So Madilyn and I recently went to Milwaukee for our first 4 day trip all by ourselves. We had our first appointment with Endocrine to track her for possible growth hormone intervention. The doctor and I mutually agreed that this is something that would be years away and will probably never happen. With all of the other medical issues and procedures that she has already been through I don't feel at this point that subjecting her to daily injections just in the hopes of her being 5 feet instead of 4 foot 8 just isn't worth it. They also did a kidney ultrasound and lab work just because they are standard for Turner's Syndrome girls.
We then saw Special Needs Care Coordination, they are my lifeline, my sanity and my sounding board. I would be lost without them and they love Madilyn. They help with coordinating all of her appointments and equipment changes. Our goal is to get everything coordinated so that maybe we will only have to go to Milwaukee once every 3 months next year instead of 11 times like this year............:)
Dr. Ruttum, the pediatric ophthalmologist was next. He is thrilled with Madilyn's vision in her right eye and the glasses are doing their job so we'll see him again next year.
We back-tracked from Milwaukee to Green Bay one day to see the GI doc.......Dr. Gurram walked into the room and was talking and when he saw Madilyn he burst out laughing and said "oh my gosh, she's beautiful, I made her fat!!" He couldn't get over how amazing she looked and how well she is doing. The 3 pounds she gained in the first month after surgery is double what they anticipated so we have now cut back her feeds a little and are working on oral eating too. The progress is slow but it's progress so we'll take it.
Our final appointment (the big one) is Neonatal development. This appointment lasts up to 3 hours and Madilyn is fully evaluated by the nurse, the physical, occupational and speech therapists and then sees Dr. Baer. This appointment is very frustrating for me because they ask questions like "do you think she actually knows who you are?" This question hurts. Of course they very quickly realize that she most definitely knows who I am and that she's capable of incredible things they never thought she'd do. Dr. Baer informed me that according to all medical reasoning Madilyn should basically stay an infant, she should not be able to do any of the things she does much less be making even more progress. She asked me if it was my goal in life to defy hundreds of years of medical research and history....this made me laugh. I told her that was just bonus cause my only mission in life is to give Madilyn every chance possible at an incredible life.
I knew the moment she came out breathing on her own that she would defy everything. My sister thought I was a lunatic because the medical facts spoke the complete opposite of my heart. Madilyn is here to teach us all something and she proves that every single day. At least three times in the past year we have heard that she should not be alive or that she should not have survived the illness she had, but she does and she's happy and healthy now and thriving in every way possible.
This very week one year ago was the absolute hardest week of my life......it was the week that I confronted my daughter's drug addiction head on and chose to go to court to take custody of Madilyn away from her parents. I was adamant for a very long time that we would always be grandma and grandpa and we are but we also answer to momma and dada too...........September 14th is a day that we have chosen to turn into a celebration rather than a sad day. We are going to celebrate Chosen Day every September 14th. It is the day that we chose to put Madilyn first. It is the day we chose to make a better life for her even though we knew it would rip other lives apart. We did what we had to do and have not regretted it for a moment so now we choose to celebrate it.
I have hopes for this next year for much progress and healing for my heart and my family. I hope to eventually begin the healing process and learn to communicate with my daughter again. I hope for no life threatening ordeals and fewer trips to Milwaukee...........I am going to embrace the calm (and chaos) that is my life now and love every moment of it.
Wednesday, September 11, 2013
Tuesday, August 13, 2013
answers...answers...answers...
So things have been crazy......we switched GI doctors in July and the new one if fabulous. We absolutely love Dr. Gurram. He let us try the formula change and it worked great momentarily. We monitored her weight twice a week for a few weeks and had minimal luck. The dreaded vomiting also came back with a vengeance. We have tried every thing we could think of to keep the food in her so she would gain weight and nothing worked. So after much consultation and education we knew the switch from the G-tube to the G/J tube was coming.
On Friday, August 2nd Madilyn had not gained any weight again, she was maintaining at 14lbs 4ounces and I let them know when I called in her weight check that the vomiting was horrible. We received the phone call later that afternoon that it was time to switch and they wanted us in Milwaukee asap. Arrangements were made and Monday they called and told us to get there now and that she was a direct admit with surgery the following morning. We were absolutely terrified. The thought of being attached to a tube for up to 18 hours a day in order for her to get her much needed nutrition was very scary.
When we arrived at the hospital we discovered that she had dropped to under 14lbs. This was heart breaking...we also discovered that her sugar level was only 42 and this was with normal feedings with excessive vomiting. Her other blood levels were all off too.......poly-carbonates were low and so was her magnesium levels. I was terrified, as sugar levels were a huge problem when the mystery virus struck us in early February.
Surgery to do the EGD scope to check for damage from the vomiting or other problems went great and so did the tube change. There is minimal damage that needs no medical intervention, it will repair itself and although the new tube was shocking to see, it is working wonderfully. She has gained a pound in 6 days and within 24 hours the pink color came back to her cheeks and her eyes don't have that sunken tired look anymore. Within 36 hours after surgery we were thrilled cause her weight had jumped 8 ounces or so already but we were equally discouraged because the dreaded vomiting had not stopped. The team of doctors decided to try a suction bag hooked up through the g-port on her tube and as soon as it was hooked up the vomiting vanished.
The vomiting was strictly excess stomach juices she was producing because her stomach was so irritated. At first she was attached to it 24hrs per day but we're already down to only when she's completing her feed in the morning and while she's awake feeding in the evening. We have been able to progress her feeds enough that we already have 8 1/2 hours per day that we're not attached, by Sunday she'll be down to 14 hour feeds that leave us 10 hours every day of freedom. The only thing she gets in this "freedom time" is her Pedialyte
feed to replace all of the protein and electrolytes she loses through the stomach juices. Even that has reduced drastically. The first few days the replacement feeds consumed 3 hours of our "free time" and today it's down to less than half of that and I do it while she's napping so it's not a big deal.
For how terrified we were of this change we laugh now because it's actually very freeing. She gets plenty of floor/jumparoo and exersaucer time when she's not attached to anything and we work on our sitting therapies and figured out how to attach the pump bag to the walker when she is attached. We also get to go out for walks every day as it is very easy now when we are not rushing in between feeds and vomiting. We actually got to stop and visit with friends the other evening on our walk and didn't have to worry about rushing. It's been amazing.
As for the answers, when we were admitted and they did her labs they started an IV in the middle of the night, running it at an extremely low rate. Dr. Gurram came in bright and early on Tuesday and explained that he knew what the "mystery virus" was from February and that we were definitely correct in saying that it almost killed her. It's very rare and it's called Refeeding Syndrome. When Madilyn had the chronic diarrhea for 6 weeks in Dec/January it ended up making her malnourished (nobody ever said this to us then). The diarrhea stopped the same day we switched to Pediasure and she became extremely sick immediately after that with the massive vomiting and fever which landed us airlifted to Milwaukee. A person can become malnourished within 4 days of being ill and the body depletes all of its stored resources that keep sugar levels, magnesium etc somewhat level, when complete nutrition is suddenly introduced the body sometimes doesn't know what to do with it and it goes haywire and can start shutting systems down. It can cause cardiac arrest, respiratory distress and organ failure. Dr. Gurram told us repeatedly how lucky we are that Madilyn survived. All of the feeding problems multiplied after that and I blamed the Pediasure, in reality it is because her GI tract partially shut down in order for the rest of her body to heal and thrive. Dr. Gurram is very hopeful that with the J-tube and proper nourishment her GI tract will heal and begin to function normally again. It will take time and there are no guarantees but we are hopeful. Refeeding Syndrome is something that Madilyn will always be at risk for since she has already had it once but it's ok because it has a name, we can educate ourselves and her doctors are aware of it now so it can be dealt with properly.
So at this moment we are thankful and blessed. Progress can be made, Madilyn can heal and we can work towards progress with the oral feeding since there is no more vomiting. All in all.............it comes down to we can either focus on the negatives: trips multiplying with the new tube, financial stresses and rare syndromes or we focus on the positives: answers, progress, living, laughing and love........We choose the positive!
On Friday, August 2nd Madilyn had not gained any weight again, she was maintaining at 14lbs 4ounces and I let them know when I called in her weight check that the vomiting was horrible. We received the phone call later that afternoon that it was time to switch and they wanted us in Milwaukee asap. Arrangements were made and Monday they called and told us to get there now and that she was a direct admit with surgery the following morning. We were absolutely terrified. The thought of being attached to a tube for up to 18 hours a day in order for her to get her much needed nutrition was very scary.
When we arrived at the hospital we discovered that she had dropped to under 14lbs. This was heart breaking...we also discovered that her sugar level was only 42 and this was with normal feedings with excessive vomiting. Her other blood levels were all off too.......poly-carbonates were low and so was her magnesium levels. I was terrified, as sugar levels were a huge problem when the mystery virus struck us in early February.
Surgery to do the EGD scope to check for damage from the vomiting or other problems went great and so did the tube change. There is minimal damage that needs no medical intervention, it will repair itself and although the new tube was shocking to see, it is working wonderfully. She has gained a pound in 6 days and within 24 hours the pink color came back to her cheeks and her eyes don't have that sunken tired look anymore. Within 36 hours after surgery we were thrilled cause her weight had jumped 8 ounces or so already but we were equally discouraged because the dreaded vomiting had not stopped. The team of doctors decided to try a suction bag hooked up through the g-port on her tube and as soon as it was hooked up the vomiting vanished.
The vomiting was strictly excess stomach juices she was producing because her stomach was so irritated. At first she was attached to it 24hrs per day but we're already down to only when she's completing her feed in the morning and while she's awake feeding in the evening. We have been able to progress her feeds enough that we already have 8 1/2 hours per day that we're not attached, by Sunday she'll be down to 14 hour feeds that leave us 10 hours every day of freedom. The only thing she gets in this "freedom time" is her Pedialyte
feed to replace all of the protein and electrolytes she loses through the stomach juices. Even that has reduced drastically. The first few days the replacement feeds consumed 3 hours of our "free time" and today it's down to less than half of that and I do it while she's napping so it's not a big deal.
For how terrified we were of this change we laugh now because it's actually very freeing. She gets plenty of floor/jumparoo and exersaucer time when she's not attached to anything and we work on our sitting therapies and figured out how to attach the pump bag to the walker when she is attached. We also get to go out for walks every day as it is very easy now when we are not rushing in between feeds and vomiting. We actually got to stop and visit with friends the other evening on our walk and didn't have to worry about rushing. It's been amazing.
As for the answers, when we were admitted and they did her labs they started an IV in the middle of the night, running it at an extremely low rate. Dr. Gurram came in bright and early on Tuesday and explained that he knew what the "mystery virus" was from February and that we were definitely correct in saying that it almost killed her. It's very rare and it's called Refeeding Syndrome. When Madilyn had the chronic diarrhea for 6 weeks in Dec/January it ended up making her malnourished (nobody ever said this to us then). The diarrhea stopped the same day we switched to Pediasure and she became extremely sick immediately after that with the massive vomiting and fever which landed us airlifted to Milwaukee. A person can become malnourished within 4 days of being ill and the body depletes all of its stored resources that keep sugar levels, magnesium etc somewhat level, when complete nutrition is suddenly introduced the body sometimes doesn't know what to do with it and it goes haywire and can start shutting systems down. It can cause cardiac arrest, respiratory distress and organ failure. Dr. Gurram told us repeatedly how lucky we are that Madilyn survived. All of the feeding problems multiplied after that and I blamed the Pediasure, in reality it is because her GI tract partially shut down in order for the rest of her body to heal and thrive. Dr. Gurram is very hopeful that with the J-tube and proper nourishment her GI tract will heal and begin to function normally again. It will take time and there are no guarantees but we are hopeful. Refeeding Syndrome is something that Madilyn will always be at risk for since she has already had it once but it's ok because it has a name, we can educate ourselves and her doctors are aware of it now so it can be dealt with properly.
So at this moment we are thankful and blessed. Progress can be made, Madilyn can heal and we can work towards progress with the oral feeding since there is no more vomiting. All in all.............it comes down to we can either focus on the negatives: trips multiplying with the new tube, financial stresses and rare syndromes or we focus on the positives: answers, progress, living, laughing and love........We choose the positive!
Friday, July 26, 2013
Life changes..........
Sorry I haven't been on in a while, we've been struggling. First the good news.....Early On (our birth to 3 program) came and did Madilyn's 6 month evaluation on her IFSP goals and I am very proud to say that she has already passed all of her 6 month and 1 year goals. She is already passed the goals they set for mid-January 2014 for sitting, speech and fine motor skills which puts me over the moon. New goals have been written and we are working towards them now!!!
Now for the rest of it.......as everyone knows feedings have been our biggest struggle ever. The puking, oh the dreaded puking has caused so many problems, frustrations and tears. We have a new GI doctor that we are pleased with, his communication skills are great and he's easy to talk to. I feel like he really listens to me and he is very thorough with his explanations. We switched at the end of last month to a higher calorie formula mix from Pediasure and while it has made a big difference, it's not enough. The puking is back with a vengeance. The puking makes the back of Madilyn's tongue raw and irritated and she digs at it and won't eat. I can't even begin to imagine what it has done to her stomach and esophagus. The end of May she weighed 14lbs and it's almost August and she's only 14lbs 1.5 ounces. At one point we were up to 14lbs 4.5 ounces.......I made a promise to God, myself and Madilyn that I would always do what was best for her and the time has come. We are looking into (per the recommendation of 2 GI doctor's and the Special Needs Care Coordination Clinic) switching from a G-tube to a G/J tube. The G-tube we currently use feeds directly into her stomach while the J-tube part of it feeds directly into her intestines. The Care Coordination Clinic is helping us to work out a schedule so we will still use her stomach (G-tube) at times during the day otherwise the setbacks are way to expansive to even begin talking about. The J-tube feeds will be longer but she will gain weight faster (we hope) and it will give her the reprieve she needs from the constant puking, it will allow things to heal and hopefully we will be able to make real progress with the oral feedings and get her taking more food.
They will be doing an EGD scope at the same time to look at the potential damage all of the puking has done and to see if there is something wrong that can be easily corrected. It has the potential to answer all of our questions or absolutely none of them. Sometimes children with neurological problems like Madilyn just have disconnections between the brain and parts of the body and there is no explanation at all as to why things don't work properly. Either way it can't be put off any longer. She has only gained 2 pounds in 6 months and while she is thriving in every other way and stretching we run the risk of undoing all of that without proper weight gain. We can get way more formula into her than the Pediasure but we are at a point that it's not physically possible to up her feeds any more as she cannot tolerate them and her calorie consumption cannot keep up with her increasing activity levels.
It will change the challenges that we face daily........instead of figuring out how to keep her upright and somewhat immobile so her feeds stay in we'll have to figure out how to chase her around and play in her toys with a 3 foot feeding tube attached to her. We'll deal more often with the pump/tube than packing like we're running away from home with multiple outfit changes, extra carseat/stroller padding for all of the potential puke.
This has not been an easy decision and tons of tears have been shed and a stress migraine has been brewing for 2 days. We run the risk that she may never be able to come off of the J-tube feeds. We also run the risk that we may do this and other than a break from the puking to let things heal it might not make any difference with her weight gain. With Madilyn's chromosome abnormality there's no comparison so we have no idea how big she's supposed to be or how big she'll get, but at least by trying we will know.
She will be hospitalized for a few days while they figure out the new feed rates and tolerance levels and it will mean even more trips to Milwaukee as the tube will need to be switched every 3 months and this one I cannot change myself. It brings with it more stresses about money as I will have to miss quite a bit of time from work for this transition and it's an unexpected several day trip to Milwaukee with another one coming up the first week of September.
I have always said that everything happens for a reason and that I will never not trust my gut instincts so even though I don't know and may never know the reasons I am going to trust my gut that this is the best thing for Madilyn...............and I will pray
Now for the rest of it.......as everyone knows feedings have been our biggest struggle ever. The puking, oh the dreaded puking has caused so many problems, frustrations and tears. We have a new GI doctor that we are pleased with, his communication skills are great and he's easy to talk to. I feel like he really listens to me and he is very thorough with his explanations. We switched at the end of last month to a higher calorie formula mix from Pediasure and while it has made a big difference, it's not enough. The puking is back with a vengeance. The puking makes the back of Madilyn's tongue raw and irritated and she digs at it and won't eat. I can't even begin to imagine what it has done to her stomach and esophagus. The end of May she weighed 14lbs and it's almost August and she's only 14lbs 1.5 ounces. At one point we were up to 14lbs 4.5 ounces.......I made a promise to God, myself and Madilyn that I would always do what was best for her and the time has come. We are looking into (per the recommendation of 2 GI doctor's and the Special Needs Care Coordination Clinic) switching from a G-tube to a G/J tube. The G-tube we currently use feeds directly into her stomach while the J-tube part of it feeds directly into her intestines. The Care Coordination Clinic is helping us to work out a schedule so we will still use her stomach (G-tube) at times during the day otherwise the setbacks are way to expansive to even begin talking about. The J-tube feeds will be longer but she will gain weight faster (we hope) and it will give her the reprieve she needs from the constant puking, it will allow things to heal and hopefully we will be able to make real progress with the oral feedings and get her taking more food.
They will be doing an EGD scope at the same time to look at the potential damage all of the puking has done and to see if there is something wrong that can be easily corrected. It has the potential to answer all of our questions or absolutely none of them. Sometimes children with neurological problems like Madilyn just have disconnections between the brain and parts of the body and there is no explanation at all as to why things don't work properly. Either way it can't be put off any longer. She has only gained 2 pounds in 6 months and while she is thriving in every other way and stretching we run the risk of undoing all of that without proper weight gain. We can get way more formula into her than the Pediasure but we are at a point that it's not physically possible to up her feeds any more as she cannot tolerate them and her calorie consumption cannot keep up with her increasing activity levels.
It will change the challenges that we face daily........instead of figuring out how to keep her upright and somewhat immobile so her feeds stay in we'll have to figure out how to chase her around and play in her toys with a 3 foot feeding tube attached to her. We'll deal more often with the pump/tube than packing like we're running away from home with multiple outfit changes, extra carseat/stroller padding for all of the potential puke.
This has not been an easy decision and tons of tears have been shed and a stress migraine has been brewing for 2 days. We run the risk that she may never be able to come off of the J-tube feeds. We also run the risk that we may do this and other than a break from the puking to let things heal it might not make any difference with her weight gain. With Madilyn's chromosome abnormality there's no comparison so we have no idea how big she's supposed to be or how big she'll get, but at least by trying we will know.
She will be hospitalized for a few days while they figure out the new feed rates and tolerance levels and it will mean even more trips to Milwaukee as the tube will need to be switched every 3 months and this one I cannot change myself. It brings with it more stresses about money as I will have to miss quite a bit of time from work for this transition and it's an unexpected several day trip to Milwaukee with another one coming up the first week of September.
I have always said that everything happens for a reason and that I will never not trust my gut instincts so even though I don't know and may never know the reasons I am going to trust my gut that this is the best thing for Madilyn...............and I will pray
Thursday, June 27, 2013
Pediasure warning and changes!!!
After several months of feeding/vomiting frustrations, we have finally made some big changes. First, a warning to mom's with babies/toddlers...DO NOT GIVE THEM PEDIASURE. Our nightmare started on Tuesday February 5th which is the day Madilyn started Pediasure per her GI doctor. Wednesday February 6th, she awoke with a fever and massive vomiting. By Thursday we were admitted at out local hospital for fever, vomiting, dehydration and very erratic sugar levels. They (the doctors) didn't want them any lower than 60 and Madilyn's kept dropping down to 38/40 and they had no idea why. On Friday morning Life Flight was sent from Milwaukee Children's Hospital to get us. This was the absolute scariest time of my life. I was terrified for the first time ever that we may lose Madilyn and not know why.
We have never been able to get Madilyn back up to larger bolus feeds during the day and projectile vomiting has been a daily struggle for months. The GI doctor's only solution was pediasure and a G/J tube that would go directly into her intestines and bypass her stomach all together. This would be life changing for her, as odds are against her ever getting it removed. I have fought this from day 1 insisting that we just needed a dietary change. The GI doc is adamant that she will not do that so we have found a new GI doc that we will start seeing in July. Since then my husband and I have scoured the internet for any source of information we can in regards to Pediasure. We have discovered from a UK website that it should never be given to a child under 22 pounds and that the mystery virus that made Madilyn so ill was probably a reaction to it. Her little 12 lb body had no idea how to breakdown the amount of sugar and protein in the Pediasure.
I have since worked with a local dietitian and her pediatrician and have put Madilyn on Enfamil at a 27 calorie mix. She is doing amazing!!! The vomiting is gone. The gagging is gone. The mucus and coughing fits that happened almost a dozen times per day are gone and so are the hiccups she was getting 10 times per day. Her tongue is healing and she let me feed her baby food for the first time in months. She can tolerate larger feeds already and has no diarrhea or other adverse effects. We have to monitor closely to ensure that her calorie intake supports her activity levels but that's ok, we've always had to do that.
We feel very hopeful for the first time in months that we can finally make progress in the feeding area now. It's the only area that we have been behind and I'm trying not to beat myself up too much for not being more forceful with her original GI doctor. I am thankful that we didn't resort to either the G/J tube surgery or the Nissen Fundoplication for the GERD causing food aversion. The reflux is part of her life but with time we will know if it's really as bad as suspected for if it was the Pediasure multiplying it. I believe it was the Pediasure.........
Lesson learned again, it's one I learn repeatedly, always always trust your gut. Nobody knows your child better than you, even if they had MD behind their name..........
We have never been able to get Madilyn back up to larger bolus feeds during the day and projectile vomiting has been a daily struggle for months. The GI doctor's only solution was pediasure and a G/J tube that would go directly into her intestines and bypass her stomach all together. This would be life changing for her, as odds are against her ever getting it removed. I have fought this from day 1 insisting that we just needed a dietary change. The GI doc is adamant that she will not do that so we have found a new GI doc that we will start seeing in July. Since then my husband and I have scoured the internet for any source of information we can in regards to Pediasure. We have discovered from a UK website that it should never be given to a child under 22 pounds and that the mystery virus that made Madilyn so ill was probably a reaction to it. Her little 12 lb body had no idea how to breakdown the amount of sugar and protein in the Pediasure.
I have since worked with a local dietitian and her pediatrician and have put Madilyn on Enfamil at a 27 calorie mix. She is doing amazing!!! The vomiting is gone. The gagging is gone. The mucus and coughing fits that happened almost a dozen times per day are gone and so are the hiccups she was getting 10 times per day. Her tongue is healing and she let me feed her baby food for the first time in months. She can tolerate larger feeds already and has no diarrhea or other adverse effects. We have to monitor closely to ensure that her calorie intake supports her activity levels but that's ok, we've always had to do that.
We feel very hopeful for the first time in months that we can finally make progress in the feeding area now. It's the only area that we have been behind and I'm trying not to beat myself up too much for not being more forceful with her original GI doctor. I am thankful that we didn't resort to either the G/J tube surgery or the Nissen Fundoplication for the GERD causing food aversion. The reflux is part of her life but with time we will know if it's really as bad as suspected for if it was the Pediasure multiplying it. I believe it was the Pediasure.........
Lesson learned again, it's one I learn repeatedly, always always trust your gut. Nobody knows your child better than you, even if they had MD behind their name..........
Tuesday, June 18, 2013
Progress & Frustrations
So we went Milwaukee and had 6 appointments in 3 days......they all went great!!! Genetics was absolutely thrilled to see her and how she's growing and progressing. We received a very thorough explanation of her complex X-chromosome abnormality and better understanding..........or at least as much understanding as possible with what comes along with being a "one and only". She is the only person in the world ever to have her chromosome lines so we will continue to pray that she continues to be as amazing as she already is. They don't need to see her again for 2 years!!!!!! Next was the gastric emptying scan for GI as the pediatrician says it's GERD and the GI doc was insistent that it was a digestion problem. The scan took 90 minutes and she was not allowed to eat anything for 8 hours prior. I thought for sure it was a recipe for vomiting with not eating that long prior but the Peanugga must have known how important the test was and completely cooperated and took a nice long nap instead. The test came back the following morning with normal results!! That equates to grandma = 1 and the GI doc = zero!!! We then proceeded to the GI nurse visit for a button change where grandpa got to watch for the first time and I got to change it myself. I was trained to do this in February by general surgery but this time I actually got to do it. Grandpa was completely grossed out but I thought it was pretty cool. Next stop was the Special Needs Care Coordination Clinic where a physician assistant, Doctor and Nurse all evaluated Madilyn and spent almost 2 hours talking to us about what our goals are with Madilyn and the best way to reach those goals. They will help with all of the frustrations with the GI doctor also. Friday, the final day of appointments started bright and early with a visit to Neurosurgery for an office visit to check her shunt and they were happy also with the progress she has made and the shunt in doing it's job nicely so unless a problem arises they don't need to see her for another year. Last was day surgery with Dr. Han for her retina check. They put her under anesthesia for this as the exam can be painful and upsetting. She did awesome as always and Dr. Han was thrilled that everything looks great. The eye exams under anesthesia will now go from 4 months to 5 and if that one looks good it will go to every 6 months and stay that way until she is old enough to tolerate the exam in the office.
All in all in was a hectic but great trip and we even managed to spend an entire afternoon at the zoo where we discovered that the fish are Madilyn's favorite. When grandpa was petting the sting rays she was squealing and if I would've given her the chance I think she would've jumped in the pool with them.
Madilyn has been making awesome progress with sitting and with the new reflux meds tummy time is no longer the issue that it was which makes us all very happy. She is making up to twenty minutes at a time on the tummy wedge reaching for her toys, playing with the light board and looking all over. It feels like huge strides after all the struggles. She is even able to roll onto her tummy and gets up on her knees and uses 1 arm.....as soon as she gets the other arm to cooperate we'll all be in trouble cause little miss busy will be crawling in no time.
Feeding/speech therapy is progressing too. We are finally to a point that we can get her to put stuff in her mouth again and she is starting to talk more and more. She even told some other children at therapy "bye" when we were leaving last week which absolutely thrilled the therapist and grandma.
My only current frustration is the GI doctor, which we are in the process of switching with the help of the Special Needs team. She has gone from everything being fabulous and wanting us to space out home nurse visits/weight checks to insisting Madilyn needs a G/J tube. Mind you, the rate that Madilyn is growing has not changed and the puking has decreased. The GI doctor has never acknowledged Madilyn's reflux so the pediatrician did and bypassed the GI doc with the referral to pediatric surgery. We are thinking that the GI doc ended up with a wounded ego from this and is now being extremely uncooperative. On top of that I argued relentlessly that it was not a digestion problem and she insisted it was which the scan they did proved I was right and not her, hence, wounding her ego even more. I have had multiple other nurses from her own department as well as physician's tell me that there are multiple other options to try and control the reflux and increase weight gain and the Dr just tells me no. She is learning the hard way that "No" is not an acceptable answer for me. So now with the help of the Special Needs team we will switch doctors and hopefully end up with one that feels Madilyn is worth their time and effort.
For better understanding where our frustration comes from the G/J tube goes directly into the intestines and completely bypasses use of the stomach. Madilyn would be attached to a feeding pump 16-20 hours per day. This would cause great problems with physical therapy, mobility and progression. It was explained to me by nurses in the GI department that they did not understand why this was the only option being given because typically a child needs to be regressing and losing weight and only after multiple dietary changes and all other options are exhausted is a G/J tube inserted because they rarely ever come out. Well, Madilyn is doing none of the above, she is thriving and growing and doing fabulous so we will switch doctors and save us all some stress.
Now if the weather would just warm up so we could go camping all would be right with the world....;)
All in all in was a hectic but great trip and we even managed to spend an entire afternoon at the zoo where we discovered that the fish are Madilyn's favorite. When grandpa was petting the sting rays she was squealing and if I would've given her the chance I think she would've jumped in the pool with them.
Madilyn has been making awesome progress with sitting and with the new reflux meds tummy time is no longer the issue that it was which makes us all very happy. She is making up to twenty minutes at a time on the tummy wedge reaching for her toys, playing with the light board and looking all over. It feels like huge strides after all the struggles. She is even able to roll onto her tummy and gets up on her knees and uses 1 arm.....as soon as she gets the other arm to cooperate we'll all be in trouble cause little miss busy will be crawling in no time.
Feeding/speech therapy is progressing too. We are finally to a point that we can get her to put stuff in her mouth again and she is starting to talk more and more. She even told some other children at therapy "bye" when we were leaving last week which absolutely thrilled the therapist and grandma.
My only current frustration is the GI doctor, which we are in the process of switching with the help of the Special Needs team. She has gone from everything being fabulous and wanting us to space out home nurse visits/weight checks to insisting Madilyn needs a G/J tube. Mind you, the rate that Madilyn is growing has not changed and the puking has decreased. The GI doctor has never acknowledged Madilyn's reflux so the pediatrician did and bypassed the GI doc with the referral to pediatric surgery. We are thinking that the GI doc ended up with a wounded ego from this and is now being extremely uncooperative. On top of that I argued relentlessly that it was not a digestion problem and she insisted it was which the scan they did proved I was right and not her, hence, wounding her ego even more. I have had multiple other nurses from her own department as well as physician's tell me that there are multiple other options to try and control the reflux and increase weight gain and the Dr just tells me no. She is learning the hard way that "No" is not an acceptable answer for me. So now with the help of the Special Needs team we will switch doctors and hopefully end up with one that feels Madilyn is worth their time and effort.
For better understanding where our frustration comes from the G/J tube goes directly into the intestines and completely bypasses use of the stomach. Madilyn would be attached to a feeding pump 16-20 hours per day. This would cause great problems with physical therapy, mobility and progression. It was explained to me by nurses in the GI department that they did not understand why this was the only option being given because typically a child needs to be regressing and losing weight and only after multiple dietary changes and all other options are exhausted is a G/J tube inserted because they rarely ever come out. Well, Madilyn is doing none of the above, she is thriving and growing and doing fabulous so we will switch doctors and save us all some stress.
Now if the weather would just warm up so we could go camping all would be right with the world....;)
Tuesday, May 14, 2013
and we sing..............
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....:)
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....:)
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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