November-December 2014

19 Dec

It’s been several weeks since we were discharged from the hospital for Cameron’s Fontan surgery. We have also passed the fat free diet restriction of 6 weeks and back to a semi normal diet but we are trying to take it easy into the fat. We had a follow up cardiology appointment where the medications were adjusted 8 hour Captopril to 12 hour Enalapril and some meds were lowered as well as stopped like the Zantac and the 8 hour Sildenafil. We are still on half a tablet of Aspirin Daily, 12 hour Enalapril, Daily Lasix and Daily Coumadin.

We have been getting blood work weekly to try and balance the Coumadin level but it keeps coming up low. Cam has had a few meltdowns over getting the shot which he calls a pinch. Cam has a horrible time when we get into the lab room, but he recovers fast and goes on with his day. We had a miserable time at the last Cardiology visit where we had to do the Echo and ekg. These are simple and non-invasive tests where they do not hurt you but Cam was so upset about laying down in the bed, I could hardly handle my own emotions as he screamed in fear of the wires touching him.

Anyway we had a great Thanksgiving even with the fat free diet restriction which ended the first week of December, thank goodness. We took advantage of the beautiful weather and used our gift certificates to the global wildlife center to go on a jeep ride. Cam got to touch a giraffe up close and personal on the jeep tour it is definitely a great experience to try. Christmas has just past and was incredible to say the least. We were all to eager to get him anything he asked for and so many family and friends helped pour in the gifts that he has rightfully earned this year. THANK YOU!!!

It was a joy to see him indulge in Christmas and he even took well to sitting with Santa telling him exactly what was on his wish list. The wish list got longer as days rolled by but he stayed pretty consistent for wanting the puppy ball pet off tv and the max tow truck that pulls people among many other super hero toy requests. Don’t worry he got them and then more… Sparky our elf on the shelf was a big hit with his imagination too dressing up as new super heroes and villains each day. Cam even made special costume requests which was adorable to see his excitement each morning.

We decided to announce Cameron will be a big brother next year around the end of May 2015. We will get an ultrasound around 20 weeks to check for everything in the new baby Mogg that can possibly be seen at this stage like we did for Cam just to be cautious. Hoping the best… Merry Christmas and Happy New Year!!!

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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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Post Fontan Day 21-22

24 Oct

Busy but in a good way… Where to begin?

The last two days we had a fast change of pace with some orders to get a full xray and ultrasound and Echo. Our mornings were busy and Cam really doesn’t enjoy the goo gel (hot/cold/warm) from the ultrasound and Echo so that was two rounds and two days in a row of those events. The results look promising for the pleural spaces in his chest. There was mention of no fluid on the left side where there was some previously and some fluid on the right but not enough to measure. The Echo was reviewed but there was no news of specifics which no news could be good news.

Cam still has the PICC line in his right arm but is only getting heparin and ancef to keep the line open for daily lab work. Cam doesn’t seem to want to move or use or look at his right arm with the PICC line but when he’s real playful he try’s to use it more. I’m super glad to hold on to the PICC line so he doesn’t have to be poked every morning for blood work. Cam was started on Coumandin/Warfarin which requires daily blood work to monitor and balance the level of this medication. COUMADIN┬« (warfarin sodium) is a prescription medicine used to treat blood clots and to lower the chance of blood clots forming in your body. Coumadin is an anticoagulant and we need it for the risks associated with having the fenestration. Cam is on a very low dose warfarin but we will still need to be aware of the vitamin k in his diet mostly no leafy greens and a consistent balanced diet. Also, there are higher chances of easy bruising, bleeding and all the other dozen risks and/or side effects. Being a boy we will see how he handles the bruises and no rough play.

There was mention of H-O-M-E and I spelled it out because I don’t want to get our hopes up just yet! We still need to get the coumandin under control and all the finer details of all the other medications. We are getting Coumadin/Warafrin, Captopril, Sildenafil, lasix, Pepcid/Zantac, aspirin and we were getting aldactone but that has stopped. We will need to figure out the blood work situation for handling the Coumadin if we get to leave. I’m not looking forward to explaining the need for pinches to Cam on a regular basis, it may get tough. Our fat free diet should remain for 4-6 weeks we will be counting those days down. No picking him up under the arms for 3 months so we are careful.

Cam is walking better, we take many walks around the unit and just for fun toy car rides. Gamma is taking him to the gift shop and packing up on fat free candy and more gifts geez. We got more fun get well gifts (Thank You!) great distractions for our stay. We got our first set of beads of courage and since Cam was doing so well with everything (and he’s pretty adorable stringing the beads up) we got to cash in on some big special beads.

It was mentioned after the possible H-O-M-E comment and positive test results that we must be doing some strong prayer in this room! I quickly agreed and commented that there is a community of prayer out there for Cam just wanted to send more thankfulness to all who follow us!!! It brings me to tears to think we have made it this far in our journey and the light at the end of this road is all too close in sight.

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Post Fontan Day 19-20 CICU

20 Oct

We got to go outside and give Cam some sunshine Sunday… We got to take a walk around the unit then we were given the ok to go outside which is big! We had Cam walking out his room to the hall to get in this toy car and then we would ride him around just to get out the room. They really want Cam walking more but we were taking it slow because his muscles are a little off from being in the bed so long. Today we just did more walking and riding, they even had someone from Physical Therapy come by to evaluate Cam. Anyway we have some work ahead of us with getting him back in shape. Also, we are getting morning X-rays to watch any new fluid in his chest. The Doctor said they saw some fluid on the right side and tomorrow we will get another xray and Echo and ultrasound to follow the measurements. Hopefully Cams body can handle pushing out the fluid with diuretics and we won’t accumulate enough fluid to need another chest tube(s). Continued prayers are welcomed and much appreciated…

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