Maryah January 10th I drove my 2 year old daughter to kansas city, mo childrens mercy, because she was sleeping for 24 hours, after not sleeping for more than 30 min in a span of 3 MONTHS. Her soft spot on her head which usually closes on infants, was never closed, along with her head seemed to be filled up to the point it was bulging. These were all signs of her hydrocephalus which was causing the preassure on her head. Upon arrival to childrens mercy ER they evaluated her noticing first that her blood sugars were dangerously low hitting the 20's ( most patients would be passing out or even in a coma at these low levels ) but she was seeming to maintain on the outside. They werent able to find any signs of pressure on the brain through the initial check up. MULTIPLE TESTS were ran four HOURS, and we were admitted under the assumption this had to be from her head. The first couple weeks was absolute insanity. During this time maryah's temperature was dropping low to 94°, as well as shooting back up to as high as 104°. We were piling on blankets to raise her temps when they dropped low, but because of her blood sugar instability she would sweat the iv's tape off and was constantly getting new iv's along with blood sugar tests every 30 min. She had blood scabes and scares everywhere from all the pokes all over her body. Neurology had found some scans taken at via christi's pediatric neurologist that she was in fact missing her patuitary gland. We had never been told this out of 2 years and multiple scans and neuro appointments in wichita. In fact our neurologist at via christi always stated she just had hydrocephalus and all of her symptoms were from headaches, but everything else seemed fine. They stated that things for maryah would be slower and smaller which we assumed by just looking at her. We were on 4 medications just for these so called headaches for 2 YEARS. Along with finding out her patuitary was missing, we were able to actually view her brain with the neuro team and could instantly see the differences ( which we never had an opportunity to do so in wichita ). We all know what a normal brain looks like, and it is definitely not equal on both sides. We soon were introduced to an endocrinologist that performed multiple tests on maryah. They tested all of her hormones so we could begin the replacement. She was given a growth hormone shot nightly and we were also given glucose, as well as a blood sugar Monitor. At this point we were getting things lined up to go home discharge papers were being put in place, as well as follow up appointments. We were advised before we left that they wanted a pulmonologist to take a look at her, in regards to her lungs and possibly asperations which we were unaware of. Now maryah was also admitted here with a feeding tube in place to her stomach as well as a fundoplacation in a previous visit to childrens mercy years ago ( this is a operation that twists the stomach completely around to prevent stomach contents from comming back up as she would asperate silently, the reason for the gtub in the first place.) Pulmonary decided to try a device called the caugh assist to make sure her lungs were staying clear ( this machine has a mask that covers your nose and mouth, and blows air at a set pressure into your mouth/throat, then reverses the same process and sucks air back out ). Now this device is usually used on kids or adults with trakiotomy, because they aren't able to caugh and that can lead to phenomena. However hers functioned by placing a mask forcefully over mouth and nose. Unfortunately this cough assist ripped her fundoplication undone causing her to start vomiting within an hour of giving it to her the first time. Surgery was called immidiatly after an upper GI study was done showing the fundoplacation was reversed / undone. Surgery decided against our wishes which were to redo the fundoplication, because they wanted to try a method that didnt require cutting her open. Removing her gtube and replacing it with a GJ tube was the final decision. This has 2 device/ports one inserts into the stomach and the other directly into the intestines. 24 hours after surgery maryah's fever was climbing and she was acting significantly tired almost lathargic again.this was blamed on every virus and pic line infection they could think of and MULTIPLE caths to check urine for a uti. At 48 hours her fever was reaching 105 and every test was comming back negative. She was unable to eat still, and continued to vomit again. During this night I remember crying in my husband's arms and just praying to god, "Please Don't Take My Baby", over and over again. At 72 hours we were packing her with ice packs due to we were out of med to give her, because she had got all she could take at that time, and her temp was no longer being effected at all by med. Comming into the next day we recieved a new dr who decided to check the placement of the new device they had just installed ( the gj). While checking her belly by sono it was so full of fluid they had no idea what it was or where it was from, so she was immidiatly rushed to a cat scan where they found where the fluid was coming from. When the radiologist inserted the J part of the GJ going into the intestine he actually ripped through her intestine and bowel sending her septic. At this point they now know she is in absolute septic shock, and after further questioning about being septic we find out that most adults don't even make it past 48 hours in septic shock. By this time it's getting later in the evening and they are having to call in surgeon's from home. We were rushed into emergency surgery, where surgeons and anesthesiology were walking in with just regular clothes on, which made us realize how serious this has gotten. They immidiatly got her into surgery, and upon opening her from her ribs to bellybutton they found her organs and intestine haf rotated. Her organs and intestines were in mangles. The surgery took so long due to this slow process of re arranging her organs and intestines in the right areas. When it was all said and done all went well except the fecis that was released frpm the bowel had attached itself to her bowel walls and stomach wall in some areas The strongest antibiotics qere given to her in very high doses after surgery. Also at this point she needed a blood transfusion. This is only in our first 30 to 40 days of being their. After she began comming back she seemed to have had a mini stroke during surgery but thankfully mini strokes tend to only last a couple days. Her wound from surgery had began to heal quickly untill about day 50 it had completely ripped itself back open as yhe body was pushing out the infection the first place it saw fit. This caused her incision to the tunnel 4 inches long and 2 inches deep. It was a sight thay made me feel like I was going to faint and had to sit down. She was put on nutrition their ugh a central line as feeding was not working for her. Her intestines were not picking back up as well as we expected. She also than needed a second blood transfusion ass she went anemic again. We noticed around day 70 that every time qe got to 5 ml of anything back into her intestines she would immidiatly jump to a heart rate of 170 and a temp of 94 to 95. We were right back to where we started. After further inttonvestigation they discovered her hypothalamus seems to be either missing lots of peace or not their at all and her autonomic nervous system is being affected by this. This was meaning her body was fighting for no reason. It felt at change and her brain felt the need to fight it as if it was an infection.once this eas discovered she was put on at medication that would control this. All was going well and even feeds were comming along untill about 2 weeks ago. I started noticing small tiny red dots on her. The dr noticed these as patekia. This is where blood can see through the akin due to your platelet level being low. So they ran her blood. The dr was so surprised by it she qasnt even sure what to say. Her blood came back low on everything. Low white blood cell count, low resolution blood cell count, low platelet count and no neutrophil count was extrodanaraly low. Normal level is 1500 lpw is 500 she was at 100. Neutrophils are in our blood and rhese are what fight every virus or bacteria that enters our body or is even naturally in our body. She said this is what they aee in cancer patients and that this is truly serious as a minor cols could be detrimental and honestly deadly.. we would watch these over the next few days but saw no improvement also running tests for lukemia and a number of other things requested by the hemotologist. so last Wed they decided to do a bone marrow test the test has not cane back with anything at this point but parts of this thirst can take 3 weeks. During this time I have had a diffrent dr every 7 days and just had my first repeat dr last week. Today is our 91st day here. We have 3 older girls at home who we have only been able to see twice since we have been a here. As both myself and husband are para educators to both disabled and behavioral kids we have not received a dime of pay since we had to leave. Our goal this far in is to move here. Wichita is at blend forever will be my home town but maryah's medical care needs tk be here and we despritly need our family back together. The question is how do u manage all of your bills depleting through savings in a matter of months and try to find a rental home here in a good school district to bring your family back together? We're finding some applications are 25 to 50 a person and that's alot of money to possibly loose when u have non. We have began to look for work but it's almost been impossible. The moment we both got jobs maryah once again fell off and had to undergo anistisia for tests to be performed. We as parents of course had to take off and with it being both our first weeks at the jobs it was clear it wasn't going to work out, nor did we want to waist any employers time. It's just been impossible for us to figure out how to rebuild our life's away from any and everything we had all while still maintaining a home for our kids back home. It's devistatingly hard as we have never been away from our kids longer than 3 days let alone months with no end in sight. It's been like walking through my living hell. Everyone's running crazy around you but no one can hear or see u. Any donation would be amazing to help us try to get a house here, pay bills, buy food, put gas in our car while we go to and from hospital as well as interviews. Anything would be extrodanaraly amazing for us as we enter into 100th day.
Now below here is what we originally started with but have since closed this book.! baby girl Maryah was born August 1st 2013. She was born unexpectedly with a rare chromosonal mutation never documented in history.. With this syndrome maryah does not have a growth hormone. She currently weighs in at 9lbs 5oz at almost 10 months old. She eats by feeding tube and is on oxygen 24 hours a day. She asperates anything by mouth and has extreme reflux disorder.she is also Def in both ears and have been consulting to get hearing aids to assist her in hearing. They are currently watching spinal fluid build up on her brain right now and are keeping a very close eye on that. 90% of our Dr's are in Kansas City Kansas so frequent trips are made and expenses are high. Considering I can't work like I used to because of her medical needs and this is our 5th daughter, times can Get rough.maryah was expected to be a completely healthy baby so the shock of this was and has been life altering. I'm hoping that this website might help us with even a bag of diapers or 10 dollars in gas for our trips
I update her FB page almost daily if I can.
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