Archive | November, 2014

Raffle Tickets for Cameron Mogg – November 20th, 2014

20 Nov

And the Winners of the Cameron Mogg Raffle are: (We have a video posted on my Facebook page of Cameron actually pulling these two winning tickets):

1st place prize went to John Keller and 2nd place prize went to Annie Cantrell, Congratulations & Enjoy!!! A very special thank you to Andrea Varuso-Corne, Randy Lynn Varuso-Gioe, Gail Varuso and everyone else who shared the post or sold tickets we appreciate all their hard work. Also, our gratitude goes to every single person who bought a ticket to show support for Cameron and our family!!!

Original Announcement:

Cameron Mogg Raffle Tickets are being sold now from our great friends Andrea Varuso Corne and Randy Lynn Varuso Gioe with special thanks to Gail Varuso. Our contact for these tickets will be via email andreavcorne@gmail.com or Facebook friend and message Amanda Williams-Mogg for details on how to get tickets. There are 1,000 tickets available for purchase and all profits will go to the Baby Mogg Medical Fund. Drawing will take place November 20th 2014. Ticket Price: $10 Each or 3 for $25. There are amazing prizes on the table:

Grand Prize:

> 2 tickets to the Saints vs. Panthers Game December 7th 2014

> 1 Night stay at the Hilton Downtown on December 6th 2014.

> Gift card to House of Blues with access to the Foundation Room

> Autographed picture of Drew Brees

2nd Prize:

>> 4 tickets to the Pelicans vs. Spurs Game December 26 2014

>> $50 Visa Gift Card

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Follow Up with Pediatric Cardiologist

18 Nov

We had an appointment with his Pediatric Cardiologist Dr Sernich on Wednesday October 29th and we knew we had to run all kinds of testing. We had an xray, Echo, ultrasound and blood work. It was an extremely busy day and Cam was upset from most of it being completely over the hospital and the bed and all of the touching and testing and wires etc etc etc. After the results were back there was still a small amount of fluid in his right side of his chest in the pleural space that needed to be watched carefully so it was another XRay and ultrasound scheduled for Friday. Our Doctor said his heart function looks great there was no more fluid in that area where there was a small amount in the previous week in the CICU when we had the PICC line removed so that was good
news.

Friday came we went to Chnola on Halloween day all dressed up as Wonder Women Mom and Captain America Cam. We did our Xray and ultrasound checking for the chest fluid on his right side. The measurement sounded like it grew slightly but the Nurse assured me it was such a small amount that we could go home that day. We where still warned to keep our ‘just in case we are admitted for chest tubes’ bags packed and to come back Monday for yet another round of testing.

Halloween at home was most enjoyable, we did go out into our loving neighborhood and got to visit some what with others (This was risky because we should not be out in public spaces but we were as careful and considerate of our personal space outside with Cam). Anyway Cam enjoyed knocking and trick or treating but most of the candy went to Wonder Woman Mom and Wolverine Dad. Cam is sad he cannot have the chocolate candies and asks if they are a yes or no fat free food which is a funny sad! We just tell him that he is on special medicine and some foods will make him sick again so mommy and daddy are super careful with what he is eating has to be fat free. We also tell him after all the medicine is done we can go back to having all these other foods and it won’t be too long that he can’t have these special foods which he does seem to somewhat understand or agree with us for the moment. He even checks the labels with me sometimes it’s so sad that’s all I can say to explain it. I feel like I keep feeding him the same things over and over but even before all this he was a repetitive meal toddler anyway. Cam does ask for these same meals of fat free mash potato, hash browns, French fries and noodles which is good and we try our best to bring new or different snacks to the table often. The weekend passes at home with no symptoms of chest fluid.

Come Monday, November 3rd we go back to Chnola for our Xray and ultrasound again for the chest fluid. Bam! The fluid is gone and we are released from following that issue. This was a big surprise for us and a huge exciting moment of relief! Mommy is in shock that things worked out with this chest fluid because she was terrified we would be admitted back there for new chest tubes knowing our long history of chest fluid after the Glenn surgery. Anyway all is well (knock on wood) and we return home Post Fontan successful…

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Home & Follow Up Appointments

6 Nov

There were several follow up appointments to handle after we were discharged and it kept us very busy, but we were ever so glad to go home. We went home on the following medications: Aspirin, Sildenafil, Captopril, Lasix, Zantac and Coumadin/Warfarin. We have several restrictions from no lifting him under the arms for 3 months, to fat free diet for 6 weeks then low fat diet for a few weeks, to fluid limitation and goal of 1,000 cc daily, to no public places for 6 weeks, to no one sick within the last two weeks, to no contact sports and no leafy greens due to the Coumadin/Warfarin.

The Coumadin/Warfarin requires blood work to test the medication level which the Doctors want it between 1.5-2.5. We are taking it once a day and alternating half tablet one day and whole tablet the next etc. Cam does not care for the shot or pinch which really no one does and hopefully once it’s balanced we will only need to do blood work once a week or longer. Also, this medicine requires a balanced diet with special consideration for avoiding some foods with Vitamin K like leafy greens that would affect the effectiveness of the medication. First follow up appointment was Saturday October 25th, we needed blood work INR PT test to balance his Coumadin/Warfarin medication. We took the drive home to Covington after that visit.

Then Monday October 27th we had to follow up with an X-ray. Cam had a very small amount of fluid in his pleural space on his right side. We have been concerned about pleural effusions due to Cam’s history with his previous Glenn surgery having to handle chest tubes in and out and chyle leak for months and months. They were watching the fluid very closely and we were warned on Monday that we should maybe keep a bag packed just in case the fluid grew rapidly. If the fluid didn’t get handled by the Lasix and/or Cams body naturally and the fluid grew we would need to be admitted for a new pigtail chest tube. The feeling of worry was overwhelming and they questioned if we were keeping to the fat free diet while at home. We were definitely keeping to the fat free diet as difficult as it has been finding proper meals Cam will accept daily.

Cam is so quick and very smart, he understands more then we give him credit for sometimes. We try our best to be honest with Cam and to explain things to him because all of this can be frustrating to handle and at 3 years old scary. We would assure him we would tell him before anything happens. We told him they need to do tests to him to make sure his heart and lungs are ok like the XRay for his bones, EKG and Echo for his heart, ultrasound for his lungs and blood work for his medicine. He had a horrible time taking his first shower when we got home and taking off the bandages was a heart breaking nightmare. He hates taking off his shirt and tells us he doesn’t want to see the boo boos. We were suppose to betadine his chest three times a day but it was a bad upsetting experience each time if we got to twice a day. When we were in the hospital he would always want the ‘covers on’ so he would feel somewhat protected from anything about to happen. It was sad most times but we all made it through and tougher then ever so proud of our Cam the man!

About the fat free diet, it’s 6 weeks then a low fat diet for a few weeks then slowly introduce a heart healthy normal diet. We tell him they are giving us special medicine for him to take and that he can’t have some foods for now. He has picked up on us saying fat free foods and will ask to have fat free food which is helpful. We still try our best to eat our regular food away from him in case it would upset him that he can’t have regular chips and stuff. He does get upset sometimes when we say no but we have made as much fat free foods as we can cook at home to be accommodating like waffles, cookies, hash browns, mash potatoes, pizza, making French fries and even found rice noodles. All the time having to be extremely careful of the serving size because labels are misleading when it says fat free or total fat of zero but it’s only for a single smaller serving size. No oil is fat free even that spray can is misleading because the serving size is 1/5 a spray which is impossible and wouldn’t help cook anything at that size. Always replacing the added ingredients with fat free fake egg, yogurt, applesauce, fake sprinkle and spray butter, skim milk, cheese at the serving size Etc etc. It’s all been a process and yet worth it all not to have any new chest tubes and staying home comfortably. More to post soon on our journey home post Fontan with Cameron aka Baby Mogg.

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Post Fontan Day 23 Discharge Day

1 Nov

Thursday, October 23rd late in the day we got the news that we were getting set up to go HOME! There was a lot to do and plan, we were ecstatic and I was nervous!!! We had to get all the medication settled which was difficult to approve some with insurance but it got handled by a very hard working, persistent and kind person at Chnola, thank you Lynn and C&C Pharmacy for all that extra time on the phone! After we were finishing up being discharged, we decided to take out our family super hero outfits to take a photo of our escape. The costumes Batman Dad and Batgirl Mom we had were a surprise for Robin Cam and he loved it! We encouraged Cam to say ‘We are busting out of here!’ And he kept saying it the entire way out… Too cute!

We stayed at Grandma’s in Metairie for a few days, we had some follow up appointments to settle the next week. Cam had a small amount of fluid in his right pleural space near the bottom of his lung in his chest and they wanted to follow it carefully so we had an appointment every other day. We were very busy but it was worth being home even with the back and forth check ups. I will post those results and details soon.

I apologize for the late posting my iPhone was full and I had no storage memory to upload the app I use to post here. I had 1,000 pictures plus many videos of our hospital stay which I had to unload. Anyway we are all home now happy and unpacked much more comfortable. The camper looked like it threw up into the house but having the camper really helped out with our extended stay at Chnola. I want to thank everyone who sent us prayers, support and all those sweet Get Well gifts for Cam! More posts to come soon…

My Facebook Post:

What??? Look who’s busted out Chnola… Batman Dad, Batgirl Mom and Robin Cam! Yes that’s right we were discharged and walked out as a superhero team! Three weeks ago Cam had the Fontan surgery and now we are heading HOME!!! I will update Baby Mogg later for now we are moving out and making follow up appointments next week…

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