro CAN go through a g-tube, BUT you can't use the liquid; you need to get the tab and crush it, mix it with lots of water and then flush it with LOTS of water. If she has a button (like a Mic Key) use a syringe that fits right into the button so you don't have to use the tubing, that works even better. The problem with cipro and g-tubes is that it sticks to the tubing if you use the liquid and they miss out on parts of the antibiotic. Hope she feels better!!
ReplyDeleteKeep advocating for your daughter! don't give up! Just and FYI though, I'm a pediatric RN and cipro CAN go through a g-tube, BUT you can't use the liquid; you need to get the tab and crush it, mix it with lots of water and then flush it with LOTS of water. If she has a button (like a Mic Key) use a syringe that fits right into the button so you don't have to use the tubing, that works even better. The problem with cipro and g-tubes is that it sticks to the tubing if you use the liquid and they miss out on parts of the antibiotic. Hope she feels better!!
ReplyDeleteYou keep fighting for your daughter. You are her best advocate. I agree with Catherine. I also don't see why being a mom will offend anyone.
ReplyDeleteYou keep fighting for your daughter. You are her best advocate. I agree with Catherine. I also don't see why being a mom will offend anyone.
ReplyDelete