We're in Milwaukee again. Seven appointments in three days. That's nothing new but staying at the Ronald McDonald House across the street from the hospital is. This place is incredible. It was so odd to come down here and not have to wonder where I was going to eat or what kind of construction was I going to have to deal with to get anywhere. It was also really odd to sit down to dinner in an entire huge room full of people just like me. Worried mom's, dad's and grandparents. Some were like me and had their child with them and other's are inpatient across the street. It felt really strange to be in a room full of me's. Quite often on our special needs/rare disease journey we tend to feel quite alone, but not today, today was a first.
Seconds...this is only the second time I have traveled to Milwaukee alone for appointments with Madilyn. It's too many days for anyone else to take off to accompany us, so we're flying solo this time. Thank goodness for portable DVD players, Mickey Mouse and Sophia the First, they make for a very cooperative toddler on the long car rides.
Fears...let's be real for a moment, I am full of fears when it comes to Madilyn and only for a brief second am I going to acknowledge them. One month ago Madilyn had her second shunt revision in six months. I understand shunts malfunction, they are equipment after all, it just terrifies me. It terrifies me even more when the neurosurgeon goes into your child's brain to fix the shunt and comes out saying "I hope that works cause I feel like we're missing something, things don't seem to add up". He had expressed concern with the first revision that her symptoms were not true shunt malfunction symptoms, they were brain stem related symptoms but she bounced right back after surgery and we had zero issues for six months. Then she didn't want to wake up, and when I finally got her to wake up the vomit started, the violent kind that leaves her almost non responsive for moments afterwards. The eyes, they no longer flutter from side to side when she's tired, they bounce in total opposite directions and tend to cross, it makes me hyperventilate. The balance that she fights so hard for just isn't there. I can't explain the feelings that come along with these episodes. It's pure adrenaline and prayer. Prayers that we make it in time, prayers that nothing happens on the flight, prayers that it will be "fixed" and that she'll bounce back quickly to her normal, happy self.
It took a few days this time, that did not go unnoticed by any of the neurosurgeons. I have since discovered that it may be her Posterior Fossa Cyst (her Dandy-Walker cyst) that may be the problem and not the shunted area of her brain. The Posterior Fossa Cyst is a fluid filled pouch that is where the cerebellum area of Madilyn's brain is supposed to be. I vividly recall the nurse from Special Needs pointing out the fact that the Posterior Fossa Cyst was smaller on the MRI than it was 6 months ago. It's time for me to address this with our neurosurgeon and see what he feels. I know of two little girls that passed away because of the Dandy-Walker cyst and sudden pressure changes in it and I know of one other that had to have it decompressed because of the issues it was causing. This terrifies me. Nobody ever said that this could happen, it's never been talked about and when I learned about it (from other mom's) I felt like I had been sucker punched. Of course, neurosurgery is our 7th and final appointment late Wednesday afternoon so I have lots of time to make my lists of questions for him, and lots of time to pray.
I'll update after all of her appointments are over, all I know for sure at this moment is that Madilyn is snoring very loudly next to me and it makes me giggle. I also know that after her appointments tomorrow we are coming back here to find Nugget the dog, the house mascot and therapy dog. I think we needs some pictures with him and quite possibly some new little pink shoes.
Monday, October 27, 2014
Thursday, September 11, 2014
Some truth for you....(and me)...
I'd be a liar if I didn't say I'm tired...summer was not what I had hoped for and I feel like I blinked my eyes and it's fall and we're sick again. We got to enjoy one day...yes, I said one day at the beach this summer where we got to swim and enjoy family and one other day that we got to enjoy a picnic on the beach at a friend's camp. That was our summer. Madilyn doesn't tolerate the heat well so when it's above 75 degrees we are in the air conditioned house and as soon as it cools off we start enjoying daily walks and she ends up sick right away. Sick for us means breathing treatments every 4 hours with 3 different meds, steroids that have her bouncing off the walls, antibiotics that cause a whole other round of intestinal issues and puke...oh the puke...which leads to weight loss...it's a vicious circle and I'm tired...
We went to Milwaukee in July for appointments that went really well and almost exactly a month later we were air lifted to Milwaukee because Madilyn's feeding tube coiled from her intestines back up into her stomach which ended up making her really sick really quick. Feeding tolerance had not been achieved yet and now she's sick. Sometimes it feels like we'll never make feeding progress. It's the one mountain that I feel like we'll never climb successfully. Yet we keep trying, over and over and over....maybe someday we'll get there...at least I hope...I always have hope.
A life of seclusion is difficult, I feel like people sometimes forget about us. I understand why though. Why would my friends keep inviting me out when I never get to show up. I miss working, but that's not practical either with our special needs/medically complex life. My son had to get himself to college 10 hours away from home because our emergency med flight and inpatient stay made it impossible for us to get him there, physically and financially. My car needs new tires and the exhaust repaired and I have no clue where we will pull the money from. We have two trips coming up to Milwaukee in the end of September and again two weeks later. We need a specific weather cover for the stroller so we can be outside and Madilyn can be protected.........if it's not one thing it's another and there's never enough money or me to go around....but we'll figure it out, we always do.
The doctor recommended that I purchase/make signs to attach to the stroller/shopping cart etc..they are a stop sign and then a medical alert is printed on them clearly stating that we are a medically fragile child and please don't touch us.....like we don't feel secluded and alone enough now we're going to put a big red stop sign on us? I can't even begin to explain how this makes me feel....while I don't want people touching her and getting in her face I honestly don't know how I feel about the stop sign approach either.
I'm done whining...I'll have my good cry cause I'm exhausted and we'll move on and figure it out. That's what we do. We choose to focus on the positive, we have to....this virus has not landed us inpatient, we are able to be home....that's positive....and thanks to the drastic change in weather the little pink boots have been ordered.....cause our life is all about the little pink shoes..
We went to Milwaukee in July for appointments that went really well and almost exactly a month later we were air lifted to Milwaukee because Madilyn's feeding tube coiled from her intestines back up into her stomach which ended up making her really sick really quick. Feeding tolerance had not been achieved yet and now she's sick. Sometimes it feels like we'll never make feeding progress. It's the one mountain that I feel like we'll never climb successfully. Yet we keep trying, over and over and over....maybe someday we'll get there...at least I hope...I always have hope.
A life of seclusion is difficult, I feel like people sometimes forget about us. I understand why though. Why would my friends keep inviting me out when I never get to show up. I miss working, but that's not practical either with our special needs/medically complex life. My son had to get himself to college 10 hours away from home because our emergency med flight and inpatient stay made it impossible for us to get him there, physically and financially. My car needs new tires and the exhaust repaired and I have no clue where we will pull the money from. We have two trips coming up to Milwaukee in the end of September and again two weeks later. We need a specific weather cover for the stroller so we can be outside and Madilyn can be protected.........if it's not one thing it's another and there's never enough money or me to go around....but we'll figure it out, we always do.
The doctor recommended that I purchase/make signs to attach to the stroller/shopping cart etc..they are a stop sign and then a medical alert is printed on them clearly stating that we are a medically fragile child and please don't touch us.....like we don't feel secluded and alone enough now we're going to put a big red stop sign on us? I can't even begin to explain how this makes me feel....while I don't want people touching her and getting in her face I honestly don't know how I feel about the stop sign approach either.
I'm done whining...I'll have my good cry cause I'm exhausted and we'll move on and figure it out. That's what we do. We choose to focus on the positive, we have to....this virus has not landed us inpatient, we are able to be home....that's positive....and thanks to the drastic change in weather the little pink boots have been ordered.....cause our life is all about the little pink shoes..
Tuesday, August 5, 2014
We see what we want to see
We've been quiet for a while...my son graduated from high school and we've moved to a single story home..it was a crazy chaotic few months. This past month we've just enjoyed being settled and we've been to Milwaukee for 5 days for medical appointments (again). Madilyn's appointments went great. GI is thrilled with her growth since they upped her calories. It was the first time in 11 months that we finally had to increase her calories so she'd gain weight. She's just over 23 lbs now and almost 3 years old. The retina specialist was very happy too. The fluid pocket on her right eye is still there but it's very stable at this point and is not in a vision threatening position so that's a relief! It also means they don't have to put her under anesthesia again until December to look at it.
We're enjoying our new home and the Peanugga is learning to navigate her gait trainer outside in the grass. It's fun to watch her...she so LOVES it! She has learned that the road in front of our house has a very slight hill and she'll walk/run super quick for about 5 steps and then hang on her gait trainer and coast just like papa does when he's pushing her in the shopping cart. She giggles like crazy when she does it. She sure is smart.
With all of our accomplishments have come challenges. Madilyn is sleeping in her very own bedroom since moving and that's going really well. I now sleep with the video monitor...:) When it's warm outside as much as we love to be out there she still doesn't deal well at all with the heat. The combination of allergies and just her reactions to the warm temperatures usually mean tons of fun while playing and lots of vomit, sometimes for several hours after we've been outside....nobody can tell us why...(imagine that), it's just what she does....it's frustrating. Everything we do seems to have a trade off or consequence...we just have to weigh heavily if the consequence is worth it and how much stress it'll put on Madillyn's little body. Is it worth it to spend the entire day outside with family and having fun for her to be vomiting and exhausted for hours after? Sometimes it is....sometimes it isn't...it's all a huge juggling act....I'm terrified to drop the wrong ball...
Madilyn has been making huge progress with her speech and motor skills. She's pulling to stand on all of our furniture and she's an extremely busy 2 year old that doesn't hesitate to tell us no. So just when we're starting to feel like the worst of everything is maybe behind us we deal with the news that two little Dandy-Walker sweehthearts have earned their angel wings over the past 5 weeks because of this rare, nasty disease....and it makes my heart break...one of the families we followed in a group we belong to. Both of our girls had their shunt issues at the same time....my heart breaks for them.....that could be us...I try not to let my mind go there...it terrifies me...
Then to add to it we get the phone call....the dreaded phone call stating that a medical department closer to our home won't even see Madilyn because she's way too medically complex and fragile. She scares them, they refuse. It makes me want to scream! Madilyn has multiple medical diagnosis and they are all rare...one of them so rare that she's the only one in the world....she shouldn't be alive they tell us, she shouldn't be able to do anything they tell us............but she is and she does....I want them to see what we see. I want them to meet her before they shun her and see what a happy, beautiful little girl she is. They have never met her, they think that she's a vegetable because on paper that's what they say she should be.........I hate "they"...I hate that she's stereotyped and shunned and she's not even 3.....the ones that take the time to know us love her. She's an inspiration, not something to be feared. She's a sweet, adorable, loving little person....not just a medical anomaly...and something to be gawked at.....she's so much more than just their statistic, but they don't take the time to see that.......it makes me incredibly angry and sad all at the same time.....
"They" can see what they want....and I will see what I want...we live it every single day...it is our reality...we choose to live for the positive and focus on the good things otherwise the negative will suck us in and that's a place we don't want to be. We also choose to celebrate....the little pink crocs.....cause it's all about the little pink shoes...:)
We're enjoying our new home and the Peanugga is learning to navigate her gait trainer outside in the grass. It's fun to watch her...she so LOVES it! She has learned that the road in front of our house has a very slight hill and she'll walk/run super quick for about 5 steps and then hang on her gait trainer and coast just like papa does when he's pushing her in the shopping cart. She giggles like crazy when she does it. She sure is smart.
With all of our accomplishments have come challenges. Madilyn is sleeping in her very own bedroom since moving and that's going really well. I now sleep with the video monitor...:) When it's warm outside as much as we love to be out there she still doesn't deal well at all with the heat. The combination of allergies and just her reactions to the warm temperatures usually mean tons of fun while playing and lots of vomit, sometimes for several hours after we've been outside....nobody can tell us why...(imagine that), it's just what she does....it's frustrating. Everything we do seems to have a trade off or consequence...we just have to weigh heavily if the consequence is worth it and how much stress it'll put on Madillyn's little body. Is it worth it to spend the entire day outside with family and having fun for her to be vomiting and exhausted for hours after? Sometimes it is....sometimes it isn't...it's all a huge juggling act....I'm terrified to drop the wrong ball...
Madilyn has been making huge progress with her speech and motor skills. She's pulling to stand on all of our furniture and she's an extremely busy 2 year old that doesn't hesitate to tell us no. So just when we're starting to feel like the worst of everything is maybe behind us we deal with the news that two little Dandy-Walker sweehthearts have earned their angel wings over the past 5 weeks because of this rare, nasty disease....and it makes my heart break...one of the families we followed in a group we belong to. Both of our girls had their shunt issues at the same time....my heart breaks for them.....that could be us...I try not to let my mind go there...it terrifies me...
Then to add to it we get the phone call....the dreaded phone call stating that a medical department closer to our home won't even see Madilyn because she's way too medically complex and fragile. She scares them, they refuse. It makes me want to scream! Madilyn has multiple medical diagnosis and they are all rare...one of them so rare that she's the only one in the world....she shouldn't be alive they tell us, she shouldn't be able to do anything they tell us............but she is and she does....I want them to see what we see. I want them to meet her before they shun her and see what a happy, beautiful little girl she is. They have never met her, they think that she's a vegetable because on paper that's what they say she should be.........I hate "they"...I hate that she's stereotyped and shunned and she's not even 3.....the ones that take the time to know us love her. She's an inspiration, not something to be feared. She's a sweet, adorable, loving little person....not just a medical anomaly...and something to be gawked at.....she's so much more than just their statistic, but they don't take the time to see that.......it makes me incredibly angry and sad all at the same time.....
"They" can see what they want....and I will see what I want...we live it every single day...it is our reality...we choose to live for the positive and focus on the good things otherwise the negative will suck us in and that's a place we don't want to be. We also choose to celebrate....the little pink crocs.....cause it's all about the little pink shoes...:)
Thursday, May 22, 2014
Glimpses, glances and hopes
So I've been quiet for a little bit and it's because I've been struggling. We were placed on a new medication to help the Peanugga tolerate tummy (G) feeds better in hopes of less vomit and progress and it has been great. Too bad in the middle of it when we caught that first hopeful glimpse of coming off the J feeds she ended up throwing up while sleeping which startled her and she gasped right in the middle of it which resulted in our first encounter with aspiration pneumonia. When you hear "aspiration" anything it results in this unbelievable fear that our feeding issues may multiply. We've had therapists and doctor's in the past question how we've never dealt with this before with the massive amounts of vomit we have dealt with and all the major GERD/reflux issues. I'm not sure how we haven't but I'm very thankful that we didn't and I'm praying really hard that it was a total fluke one time incident. After the pneumonia we had a few really good days and got out to enjoy some nice weather and she ended up sick again.....allergies? maybe? The runny nose, coughing and congestion has made us stop all tummy feeds for an entire week because they all result in vomit. The vomit causes horrible stress for me...it causes weight worries, aspiration worries....It also causes me heartache and fear....for the first time in well over a year I finally caught a glimpse of what it would be like to have all tummy feeds and no more night feeds and it seems as quickly as I finally acknowledged that hope the whole thing blew up in my face. I can't even put into words how that makes me feel and add to it that we finally had her taking some foods by mouth and all of that stops too when the vomit starts....one step forward two steps back.....:(
On top of all of the "normal" Peanugga stuff in our lives we are getting ready for my son to graduate tomorrow. I never in a million years thought I'd be the boohoo mama but apparently that is exactly what I have turned in to. I am so incredibly proud of him and the young man he has turned out to be. He has had to grow up way too fast with all the unexpected events in our lives. It seems like if I blink my eyes it was just yesterday that it was him I was watching play on the floor and now he's all grown up. He is amazing to watch with Madilyn. I think her Uncle Thomas is her favorite person ever....they have a bond that I can't explain but when you see him with her it makes you tear up. Thankfully we have lots of family help with Madilyn so his graduation can be all about him.
There have been way too many times in the past two and a half years that my children and husband have voluntarily taken a backseat on my priority list in order for me to take care of Madilyn. They have never complained and for that I am thankful but it does not ease my own self-inflicted guilt that at times with all the travel and extended stays in Milwaukee that I feel my children are growing up without a mother. I am very thankful to all of their friends mother's that have stepped in as surrogates and cheered them on at their sporting events when I could not be there and have opened their hearts and homes to my children where they could escape and just be normal for a little while. Without you other mom's and dad's that have done this for my children they wouldn't be a wonderful as they are and you deserve that acknowledgement and my gratitude. I do find lately though that along with that gratitude comes some feeling of jealousy for all of the things that I have missed out on with them in my place.
I think it's time for me to invest in some pink shoes of my own for walking.....and to hold on to my hopes and dreams no matter how many road blocks and detours may be in the way.....after all, it's all about the pink shoes...
On top of all of the "normal" Peanugga stuff in our lives we are getting ready for my son to graduate tomorrow. I never in a million years thought I'd be the boohoo mama but apparently that is exactly what I have turned in to. I am so incredibly proud of him and the young man he has turned out to be. He has had to grow up way too fast with all the unexpected events in our lives. It seems like if I blink my eyes it was just yesterday that it was him I was watching play on the floor and now he's all grown up. He is amazing to watch with Madilyn. I think her Uncle Thomas is her favorite person ever....they have a bond that I can't explain but when you see him with her it makes you tear up. Thankfully we have lots of family help with Madilyn so his graduation can be all about him.
There have been way too many times in the past two and a half years that my children and husband have voluntarily taken a backseat on my priority list in order for me to take care of Madilyn. They have never complained and for that I am thankful but it does not ease my own self-inflicted guilt that at times with all the travel and extended stays in Milwaukee that I feel my children are growing up without a mother. I am very thankful to all of their friends mother's that have stepped in as surrogates and cheered them on at their sporting events when I could not be there and have opened their hearts and homes to my children where they could escape and just be normal for a little while. Without you other mom's and dad's that have done this for my children they wouldn't be a wonderful as they are and you deserve that acknowledgement and my gratitude. I do find lately though that along with that gratitude comes some feeling of jealousy for all of the things that I have missed out on with them in my place.
I think it's time for me to invest in some pink shoes of my own for walking.....and to hold on to my hopes and dreams no matter how many road blocks and detours may be in the way.....after all, it's all about the pink shoes...
Saturday, April 12, 2014
Blessings and changes
The last few months have been crazy for us. All of the time stuck at home between snow storms, freezing cold temperatures and health issues has made us a little shack happy. We've been to Milwaukee for appointments 5 times already since the end of January. This last trip was a girls trip. Madilyn and I brought my 12 year old daughter Shyanne with us so she could experience Children's Hospital and all of the things Madilyn goes through at her appointments.
After 8.5 hours of nonstop running from one appointment to another and all the poking and prodding Shyanne was as tired as us. We started our day with GI which is always great cause our GI doc loves Madilyn and the fact that she's gained so much weight. He is actually a little worried that she's still gaining too fast. Sometimes I feel like we can't win, too slow...too fast...where's the happy medium???
We've been having some issues with the g-tube (direct to her stomach) feeds that end up with vomiting episodes so GI has started her on a new medication that will hopefully help with that. Today was day #1 and we made it through all 3 g feeds with no vomiting or gagging so I am hopeful.
Next up was Endochrine and they monitor her growth really close. Her regular doctor was on vacation so we saw another one and when he saw her he said she needs growth hormones..NOW...I politely explained that she's been through enough and as long as she's proportionate she's fine, we're not injecting her daily just so she can be someone else's version of "normal"...she's been through enough and that is a battle we are choosing not to fight right now or probably ever. After Endochrine we went to the scoliosis clinic for the ortho doctor to see her for the first time. Madilyn had a very "functional shift" to one side due to vision issues for a very long time and with her hypotonia (low tone) they just like to see them to make sure everything is the way it should be and thankfully it is!
We then went to Interventional Radiology and finally got the feeding tube switched from a 12 inch long peg to a cute little glow in the dark button! They had to sedate her for this which was okay because she had a quick brain MRI right after it to check out her new shunt catheter. Both of these appointments went great and the neurosurgeon is very happy with the way her shunt is functioning so the day was a huge success in my book!
We're settling into our normal again after the shunt scare and are looking forward to hopefully staying home until July now. Her emergency shunt surgery eliminated one May appointment and when she had her eyes examined under anesthesia on March 21st the fluid pocket had improved so he is seeing her again in July instead of May. Hooray for an unexpected little break!
Madilyn's busy busy and never stops moving or chattering which is such a blessing for us. She also had her very first round of professional pictures today! I'll be sure to post one or two when we get them back. Pictures are not something we've ever been able to do as Madilyn does not cooperate and definitely runs the show. Thankfully the photographer (my friend Krista) had a ton of patience and it paid off!
Thankfully the snow is melting and we're finally seeing signs of Spring. I can't wait to be able to be outside with Madilyn in her gait trainer and watch her explore and be able to run around with other kids.....especially since we have new little pink tennis shoes...again...we love shoes.....it's all about the shoes!!
After 8.5 hours of nonstop running from one appointment to another and all the poking and prodding Shyanne was as tired as us. We started our day with GI which is always great cause our GI doc loves Madilyn and the fact that she's gained so much weight. He is actually a little worried that she's still gaining too fast. Sometimes I feel like we can't win, too slow...too fast...where's the happy medium???
We've been having some issues with the g-tube (direct to her stomach) feeds that end up with vomiting episodes so GI has started her on a new medication that will hopefully help with that. Today was day #1 and we made it through all 3 g feeds with no vomiting or gagging so I am hopeful.
Next up was Endochrine and they monitor her growth really close. Her regular doctor was on vacation so we saw another one and when he saw her he said she needs growth hormones..NOW...I politely explained that she's been through enough and as long as she's proportionate she's fine, we're not injecting her daily just so she can be someone else's version of "normal"...she's been through enough and that is a battle we are choosing not to fight right now or probably ever. After Endochrine we went to the scoliosis clinic for the ortho doctor to see her for the first time. Madilyn had a very "functional shift" to one side due to vision issues for a very long time and with her hypotonia (low tone) they just like to see them to make sure everything is the way it should be and thankfully it is!
We then went to Interventional Radiology and finally got the feeding tube switched from a 12 inch long peg to a cute little glow in the dark button! They had to sedate her for this which was okay because she had a quick brain MRI right after it to check out her new shunt catheter. Both of these appointments went great and the neurosurgeon is very happy with the way her shunt is functioning so the day was a huge success in my book!
We're settling into our normal again after the shunt scare and are looking forward to hopefully staying home until July now. Her emergency shunt surgery eliminated one May appointment and when she had her eyes examined under anesthesia on March 21st the fluid pocket had improved so he is seeing her again in July instead of May. Hooray for an unexpected little break!
Madilyn's busy busy and never stops moving or chattering which is such a blessing for us. She also had her very first round of professional pictures today! I'll be sure to post one or two when we get them back. Pictures are not something we've ever been able to do as Madilyn does not cooperate and definitely runs the show. Thankfully the photographer (my friend Krista) had a ton of patience and it paid off!
Thankfully the snow is melting and we're finally seeing signs of Spring. I can't wait to be able to be outside with Madilyn in her gait trainer and watch her explore and be able to run around with other kids.....especially since we have new little pink tennis shoes...again...we love shoes.....it's all about the shoes!!
Wednesday, March 19, 2014
Med flights and shunt malfunctions
We've been having some "issues" since early February, up until this past Saturday morning they were all chalked up to "it must be a virus". I absolutely positively despise those words. Those are a doctor's polite way of saying I have absolutely no clue what is wrong. Madilyn was fine on Friday morning and then she went down for her nap...when she woke up her eyes didn't look right. They tend to flutter when she's tired but they appeared to be little slits and when they were open her eyes were darting in completely opposite directions. I watched her closely for quite a while and then noticed she went completely cross-eyed...this NEVER happens and is a huge flag for a shunt malfunction. I also noticed her balance that we've worked so hard for was not there so I called Special Needs in Milwaukee and talked to them and brought her to our local emergency room.
It's difficult to explain the panic I felt bringing her there. One moment she appeared fine and the next everything was haywire. Thank god the local doctor that was on duty that evening knows me and Madilyn and knew something wasn't right. Med flight was arranged to bring us to Milwaukee and by 1:30 am we were on our way. This is the second time we had to med flight to Milwaukee and it scares the daylights out of me, Madilyn however, loves the plane ride...the ride doesn't bother me either it's just the circumstances surrounding it that tend to drive me crazy with worry and panic.
When we arrived at Children's Hospital emergency room the chaos ensued when the first ER doc acted like I was a little crazy....I do realize they deal with people every day that insist there's something wrong with their child when there really isn't, this however wasn't our case and I was adamant. They went over her labs from our local hospital, multiple doctors came and looked at Madilyn and talked to me and they finally sent us for shunt series x-rays. The doctor came in a little while later and said the shunt series showed absolutely no problem with it. I freaked out! At this point Madilyn had a constant tic on her left side and was unable to sit much less to anything else, she was struggling just to pick her head up and could barely open her eyes and the whole time she kept letting out with this horrid gut wrenching painful screech. I totally flipped on that doctor and demanded they do something because something was seriously wrong and for the third time in a year I could feel her slipping away from me.
He agreed to send us for a CT scan to check the shunt and within 35 minutes of heading to the scan we were heading to emergency surgery. The catheter part of her shunt that goes into the ventricle and does the draining had come out and the pressure on her brain was building quickly. Surgery last an hour and a half and thankfully all of her symptoms were gone afterwards. It amazes me that they can open up their head and repair something that goes into her brain and less than 24 hours later we were ready to come home.
We were informed by the neurosurgeon that all of the feeding "virus" issues that sent us to Milwaukee in mid-February and the sleep issues were probably all the shunt starting to malfunction. My gut told me then that they missed something but it wasn't a feeling that made me panic like when she woke from her nap that day. That day was the third time in 13 months that I was told that if I didn't trust my instincts and had just put her to bed she probably would've never woken up. Those are the hardest words I have ever heard and hearing them once was awful but three times....CRAZY!!!
I don't focus on the "what could've happened" because I trusted my gut and it turned out for the best and if I focus on what could've happened I will miss out on way to much of the now. It does put it into perspective just how precious every single moment is in our lives. They don't give us life expectancy guesses with Madilyn because they don't know. She could live for 70 years or 7...they've never seen her grouping of rare diseases and her complex X-chromosome abnormality they know nothing about so we choose to make long-term plans but we live in the now and are thankful for every single moment that we get.
As we are really wanting to just recuperate from this whole thing life must go on and we are packing to head to Milwaukee again for another eye exam under anesthesia to make sure the fluid pocket hasn't moved. So for the next few days we will pray exceptionally hard for no changes, we will enjoy every moment and we will wear her new little pink shoes......cause that's what it's really about.....those little pink shoes.
It's difficult to explain the panic I felt bringing her there. One moment she appeared fine and the next everything was haywire. Thank god the local doctor that was on duty that evening knows me and Madilyn and knew something wasn't right. Med flight was arranged to bring us to Milwaukee and by 1:30 am we were on our way. This is the second time we had to med flight to Milwaukee and it scares the daylights out of me, Madilyn however, loves the plane ride...the ride doesn't bother me either it's just the circumstances surrounding it that tend to drive me crazy with worry and panic.
When we arrived at Children's Hospital emergency room the chaos ensued when the first ER doc acted like I was a little crazy....I do realize they deal with people every day that insist there's something wrong with their child when there really isn't, this however wasn't our case and I was adamant. They went over her labs from our local hospital, multiple doctors came and looked at Madilyn and talked to me and they finally sent us for shunt series x-rays. The doctor came in a little while later and said the shunt series showed absolutely no problem with it. I freaked out! At this point Madilyn had a constant tic on her left side and was unable to sit much less to anything else, she was struggling just to pick her head up and could barely open her eyes and the whole time she kept letting out with this horrid gut wrenching painful screech. I totally flipped on that doctor and demanded they do something because something was seriously wrong and for the third time in a year I could feel her slipping away from me.
He agreed to send us for a CT scan to check the shunt and within 35 minutes of heading to the scan we were heading to emergency surgery. The catheter part of her shunt that goes into the ventricle and does the draining had come out and the pressure on her brain was building quickly. Surgery last an hour and a half and thankfully all of her symptoms were gone afterwards. It amazes me that they can open up their head and repair something that goes into her brain and less than 24 hours later we were ready to come home.
We were informed by the neurosurgeon that all of the feeding "virus" issues that sent us to Milwaukee in mid-February and the sleep issues were probably all the shunt starting to malfunction. My gut told me then that they missed something but it wasn't a feeling that made me panic like when she woke from her nap that day. That day was the third time in 13 months that I was told that if I didn't trust my instincts and had just put her to bed she probably would've never woken up. Those are the hardest words I have ever heard and hearing them once was awful but three times....CRAZY!!!
I don't focus on the "what could've happened" because I trusted my gut and it turned out for the best and if I focus on what could've happened I will miss out on way to much of the now. It does put it into perspective just how precious every single moment is in our lives. They don't give us life expectancy guesses with Madilyn because they don't know. She could live for 70 years or 7...they've never seen her grouping of rare diseases and her complex X-chromosome abnormality they know nothing about so we choose to make long-term plans but we live in the now and are thankful for every single moment that we get.
As we are really wanting to just recuperate from this whole thing life must go on and we are packing to head to Milwaukee again for another eye exam under anesthesia to make sure the fluid pocket hasn't moved. So for the next few days we will pray exceptionally hard for no changes, we will enjoy every moment and we will wear her new little pink shoes......cause that's what it's really about.....those little pink shoes.
Friday, February 28, 2014
Living with multiple rare diseases and the things nobody ever told me...
Today is Rare Disease Day and it's time to share more details of what it's like living with multiple rare diseases. There are a lot of things nobody ever told us when we started this journey with Madilyn and they still don't say it...maybe because it's not politically correct or it's discouraging or because they just don't know what to say. I'm going to take the liberty of saying it for them...
1. Living with multiple rare diseases and special needs is lonely.....you feel very alone and in most cases you are. In our case there is nobody else in the world that lives with the Complex X-chromosome abnormality that Madilyn has and her other diagnosis like the Dandy-Walker Syndrome, Turner's Syndrome Mosaic, her feeding disorder, hydrocephalus, hypotonia, and ROP (vision) are all rare....if it wasn't for the internet I wouldn't know anyone at all with her diagnosis.
2. Rare disease pretty much equals no answers ever. Madilyn has some of the top specialists in the world overseeing her medical needs and we rarely ever get answers. I'm not sure, I don't know and let's try this and see what happens are the most common answers we hear. Unbelievably frustrating and at the same time these answers become oddly acceptable because when there is no funding (or very minimal) for research how can we ever expect them to be able to answer our questions. Everything is a giant game of chance, maybe it'll work, maybe it won't.
3. You learn your own language. Madilyn is starting to talk now but there are a lot of rare disease/special needs children that don't and her vocabulary is no where big enough to communicate some very key things. I never really realized how Madilyn and I communicate because we do it every day so when my nephew was here a few weeks ago he was watching Madilyn and I together and he said "it's so cool to watch you two, it's like you have your own little language"........it made me smile cause yes we sure do..you have to in order to do what's best for your child.
4. You will feel tremendous envy when your other family members and friends get to go on with their "normal" lives and yours is like planning a trip to Alaska just to make it to therapy and the grocery store in the same day.
5. People will stare...oh boy do they stare when we go into a public place hooked up to the feeding pump and with her little glasses on....it's okay...let them stare, it doesn't hurt anything.
6. People will talk....If I had a nickel for every time a stranger in Walmart feels the need to tell me my child looks so tired and needs a nap I'd be rich. I usually just smile and say yes she is, because she is....but here's the real reason...Madilyn's muscles don't always work like ours do..with her hypotonia holding her head up and sitting are not simple like they are for us so when I have her in a shopping cart it's a ton of work for her to keep her head up constantly with no type of support behind her to help her out. So yes, she's tired but not for the reasons people think. I've actually found myself going into explanation if the same person has said this to me more than once because I feel the need to educate everyone in regards to Madilyn. This often leaves me with people telling me how sorry they are, which leaves me more frustrated because sympathy is not what I am looking for.
7. There is never enough money. All the trips to see her doctor's and specialty items she needs are crazy expensive....I can't just sit her in a chair, she will fall out on her head, or jump out because she's constantly sensory seeking and has the highest pain tolerance ever. I can't sit her on the floor and walk away...that's getting better but everything takes time....1000 times longer than with normal children.....and costs so much more. It forces me to be creative out of necessity...I'll figure out a way to modify the $30 chair to suit our needs because I don't have the minimum of $300-over $1000 to purchase the ones that are made for children like her.
8. Your rare disease/special needs child will teach you more patience, tolerance, compassion and creativity than you ever knew existed but at the end of the day we are still human. I was up one night several weeks ago and found myself mentally giving kudos to the guy that had the courage to publish the book (for adults) called Go the F#@k to Sleep. I actually giggled out loud as Madilyn is standing on my lap holding my hands squealing and flinging herself wildly back and forth with that constant sensory seeking need that drives her. It was probably the lack of sleep that got to me but when I acknowledged at the moment that I totally and completely understood the book I read once years ago it made me feel normal. It made me feel like we were normal....I never said it out loud and never thought I'd put that thought in print....but it was a totally liberating and humorous moment for a Nana that rarely ever gets to sleep. It's funny how your thoughts change throughout time...up until recently I always said she can keep me up all night if she wants as long as she's here with us and thriving....well she's here and she's absolutely thriving and now I want her to learn to sleep...:)
9. Your therapists and nurses will become your "friends" because your friends are too busy having their own life and don't understand yours. I am learning that we tend to make people uncomfortable, in reality I would be uncomfortable watching us from the outside. The reality is most days making it to a 5 minute shower is a huge accomplishment. Our "normal" freaks people out....suction bags, feeding tubes and VP shunts and gait trainers are our normal.......it's okay if you're freaked out and I won't be offended if you tell me that.
10. Find a friend, that lives a similar life to you, it will improve your life dramatically. When you have another child that isn't "normal" and your kids can just be who they are and play it's awesome! When you can sit and rattle off tests and other medical/therapy terminology without having to give descriptions because they understand already what you're talking about makes you feel normal for a while. You live the life and when you can find that one other person that truly understands it and isn't just feeling sorry for you it's amazing. I found that, finally, 2 years into this life I found that. I can't explain how liberating it is to be able to text someone and simply state...I want to scream....and they don't think you're crazy, they just get it. For me this friend was the biggest missing chunk to our rare disease filled special needs life. It's like the missing puzzle piece has been found and our girls are AMAZING to watch together...they are inspiring!
11. My last one...I promise...bug everyone you know to raise awareness...if people don't know what you live with they will never understand it. I don't expect them to understand it anyway but I hope it will make them a little more tolerant and compassionate towards others.
You can't always see rare disease on someone's face or in their external appearance at all so before you judge someone think twice because you never know what they are living with......
1. Living with multiple rare diseases and special needs is lonely.....you feel very alone and in most cases you are. In our case there is nobody else in the world that lives with the Complex X-chromosome abnormality that Madilyn has and her other diagnosis like the Dandy-Walker Syndrome, Turner's Syndrome Mosaic, her feeding disorder, hydrocephalus, hypotonia, and ROP (vision) are all rare....if it wasn't for the internet I wouldn't know anyone at all with her diagnosis.
2. Rare disease pretty much equals no answers ever. Madilyn has some of the top specialists in the world overseeing her medical needs and we rarely ever get answers. I'm not sure, I don't know and let's try this and see what happens are the most common answers we hear. Unbelievably frustrating and at the same time these answers become oddly acceptable because when there is no funding (or very minimal) for research how can we ever expect them to be able to answer our questions. Everything is a giant game of chance, maybe it'll work, maybe it won't.
3. You learn your own language. Madilyn is starting to talk now but there are a lot of rare disease/special needs children that don't and her vocabulary is no where big enough to communicate some very key things. I never really realized how Madilyn and I communicate because we do it every day so when my nephew was here a few weeks ago he was watching Madilyn and I together and he said "it's so cool to watch you two, it's like you have your own little language"........it made me smile cause yes we sure do..you have to in order to do what's best for your child.
4. You will feel tremendous envy when your other family members and friends get to go on with their "normal" lives and yours is like planning a trip to Alaska just to make it to therapy and the grocery store in the same day.
5. People will stare...oh boy do they stare when we go into a public place hooked up to the feeding pump and with her little glasses on....it's okay...let them stare, it doesn't hurt anything.
6. People will talk....If I had a nickel for every time a stranger in Walmart feels the need to tell me my child looks so tired and needs a nap I'd be rich. I usually just smile and say yes she is, because she is....but here's the real reason...Madilyn's muscles don't always work like ours do..with her hypotonia holding her head up and sitting are not simple like they are for us so when I have her in a shopping cart it's a ton of work for her to keep her head up constantly with no type of support behind her to help her out. So yes, she's tired but not for the reasons people think. I've actually found myself going into explanation if the same person has said this to me more than once because I feel the need to educate everyone in regards to Madilyn. This often leaves me with people telling me how sorry they are, which leaves me more frustrated because sympathy is not what I am looking for.
7. There is never enough money. All the trips to see her doctor's and specialty items she needs are crazy expensive....I can't just sit her in a chair, she will fall out on her head, or jump out because she's constantly sensory seeking and has the highest pain tolerance ever. I can't sit her on the floor and walk away...that's getting better but everything takes time....1000 times longer than with normal children.....and costs so much more. It forces me to be creative out of necessity...I'll figure out a way to modify the $30 chair to suit our needs because I don't have the minimum of $300-over $1000 to purchase the ones that are made for children like her.
8. Your rare disease/special needs child will teach you more patience, tolerance, compassion and creativity than you ever knew existed but at the end of the day we are still human. I was up one night several weeks ago and found myself mentally giving kudos to the guy that had the courage to publish the book (for adults) called Go the F#@k to Sleep. I actually giggled out loud as Madilyn is standing on my lap holding my hands squealing and flinging herself wildly back and forth with that constant sensory seeking need that drives her. It was probably the lack of sleep that got to me but when I acknowledged at the moment that I totally and completely understood the book I read once years ago it made me feel normal. It made me feel like we were normal....I never said it out loud and never thought I'd put that thought in print....but it was a totally liberating and humorous moment for a Nana that rarely ever gets to sleep. It's funny how your thoughts change throughout time...up until recently I always said she can keep me up all night if she wants as long as she's here with us and thriving....well she's here and she's absolutely thriving and now I want her to learn to sleep...:)
9. Your therapists and nurses will become your "friends" because your friends are too busy having their own life and don't understand yours. I am learning that we tend to make people uncomfortable, in reality I would be uncomfortable watching us from the outside. The reality is most days making it to a 5 minute shower is a huge accomplishment. Our "normal" freaks people out....suction bags, feeding tubes and VP shunts and gait trainers are our normal.......it's okay if you're freaked out and I won't be offended if you tell me that.
10. Find a friend, that lives a similar life to you, it will improve your life dramatically. When you have another child that isn't "normal" and your kids can just be who they are and play it's awesome! When you can sit and rattle off tests and other medical/therapy terminology without having to give descriptions because they understand already what you're talking about makes you feel normal for a while. You live the life and when you can find that one other person that truly understands it and isn't just feeling sorry for you it's amazing. I found that, finally, 2 years into this life I found that. I can't explain how liberating it is to be able to text someone and simply state...I want to scream....and they don't think you're crazy, they just get it. For me this friend was the biggest missing chunk to our rare disease filled special needs life. It's like the missing puzzle piece has been found and our girls are AMAZING to watch together...they are inspiring!
11. My last one...I promise...bug everyone you know to raise awareness...if people don't know what you live with they will never understand it. I don't expect them to understand it anyway but I hope it will make them a little more tolerant and compassionate towards others.
You can't always see rare disease on someone's face or in their external appearance at all so before you judge someone think twice because you never know what they are living with......
Friday, February 14, 2014
Feeding Frustrations and Awareness
February 9-15th is National Feeding Tube Awareness Week....how appropriate considering the week we've had. Madilyn was doing awesome until a little over a week ago. She was up to 21 pounds 5 ounces and we were starting feeds into her stomach again and making really good, quick progress......and then she caught a slight cold. When I say slight I mean slight...low grade fever for 48 hours and some sneezing, that's it. No big deal....right? Think again.
We started Saturday suddenly puking up a few feeds and waking 3 to 4 hours after starting her night feed just screaming. Screaming like she was in unbearable pain and gagging and puking. We slowed and diluted the feeds for a few days and nothing seemed to help. Tuesday I weighed her and she was down to 20 pounds 7 ounces in less than a week so I called her GI doctor in Milwaukee and they feared that her feeding tube had either kinked or become displaced so it was an emergency trip to Milwaukee on Wednesday for a 15 minute appointment to check placement. Her tube was fine.......
I'm very thankful her tube was still in place but it still doesn't answer what's going on with her then. They have us slowing her feeds way down which means we are spending 18+ hours per day hooked up to the feeding pump again and she's still not gaining weight yet. There are times that we have no choice but to unhook her regardless of her much needed caloric intake as she begins to relentlessly gag herself. She crams that little fist all the way down into her throat and is digging at her throat...she used to do this before her stomach finally healed after her tube change surgery last August. Now the difference is she's older and does it with a vengeance because she needs some type of relief from whatever is bothering her internally. It scares me when she does it because she has made herself bleed and I fear that she will do damage to her throat or esophagus. It's times like this that I wish she had more of a vocabulary and could tell me what's wrong. When she's not feeding she's happy as can be which leaves me even more perplexed.
I cannot even begin to explain the frustration I feel after driving 7 hours one way for an emergency appointment and coming out with absolutely no answers. They instructed us to slow her feeds down even more and to call on Monday with an update and if she's still not gaining weight and tolerating better than it's back to Milwaukee to be inpatient so they can watch and observe and attempt to figure out what's going on.
It's crushing to realize just how quickly all the progress we've made with the feedings can so quickly be undone....and all from a minuscule little cold.....I can't even begin to explain the tremendous amount of grief it causes me.
I keep praying that she'll wake up and her feeds will suddenly go fine and her weight will jump up but I know the cold hard reality of it is that with a tube fed immune compromised child like Madilyn one bad day can undo months of progress.....I just pray we don't end up inpatient. I pray that all the recent gagging and vomiting will not completely undo all the progress we've made with her oral aversion. We finally had her putting food into her mouth for the first time in just over a year......
It's heartbreaking and frustrating and it's our life. With children like Madilyn we live with the unknown every single day. Unfortunately the doctor's not having any answers for us is more the norm than the rare occasion. So when you're healthy little one wants just one more cookie .....please give it to them and count your blessings to be able to do something so normal.....
We started Saturday suddenly puking up a few feeds and waking 3 to 4 hours after starting her night feed just screaming. Screaming like she was in unbearable pain and gagging and puking. We slowed and diluted the feeds for a few days and nothing seemed to help. Tuesday I weighed her and she was down to 20 pounds 7 ounces in less than a week so I called her GI doctor in Milwaukee and they feared that her feeding tube had either kinked or become displaced so it was an emergency trip to Milwaukee on Wednesday for a 15 minute appointment to check placement. Her tube was fine.......
I'm very thankful her tube was still in place but it still doesn't answer what's going on with her then. They have us slowing her feeds way down which means we are spending 18+ hours per day hooked up to the feeding pump again and she's still not gaining weight yet. There are times that we have no choice but to unhook her regardless of her much needed caloric intake as she begins to relentlessly gag herself. She crams that little fist all the way down into her throat and is digging at her throat...she used to do this before her stomach finally healed after her tube change surgery last August. Now the difference is she's older and does it with a vengeance because she needs some type of relief from whatever is bothering her internally. It scares me when she does it because she has made herself bleed and I fear that she will do damage to her throat or esophagus. It's times like this that I wish she had more of a vocabulary and could tell me what's wrong. When she's not feeding she's happy as can be which leaves me even more perplexed.
I cannot even begin to explain the frustration I feel after driving 7 hours one way for an emergency appointment and coming out with absolutely no answers. They instructed us to slow her feeds down even more and to call on Monday with an update and if she's still not gaining weight and tolerating better than it's back to Milwaukee to be inpatient so they can watch and observe and attempt to figure out what's going on.
It's crushing to realize just how quickly all the progress we've made with the feedings can so quickly be undone....and all from a minuscule little cold.....I can't even begin to explain the tremendous amount of grief it causes me.
I keep praying that she'll wake up and her feeds will suddenly go fine and her weight will jump up but I know the cold hard reality of it is that with a tube fed immune compromised child like Madilyn one bad day can undo months of progress.....I just pray we don't end up inpatient. I pray that all the recent gagging and vomiting will not completely undo all the progress we've made with her oral aversion. We finally had her putting food into her mouth for the first time in just over a year......
It's heartbreaking and frustrating and it's our life. With children like Madilyn we live with the unknown every single day. Unfortunately the doctor's not having any answers for us is more the norm than the rare occasion. So when you're healthy little one wants just one more cookie .....please give it to them and count your blessings to be able to do something so normal.....
Wednesday, January 15, 2014
Blessings and meltdowns
We just returned from Milwaukee and our first round of good appointments for this year. Madilyn has a fluid pocket on her right eye that could potentially detach her retina. It was discovered in November during her eye exam under anesthesia. Dr. Han (the retina specialist) feared it may detach in between appointments or that it would progress and he'd have to do another scleral buckle both outcomes could quite possibly leave her completely blind. We were blessed and there was no change. It is maintaining and we will return in March for another eye exam under anesthesia to monitor, as we do every two months. We'll continue to pray that it doesn't change or that it goes away, in the mean time we count our blessings every single day that she wakes up and can see us.
We next saw her GI doctor and he couldn't be more pleased with how much she's growing and how much she has progressed and changed since her surgery in August. We see him every three months but he was nice and let us slide a few extra weeks this time since she was gaining so well and didn't make us travel right before Christmas. Once again we count our blessings.
Our trip was extremely emotional, like riding a roller coaster. I don't know how to explain the emotions that come along with knowing your child is going into surgery with vision in only one eye and could potentially come out with none because they're trying to save it. When Madilyn had the first scleral buckle done the scar tissue she produced afterwards did more damage, the bad almost outweighed the good. We go into this now knowing that the scleral buckle may be our only hope each and every time she goes into that surgery so we pray. Every single morning that she wakes up and I know she can still see me brings me to tears.....and again, I count my many blessings.
I also got to witness her GJ feeding tube change on this trip. It is done in Intervention Radiology and is painless for Madilyn other than she gets mad cause I had to hold her still for two minutes while they did it. We all know how much two year olds love to be held still...she was one angry little girl, thankfully it's super quick and the staff was awesome. Once again I count my many blessings.
After the roller coaster ride we head home with happy reviews and run into horrible weather and the first leg of the trip that normally takes 2 hours takes 5. The first part when we could have easily turned off was all right and of course when we should have stopped there was nowhere to go. The stretch of nothingness seems never ending when you're going 5 mph trying to keep a toddler occupied while she's gagging herself every two seconds and throwing up because her throat is so irritated from the anesthesia the previous day.
It's after the weather clears when I admit to my husband how scared I was but everything is clear and we keep heading towards home. At this point the toddler is finally sleeping peacefully after hours of Roli Poli Olli on the portable DVD player (if I never hear that again it's too soon...). It's in this clear silent stretch somewhere between Crivitz and Iron Mountain that everything crashes in on me and the tears start. Unstoppable tears of relief and frustration. Relief she can still see, frustration cause the relief only lasts for a moment. Tears of fear because the GI doctor wants us to start doing daytime bolus feeds again with Madilyn. Bolus feeds for me bring back months and months of massive vomiting and our life revolving around a feeding/puking schedule. At the same time I am hopeful that her stomach is healed enough to handle the feeds without the vomiting.
It's during this time that I am thankful that my husband is focused on driving or obliviously lost in his own whirlwind of emotions and just lets me cry, I don't want to talk, just cry. This seems to have become somewhat of a ritual for me, one I feel I have no control over. Either way when it's over and I'm done crying my tears of happiness, relief, anger and frustration I look into the face of that sweet little girl that calls me Nana and count my blessings. I chuckle to myself at how far we've come because this is the first trip that she actually told the surgical prep nurse No...a very clear, very distinct no when she wanted to check her vitals. She also yelled at the GI doctor until her told her he was only going to listen to her and she understood and stopped yelling and let him listen to her.
It's hard to explain the emotions that come along with Madilyn's reactions to walking through the skywalk at the hospital. She knows where we are and she knows she'll get poked and prodded and doesn't hesitate to express her dislike of the whole situation. The older she gets the harder it gets, at least when she was smaller she was oblivious......I thank god every single day for the progress we've made but at the same time question all the time why children like my Madilyn have to go through the things that they do. She doesn't like them touching her, the whole experience is very upsetting to her and to us. No matter how great the appointments are I come home feeling like I've been hit by a truck and so does Madilyn. We always take the day after we get home off........off from therapies, off from visitors and just hang out in our jammies at home and play. It is much needed down time that we don't get very often.
Just when I think the roller coaster has almost slowed to a stop it's time to call and schedule the next round of appointments....the last few times I've let Special Needs Care Coordination handle this for me but this time I did it myself...........so the coaster is set at a slow, straight, steady cruise for two months...where we'll be busy making progress at home and getting ready for the March, April and May appointments....but most of all we'll be busy counting our blessings.....
We next saw her GI doctor and he couldn't be more pleased with how much she's growing and how much she has progressed and changed since her surgery in August. We see him every three months but he was nice and let us slide a few extra weeks this time since she was gaining so well and didn't make us travel right before Christmas. Once again we count our blessings.
Our trip was extremely emotional, like riding a roller coaster. I don't know how to explain the emotions that come along with knowing your child is going into surgery with vision in only one eye and could potentially come out with none because they're trying to save it. When Madilyn had the first scleral buckle done the scar tissue she produced afterwards did more damage, the bad almost outweighed the good. We go into this now knowing that the scleral buckle may be our only hope each and every time she goes into that surgery so we pray. Every single morning that she wakes up and I know she can still see me brings me to tears.....and again, I count my many blessings.
I also got to witness her GJ feeding tube change on this trip. It is done in Intervention Radiology and is painless for Madilyn other than she gets mad cause I had to hold her still for two minutes while they did it. We all know how much two year olds love to be held still...she was one angry little girl, thankfully it's super quick and the staff was awesome. Once again I count my many blessings.
After the roller coaster ride we head home with happy reviews and run into horrible weather and the first leg of the trip that normally takes 2 hours takes 5. The first part when we could have easily turned off was all right and of course when we should have stopped there was nowhere to go. The stretch of nothingness seems never ending when you're going 5 mph trying to keep a toddler occupied while she's gagging herself every two seconds and throwing up because her throat is so irritated from the anesthesia the previous day.
It's after the weather clears when I admit to my husband how scared I was but everything is clear and we keep heading towards home. At this point the toddler is finally sleeping peacefully after hours of Roli Poli Olli on the portable DVD player (if I never hear that again it's too soon...). It's in this clear silent stretch somewhere between Crivitz and Iron Mountain that everything crashes in on me and the tears start. Unstoppable tears of relief and frustration. Relief she can still see, frustration cause the relief only lasts for a moment. Tears of fear because the GI doctor wants us to start doing daytime bolus feeds again with Madilyn. Bolus feeds for me bring back months and months of massive vomiting and our life revolving around a feeding/puking schedule. At the same time I am hopeful that her stomach is healed enough to handle the feeds without the vomiting.
It's during this time that I am thankful that my husband is focused on driving or obliviously lost in his own whirlwind of emotions and just lets me cry, I don't want to talk, just cry. This seems to have become somewhat of a ritual for me, one I feel I have no control over. Either way when it's over and I'm done crying my tears of happiness, relief, anger and frustration I look into the face of that sweet little girl that calls me Nana and count my blessings. I chuckle to myself at how far we've come because this is the first trip that she actually told the surgical prep nurse No...a very clear, very distinct no when she wanted to check her vitals. She also yelled at the GI doctor until her told her he was only going to listen to her and she understood and stopped yelling and let him listen to her.
It's hard to explain the emotions that come along with Madilyn's reactions to walking through the skywalk at the hospital. She knows where we are and she knows she'll get poked and prodded and doesn't hesitate to express her dislike of the whole situation. The older she gets the harder it gets, at least when she was smaller she was oblivious......I thank god every single day for the progress we've made but at the same time question all the time why children like my Madilyn have to go through the things that they do. She doesn't like them touching her, the whole experience is very upsetting to her and to us. No matter how great the appointments are I come home feeling like I've been hit by a truck and so does Madilyn. We always take the day after we get home off........off from therapies, off from visitors and just hang out in our jammies at home and play. It is much needed down time that we don't get very often.
Just when I think the roller coaster has almost slowed to a stop it's time to call and schedule the next round of appointments....the last few times I've let Special Needs Care Coordination handle this for me but this time I did it myself...........so the coaster is set at a slow, straight, steady cruise for two months...where we'll be busy making progress at home and getting ready for the March, April and May appointments....but most of all we'll be busy counting our blessings.....
Wednesday, January 8, 2014
Wishes and Reality
I spent all of last year wishing and wishing for less trips in 2014. I can't even begin to count how many times I've sat down and tried to figure out how to make less trips to Milwaukee. The countless hours wishing and praying for less trips. We had ten of them last year and more than half were anywhere from 4-5 days. Oh how I wished for less trips.....................
Then we saw the retina specialist in November and he completely crashed that idea when he discovered the fluid pocket on Madilyn's right eye (the only eye she has any vision) and we went from seeing him every six months right back to every two. I was crushed............
We also found out around that time that a hospital only two hours away vs the 7 we travel is capable of doing Madilyn's G/J feeding tube changes every 3 months and I got sooooo excited............and then they refused to see her because her medical history/diagnosis is so complex.........they're afraid of her. So once again I was crushed..............
So I had my pity party (which lasted about 8 minutes) and reassessed the situation and made my wishes more compatible with my reality. We traded the most beautiful, luxurious, spacious gas guzzling Tahoe for a comfy, fun to drive and fuel efficient car.......we ordered a portable DVD player to entertain the Peanugga on these trips so she can watch her favorite cartoons and listen to her music videos in the car and during the long days at the hospital during appointments..........and I altered my wishes.
Now I wish for good appointments instead of less. I wish for the chance to go to the zoo and the aquarium while on these trips and to have at least one meal that doesn't come from a drive-thru, hospital cafeteria or mall food court on at least half of the upcoming trips. I've come to terms with the fact that no matter how "healthy" we get Madilyn and regardless of how much she is thriving all the risk factors are still there. I've accepted that no matter what they will still want to physically see her in order to monitor her and in most departments they have no other option. Neonatal Development has to see her twice per year to track her progress to assign or redirect therapies for her, Endochrine has to track her growth, GI has to monitor her growth and her feeding tube, Neurology has to monitor her shunt and her Dandy-Walker, the retina specialist has to continually see her in hopes of maintaining her vision, the ophthalmologist has to see her to moni.tor her glasses/vision needs and Genetics has to see her because she is one of a kind in the world so they have to monitor her because she wasn't even supposed to live with her chromosome lines much less thrive. So we wish for good trips and happy specialists and for no life threatening illnesses this year.
In the past few months we've had never ending ear infections (at least it felt that way with 3 in a row)...c-diff and 2-year molars and through it all Madilyn has made huge progress...she went from being completely uncooperative at physical therapy to showing off. She's taking steps and running everywhere in her walker which is awesome because we get her gait trainer (a walking aid) in two weeks and are very excited. She's suddenly back to putting food and everything else in her mouth so it makes me hopeful that she will start to consume something orally instead of just through her feeding tube. We are also nowhere near as dependent on the suction bag because her stomach is finally healing and that is amazing!!
I guess sometimes I forget how complex Madilyn is medically because we live it every single day. We don't take anything at all for granted but at the same time it is our "normal". My "job" is different therapy appointments 5 days a week, feeding tubes, shunt function and having fun with the sweetest little girl ever who has the most amazing belly laughs I have ever heard. If you had to wait over 1 1/2 years to hear those laughs finally come out you would totally understand why they bring tears to my eyes every single time.......to me, it is the most beautiful sound ever.....
So we still wish and dream because without wishes and dreams life doesn't have meaning.........we just make sure those wishes aren't quite so unattainable..........and we will shop for new little pink tennis shoes because in reality it's all about the little pink shoes...........
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