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.