June 2015

Cameron turned 4 years old last month and we all celebrated our Baby Mogg. We had some great birthday celebration(s) for Cameron! A few homemade birthday cakes and then a big kid birthday party with Grandma ‘Gamma’ Mogg all themed at an iPad game Cam plays called Plants vs Zombies. Cam is just so amazing and fun, very out going and kind we are just so proud of him and all he has overcome these 4 years! Cam will be attending preschool this year. I’m in complete denial and do not think I can acknowledge those Mommy emotions until the last possible moment. 

Cam went to his cardiologist visit last week so we have that update where he had an EKG and Echo done. He is 99.5cm tall, weighs 34lbs and on a side note almost caught up with vaccinations just one pending. He did great with the check up and the EKG stickers seeing the wires but when it came time to lay on the hospital bed we hit a touchy spot. Cam did not want to lay down on the bed and had a little melt down (understandable after all). He even asked if he could sit up for the Echo test, but with some help from Daddy distracting him and Mommy laying with him we made it through the Echo. After some complaining we were able to lay down with minimum crying but many questions of ‘Are we done?’. They put a fenestration or hole in Cam’s heart during the Fontan surgery last October to help relieve some pressures. They tried and tried during the Echo to find the fenestration but it has apparently closed on its own some time since our last appointment in February. 

I need to correct something I posted earlier about the Doctor’s expectations for the fenestration or hole they were monitoring from the Fontan surgery. I am now under the impression that they actually wanted to keep the fenestration open until they were ready to back off the Coumadin and allow it to close on their schedule. However, the fenestration has closed on its own as of now so we are to monitor him that his body and heart can handle this change. They do think Cam’s body and heart is handling the fenestration closed now but we were instructed to monitor him for any swelling, coughing with flem or any stomach issues resulting in diarrhea. Our next cardiology appointment won’t be for another 6 months (knock on real wood). Again, it is ok that the fenestration has closed and they would not do anything to him as long as he can handle the change. However, they would have preferred to make that decision rather then it happened on its own.

We are no longer on the Coumadin and we no longer need blood work done to test that medication level. I know Cam and I both are way past over the blood work pinches (We call shots, pinches)! The blood work was almost weekly since last year as his level was always on the lower side of 1.4-1.6 which they wanted it between the 1.5-2.5 area. The medication itself I don’t think was difficult for Cam to take every day just a pill or two once a day depending on the dosage and some obvious bruising on his legs because he is a boy and plays rough. It was the blood work that requires a small child being held for a shot in his arm which made it difficult for me to handle, watching him struggle and cry over it each time was hard.  

I have to say Cam was always a strong big boy when it came time to go get blood work done. He was always completely aware when we pulled in the parking lot at the clinic what was going to happen with the shot. Now I did distract him with a guarantee of a new Lego toy character with each shot and that seemed to help sometimes but there was always understandable tears and crying during the pinch. Our collection of super hero and villain Legos is sadly most extensive now. Cam would sit with me in the waiting room very patient but always concerned when they called his name as he knew it was his turn for a pinch. The staff knew us well at the St Tammany clinic from our all too many visits for blood work so I can say that I will not miss doing any of those pinches experiences and I know Cam feels the same!  

On the subject of Cameron’s little brother Wesley Raider Mogg our Baby Mogg 2.0 we are at two months old and about 8lbs on enfacare 22 calorie formula recently switching to Gentleese. We are trying to take vaccinations slow since he was premature at 35 weeks. We are in transition of baby bottles to the Dr Browns type but that is to help with gas, a normal baby issue. Besides that all is good for Wes (knock on real wood again… I know this is silly to put here and type up but I’d rather be safe then sorry)! Cam is an amazingly sweet big brother always checking on him, helping with his lost pacifier and constant hugs and kisses.

We all really enjoyed celebrating Cameron turning 4, it would not be possible without all the hard work and dedication from the amazing Surgeons, Doctors and Nurses both current and all of the past research too from the families before us! We could never express our gratitude enough for them saving our son’s life. Cam is a special light in our world and we are most thankful for him! As always thank you all for the continued support and prayers for our family, it has been a very long 4 years handling the HLHS journey but completely worth it to have Cameron with us and share his joy of life! Sometimes I feel like we should celebrate every moment of every day and that’s just what all of this has left impressed on me anyway. If there are any further updates on our Baby Mogg past this point we will do our best to post for all those following us and our HLHS journey, post Fontan third and final scheduled surgery. 

Speaking of Fontan a very sweet family is going through recovery after the Fontan with their heart warrior Dylan.  We first met the Dishons in the CICU at Chnola when I was pregnant with baby Mogg and they were a true positive guiding light for us!  Please say an extra prayer for them, thank you! 

    
   

   
    
    
    

    

    
  

    
    

    
   

   
  

    
  

  

   

Wesley comes Home 5/11/2015

Cameron’s little brother Wesley Raider Mogg was born 4/22/2015.  Wesley had to stay in the NICU at St Tammany Parish Hospital for 19 days.  He was premature and was in an isolate for a few days until he could hold his own temperature.  Also, Wesley was given an NG tube to give him his feeds of formula until he was strong enough to bottle feed.  Luckily, Wesley did not require a ventilator or any other medical assistance.  On Monday 5/11/2015 Wesley was discharged from the hospital and came home.  We had an appointment with the Pediatrician last week for Wes and he weighed 4lbs 11oz.  There are currently no other medical concerns for Wesley besides putting weight on him.  Cameron has been kind and very good with the new baby home.  Cam is going to be a great big brother and we are so blessed to have them both.  Thank you again for the support and prayers for our family. 

 
   

   

       
   

  

          

  

   

Baby Mogg 2.0 (Wesley Raider Mogg: 4/22/2015)

Wesley Raider Mogg came into the world 4/22/2015 at 12:17pm weighing a tiny 3lbs 4oz and 16 1/4″ long.  The baby was taken early in pregnancy at 34 weeks due to complications but both Mommy and new baby are well now.  Wes will need to stay in the NICU until he can grow to around 4lbs and hold his own temperature which may take a few weeks.  We are no stranger to hospital stay but none of the alarm sounds were missed not even a little from pumps finishing dosages to the alarms of high to low heart rate and oxygen saturation.  However, this round with Baby Mogg 2.0 we have a lot less happening which is a blessing.  Again, we are only waiting on weight gain at this point and there are no current complications with the new baby.

Cameron is officially a big brother and if it were not for Cam we might not have caught the pregnancy complication soon enough to act.  We had requested ultrasounds to check for any heart defects and instead found a weight issue which called for early delivery with Wesley.  It is truly a blessing for our family to have the current technology and medical advancement available today.  I’d like to thank everyone for their prayers and concern for our new baby boy Mogg Wesley, we will post updates here if anything new should come up. 

  

   

  

  

  

  

   
                             

January/Febraury/March 2015

Wow how time flys… Anyway we are past January/Febraury/March 2015 and (knock on wood) things are going well for all of us.  Cam has been doing great growing and growing into such a sweet man.  Our newest addition Baby Mogg 2 has had an anatomy ultrasound to check for all four chambers of the heart.  We were told there are no major heart defects currently visible in the new baby and we were over 20 weeks along at that test.  They cautioned us that there are some defects one cannot see in the ultrasounds or test until after birth which we can understand but it’s still a relief for now, no news is good news.  We did find out it’s a boy!  Cam will be a big brother and is very excited to have a playmate.  Cam wants to name the baby boy after a super hero like robin so he can be batman or iron fist but that may not happen.

Cam had another cardiology visit in Febraury where the testing went much less stressful and unnerving unlike the previous visit.  We practiced the ekg and Echo at home a few times just going over and over what to expect as he is very aware and quick to follow what is happening.  We practiced with stickers for the ekg and just a toy stick for the echo moving it over his chest, belly and neck somewhat like they do each time.  We reassured him there will be no shots or tubes put into him or as he calls them pinches and wires.  Cam was a very good boy and there were rewards for his bravery and patience.  The results came back with his heart function showing as ‘better’ compared to the last visit.  We don’t need another cardiology follow up for four months so our next appointment is at the end of June.  Cam is finally off Lasix completely so the only medications left are half a baby Aspirin once a day, 2ml Enalipril twice a day for heart function and the Coumadin which a blood thinner or anticoagulant like 3 times stronger then aspirin.  We are currently giving Cam 2.5-3mg tablets a day.  The Coumadin medication is still not leveled according to the weekly blood work.  They want his Coumadin level to be between 1.5-2.5 and we have been just under that for months.

The Coumadin has been a head ache to say the least an arm sore for poor Cam.  They need blood work to test the Coumadin level which we call it a pinch for Cam.  Cam hates it and so does Momma but Cam is truly brave!  The Coumadin level can be altered by diet very easily and especially anything with vitamin k.   At first we expected it to change after the fat free diet restrictions were lifted last year but then we ran into other things with vitamin k in his diet like his pediasure.  The medication is still not leveled so we are having to do miserable weekly blood work trips and I’ve made a clear point not to allow more then 1 daily pediasure.  Cam doesn’t need pediasure but I find it could help his body and heart to have those extra vitamins he’s missing in his picky toddler diet.  Also, Cam loves that stuff it’s like a milk shake and asks for it every single day.  Anyway Cam should be on the Coumadin as long as the fenestration is open in his heart.  The fenestration (window) is a small hole they created in his heart during the Fontan surgery.  A fenestration is placed between the right-sided pulmonary blood flow and the left-sided systemic circuit.  This window is created between the conduit and the outside wall of the atrium, acting as the needed safety valve to guard against too-high lung pressures.  I’m to understand it should naturally close eventually maybe months or longer.  Hopefully there will not be a need for a Cath or intervention to close the fenestration but that’s possible if the Doctors decide it’s necessary.  

We had a heart walk for Cameron in Mandeville thank you all who came out to support us, it means alot to our family.  We took Cam to the Marvel Live show to see all the super heroes.  When the villan Loki came down from the ceiling his mouth dropped like wow he can fly.  It was a special event for the little man and he loved it!  We also took Cam to the Monster Jam show which was great to see that he still enjoys that too.  Mardi Gras was fun especially Endymion where we made out like bandits with Cam in the ladder.  We have been to a few birthday parties of friends and families really enjoying ourselves I’ve added some of those pics too.  

We are past the 3 scheduled HLHS surgeries to have Cam’s heart reworked so he can be alive today to enjoy life.  There will be regular check ups and he will be followed by his cardiologist all his life.  Some have mentioned that the heart can maintain with this new functionality up to adult hood.  Sometimes a heart transplant could be necessary down the road depending on the condition of the heart and the amount of work and stress it can handle through time.  Until then we take evey day as a blessing, thank you for following our journey.  If anything new comes up we will be sure to post.

   

                                         

     

   

                                                                             

November-December 2014

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!!!

Raffle Tickets for Cameron Mogg – November 20th, 2014

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

Follow Up with Pediatric Cardiologist

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…

Home & Follow Up Appointments

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.

Post Fontan Day 23 Discharge Day

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…

Post Fontan Day 21-22

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.