Fighting through the Infections...

In the last two months (61 days) we have spent 48 days in the St. John's Pediatric Intensive Care Unit. With each admission we face a new infection. First it was a UTI which turned into a kidney infection. Then she has a yeast infection. Then she had an upper respiratory infection where her right upper lobe of her lung collapsed due to infection. That was followed by yet another UTI. (Emma has grade 3 kidney reflux- we are doing what we can to prevent UTIs.) Emma is know currently in the PICU because the Infuse-a-Port that was placed on the 13th of September became infected. We have fought of the infection with double the antibiotics and by keeping her on them for a little longer than usual. However, there is no telling if once the antibiotics are out of her system if she is just going to get another infection or not.. So, we wait. Only time will tell if we will be keeping the port in. As of now the port is staying in but if she gets another infection they will have to remove the port and then get the infection completely taken care of before they even think about putting in another port or trying another option like a broviac. (Another form of more permanent access!) Either way foreign objects (such as plastic) in the body is always a risk for infection, it's not really going to matter what method they use if her immune system is not strong enough.

Last night, we did infuse her with IVIG (Immuniglobulin). This human product is given over four hours and every 15 minutes they monitor blood pressure. We will be coming in every 4 weeks and getting her IVIG infusions. It will take four hours every time. We should be able to come to the Day Hospital and get them done as long as things continue to go well. We shouldn't have to stay overnight each time. It will take a few times to actually notice a difference. Also, as far as immunology goes... we have a lab test that is pending. It a Tcell/Bcell function tests-its will tell us although she has an appropriate amount of cells for her age and given her condition are they working appropriately. They will test her sample against common bacteria and viruses. Depending on how they respond could give us some more answers as to why she gets so many infections. They did think because of the type of organism that was present in her blood culture this time, that she may have a white blood cell disease... The results for that test are in......... and she does NOT have a white blood cell disease.

I will be sure to share in future post once we get the results of the Tcell/Bcell function tests. Thanks for continuing to follow Emma's Story. I hope that at least once a day one individual realizes that their life is not as bad as they like to think it is.. Emma's fight is encouraging people all over the world to change in different ways to become a better person. That alone is something to be proud of.

Thank you all ... Happy Reading.. and God Bless you and your families! :)
                       <3 The McGovern's

Understanding 10p deletions ...

Some of you may not at all be interested in the information I have attached but I know some where asking if I had addition literature on some things... so this is what I have. I also will be posting some information on how her 20p13 duplication is said to effect her in the future. Genetics to most people is not all that interesting. However, I wanted to put it out there for those who were requesting it.

I realize that I haven't taken a lot of time to actually explain the basics of Emma's chromosome abnormalities... I know I have mentioned a few things and briefed you all on it but I wanted to give you an overall... "research" point of view... This is based off 10p deletions, not just 10p13 deletions. Its a basic overview of information on deletions of the 10th chromosome. Most of the information acquired I link to Unique because that has been a huge help in me understanding things. Therefore, that is the information I use to help explain things for you.


Emma's Chromosome Abnormalities:
      - 10p13 terminal deletion
         -20p13 duplication


10p deletions

A chromosome 10p deletion means that part of one of the body’s chromosomes has been lost or deleted. If the missing chromosome material contains important instructions for the body, learning difficulties, developmental delay and health problems may occur. How serious these problems are depends on how much of the chromosome has been lost and where the deletion is.

　

Genes and chromosomes

Our bodies are made up of billions of cells. Most of the cells contain a complete set of
tens of thousands of genes. Genes act like a set of instructions, controlling our growth and development and how our bodies work. Genes are carried on microscopically small, thread-like structures called chromosomes. There are usually 46 chromosomes, 23 inherited from our mother and 23 inherited from our father, so we have two sets of 23 chromosomes in ‘pairs’. Apart from two sex chromosomes (two Xs for a girl and an X and a Y for a boy) the chromosomes are numbered 1 to 22, generally from largest to smallest. Each chromosome has a short arm (at the top in the picture below) called p from petite, the French word for small, and a long arm called q (at the bottom). In a 10p deletion, material has been lost from the short arm of one of the two chromosome 10s. You cannot see chromosomes with the naked eye, but if you stain them and make their image about 1,000 times larger with a computer or under a microscope, you can see that each one has a pattern of light and dark bands. A small piece or a large piece of the chromosome can be missing. Sometimes it can be identified under a microscope or on a computer. The missing piece may be so tiny that it can only be identified using new technology with tests such as FISH or array-CGH. It is then called a microdeletion. One type of deletion is called terminal. The chromosome has broken in one place and the part of the chromosome from the breakpoint to the end of the arm is missing. Another type of deletion is called interstitial. There are two breakpoints on the same arm that have rejoined and the part of the chromosome between them is missing.

                                          How do we know about the effects of a 10p deletion?

Your genetic specialist can tell you more about the chromosome material that has been lost. You will almost certainly be given a karyotype, a short hand code for your child’s chromosomes that shows the points where the chromosome has broken and rejoined.

People with a 10p deletion may have the same break in their chromosomes or a similar one but they do not all have the same problems or features. There will be differences between your child and others with apparently similar chromosome changes and these differences can be quite marked. It is very important to see your child as an individual and not to make direct comparisons with others

After all, each of us is unique. But some features and health problems are similar in people with a 10p deletion. It is hard to be certain then about the effects but as more people are diagnosed, the picture will hopefully become clearer. The oldest child with the disorder known to Unique is in her late teens
and the group has one affected adult member, but it is likely that there are many older people with a 10p deletion.

                                                     Deletions from 10p12, 10p13 or 10p14

Among babies and children with a breakpoint at 10p12, 10p13 or 10p14, features such as some delay in development are consistent and a slow pattern of growth and an unusual look to the face are common. However, individuals vary widely, both in the ways they are affected and the severity of the effects. As a broad generalisation, where the breakpoint is in band 10p14, and especially if the chromosome has broken near to band 10p15, the effects are milder.

Within band 10p14 there is a gene known as GATA3 and when this gene has been interupted or is missing, a child is likely to show one or more of the three hallmark features of HDR syndrome. H stands for hypoparathyroidism. Children often have low calcium levels. D stands for deafness, usually a partial hearing loss that is present from birth and affects both ears. R is for renal. The kidneys may be small, abnormal or one may be missing or there may be urinary tract abnormalities.

A little closer to the centromere (the point where the short arm meets the long arm) there is a region of 10p known to be important for the normal development of the heart and the cells known as T-cells that help to fight infections. This region is known as the DiGeorge critical region 2 (shortened to DGCR2) because babies and children who have lost important genes from this region have similar clinical problems to babies with a condition known as DiGeorge syndrome. However, DiGeorge syndrome proper is caused by the loss of a tiny amount of chromosome material from the long arm of chromosome 22. The geneticist or paediatrician who tells you about your child’s chromosome disorder should be able to tell you whether your child has lost GATA3 or the DGCR2.
                                                                      Appearance
To parents, a baby with a 10p deletion may look little different to other babies. Nonetheless, if you meet another affected family, you may notice some similarities between your child and theirs. Any similarities are likely to be less easy to interpret if your child has a 10p deletion as part of a more complex chromosome rearrangement..
This picture was taken back in June....but its a happy picture!
Thanks again, for taking the time to read through Emma's blog, pray for Emma, and most importantly thank you for letting Emma's Story inspire you! :) Have a blessed day!

Catch 22?...

Over the last few months, Emma's constant need for IV access and need for central lines has forced us to make the decision to put in an "Infus-a-port". Usually seen in oncology patients but is also used for situations like Emma when they need constant IV medications or are impossible to access at a moments notice.

We all know nothing comes easy with Emma. There is always a problem to follow. Usually an infection. In the last month and a half, Emma has had two UTI's (which we are blaming on kidney reflux), two yeast infection (which we are blaming on all the antibiotics she has been on in the last two months), an upper respiratory infection, as well as the latest, infection in her blood.

We all having been praying that this infection in her blood has nothing to do with the port that she had placed September 13th. We knew Emma was at high risk for infections when we placed the port. Her compromised immune system puts her at risk for all kinds of infections and when it partners with her kidneys ... the infections come on quick and strong.

Her specialists are now planning a meeting to discuss where we go from here. . . We are going to try and attempt to save the port (WHICH IS POSSIBLE! SO PLEASE PRAY!!). They also want to talk about what to do for Emma's immune system. She needs supplemented in some way but they are going to need several more tests ran to determine which way to go about helping her immune system. Also the organism (Serratia Marcescens) found in Emma's blood cultures are a common infection in children that have immune deficiency problems.

I will keep you posted.... at this time we are on a mission to save the port! Prayers are needed!!!!!

This is what Emma's port looks like. It is a Bard PowerPort. This is a life saver for Miss Emma! Please Pray that we can save it!!!

Recovering from her port surgery....

Days Go By...

We have had five admissions in the last month and a half... Which does not leave much time for the blog although each admission has its own story and I will get to it soon.. For now here are some pictures to enjoy and a brief summary of the last few weeks.

As you may know, Emma did have her cataracts removed July 31st and August 2nd.. which put us in the hospital for much longer than expected. Throughout August we battled recovering from surgery and near death experience in St Louis at Children's. After recovering we were hit with a UTI and once she recovered from that she ended up with a yeast infection. After overcoming all of this, we go home for what we thought would be a record breaking stay at home because she was doing fantastic. Just to find that we were only home a few days before Emma's right upper lobe in her lung collapsed. Kory had to resuscitate Emma with rescue breaths because her sats had dropped to high 60% s - low 70% s range. Falling below 90% is abnormal. This is indeed how we spent our labor day! It was 9p.m. on Sept 3rd (Kory's birthday was September 2nd) and we were making our first 9-1-1 call... The paramedics arrived in minutes and our "Emma Emergency Plan"  worked perfect. Saint Flight arrived to get her to Springfield and the Rushville EMS Team did FANTASTIC. We all wondered in the event of our "Emma Emergency" would we all be able to work as a team and help one another out. We did amazing and I was very proud of Kory, myself, and our entire community for working together in the time of need.

Emma is currently in the hospital (since September 20th) with an infection in her blood and a fungal infection. Please keep her in your prayers. Her Infectious Disease doctor is here to give me an update ....

Here are some pictures from the last few weeks..... Enjoy!

Right after returning from the PACU having her port put in. She is such a little rock star! We are soooo proud of you Emma!!!! :)

Poor Emma :( She feels horrible....

 September 3rd stay... One sick baby..

 Pulling off her stickers so that the monitor goes crazy and the monitor at the nurses desk beeps like crazy! She is soooo ornery!

Being her Mouthy self.. that is when we know she is feeling better...

 Sicky baby... :(

 Always Say your Prayers!!

Sooo exhausted!

 Daddy and Emma taking a nap in the PICU..

 September 3rd... When her right upper lobe was collapsed. :(

<--Blood transfusion..#3

"Really Aunt Amy? Listen to Aunt Danica those socks were whack!"

 

 

*I will be posting more information when I have more time but these last few weeks have been so crazy busy! This week I'm planning on several posts to catch up from all these hospital stays. Until then Happy Readings :) Hope everyone enjoys there weekend!!*

Healthy Kid Challenge

A member of TEAM EMMA has started a healthy kid challenge to allow people to show their support. Most couldn't imagine their child going through the daily struggles Emma and our family face. Emma is a fighter and God gave her to the most amazing parents she could ask for! :)

 

How do I help you ask?

 

The Healthy Kid Challenge was designed for people to send $1.00 in to the McGovern Family for each healthy kid in your immediate family. You may donate more or less, it's whatever you can afford. This was an idea thought up by a family friend.

 

Make checks payable to:  EMMA MCGOVERN TRUST FUND

 

Mail all HEALTHY KID CHALLENGE donations to:

 

CINDY EIFERT

229 N. Liberty

Rushville Il 62681

 

This amazing idea has raised over $500.00 for Emma and her family.

 

Please know that our family couldn't provide Emma with the amazing quality of life she has without these benefits! With Emma's constant medical care her parents are unable to work 'normal' jobs. Mickayla (mom) is unable to work at all and Kory (dad) can only work certain days and usually those are the rainy days when he is unable to work. They are experiencing HUGE financial difficulty but are still staying positive through it all for their two beautiful little girls! Let's help them out !

 

EVERY DOLLAR COUNTS!!!!!!!!!!!!

BENEFIT FOR EMMA: Sept. 14th &15th

WHAT BETTER WAY TO SPEND YOUR WEEKEND?

 

If you have any free time this weekend... Come out and show Emma the support she needs!

 

There are so many things going on this weekend...

 

 

FRIDAY, SEPT. 14th .......  FUN STARTS AT 6 p.m.

• GLOW BAGS TOURNAMENT (Teams of Two) Sign up by 6pm ...They will be serving Chilli Cheese Dogs

SATURDAY, Sept. 15th..........

 

9am- Sausage Gravy & Buscuits $5.00

       - Ride Sign- In $10.00 per person

 

RIDE FOR EMMA:

       10:30am - 4:00pm 

            -Anderson Lake

            -Havana

            -Bath

            -Chandlerville

            -Virginia

            - Chaser's Tap

 

11:00 am  PORK CHOP SANDWICHS & HAMBURGER PLATES $5.00 (to go available)

 

11:30am- 4:00pm REDNECK PHOTO SCAVENGER HUNT

                         *This is for people who do not want to go on the Ride for Emma and want to stay

                               close to home!

                       HOW IT WORKS:

                1. Get a team of 2-10 people ($10.00 per person)

                2. We will give you a list of items to take pictures of and tasks to complete with your cell

                      phone.

                3. You will text pictures to number we provide at the start of the scavenger hunt.

                4. First team back with all or the most tasks completed wins.

                                       1st place: $100

                                       2nd place: $50

                           *BEST DRESSED 'REDNECK' WINS A PRIZE!*

 

4:30 pm - AUCTION BEGINS!!!!!!!!!!!!!!!

 

             *Two Solid Oak Nightstands, 8 hours (value of $1180 of bulldozing and $400 transportation cost) Bulldozing, 5 yards of concrete ($500+ value), Double-Door Smoker, Yard Rock, Quilt, Bags Boards (TEAM EMMA), Handmade Duck Call (TEAM EMMA), 5 pencil arts, Ducks Unlimited items, tons of Terry Redlin items, World Series Cardinal items, etched glass picture, ton of gift certificates to all different kinds of places, hair care products, Harley Davidson Wooden 'Rocking Horse' Ruger American 30-06 ... 60 lots of items!!  THIS IS A HUGE AUCTION!!!!

 

6:30 pm: OPEN MIC

 

8pm-12am: WEDGEWOOD BROTHERS (BAND)

 

RAFFLES INCLUDE:     Harley T-Shirt Quilt, Deer Antler Knife, a few more items.

 

If you are unable to attend but would like to donate :

Mail a check made out to (Emma McGovern Trust Fund) :

Chaser's Tap

229  N. Liberty

Rushville IL 62681