So the past few weeks with the GERD diagnosis have proven very frustrating. Madilyn's primary pediatrician diagnosed the GERD and prescribed an addition reflux medication for it. In the meantime the GI doctor finally stepped in and stated that they think it's a digestion problem, not GERD. I asked them how they figure it's digestion when the problem is keeping it in? No response.........UGH!! They have ordered a gastric emptying test while we are in Milwaukee in two weeks and ordered her to be on erythromyacin (yes, it's an antibiotic) to aid in digestion and added 100% corn oil to her feeds for added fat. I did the oil for a week with no weight gain, questioned why they were adding the oil rather than figuring out how to keep the feeds in? They're response was to up the oil from 2 ml per feed to 4. UGH......at the same time we had started the antibiotic and rather than aiding in digestion the combination of the two made the puking (which was already horrible) absolutely violent. It was the most horrific thing I have ever witnessed. So I, of course, stopped the antibiotic and the oil and called the GI nurse... yelling at them as I feel they are not listening to me at all, and maybe if I yell and scream out of pure frustration they may listen. Their response, the doctor calls Friday night while I'm at work and tells my husband that we need to get Madilyn to Milwaukee to get her switched from a g-tube to a j-tube. NOT HAPPENING!! A J-tube means it goes straight into her intestines and she's on a 24-hour continuous pump feed and all the progress we've made is undone because she's constantly attached to a feeding pump and her stomach is not being used at all...........UGH!! I called Monday to update them that the Prilosec we started on Saturday is actually working and is cutting the puking in half after only two day...........no response............they call Tuesday (today) while Home Nursing is here and I happily get to tell them that while trusting my gut instincts Madilyn has gained 1 1/2 ounces in 3 days!!! WOOHOO!!! 13 lbs 11 ounces and her first gain in 4 weeks!!!!!!!!!!!!! They proceed to tell me that it's fine to not give the antibiotic or oil until we see what the scan shows at the end of the month but to be prepared for the j-tube eventually. I politely informed the nurse that until they try other dietary changes or ways to soothe the GERD there will be no J-tube and if they are willing to do it then set up the referral to another doctor that will listen to me. I'm not an idiot, there are tons of other options........I just feel like she's taking the easiest/quickest way out for her which means huge huge setback for us and I won't allow that to happen. Madilyn has come way to far to start doing things that will potentially set us in the wrong direction. I will continue to trust my gut and advocate from the rooftops for Madilyn so she gets the absolute best life possible.
In the meantime we go about our life tracking every little spit-up and being very thankful for the little bit of relief the new med is giving and educate ourselves on another new medical condition we have a lot to learn about. I have second guessed myself for not trusting my gut in the past and I will not do that again. I know Madilyn better than anyone and if I feel someone isn't listening to me, even if it is her doctor, then I will find someone who will.
When all else fails and we are beyond frustrated we breathe, deeply and we sing........because even with all the setbacks and the frustration those happy little smiles and kisses make every day worthwhile and give us tons to sing about....:)
Tuesday, May 14, 2013
Friday, May 3, 2013
A day in our life
I've been struggling the past few days with a public post by someone close to me that bashed me for them needing to find things out on Facebook. I want to share completely what a day in our life is like.
Yesterday started relatively normal....Madilyn was a little fussy because she was having troubles pooping because of dietary changes due to her recent diagnosis of GERD. Home Nursing came to visit and I expressed my concerns and added the recommended teaspoon of dark molasses to her first feeding. I no sooner finished the feeding and she started vomiting. Massive massive vomiting.......coming out of her nose, needing to be suctioned and it wouldn't stop...........it finally calmed and it was time to feed again........this time as I'm tubing her it's coming out of her nose and she is still unable to poop. I contact the coworker I had promised to work for two hours earlier and let her know that I once again am unreliable because Madilyn's health changes so quickly, contact my husband who has to race out of work to come get us to bring us to the emergency room because I cannot put Madilyn in the backseat by herself with all of the vomiting for fear she'll choke to death or aspirate it into her lungs. I contact my sisters so one can make sure my daughter is taken care of after school and the other (on her birthday) comes and spends hours in the emergency room to calm me and in case there is anything she can do. Her ER visit lasted 5 hours and consisted of a CT scan because we always always have to check the shunt, abdominal x-rays to check her intestinal blockage and a chest x-ray that ends up showing something viral. Blood draws from the lab which show elevated white counts which lead to urine sample collection and an enema for my poor miserable Madilyn who is doing nothing but sleep. She also spiked a fever during our ER visit. After 5 hours and much consultation she was given an antibiotic shot, instructions to go home and do a pedialite overnight feed and call the doctor's office at 8:30 am to find out what time we need to be there today for a follow-up.
In between all of this I also dealt with the GI doctor's office trying to figure out feeds that she can tolerate because they were not happy with the dietary changes. Mind you, this is after reporting to them weekly about the vomiting for 4 full months and it was her primary pediatrician who diagnosed the GERD, not them. I am still impatiently waiting for the call from Milwaukee Pediatric Surgery to find out when we have to be there for a Nissen Fundoplication procedure to help fix the GERD. This entire time I am cuddling Madilyn and covered in vomit, waiting for answers that never come and praying I can keep it together while I'm in public, praying that she will bounce back as quickly as things they went bad.
The highlight of my evening was watching Madilyn peacefully sleep on the couch next to me while actually keeping down the pedialite feed she had once we got home and my nephew shows up with crab stuffed mushrooms leftover from my sister's birthday dinner out..............my husband promptly puts them heating as he knows this simple little gift is huge for me today.
I spent quite a bit of time in the middle of the night watching my husband and children sleep.......watching them so peaceful while I worry about how quickly Madilyn's health changes and where the money will come from to pay for unexpected trips and every day bills. It's during the night that the things I try to let go of because I can't control them sometimes take over my thoughts and make sleeping very elusive. I don't know or feel like I ever really sleep anymore, it's always with one ear open in case she throws up...........it's during this time that I am most thankful. I am thankful for the loved ones closet to me that are always there anytime of any day, I am thankful for my wonderful husband and children that are there to pull me out of my own head and to love me for the total control freak that I am..........and I am thankful for the beautiful baby who is the center of our world. I am thankful for the kisses I get to wake up to every single day and the fact that she finally says Nana and Papa.
I have spent months trying to make the people I think should be most involved in Madilyn's life be there and have finally come to the realization that I can't do that. It is driving me crazy but I have to let it go. I am thankful for the random friend or acquaintance that has left gifts for Madilyn and donated clothes, rocking chairs, exersaucers and random, unexpected financial gifts that mean the world to us, without them I'm not sure where we'd be, but that's okay too. I am a firm believer in everything happens for a reason and even though sometimes I question it.............I will patiently wait.......and enjoy every moment that I can.
Yesterday started relatively normal....Madilyn was a little fussy because she was having troubles pooping because of dietary changes due to her recent diagnosis of GERD. Home Nursing came to visit and I expressed my concerns and added the recommended teaspoon of dark molasses to her first feeding. I no sooner finished the feeding and she started vomiting. Massive massive vomiting.......coming out of her nose, needing to be suctioned and it wouldn't stop...........it finally calmed and it was time to feed again........this time as I'm tubing her it's coming out of her nose and she is still unable to poop. I contact the coworker I had promised to work for two hours earlier and let her know that I once again am unreliable because Madilyn's health changes so quickly, contact my husband who has to race out of work to come get us to bring us to the emergency room because I cannot put Madilyn in the backseat by herself with all of the vomiting for fear she'll choke to death or aspirate it into her lungs. I contact my sisters so one can make sure my daughter is taken care of after school and the other (on her birthday) comes and spends hours in the emergency room to calm me and in case there is anything she can do. Her ER visit lasted 5 hours and consisted of a CT scan because we always always have to check the shunt, abdominal x-rays to check her intestinal blockage and a chest x-ray that ends up showing something viral. Blood draws from the lab which show elevated white counts which lead to urine sample collection and an enema for my poor miserable Madilyn who is doing nothing but sleep. She also spiked a fever during our ER visit. After 5 hours and much consultation she was given an antibiotic shot, instructions to go home and do a pedialite overnight feed and call the doctor's office at 8:30 am to find out what time we need to be there today for a follow-up.
In between all of this I also dealt with the GI doctor's office trying to figure out feeds that she can tolerate because they were not happy with the dietary changes. Mind you, this is after reporting to them weekly about the vomiting for 4 full months and it was her primary pediatrician who diagnosed the GERD, not them. I am still impatiently waiting for the call from Milwaukee Pediatric Surgery to find out when we have to be there for a Nissen Fundoplication procedure to help fix the GERD. This entire time I am cuddling Madilyn and covered in vomit, waiting for answers that never come and praying I can keep it together while I'm in public, praying that she will bounce back as quickly as things they went bad.
The highlight of my evening was watching Madilyn peacefully sleep on the couch next to me while actually keeping down the pedialite feed she had once we got home and my nephew shows up with crab stuffed mushrooms leftover from my sister's birthday dinner out..............my husband promptly puts them heating as he knows this simple little gift is huge for me today.
I spent quite a bit of time in the middle of the night watching my husband and children sleep.......watching them so peaceful while I worry about how quickly Madilyn's health changes and where the money will come from to pay for unexpected trips and every day bills. It's during the night that the things I try to let go of because I can't control them sometimes take over my thoughts and make sleeping very elusive. I don't know or feel like I ever really sleep anymore, it's always with one ear open in case she throws up...........it's during this time that I am most thankful. I am thankful for the loved ones closet to me that are always there anytime of any day, I am thankful for my wonderful husband and children that are there to pull me out of my own head and to love me for the total control freak that I am..........and I am thankful for the beautiful baby who is the center of our world. I am thankful for the kisses I get to wake up to every single day and the fact that she finally says Nana and Papa.
I have spent months trying to make the people I think should be most involved in Madilyn's life be there and have finally come to the realization that I can't do that. It is driving me crazy but I have to let it go. I am thankful for the random friend or acquaintance that has left gifts for Madilyn and donated clothes, rocking chairs, exersaucers and random, unexpected financial gifts that mean the world to us, without them I'm not sure where we'd be, but that's okay too. I am a firm believer in everything happens for a reason and even though sometimes I question it.............I will patiently wait.......and enjoy every moment that I can.
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