Tuesday, March 31, 2009
I am thankful for generous contributions...
...to support my family and the CFF researching a cure.
I am thankful for friends and friends of friends.
I am thankful for supportive family.
I am thankful for Nathan's smile.
I am thankful for suggestions.
I am thankful for health insurance.
I am thankful for HOPE.
Monday, March 30, 2009
Last night all I could think about was Nathan's health insurance and was anxiously awaiting an appropriate time to call regarding the HMO that was assigned to us. I woke up this morning easier than usual but had my cup of coffee anyway (because it tastes that good).
I was going to make the phone call at 9 am but being that Nathan is usually getting his treatments at this time I either had to call at 10 am when he would napping or attempt to get through at 8:30 am. Since I had been anxious to get things settled all night long, I figured I would call immediately and pray that I would be able to speak with the Health Benefits Coordinator (HBC) at that time.
In the end I was on hold for about 20 minutes but I finally got through to a HBC. I explained Nathan's medical circumstances and how I do not desire for him to change specialists. This is the last thing that I would want being that his group has been getting to know him for the past 7 months. Equally important, I have been getting to know Nathan's team of specialists and do not want to go through it all over again with a brand new team.
Apparently the HMO that I requested is the only HMO that is not offered in my county. Luckily I double checked with the Respiratory Center that Nathan attends for the other participating HMO and requested that Nathan be switched as soon as possible. The HBC submitted all the paperwork manually because there was some problem with the electronic submission, I think, it was a little hard to hear and understand. So until I receive a new insurance card and policy I will hope and pray that this so-called paperwork makes it to where it needs to be.
I am a little disappointed that I had to cancel Nathan's appointment for Wednesday because I was going to discuss the results of Nathan's first Pulmonary Function Test (PFT) with the doctor. I will have to be patient. It is better to wait and reschedule the visit than to receive an enormous and surprise bill for services not covered by the HMO that is not accepted by the group.
Sunday, March 29, 2009
Normally this would not be big deal, but since the social worker at Nathan's CF Center specified the insurance providers that they subscribe to (Horizon Health not being one of them) it is in fact a HUGE deal.
Nathan has a scheduled visit at his CF Center this Wednesday, April 1st. It looks like I will be canceling this appointment because April 1st is the date that the new insurance policy is effective. Please let this all just be an enormous April Fool's Day joke. It is alright because I know I will fix it tomorrow, I just get frustrated having to fix everything all the time when I make my needs clear from the beginning.
REMINDER - I am still accepting orders for Nathan's CF T-Shirt. I will be placing the order on April 15th. Click here for more information. And thank you to those who have already contributed toward Nathan's Vest.
Saturday, March 28, 2009
We believe that the new percussor we are using is moving air throughout his lungs more effectively based on its design. A percussor is a device that Jay and I use when performing Nathan's chest percussion therapy (CPT).
These are a few pictures of the older percussor that we have been using up until this week. Notice how the plastic and padding are both cracked (we go through one of these percussors every 2-4 weeks.
These are a few pictures of the new percussor that we have just begun using this week. It is actually just an infant air cushion mask with tape closing the air intake. The respiratory therapist gave us two of these along with the other percussors and we thought it was a mistake. We decided to give the new model a try after completely destroying many of the older model.
Here is a shot comparing both percussors, notice the difference in air volume.
If you would like to read more about airway clearance techniques, click on the following links:
Airway Clearance Techniques
An Introduction to Postural Drainage and Percussion (pdf)
Baby CPT - simplified (pdf)
All of the following abbreviations have the same meaning.
Chest Percussion Therapy
Chest Physio Therapy
Chest Physical Therapy
Postural Drainage & Percussion
***Eventually and God-willingly, CPT will be replaced with The Vest Airway Clearance System.
Nathan was sleeping between us in our bed (he does not always sleep in our bed but I am glad he did last night) and began to cough. As I was half asleep I was thinking, 'Did he just cough up mucous?' and then I extended my hand toward Jay to feel the sheets...definitely mucous.
As I always say "Better up than down". (OK so I don't always say that but I do now)
Jay grabbed a baby wipe (Absolutely love baby wipes! Everyone should carry these with them at all times.) and we did a quick scrub of the sheets, wiped Nathan's mouth and then I held Nathan in an inclined position while we slept (thinking that being more upright would help the situation). He had an inclined baby positioner that looked like a ramp with two foam pieces on the side to wedge him in place but he outgrew this. I will be searching for something equivalent but larger.
Now I am up in the early morning hours to fill Nathan's belly. I am positive that there will be mommy and Nathan nap time this morning and I am hoping that daddy will install the safety gates on the stairs while this nap takes place.
Friday, March 27, 2009
Wednesday, March 25, 2009
As I approached the stairs, it sounded as if he were all congested in his chest, almost wheezing, and then he started coughing up mucous. Each time he stopped coughing it sounded as if he were drowning in mucous, struggling to catch his breath.
After several coughs, I heard him swallow and then, almost immediately, he began gagging. I'm sure that everyone knows what came next but for those of you who are still not quite certain -- vomit. It gets better. Trying to prevent a morning occupied by carpet scrubbing / stain removal, I positioned him so that my shirt would be the "vomit bucket".
He seems much better now, post-treatments, and is currently napping. As for me, time to do a load of laundry (much easier than carpet scrubbing).
Tuesday, March 24, 2009
Just this past Friday, March 20th, I was playing with Nathan on the floor and all of a sudden he started scooting away from me to follow a ball that rolled away. I couldn't believe my eyes, was he really crawling??? He is now using his arms and legs to get around (not quite off his belly yet) and this morning he actually crawled right up to his basket of toys and dumped it out on the floor.
The final "first" of the week (excuse the oxymoronic phrase here) -- clapping hands. Yes, Nathan and I see this being done several times day while watching "Your Baby Can Read" during his treatments, BUT now we can clap along!!!
Nathan is now a hand clapping, cheerio eating, apple juice drinking, crawling little munchkin. Check back soon for some videos of these very exciting "firsts"!!
Monday, March 23, 2009
Aside from being my favorite Yankee Candle, "Sun and Sand" is now the theme of our first family summer vacation. Jay and I decided to take a trip down to Myrtle Beach at the end of August to celebrate Nathan's First Birthday. (Don't worry - we are still planning a birthday celebration for extended family & friends) We wanted to take a family vacation but were concerned about how air travel would affect his CF and therefore chose a destination within driving distance.
Some of my greatest memories from childhood were the vacations I took with my family and I now look forward to sharing these experiences with Jay and Nathan.
Time to research some resorts!!! If you know of a good and affordable resort, please share!!
Sunday, March 22, 2009
Friday, March 20, 2009
Adult: S, M, L, XL, 2XL
- Your name
- $20 per t-shirt
12 Indian Field Dr.
Hamburg NJ, 07419
You may email me with any questions (firstname.lastname@example.org).
I would like to thank Mr. & Mrs. Donovan and the WVRHS Athletic Dept. and Booster Club for using the 50/50 at the Region 1 Wrestling Tournament to benefit Nathan and contribute toward the purchase of an airway clearance vest for him
Wednesday, March 18, 2009
We found out that we were expecting our first child December 15, 2007 and were ecstatic. I experienced no complications throughout the pregnancy but prenatal testing discovered that I was a carrier of the CF gene. Upon receiving these unexpected results, the doctor requested Jay be tested as well. The results determined that he was also a carrier of the CF gene. At first we were devastated but then we began to ask a million questions. What did these results entail for our unborn child? We began to explore the possibilities There was a 25% chance that our child would have CF, a 50% chance that our child would be a carrier of the CF gene like us, and a 25% that our child would not carry either CF gene). We decided not to undergo amniocentesis testing or chorionic villus sampling to determine the exact outcome because nothing could be changed and it was not worth the risk.
On August, 25, 2008, my husband and I welcomed our son, Nathan Parker Skretkowicz, into our lives. Nathan arrived full term, weighing 7 lbs 11 oz. and measuring 21.5 inches long.
Soon after, the doctors became concerned that Nathan was not gaining weight properly. After a series of inconclusive Sweat Tests, his blood was tested for the presence of specific CF genes and when he was one month of age (September 29, 2008), Nathan was officially diagnosed with CF.
CF is a life shortening, genetic disease where the body produces unusually thick mucus. This thick mucus clogs the lungs and leads to life threatening lung infections. It also obstructs the pancreas and prevents enzymes from helping the body break down and absorb food.
A typical day caring for Nathan includes several nebulizer treatments to open his airways followed by chest percussion therapy (CPT) to break up the mucus in his lungs. After CPT, he gets another nebulizer treatment of antibiotic to eradicate bacteria in his tiny lungs. In order for Nathan to digest and absorb the food he consumes, he must take enzyme capsules with each meal, currently 16 capsules per day. He gets supplements of salt daily because he does not retain as much salt as other individuals, and he gets special vitamins which include fat soluble vitamins that he has trouble absorbing. Currently, during the at risk season, Nathan receives monthly injections to protect him from RSV, a virus that could cause serious lung infection and potentially death.
I am trying to be as proactive as a mother in my attempt to help Nathan fight CF. I know God will not abandon me or my family on this journey even though the health of my son and the financial state of my family is a constant worry.
To be a sponsor or to join Team Nathan's Fight visit my Great Strides page.
** I would like to take a moment to thank my dear friend, Jessica Mugavero, for her enormous heart and for sharing this cause with her coworkers. I would also like to thank Jessica's coworkers for supporting our cause as well.
Tuesday, March 17, 2009
...Then I got the official phone call to inform me that Nathan had been approved for NJ Family Care. Needless to say, I am now wide awake, fully recovered, and ecstatic to be rid of COBRA. So this post is my formal farewell to paying COBRA, for Nathan at least.
During the application process I had been inquiring about the extent of the coverage for Nathan (especially with respect to his CF -- all the visits to specialists, tests, treatments, medications, medical equipment, etc.) and kept getting pretty vague answers. I was told that the exact policy would not be determined until he was approved for coverage which could not be done until his current coverage was terminated.
I had the current coverage terminated effective April 1st and am praying that this will avoid any gap in coverage. Under normal circumstances, if there is a gap in coverage he could be excluded based on a preexisting condition. I was told that this will not happen under NJ Family Care but did not get this in writing.
I am now going to call to pay the premium for the first 2 months of insurance (which is infinitesimally small in comparison to COBRA) and await the policy packet. Please pray that the coverage is adequate to cover all of Nathan's CF related expenses. It is really important that he be covered for brand name prescriptions such as his enzymes and his antibiotic (it is about $4,500 for a one month supply of TOBI).
I am still covered under COBRA, but I terminated Jay in January so he is not currently covered. I will most likely be terminating my coverage as well. I am going to be looking into "major medical" coverage. I am really not sure what this is but I am guessing it does not cover doctors visits or prescriptions.
Monday, March 16, 2009
So Nathan has been eating Cheerios and/or Gerber Puffs (which are basically the same thing as Cheerios) for quite some time now but he is now able to pick them up and put them in his own mouth. Hooray!!! I also found out that he is now allowed to have up to 2 oz. of 100% fruit juice per day, so I let him experience apple juice for the first time (which was my favorite as a little girl) Here are a few pictures of his progress!!!
Look of concentration and determination.
Some in his mouth.
Some on his cheek, neck, and a whole lot more on the floor.