Do I not speak English? Do my ears flap?
We took Parker to see the surgeon today re: Nissen and G-Tube.
I swear I wanted to whop that woman upside the head by the time we walked out of there. I’m actually pretty upset with myself that I didn’t take the opportunity to do so while I had the chance.
Now, remember this is the Chief of Surgery we talked to. She is supposed to be the best up there. She is the one who separated the conjoined twins last year.
First of all she was amazed that Parker’s cardiologist wouldn’t give the okay for Parker’s pull down but he did sign off on a Nissen. According to her the Nissen is MUCH more invasive and would be harder on Parker than the PSARP due to Parker’s PH. And with his PH issues he would most likely have to have it done via an incision rather than a scope which would add extra hospital time to the 1-2 week stay.
And he would have horrible issues breathing after the surgery. But we were told that being trached would help with surgeries and their aftermath.
Yet Parker’s cardiologist has been talking about a Nissen for the last two years for Parker. I had put HIM off because the GI specialist said that reflux wasn’t an issue. Then we had all the GI testing done this summer…..and whadda ya know the the kid spouts off like Old Faithful.
She then informed us that with a Nissen we were simply trading one set of problems for another as Parker wouldn’t be able to throw up, would hate the feeling of being full and would be very prone to colic and gas since the gas could no longer go ‘up’ and out.
She kinda blew off the relationship between PH and reflux…and I KNOW that there is a very strong connection between PH and reflux.
And I know that you can vent the G-Tube for gas and if he is sick to his stomach I can either do half feeds more often, pull out stuff from his stomach if necessary, etc.
Trust me, when your kid is trached something sewn inside his stomach is just not that big of a deal to wrap your brain around. He’s not gonna die before I can get an ambulance here. I don’t have to know G-Tube CPR, etc.
She then proceeded to tell me that the gagging that Parker does would only get worse with the Nissen since when he would gag himself he would no longer be able to throw up……and would then gag himself more often causing severe problems with feeding issues.
Uh….the kid won’t eat as it is.
She can’t perform surgery until late December or January. Hello? Parker will have dried up and blown away by then.
She suggests yet another PH probe. But our Pedi rolled her eyes at this. We already KNOW that he has reflux.
Plus, right now he can only tolerate feeds that are a mixture of half Neocate One Plus and Pedialyte. Which means he is only getting half the necessary nutrition.
In reality though he is getting less than that as his elcetrolytes are showing. He is dehydrated because we can’t get enough stuff down him.
We go in for another blood draw this afternoon. I’m also expecting a delivery of yet another type of formula that is even more elemental.
Her parting shot was “Well, if MOM decides to go ahead with this surgery then we’ll have Krissie schedule it just in case.”
Me? Holy bejeebers. Like I just reached under my armpit and pulled out a desire to put my kid through another surgery.
Like we have the money for another 10 day to 2 week stay up there with a week of it being in the PICU. Just gas costs alone can kill ya when Reed drives up and back each day. And food costs. I can’t ever leave because Reed and I share just one car between the two of us. So I wind up ‘showering’ in the bathroom sink each morning.
Life at PCMC is just one joyous minute after the next. Simply Loverly.
So now I sit here and wonder…..Nissen or no Nissen?
If you haven’t fallen asleep yet, thanks.
I’ve never commented before, and I honestly couldn’t tell you how I found your page. I wish I had some comforting words to say, but I know that none will do. Just know that a stranger is praying for you and your sweet little guy. He is adorable.
Now I am kind of upset with you for not whopping her!
Don’t you just love it when the experts for some reason, just won’t do their darn job? Geez..
Keeping you and Parker in my thoughts tonight.
Twitter: nehimomma
says:
I will be honest nissen’s can have bad bad side effects. We almost did one with my son. They commonly retch like crazy which is harder on them then just puking. The hard thing with a nissen is you can’t undo them. They are permenent (well until they wretch right past them). They commonly also get dumping syndrome from it. I would ask them (beg if needed) to do a GJ tube and just bypass his tummy altogether. That is a much more minor surgery than the nissen and see if that can help.
It is getting more common now days that they don’t want to do nissen’s until they do motility testing to see how long stuff is hangin out in his gut. If his stomach isn’t moving the food in a reasonable amount of time, the nissen will make things worse. They then should start treating the motility problem. Surgeon’s are seeing too many cases of people wishing they had never ever allowed a nissen to be done on their child.
So push for a GJ tube. For many that really really helps. And then in a few years they are able to wean the child back on to g feeds.
I have no advice whatsoever, just a shoulder to cyber bear you up. I am so sorry you are going through this. {{{hugs}}} and prayers continuing from my neck of the woods.
Sometimes I think that those in the medical field are just trying to make our lives more miserable and then reality hits and I think that can’t be true, can it? I wish at times that they could all live with a special needs child for a short time to have a little more empathy, not that I would wish it to be one of their children.
I read the comment by Sarah and wonder if a g-j tube has been offered before? Luke had one of those for quite awhile and it was nice being able to bypass the stomach. Luke has a Nissen wrap but it didn’t last long.
I continue to pray for you and your husband to have great wisdom in knowing the correct solution for Parker.
Love in Christ,
Sue
Thinking of you Tammy and really confused about the whole thing. The kids I know who’ve had the nissen have spent about 5 days in the hospital before coming home, and one little girl who was in my ward (no ds, but severely disabled from a traumatic brain injury) was scheduled to be up there for 1-2 weeks and was home within 5 days. I know that sweet Parky has extra issues that complicate things – but wow – I’m not that impressed with her arguments. From what everyone tells me about the g-tube – it’s a godsend when kiddos feel sick and need to throw up – you just open it up and let it spew….
Maybe she is hesitant to operate on our cute boy because she doesn’t want anything to go wrong (like placing an ostomy in the wrong place – oh ya – they already did that – grrrrrr).
I’d go with your pediatrician’s advice – she is a GREAT doctor. Also – call me and I’ll give you the name of a couple of people who I know who have had the surgery done, and I think the one little boy has a g-tube too….
Thinking of you!
Hugs!
Ummm….no idea what to say. That nissen thing looked wild to me but what do I know? Nothing.
Have your pediatrician and this surgeon talked it out? I’m always amazed that parents have to be the messenger between docs. What is that about? Your ped is nice. Get the nice lady to talk to the mean lady.
What an experience? I will be praying for you that you will be guided by God in your decision. Praying also for the docs taking care of Parker – that they, too, are making the right decisions and giving him the best care possible.
In His Love and Blessings,
annb
Tammy, For Parker’s sake, demand that you be taken on by Dr. Downey!!! From our experience, Dr. Meyers is bad news, and the other guy isn’t as experienced. Dr. Meyers was horrible about getting back to us when we tried to contact her, even in emergency situations. Sometimes it took 3-9 days to get a hold of her, even from the ER, and at times we had to contact a pediatrician from out of town to just get to her. She did Sam’s g-tube surgery and he had to have three surgerys to close it, (see and also Sam’s case was abnormal… even Dr. Downey admits he hadn’t seen a case this difficult to heal, but he was willing to work with what he had, and it worked… Dr. Meyers doesn’t listen, and to us, she really doesn’t care. Even when we knew Sam had started eating, and the g-tube needed to be healed, she still wanted to go in and put it back in. She is difficult to communicate with. We honestly don’t want to Dr. bash, but this is one case we will never forget; and we wish Dr. Downey had seen Sam from day 1.
I know that some kids do great with g-tubes, we were also debating the Nissen and said no to it because Sam’s reflux has always been silent and his scope showed minimal need for the Nissen. In addition, he tolerated his NG tube just fine.
Sam’s g-tube just did not work for him. We were blessed enough to have Sam start eating well after two months of a g-tube… but his hole took 9 months and 4 surgeries to completely heal.
But, honestly, we had a terrible experience with Dr. Rebecca Meyers. And Dr. Downey was such a help… he really came to our rescue in July… he took the time to go over our case, call us at home as needed, and he was willing to put Sam right into surgery at a critical time to close his G-tube hole. Dr. Meyers didn’t work with the wound healing team at all (and that’s what a gastrostomy is, a wound, you are feeding through). Wound care is essential. And Dr. meyers really left us hanging on this one… see those pictures from Feb to see how bad it was. Please contact me with any questions. amber@gerritsen.com May the Lord bless you and Parker.
February healing
Finally healing after Dr. Downey’s work
somehow, the links didn’t show up in the previous comment.
Twitter: livingingrace
says:
You know, you need to listen to the DR and get over your addiction to PICU, little missy. I mean, sheesh.
You know I’m kidding- I’m a doctor whomper just like you. However, I’m sending you my snarky, sarcastic wit to keep you sane.
And should I need to take out a Dr. or two for ya? Call me.
I may take a swing at her using Dr. Infectious Disease Who’s Nowhere To Be Found Still Two Months After The Fact.
You must have a tremendous amount of self-control because decking her would have felt really good.
Still praying God’s will for Parker – and you. Also for wisdom for you and Reed – and a heart for that surgeon.
No advice here…just thinking of you. Stay strong…obviously Mama knows best.
I don’t even know what to SAY. What an awful day for you.
I am mad at you for not whacking the crap out the doctor, but I realize you’re a nicer person than me.
It is horrible that some doctors just do not make the effort to be team players. Then parents get stuck with trying to construct the team and coach it to victory. My prayers for Parker’s healing and good health above all. I am certainly praying that God provides the right doctors at the right time with the right frame of mine and the expertise to give Parker whatever care he needs. My prayers are also for your strength to be increase to the max…I know you’re needing it.
Lastly, I’ll pray the hospital T-day dinner does not make you sick.
Love you guys, hugs and prayers…always.