Ellie Admitted 10/25/12

...been a while since my last update... 

Our battle of helping Ellie gain weight has continued to linger on.

John Hopkins finally got the new AMT brand G-Jet (JG feeding tube) that Ellie has been needing. We are HOPING, this will help her finally gain weight and grow better. Earlier this month she had gained 2 pounds. However that was WHILE she was on prednisone. That gain was also short lived, and she has lost all that and some again (sigh)...

We are still no closer to getting her little body to accepting more foods. She can still only tolerate apples, pears, and quinoa, but they have to be blended. If she eats apples that are not blended, those have to be spaced out so they are no more than every three or four days apart. If we try for closer together her bowels start to shut down on her. She does the same with the quinoa if it is not blended. So to get her body to accept food we blend it up into a nice apple, pear, or apple/pear/quinoa sauce for her.

Well this takes up to this week when I have been on the phone and have emailed with the staff from John Hopkins enough I have lost track. Between playing phone tag to get appointments scheduled to follow up with her pulmonologist, schedule an appointment with the new genetic doctor that is being added to her team, working with her ENT specialist that deals with laryngeal clefts and other laryngeal issues, her GI team, and several other doctors to get her scheduled in interventional radiology for her GJ placement. I literally have lost track.

Yesterday I was going about my business of getting ready to leave the house to head over to the school and help with our PTA sponsored (I am one of the Vice Presidents) Book Fair... and got a call that they wanted to see her in the clinic to start some of the testing yesterday not today. Knowing the admission was suddenly getting bumped up I rapidly started packing and doing laundry so I had the clothing I needed.

This was happening at the same the military decided our street needed to finally be paved properly. Thank goodness John Hopkins was not expecting Ellie in the clinic ASAP as I was still trapped in my drive by the street paving crew. This lasted just long enough for me to gather together a hygiene, get her stuff gathered, my stuff washing, and talk with various medical team members from John Hopkins 4 more times concerning her admission, procedures, tests, and everything. Next was to call the school and let them know that Ellie needed to be pulled out of school as she had a sudden appointment with her team, then admission directly from the clinic.

So now we sit here in John Hopkins Children's Center as she not only lost all the weight she had gained while on prednisone when she had bronchitis a few weeks ago. She is currently getting the pH-probe done, currently NPO again as we wait for her GJ placement this afternoon.

Also with this admission while she fought, they were able to place the pH-probe without to much trouble. She had her first EVER IV placed while she was awake. Again she cried, but did not fight to hard and they placed it on the first try. She has done amazing.

Orioles -vs- Oreo’s

What happens when the Baltimore Orioles, elementary students, and family of children that do not watch a lot of sports mix? Well the kids come home all excited about wearing orange for the Orioles photo day. Then when asked about why they need to wear orange (when mom who is on the PTA board knows it is not school picture day is confused about the picture) the following conversation happens.

So why are you needing to wear orange? “Because it is Orioles day at school tomorrow.” Jade asks the boys if they even know the Orioles even are, can you even name any of the teammates.

Do you even know what sport the Orioles play for? Between the boys they start listing all the different sports… “um maybe football, no baseball, no lacrosse, wait it’s soccer (one of the boys says), or is it hockey?” As they argued back and forth.

Suddenly Ellie all excited shouted, “I know who the Orioles are! They are cookies!  You know the cookies Oreo’s!”

At this point, I was already laughing and laughed even harder. I simply said, “Clearly none of you know who the Baltimore Orioles are. None of you have to wear orange to school tomorrow. If you do you may, but you will NOT wear a basketball shirt Zach.”

Needless to say none of the kids remembered to wear orange to school the next morning.

Let Us Never Forget

TRICARE Prime Fees Changing

For most retirees enrolled in TRICARE Prime, the annual enrollment fee is rising.

BY BRIAN P. SMITH

It’s that time of year again. TRICARE Prime billing statements have gone out in the West Region. This year, enrollees will be seeing some new numbers in their statements. The individual and family annual enrollment fee rates are increasing.

 

 

Are my fees changing?

Yes, the fees are changing for most retiree TRICARE Prime enrollees. Fee-paying enrollees* were paying either (depending on the date of enrollment):

• $230 or $260 for individual coverage or
• $460 or $520 for a family coverage.

These enrollees will see their 2013 fiscal year enrollment rate change to $269.28 for individual or $538.56 for family beginning Oct. 1, 2012.

Going forward, a majority of the Prime enrollees could see fee increases at the beginning of each fiscal year. Two categories of retirees will have their rates “frozen.” Survivors of active duty deceased sponsors (following the 3-year Transitional Survivor period) and medically-retired service members will pay the same annual fee rate that was in effect the year they enrolled as fee-payers and were categorized as survivors or medically-retired. The freeze remains if Prime enrollment is not interrupted. Beneficiary status and category are recorded in the DEERS (Defense Enrollment Eligibility Reporting System) record.

The fees could change each fiscal year. TRICARE is reminding enrollees that you may have another enrollment fee increase later if new fees are included when Congress passes the final FY 2013 budget. If you don’t choose an automatic monthly payment option, it’s suggested you make quarterly payments. TRICARE.mil/Costs has more information.

*Do I pay fees? How much do I owe this year?

If you paid TRICARE Prime enrollment fees last year, and you’re still enrolled, you still owe fees. If you are recently enrolled in Prime as a retiree, you owe fees. You can always check your fees owed by logging into your secure account at TriWest.com.

What changes will I have to make?

As long as you make your payments by the due date on the statement, your TRICARE Prime enrollment continues. If you have signed up for automatic electronic payments through TriWest, you don’t have to change anything. Your payments will be automatically adjusted to the appropriate new amounts:

• monthly allotment from retired pay
• monthly electronic funds transfer from your checking or savings account
• monthly credit/debit card payment.

What if I disenroll?

You can choose to disenroll and use your TRICARE Standard coverage. You will have an annual deductible and out-of-pocket cost shares. As a retiree, you may voluntarily disenroll at the end of the enrollment year (September 30). If you enroll again, your coverage will not be continuous and will start either the month after you enroll or the month after that (based on the 20th of the month rule).

Prime enrollment fees are changing this year. Stay on top of your enrollment and help avoid any missed payments by signing up for automatic electronic payments through TriWest.

face painting adventures

Today Ellie decided she wanted to be a black cat complete with her face painted, so she asked Jade to help her with that. Ellie also used black and pink construction paper to make herself some ears. With that I pulled her hair back so I could use a bobby pin and pin her ears down.

She excitedly went outside to play with her friends. Within a few minutes she came back in the house with one of her friends who got permission to get her face painted.

Happily Ellie and her friend went outside to play. Suddenly they came running back in the house all excited with more friends who also wanted faces painted. To this point Jade has now painted 5 little girl faces this morning, who are all bouncing off the wall with excitement.

Sadly our balloon pump has broken since the last time it was used :( so no balloon twisting today. We need to get that replaced before halloween...

Enter to win a Visa Gift Card

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You Know...

You know you are a parent of a special/medical needs child when...

A few days ago on a group I participate with someone started this post to get the parents talking in a more fun way about our kids. While most of these are the thoughts of other parents I have tried to reword some but also tried to keep their general thought in the main post. I am posting the main ones as there were a lot of very good ones that were posted.

• Your friends and their children are out at a restaurant at 9pm, and your child has been sleeping for 45 minutes, has had his or her meds, nebulizer treatments, is hooked up to the feeding pump, sleep apnea machine, and/or other needed machines, and your house is quiet except the gentle humming/beeping of the medical equipment running in the background. You sit there hoping tonight there will be no alarms.
• You can argue with your child’s doctor over the phone and have co-workers (or friends) ask if the doctor needs you to translate their own “doctor-speak” for them at the next appointment. Then you find you need to explain your child’s condition or diagnosis and to a new medical student what the “doctor-speak” language really means.
• You realize your freak-out mode is set to high, when your friends go ballistic over a broken arm, yet your thought process is: an arm is just an arm and I can handle a cast or no arm if needed. Besides broken bones heal really fast. However, dropping O2 sats, respiratory rates to high or too low, heart rates to high or too low, seizures, intensity or duration… these can all be true emergencies.
• Your luggage lets lost on your way home (along with others) and you calmly notice the ONE bag that came in is the medical supply bag (huge sigh of relief). Everyone else is frantic; you however know that eventually the rest will catch up with you.
• When your normal is complex in the doctors eyes, or when the pediatrician comments that your reality of parent –vs- doctor skills are blurred and you are far too comfortable at home. When you as the parent are too comfortable caring for your child, when others would have freaked and taken their child to the ER or had them admitted days ago.
• When your purse/bag contains a mini first aid kit to include: extra g-tube supplies, tape, KY-jelly, a thermometer, saline bullets, extra Zofran, extra tape, duoderm, tagaderm, syringes, extensions, etc... and the questions and looks  that follow… and your car first aid kit rivals that of any EMT first aid kit.
• Your child understands eating as feeds or boluses, AFOs as shoes, and feeding pumps and other medical devices are given human names and qualities, and feeding tube back packs and g-tubes all have nick-names. Your child has multiple medical device back packs to match his or her favorite outfits, holiday seasons, or sports teams.
• The ER and clinic staff recognizes you and comment about giving you your own parking space or  when you know the clinic or hospital staff well enough to know what they do in their free time outside of work.
• Your children know normal glucose levels. How to change feeding tube buttons, mix formula and set the feeding pump, or help trouble shoot error messages on a pump, and hook up and secure extensions.
• You know and can run NICU/PICU/ICU equipment in your child’s room and the NICU/PICU/ICU staff is comfortable letting you run the equipment. You are in the ER with your child and can recognize and know how to use or work nearly everything in the trauma room or you hear equipment alarming in another room and the urge to check because the medical staff is not checking fast enough.
• You have been encouraged to go to medical school, because you clearly know as much if not more than most of the residents under your child’s supervising doctor’s care. The notebook you carry is more comprehensive than most medical books any medical student, resident, or doctor could turn to for answers on your child’s condition or diagnosis. You can rattle off your child’s medical diagnosis, medication, strength, and dose list without looking.
• You have closets or cupboards filled with medications, formulas, supplies, machines, spare parts, not coats, linens, sports equipment, or cleaning supplies.
• Your child knows the hospital layout and can direct others to where they need to go, or you find yourself giving directions better than the hospital staff because you know the shortcuts.
• Your “normal” child thinks something is wrong with all of her baby dolls because they are missing feeding tubes, nasal cannulas, other medical devices, and insists the dolls be fixed and helps to “doctor” and make them right.
• Your family uses syringes as water guns, for splatter painting, to tie die shirts, and other craft projects. Your family uses q-tips, gloves, gauze, and other extra supplies for a variety of craft projects.