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.













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…





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.
















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…











Post Fontan Day 17-18 CICU

19 Oct

Friday was slow not much action and we thought Saturday would be slow too seeing as it was the weekend but we got a huge surprise. Early Saturday morning the Doctor came in the door of our room and said cheerfully ‘Let’s just take out all these chest tubes.’ We laughed lightly totally thinking it was a joke because the fluid was still draining a good bit. However, the Doctor returned again with the Nurses caring supplies preparing the room. We were all surprised and Mommy is nervous that we will need new chest tubes if most of the fluid returns. The Doctor mentioned sometimes leaving the chest tubes in will make the drainage continue, and if he needs new tubes they can put different ones in that can allow him better mobility then these big chamber locked chest tubes. Cam was given morphine and they finished the process of removing both remaining chest tubes with us waiting outside the room. Cam was upset and didn’t want them to take his wires but they took the right and center chest tubes out covering his chest with foam tape.

Cam rested most of the afternoon and that evening we tried to get him out the bed for a small walk. It was great to finally get him sitting up and Mommy melted as she finally got to hold him after all this time. Cam did not want to get out the bed and was scared to try to walk. He was really wobbly and his legs are very weak from staying in the bed so long. We made it just outside the room and back before Cam had a meltdown. We returned to the room with a surprise gift for Cameron which he enjoyed very much thank you mystery friend!!! We will continue to hope that the chest fluid does not come back and we stay chest tube free because that means we are closer to getting to go home!!!













Post Fontan Day 15-16 CICU

17 Oct

Yesterday they ordered Cam to have a Picc line put in his right arm. PICC stands for “Peripherally Inserted Central Catheter”. A PICC line is a catheter that is inserted into a vein in your upper arm. The catheter is then advanced and positioned in a large vein in your chest just above the heart. We want to be able to continue the sandostatin medication and that can only be administered through an iv line like the picc line. The sandostatin medication should help slow the chest tube drainage. We remember all to well how long we had chest tubes the last surgery so we want to try and continue this medication with the hope we can go home sooner then later. If we could just get the center chest tube out (the mediastinal) we could possibly get him mobile and out the bed which would be nice.

They use sedation when inserting a picc line. We were late on the operating schedule to go into the OR. We had to wait until noon so we couldn’t let Cam eat or drink before they took him to the OR. It was a hard and exhausting time distracting him and avoiding food requests. He asked so many times for any type of food and he was just the saddest thing. He started asking for ice cream, french fries, mash potato, pizza and then he got desperate asking for one piece of candy corn or one tiny bit of bread. It was awful waiting so long and have him continue to ask for the simplest amount of food.

Anyway they took him to the OR and put in the picc line. They let us go back to the recovery area and wait for him to come out of sedation but he was so extremely out. They sent us back to the CICU with Cam still asleep under sedation and he slept for a few hours under their careful watch. Cam woke up and seemed ok getting right back into the game of where’s my food and let’s watch tv. We fed him everything except the kitchen sink. Any request we ran out to get and all the ice cream he could hold – all still completely fat free of course.

A nice lady from Child Life services started coming out once a day to play with Cam. She comes prepared with a game or kid activity which is so very nice to get him talking and smiling. I wish we could give him real kid visitation instead of all adults, but that is not safe with Cam having such a low immunity right now.

I feel like I lost a day somewhere and can’t keep count of how long we have been here already even with the posts. Most of the time we are busy sitting with Cam playing, feeding and distracting him. We are constantly switching parents to take turns eating or sleeping in the camper. There is not much time in between, but I will continue to try and do my best to post updates here when we get updates. Thank you for the continued support and prayers they are heard and received well here.







Blood Drive Flyer for Baby Mogg aka Cameron

16 Oct