Tuesday, August 21, 2012

Sensory Strides.......

Today has been an emotional day for Mommy. .. to say the least .. But this afternoon things took a turn for the best,.... FOR ONCE!

We were scheduled to get her hearing aids today in St Louis of course being in the PICU that didn't happen. I was bummed about that.. I was bummed that we were only home for 46 hours before we ended up back in the PICU. Just one of those days.....

But in walks Diana (Emma's speech therapist) who initially was just stopping in for her afternoon visit. Diana looks at me and say, "She's six months, right?"..... "Yes,.." I replied..... To my surprise she looks at me and says, "Let's try baby food, if they will let us!" and thrilled to death I shout, "Really?!?!??!?!?" Diana heads out to the nurses station to see if Dr Basnet will put in an order.

This really emotionally crap-tastic day just may bring something good our way!!!!!!!!!!!!
"Carrots! Carrots! I never dreamed I would be this excited about... CARROTS!!"

Dr Basnet agrees! :) Diana is off to get baby food. I know better by this point ... DON'T GET EXCITED UNTIL YOU GET GOOD NEWS... anything can happen?

In walks Diana with some carrots :) Holding Emma upright in my arms we give it a try...

"HOLY COW! What is this stuff..... ITS AMAZING!" <--- If Emma could talk.. that would be her verbal reaction. She LOOOOOOOOOOOOOOOOOOOOOOOOOOVED IT!!!! Although everything is a process with Emma. We have to start out slow and work our way up. At this point... She is having three spoonfuls three times a day :)

The most amazing part is that is another sensory input we didn't think she would be able to have. Her glasses should be here soon with the appropriate lenses in them so they work for her. Her hearing aids are in st Louis ready for her we just have to have time to get down there for an appointment to get them on and set on the appropriate setting for her and see if that is going to help her! :)

With Emma our biggest goal is, "Quality of Life, not Quantity!!" We want the time she does have to be the most amazing time it can be for her. In a few weeks, we have made huge sensory strides for her !

Sunday, August 19, 2012

EMMA'S SONG............ Mark Schultz - What It Means To Be Loved.

:( 45 hours home... and we are back in the PICU. :(

We made it home (Thursday), our family was whole again. Maddie was so excited to have all of us under the same roof. Emma was swinging in her swing and looked so comfortable. I was preparing the med schedule trying to find some However her eye drops cannot be given at the same time and they are every four hours. Then her feeding is every three hours.. So my night was looking pretty busy. Kory's fingers are rather manly and that makes it hard to do the eye drops. So Mommy and Emma were going to conquer these next four weeks of eye drops.

As expected, Emma was extremely fussy and having a hard time adjusting to being home. She wasn't sleeping and I assumed it was from the change of hospital to home. Which happens every time we have the extended stay. She then threw up her midnight feed, I figured it was from being so worked up. She felt better and fell asleep. Her 3 a.m. rolled around and she was sound asleep with an elevated heart rate hanging in the high 160s.. Went ahead and ran her feed and she threw up as soon as feed was over. I was beyond suspicious at this point and looking for more signs of infection.. so I checked her temp and it was 101.3. Immediately administered Tylenol and called the PICU to see what my next step needed to be.
Our plan was then to keep her home as long as we could. Continue Tylenol as needed for fever, decrease feeds and see if she will tolerate. She tolerated 80mls instead of the 110mls. So that is what we did. By 1pm that following afternoon I would be calling back to the PICU to tell them Emma has vomited three of her last six feeds. I feel that she is needing or will be needing IV fluids soon. Mander was the attending on call and recommended we bring her in to the E.R. and he would come take a look at her.  We were headed back to the PICU 45 hours after discharge :(

Feeling super bummed because I didn't want to be away from Maddie anymore. We were headed back to St John's Children's Hospital to see if Emma had contracted yet another infection. She creid the entire way over and once we were in the E.R. she calmed down. It was like "Ahhh, Im here,.. bring on the good stuff (medicine).." Until those familiar hands (Mander and Amy) arrived to do the IV and examine her. She threw the biggest fit of her life. She was so uncomfortable she just wanted to be left alone. It was so sad. She is so strong but I cant even imagine that pain. On top of that, you have the fact that in all reality until about two weeks ago she wasnt having any sensory input other than touch. I couldnt imagine what a nervous wreck that would make me. Not being able to hear or see when someone is coming at you. Then all of the sudden, PAIN! :( :( :( Poor baby.

Again, although I hate being in the hospital.... I know this is where Emma needs to be and this is where she gets the absolute BEST CARE EVER! . . . This stay will hopefully be much shorter. Dr Rodriguez and Dr Mander are very on top of everything. We are waiting until tomorrow to see what the cultures show as far as how long she will need to stay in house and then how long she will need to be on oral antibiotics at home. Our goal is home as soon as possible of course.

This week was supposed to be a huge week for Miss Emma. She was scheduled to get her hearing aids on Tuesday.. however.. Emma will not be making those appointments this week. We will not be taking her on a strenuous trip to St Louis until this infection is gone and she is up to par. Although I really wish she could have had her hearing aids, her overall well-being is defiantely more important. She was also supposed to have her follow up for her cataract surgery this week and that will not be happening either. Mommy has several phone calls to make tomorrow as well as making some changes for TEAM EMMA.

---- We will be adding a few new specialists to TEAM EMMA this week... keep in touch for updates early this week. ---


Tuesday, August 14, 2012

Meet the McGovern's ...

Kory, 26 year old father
Mickayla, 23 year old mother
Maddison, 4 year old Big Sister
Emma, 6 month old MIRACLE......

Nothing fancy, .. :) We are just us. Kory is the anchor to our family. He is 26 years young and is a role model for every father that knows him. He is an amazing man who loves his girls with every beat of his heart. He does a fantastic job stepping up to every thing that needs done while I'm in the hospital it Emma and he trades places when he is not working so that I can go home and give Maddie 'Mommy Time.'

Mickayla (myself),. . The mother of these two beautiful red heads and the we to this amazing husband and father. Say what you will, I am no angel,.. I am human! I'm just like you sitting on the other side of this computer screen. I may seem strong and wise, but we all have our days. I have my days where I would proudly strut myself around in a "SuperMom" cape. However, as you can only imagine, I have days when I ask God.... "WHAT WERE YOU THINKING... REALLY?!" Everything Kory and I do, we do it for our girls. We are an amazing team and Maddie helps out so much. I truly do not think we could get through the day without Maddie helping. Being a big sister is a big job.. being a Big Sister to a Little Sister with Special Needs is a HUGE job. Maddie wears it with pride. She tells every one that God gave Emma to her because she needed a very special little girl to be her big sister. And she is sooo right..

 Last but definitely not least, we have Emma.. She is the reason we all get out of bed in the morning. She is filled with sooooooooooooooooooooo much strength and encouragement. It amazes me that one little girl can inspire 12,000+ people in 6 months!!!!!!!!!!!!!!!!!!! Emma can and she has. Her story is booming, Children's Miracle Network has invited her to a radio-a-thon hosted at St Johns Hospital in November and St John's Magazine is doing an article on her story and how she truly is a St John's Miracle!
 Feel free to contact us with any questions. Our TEAM EMMA email is: elm021412@gmail.com we would love to hear how our daughter has inspired you and your family. I'm just an email away. :) Have a blessed day and be sure to praise God for your healthy children and all the amazing blessings he has provided you with, without question.


ATV RIDE FOR EMMA... August 25th

Sunday, August 12, 2012

St. John's Miracle...

For those that don't know, Emma is a St John's miracle from the beginning of her journey to the present day. Most of her specialists are here in Springfield. She was born at St John's Children's Hospital on February 14th, 2012. She was taken to St John's the day of her cardiac arrest, March 27th 2012... We were at the Olive Garden where an off duty NICU nurse (who works at St Johns) was eating her lunch! ... They have been her guardian angels in and out of the hospital! :) .... ( Praise God!)

There are so many people who overlook our phenomenal children's hospital we have right here in Springfield, Illinois. I, speaking from personal experience, have watched this P.I.C.U. Staff perform to the best of their ability day in and day out. There is not one staff member sitting around on the Pediatric Unit. The staff works as a TEAM. That is what makes them such a successful team. Spending more time than most families, I have plenty of time to get to know the staff. Its hard for me to refer to them as 'staff'. To my family and I, these are not just nurses and doctors. . This is our PICU family. Any one of them who have cared for Emma will tell you the same. All through medical school (any field of expertise) they tell you... 100% professional- There's no room to let your emotions get the best of you. You cannot let you personal side interfere with your professional side. This is true, however, we are only human. You can only watch a Mother and Father cry in fear so many times before you bow your head and thank God you have healthy children. You can only tell the parents "things will be okay" so many times without wondering... "Is it really going to be okay?" ... Emma is not just a patient to the St John's PICU. She is family. The nurses know all her tricks and the doctors all know to whisper, "I'm going home.." and never say "See you in the morning Emma" because she will be sure that they have to get out of bed in the middle of the night.

We have such an amazing Children's Hospital right here in Springfield. If it weren't for our amazing PICU family, Emma would be a guardian angel looking down from heaven. Not only is it the best medical care possible for our daughter. When I need to go on a walk, need someone to talk to, or even a shoulder to cry on- they are there. I know it seems unreal but the comfort I feel here is indescribable. God put Emma in the best hands possible. I love our PICU family so much!

Thank you all for everything you do for our family and for Emma. Emma will be in the upcoming St John's magazine and I will be sure to share the article with all of you!

Please continue to pray for this amazing medical staff and all the daily struggles they face. It takes extremely skilled nurses to work up here and I praise them for the strength, I dont know how they do it but Im thankful to have them in my life.

....<3 Bloggin' from the PICU.. :) ....

Sunday, August 5, 2012

"there's no place like home.. there's no place like home.."

Well we have all stayed in an uncomfortable bed at a motel that we didn't exactly see our selves staying at. That first night you are back home you get that "Ahhhh,.. my bed!!" feeling, right?
That hasn't even compared to the experience Kory, myself, Maddie, Mamma Jan, and Emma have went on this week. Not to mention all the family and friends who were clenching onto their cell phones and laptops waiting for some kind of an update from us down in St Louis.

(Everyone has their right to express there opinions about their experiences.)
I'm sure you have heard of what a FANTASTIC hospital St Louis Children's Hospital is,... WELL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! From a hospitality view on the resources they provide and the family setting you see all through the hospital is great! Unfortunately, who cares if you are in a run down shack...as long as its the best possible care for your child! It would take far more than a miracle for me to recommend anyone take your child there. Emma would be dead if she were still there! There is absolutely NO DOUBT ABOUT THAT! Their P.I.C.U. is HORRIBLE!

When we first arrived we stated that Emma is not your typical child and that we needed to take that and her previous medical history into consideration. After we said that, the anesthesiologist said "we see this all the time and we deal with situations much worse than her everyday!" (< said in a very arrogant tone) ...................... They went on took her back to surgery... The same anesthesiologist came out with his head tucked and said, "So, everything went fine. It did take five attempts to intabate. I will say she is the hardest intubation I have ever done in my life and I do thousands of intubations a week." ....... We then said, "Well, we warned you."

Our next hurdle, .. We told them that she always needs bi pap (piggy nose) to help her after being extabated. Another physician told us, " We do this all the time, we know what we are doing, just relax!" That was when we were fed up with there arrogance and it was Tuesday afternoon!!!!!!!!!!!!!!!!!!!!! We then suggested they take us to the PICU where she will be closely monitored and we will have help quickly! Instead they completely ignored our wishes and sent us to a surgery recovery floor where she was with kids that just had their tonsils removed or screws/pins put in, etc. Every nurse that came in there asked why she wasn't in the PICU.... (HELLLLLLLLLLLLOOOO!!!!!)

Guess what~! Not two hours on the surgery recovery unit and she was rushed to the PICU because she was having trouble breathing. They increased her oxygen to 2.0 liters and she made it through the night fine with the increased dose of oxygen. The next day (Wednesday) she was doing much better. Still on the 2.0 liters though. She is usually only on 1.0 liter of oxygen at home.

Thursday had came and we had no idea how she was going to do going in for another surgery so close. We continually pushed the idea of assisting her as much as possible when she came out. We didn't want her left intubated because we knew she would become very dependent on the assistance. The physicians COMPLETELY IGNORED US ! They told us that they are the specialists that deal with children much more complex then her every day! Asked us if we had any medical background? We said, "yes, we are Emma's specialists!" They took her back for surgery ignoring everything we said and then they called us and told us that they would be taking her up to the PICU and that we could meet her up there! Of course, we got up there and found out that they had left her intubated because they discovered that they probably should have not done the surgeries so close together like that because her airway was very stressed and swollen from so many intubation attempts in two and half days. (Once again, we warned them that this would happen and they ignored us because they are the specialists!)

We told them to monitor her calcium levels because they would drop very quickly! They again didn't listen to us and her calcium dropped from 8.7 to 6.5 in about 35 hours! 6.5 is critical!! Again they are the specialists and they know exactly what they are doing.. they are right we are wrong. (So they tried to convince themselves.)

After all of this you can see why we demanded to be transported.. they denied us transport. and then proceeded to do things that would make us not be able to transport.. for example, instead of going to the BiPap like we told them she does well with in the past they went and put her on HeliOx because they cannot transport patients on HeliOx and within thirty minutes of that ... she was having to be reintubated!!!! 

Our daughter is on a ventilator because of the physicians at St Louis Children's Hospital! They nearly killed our daughter!!!!!!!!!!!!!!!!!!!!!! St Johns PICU has her on the road to recovery but its horrible that they are having to clean up a mess that someone else made. And they know we are relying on them to fix another persons mistake. This is horrible for Emma. She is such a fighter and we thank God that he has given her and us the strength and put the right nurses and doctors (FROM STJ PICU) in our lives so that we had the connections we needed to get her to a safe place.

The main thing is that we are back home at our PICU and she will never be an inpatient at Children's Hospital in St Louis ever AGAIN! And we are still looking into what can be done so that another family doesn't have to go through what we went to. They lied to us about contacting our specialist here and they lied to St Johns PICU when they gave transfer report they said they had been doing everything that Dr Green wanted done with her calcium levels and they hadn't talked to her since Tuesday and we were not transported until Saturday morning! When we got here Dr Green said they called her once Tuesday and that was the only time she was contacted until the St Johns PICU paged her!

Thanks for all the prayers and support! You are all amazing people! Thank you for keeping our family in your prayers~ Emma is a miracle baby and she wouldnt be here without your prayers! Our God is an awesome God and we need to praise him for the miracles he is performing through Emma.

We love you sweet baby ! We should be holding you in our arms soon! I cant wait to see you awake and hopefully you will be beat boxing before we know it! Auntie Penny will be waiting to see those prety eyes tomorrow along with Mommy, Daddy, and your entire TEAM. LOVE YOU SOOOOOO MUCH EMMA LOUISE! :)

PICU: Pediatric Intensive Care Unit
STJ: St John's
STL: St Louis

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