Thursday, March 7, 2013
Emma McGovern is a one year old little girl with a significant complex medical history which includes chromosomal abnormalities-- chromosome 10p13 terminal deletion and a chromosome 20p13 duplication. Emma has been diagnosed with hypoparathyroidism, hypocalcemia, tracheomalcia, bronchomalcia, laryngomalcia, respiratory failure, nephrocalcinosis, gastroesophageal reflux, Grade III vesicoureteral reflux, immunodeficiency, hypogammaglobulinenemia, a history of bacterial and fungal urinary tract infections, bilateral cataracts, hearing loss and failure to thrive. She is on continuous oxygen and receives her nutrition through a gastrostomy tube.
Emma was born at St. John's Children's Hospital on February 14th 2012. On March 27th 2012, she developed cardiopulmonary failure while at a the Olive Garden in Springfield, Illinois with her mother and maternal grandmother. Cardiopulmonary resuscitation was initiated and she was transferred to St. John's Children's Hospital where she was admitted and remained until May 3, 2012. On May 1, 2012 she underwent placement of a gastrostomy tube. On August 13, 2012, a port was placed for a more permanent and efficient means of IV access. Emma has been hospitalized nine times in her first year of life.
Emma's caregivers need to be able to provide skilled nursing services such as physical assessment, evaluate her respiratory status, monitor vital signs, address her suctioning needs, and administer oxygen and nebulizer treatments when needed. Emma will need to have her nutritional status assessed, which includes both continuous and bolus gastrostomy feedings and administration of prescribed medications. When Emma's respiratory system is compromised due to illness, the frequency for suctioning and nebulizer treatments are increased.
Our family has been very blessed this year. I can't believe we are already almost 8 days into March... where is the time going and I am the only one who feels like time is flying? Although, due to this nasty weather I must say I am very ready for spring and especially summer! I can't wait for Miss Emma to experience the windows open and fresh air... and if her Immunologist allows it --- lots of outdoor time! :)
We added three new amazing therapists to Team Emma in January. Emma was previously receiving therapy at St. John's Pediatric Rehab at St. John's Children's Hospital in Springfield. Due to our financial situation, gas prices made it nearly impossible for us to afford necessary appointments with physicians. With that being said, it was impossible for us to make the weekly trips she needed to be seen at Pedi Rehab... so it was time to transition from our amazing therapists there to a home based agency that provides therapists in our home on a weekly basis. Macomb Home Health met our needs and was somewhat local. (Not much in local to us being out in the country in a rural community--) however, we are very satisfied.
Change is not something Emma handles well,.. therefore I do not handle making her change very well.. but in order to financially meet her needs and medically meet her needs.. we had to make this change. We definitely miss our Miss Ashley (previous occupational therapist at Pedi Rehab)... but she definitely keeps in touch with how Miss Emma is doing. Mary, our new occupational therapist is really great with Emma and has her doing new things every week. Emma receiving therapy on a weekly basis is making a huge difference in her development.
Emma also started physical therapy which was a first for Emma. You would not believe the strides she has made in just six weeks with her amazing physical therapist, Danelle. I am so blessed to have met all of these amazing ladies who love Emma as one of their own and they all feel so blessed to have the opportunity to join Emma on her journey. We also added a Speech Therapist who has been so open to finding Emma's way of communication since we are unsure about exactly what Emma is hearing and what approach we should take.. also with Speech Therapy they focus on oral stimulation and feeding... since Emma is still on a strict "nothing by mouth" order she isn't getting to taste things at this time.. However, Heidi still wants Emma to want to put things in her mouth and want to orally stimulate herself if possible.. Being the amazing therapist that she is Emma is chewing on things and making several different noises... and definitely expressing herself more vocally. Even though it is still just "babble" at this point... it is still a huge blessing to all of us to see her expressing herself.
Mid January we attempted another ABR (hearing test)... of course that was a huge fail because Emma needs to sleep and not move for approximately an hour and a half..... really?!?! I cant even do this... so with that being said unfortunately I am not expecting any accurate results for awhile.
We met with Dr. Johnson on the 18th of January and he informed us that St. John's now has the capability of doing a virtual broncoscopy and he wanted to get one scheduled for Miss Emma.
February was amazing of course,... Emma beat the odds and celebrated her first birthday!!!!!!!!
She also received over 78 cards !!
February consisted of a lot of celebrating and therapy. We have therapy on Mondays and Thursdays. The end of February and beginning of March have been fairly slow... although that is all about to change... Next week, we have therapy on Monday, I have phone conferences on Tuesday and then Wednesday, Thursday and Friday are all spent in Springfield for appointments. Checking in with Dr. Siefert (Emma's nephrologist) on ultrasound results from a couple weeks ago that we had to check on how Emma's nephrocalcinosis is and if there are any changes in her kidneys. Next thursday, we are meeting with Dr. Krah, Emma's ophthamologist to check in on Emma's vision. Then Friday, it is time for the virtual broncoscopy, another attempt at the ABR (hearing test) and last but most importantly to us her IvIg infusion. Then after all that madness, we rest up on the weekend and then turn around and go back on Monday the 18th to talk with Dr. Johnson about the results of the virtual broncoscopy as well as meeting with the nutrition to decide if any changes need to be made to Emma's diet.
Ready for April to be here, hoping in return of all this madness of back to back appointments we can have a few weeks break from multiple appointment trips to Springfield.
Requesting you to join us in prayer... we have recently applied to a different program that what we were originally placed in with our nursing because Emma now having several dianosis' qualifies for the Waiver Program for the Medically- Fragile.... this program will hopefully approve us for more nursing than just the sleeping hours we are getting now. This would mean Kory and I would have time to be a husband and wife. Maddie will have time that she can get our full attention while Emma is being taken care of by a trained professional and I will be able to do all the little things that many people take for granted.... I need to be able to run errands, pharmacy, grocery store, post office, mow the yard, etc. all those things are things that I cannot do right now and Kory always has to leave work early because he has to pick Maddie up from school because I can't leave the house and then if I need anything done he has to make sure that he can get to the places by the close of business. . . this is very stressful for both of us. Maddie definitely is in desperate need for us to give her alone time with both of us. Please be in prayer. The application has been submitted and we know we wont get what they asked for but we know we will get exactly what God knows we need and no more than that. He knows what is in our best interest and God will provide.
May God bless you all as he has continued to bless our amazing family!
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