Sunday, December 26, 2010
Thursday, December 23, 2010
Tuesday, December 21, 2010
Saturday, December 18, 2010
Wednesday, December 15, 2010
Monday, December 13, 2010
Sunday, December 12, 2010
Thursday, December 9, 2010
Wednesday, December 8, 2010
Tuesday, December 7, 2010
Friday, December 3, 2010
Wednesday, December 1, 2010
We got secondary insurance coverage from the state of Ohio under the Bureau for Children with Medical Handicaps. Our insurance is really phenomenal, and we met out deductibles and out of pocket max, oh, back in like April, but we still have co-pays for doctor visits and prescriptions. And we go to the doctor A LOT and use a LOT of prescriptions (by "we" I mean Drew). So the BCMH picks up all of those extras that are related to CF. So if we go to the pediatrician, we still have our co-pay, but when we go to see the CF doctors then there's no co-pay. I'm getting to my point.
Saturday, November 27, 2010
1) I hate wearing shoes. You would never guess that from the number of shoes I own, but I'm barefoot 90% of the time.
2) I'm not a morning person. I can't wake up to an alarm clock (like literally, my brain mutes it out, I don't hear it going off.) I long for the day when I can sleep in again.
3) I love ice cream. Mostly vanilla. Actually, almost exclusively vanilla.
4) I have forgotten to feed the twins breakfast on more than one occasion.
5) I'm a total social networking junkie.
6) I miss living in Philadelphia. I like Cincinnati, but its never felt like home.
7) I've learned over the past several months who my real friends are.
8) I've considered trading in our queen size bed for two twins.
9) I am terrified of snakes.
10) I seriously think I have the cutest kids in the world. I know you all think you have the cutest kids in the world too, but I really seriously think mine are.
Thursday, November 25, 2010
Tuesday, November 23, 2010
Saturday, November 20, 2010
Thursday, November 18, 2010
Tuesday, November 16, 2010
We got to the VIP reception shortly after 11 when the event started. I'm pretty sure that if you were attending the event you got into the VIP reception. We didn't know many people there. We were definitely out of place among some of Cincinnati's wealthiest. We shook hands with a few people and sipped our water before being escorted downstairs for lunch and the main event. The event was all about schmoozing. Our perception was that these folks all kind of run in the same social circle and were just getting together for a nice lunch in honor of Cystic Fibrosis.
My name is Erin Moore and this is my husband Martin. We have 3 children – Ella (2), and 8mo. Old twins Lily & Drew. Drew has Cystic Fibrosis.
Drew & Lily were born on March 14th of this year. The first day of their life was perfect. At about 36 hours old, a distended belly & an x-ray showed that Drew had a blockage in his bowel which we would later learn was something called Meconium Illeus, a red flag for diagnosing Cystic Fibrosis. It is terrifying and heartbreaking to have your 2 day old baby taken away from you, not understanding what is going on or why this is happening to you. When Drew was 4 days old he had his first surgery. At 7 days, he had his second. He was 3 months old when he had his 3rd surgery and his most recent surgery took place on September 7th when he was just shy of 6mo. All of these surgeries have been related to him having Cystic Fibrosis.
I remember when the doctor, he was a fellow, came into our room in the NICU at Childrens shortly after Drew's second surgery. We were almost certain of the news he was bringing us, but to actually hear the words “Drew has Cystic Fibrosis”, nothing can prepare you for that. We held it together while we talked with him. He stayed for almost 2 hours, answering our questions and talking to us about the disease. He told us there was no cure. When he left we both fell apart. The flood gates opened and a million emotions came pouring out. It wasn't fair. We wished more than anything that we could make him better, that we could take this away from him. And the hardest part was “there is no cure”.
Over the next several weeks and months we got an education on Cystic Fibrosis like nothing we had ever gotten before. There were doctors and nurses and social workers and dieticians and respiratory therapists and chaplains and so many other people who helped us learn about this disease, and to those people we will forever be grateful. I think that the most important thing that we learned during that time is that there is hope.
Everyday Drew spends about an hour and a half inhaling a series of different medicines. He does airway clearance exercises for an additional hour and a half every day. He takes special vitamins that his body is insufficient in producing. He takes enzymes every time he eats to allow his body to break down and absorb appropriate amounts of fat. Nearly every time Drew has gotten a cold he has ended up on either IV or oral antibiotics because his body begins to culture bacteria in his lungs that he cannot get rid of on his own. But he looks like a normal kid. He acts just like his sisters, and we treat him that way too. All of the advances in medicine over the past many years have given him this opportunity. But we still need new medications and better treatments. The CF Foundation has been a driving force behind nearly all of the major advances in care. CF research does not receive federal funding; the foundation relies on the support of people like you.
Back in the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. The life expectancy for someone born with Cystic Fibrosis in 2010 is still only 37. Its amazing that 50 years ago Cystic Fibrosis was a childhood illness, and today many people are living well into adulthood, but its not good enough. Its hard to think that I may outlive my son. Its not supposed to be that way.
Tuesday, November 9, 2010
Monday, November 8, 2010
Wednesday, November 3, 2010
Friday, October 29, 2010
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
Our doctors sent in all of the paperwork to our insurance company so that he could get this shot once a month from November - April (the "season" for RSV) and I just got a call that he was declined. DECLINED!! The woman from Anthem that called said that the doctor had reviewed the case and Cystic Fibrosis is not a qualifying illness and it is not necessary for him to receive this vaccine. Seriously? A real life doctor, someone with an actual medical degree declined this? If they won't consider Drew high-risk, who will they? I know why they declined him. Its $1000 a shot and he needs 6 shots. We pay a damn fortune toward insurance every month toward our premium and even more toward hospital bills and prescriptions, and they won't pay for him to get this critical vaccine because he doesn't qualify?! BS. I'm appealing it. I asked her how the process work. I've made the phone calls. All in the past 20 minutes since they called me to say they were declining us. And at the end of the call she asked if I had any other questions. I said no. She said well I hope you have a nice Halloween! Fuck you.
Thursday, October 28, 2010
A lot of my family got to meet the twins for the first time. Its always interesting to see people who haven't seen/met Drew yet have to say about him. There are always a lot of questions about him and his care and we are more than happy to answer them. From the start, we felt that knowledge was power and thats why this blog was created in the first place. No one can ever believe how big he is. I guess they expect this frail little boy, but he's far from that! We heard "If I didn't know his story, I would have no clue anything was even wrong with him!" more than once. Thats the blessing and the curse I guess. I love that he looks so great, just like the other kids. Chubby little boy, full of smiles and laughter. Everyone will treat him just like the other kids. On the flip side, I don't know that anyone will ever really understand what we go through every day to keep him looking that way.
Hes doing great right now. He sounds a little junky again but I guess thats just the deal when he gets a cold, at least until he outgrows the malacia. He's pretty much done with the vomiting. It still happens from time to time, and it seems to have something to do with him being really full. The GI doc wants us to continue using the Elecare formula for a couple more weeks and if he still seems to have slow gastric emptying they will put him on some medicine to help with that until his stomach heals completely from whatever he had (they said it can take up to 8 weeks!). We're hoping to get him fitted for a vest next time we're at the doctor. This is another airway clearance device that would take the place of our chest percussion. It still happens 2-3 times a day but it would make our lives a little easier (at least I think!). I'll write more about that when the time comes.
We have Ella's Harvest Festival at school on Friday. She's going to be Tinkerbell and the twins are going to be bacon & eggs. Hopefully we will have a relaxing weekend. I'm so tired from this past couple of weeks that I could use a weekend full of nothingness.
Thursday, October 21, 2010
Sorry my posts have been kind of lame lately. I'll get back into it. I'm just enjoying crazy life with everyone at home, and now this next 6 days our first real trip with the twins. Hopefully the rest of our visit goes as smoothly as the past two days, and I'll be sure to post some more when we get back!
Saturday, October 16, 2010
My cousin is getting married next weekend and we're hoping to make it back to PA for that. Prior to the whole vomiting extravaganza, I had some anxiety about the actual trip - are we going to all survive 10 hours in the car?? Now, I'm more anxious about the logistics of keeping Drew healthy for the 5-7 days that we will be 500+ miles away from his doctors. The list of meds and equipment I have to bring is ever growing.
The last time we were in PA was Thanksgiving of '09, so almost a whole year. There are a ton of friends that we want to see and a lot of other people who are anxious to meet the twins. I'm so nervous about this. Our friends here have gotten use to the drill - wash/sanitize your hands upon entering our house, and kindly don't touch the babies. Its hard. I'm guilty of doing it to others! When you see a baby, its hard not to reach out and touch it, whether you know the kid or not. With Ella, I didn't really mind it to much when people would reach out to grab her hand or touch her cheek, but things are different now. The more people handling the babies, the greater the chances are that they will pick up a cold or something and then our lives are turned upside down with endless trips to the doctors and the fear of a hospital stay. I really do try to keep things as normal as possible. I don't want people to be afraid of us, I just want people to be respectful of us and our concerns. We want the twins to meet you as much as you want to meet them, but please understand if we ask you not to touch them. Again, think what you want of me, but its my life and I need to do what I think is best.
Hopefully we get the all clear on Tuesday and can make some plans to see some of our friends who we haven't seen in ages. We haven't even told many people we're planning to come back east because we don't have anything set in stone, but once we get the all clear we'll definitely try to find some time to see all of our friends and family who we haven't seen in what seems like forever. And if we can't make it this time, we will definitely plan another trip soon!
Tuesday, October 12, 2010
Post Infectious Gastroenteropathy was our "diagnosis". That means "disease of the stomach & intestines". Caused by what you might ask? Great question. Who knows. The GI doc said that he assumes it was Gastroparesis, a condition that affects the ability of the stomach to empty its contents, but there is no blockage (obstruction). It may have just been a bug like you or I get that for whatever reason he had a harder time tolerating and caused some inflammation in his stomach which caused the gastroparesis. Who knows. The doc described it like a bruise. You get punched in the arm. The incident is over, but the soreness and evidence of the punch is still there. The bug may be gone, but the soreness of the stomach and vomiting may still exist for a little while. All we know for sure is that the 10 days of vomit seem to have come to an end and with any luck won't be returning.
Thanks again for all your thoughts, prayers and suggestions on what could be going on. Hopefully we don't have to play that game to much in the future :)
Sunday, October 10, 2010
I'm going to lay the whole situation out once again, from day 1 when this started happening. If anyone has any thoughts, regardless of whether or not your a doctor, please let us know. We're willing to consider anything.
On Friday October 1, Drew started throwing up his bottles of formula. I think there were two instances on Friday. Things continues on Saturday and on Sunday. It wasn't specific to right after he ate. He could eat and 3 hours later throw it all up (and I seriously mean all. like heaving, shooting puke, flying across the floor) or it could happen nearly immediately. Wet and dirty diapers remained normal. By Sunday, and having kept just about nothing in, we were able to pinpoint the puking to a sitting position. He could jump up and down in a jumparoo and not get sick, but as soon as you bent him into the sitting position - carseat, high chair, just sitting on the floor - projective vomit.
We saw the pediatrician on Monday who ordered an Upper GI study where they give him something to eat that shows up on an xray. This showed a perfectly normal esophagus, stomach and start of the small intestine. His bowel was slightly distended but not concerning to the tech. Tuesday we were in here for an unrelated bronchoscopy (which came back clear!) and then on Wednesday with him still puking they decided he needed to be admitted for observation so that he didn't get dehydrated. He hadn't kept anything down since Friday.
Outside of the puking, he looks and is acting perfectly normal. Playing, smiling, wet & dirty diapers are normal, no fever, absolutely no other symptoms. If you bent him, he puked. On Thursday morning, the doctors looked at some xrays they took on Wednesday night and thought that he might have DIOS which is a partially obstructed bowel, common in CF. All the tests they did came back negative. They tested him for Rotovirus, CDIFF allergens in his blood, and a dozen other things, all negative. Well, CDIFF was tested 3 times and 2 came back positive, but since he is completely symptom-less (its a colon problem with terrible diarrhea) they think that hes either 1)just a carrier or 2)they got false positives with is apparently reasonably common in children until 1yr).
By Friday, the puking was no longer specific to position, meaning he would puke even if you didn't bend him. It was also almost immediately after he ate. There was no more eating and playing for 2 hours before puking, it was right away. We took him off the formula (yes, we tried switching from our normal Good Start to Similac Soy, no change) and gave him just pedialyte, which he is able to keep down in small quantities. We met with a GI doc on Friday afternoon and hes the one who suggested that it might be this weird inflammation of the stomach thing that could cause a temporary intolerance of the formula, so they switched him to Elecare, a predigested formula that should be easier on his system. He said that it could take a day or two for him to tolerate that so on Monday we could see where we're at and take it from there.
On Saturday, we tried a 4oz bottle of the Elecare which was promptly returned all over us and the floor. After that, there were two feedings of pedialyte which he kept down. Later in the afternoon, I gave him 2 oz of Elecare followed by 5oz of Pedialyte and he didn't barf! Before bed, another 2 oz of Elecare followed by 5oz of Pedialyte, still no vomit. This morning, Sunday, we tried 4oz of Elecare again and it all came back up. Three hours later, we went back to 2 oz of Elecare and that too wasn't tolerated. The only thing that goes down and stays down is Pedialyte, except for the small doses of Elecare yesterday.
The only other things going in at this point are his enzymes on about half a teaspoon of applesauce. We even tried giving him the enzymes (Creon) without the applesauce which yesterday he was able to tolerate those two feeds, but this morning was not. Everyone doubts that a half a teaspoon of applesauce would cause this big of a problem, and this morning without applesauce he still threw up - myth, busted.
He was on antibiotics for 1 month prior to this vomiting for staph that they found during a post surgery (aorta pexi) bronchoscopy. No one seems to think that would have anything to do with the vomiting, but I'm just putting it out there. It was Keflex, and he stopped it the morning before the puking started. The CDIFF thing popped into our heads because it was post an antibiotic treatment, but there has been absolutely no diarrhea.
I don't know who all reads this but if anyone has any thoughts or suggestions we are open to hearing them. Tomorrow they will do a motility study to see how quickly his stomach empties and then will start thinking about other tests that can help us figure this out. In the meantime, thanks for your continued thoughts and prayers. We'll keep you posted!