Wednesday we headed to the GI doc in Tacoma and Raygen did pretty awesome! She is down to 27lbs from her 31lbs prior to surgery so she needs to start gaining. I really think the acid re-flux medicine is helping her tummy trouble and overall the doctor said she looked good. Raygen's g-tube looked perfect so we didn't need to change it, which made me very happy because I was so nervous all day thinking I was going to have to switch it out. I know I can. If I can change out her trach a g-tube is nothing, but still it's scary anytime you see a hole in your child, be in her airway or stomach. We will make some changes to her diet. Probably increase her calories till we get some meat on her bones, but other than that no big changes :) We have another check up in December and the doc said I better get ready for a tube change. Good times :)
Today Raygen had her cardiologist appointment and it all went extremely well. The morning started off a little rough when she got sick on our way to her appointment so I had to pull of along side the freeway to help her and clean her up. Once we were back on the road and made it to the hospital she had herself so worked up she was dry heaving in the waiting room. I'm not sure what people were thinking, but she was scared. After the x-ray I was thinking there is no way this appointment is going to go well, but she surprised me. We pretty much did her whole cardio appointment in the waiting room and she did awesome through it. We skipped the weighing in and length check and just let her watch her Ipad till her echo. She cried during her echo, but not too bad and she was easily calmed afterward. Then she had her pulse ox taken and her finger poked to check her warfarin level. Everything looked good. Raygen's x-ray looked the same as last time so adding fat back into her diet caused no changes, thank goodness. Raygen's heart function looked good and her tricuspid valve showed no leaking at all :) Her warfarin level was within range so there are no changes. We are keeping all her meds the same and don't have to go back till December. I am so grateful that we received good news today especially after the rough start of the day. Now that I know her heart and lungs look good we can focus on her tummy issues and hopefully come up with why she continues to have so much trouble keeping her food down. We head to Tacoma next week to see the GI doc. Thank you to everyone who prayed for Raygen today. They worked she rocked this appointment.
Raygen is starting to feel better, finally, but she is still throwing up at least twice a day. I called her GI doc and we are going to see if putting her on some acid reflex medicine will help. She is no where near her pre-surgery weight or handling the total volume of food that she could take. I am barely getting in the bare minimum of what she needs to just maintain. This is so frustrating. I hate to see her get sick and I have no idea of how to make her feel better.
Tomorrow we are off to the Cardio doc. It will be a long day. She will have an X-ray, echo, blood work, and maybe an ekg. It will stressful on her, but I'm hoping for positive results.
love the Joel Osteen quote "God will not give you more then you can handle. If you face a big challenge, you have a big destiny." That says exactly how I feel about Raygen. She has a huge destiny ahead of her. When Raygen gets sick it is such a reminder of how frail she truly is. She is no where near her pre-surgery weight. All I see on her now is bones. She is so tiny that these little colds just could so easily turn into something so much worse for her. She will always be this way unfortunately. I think that is what most people forget. Raygen will always have half a heart. Raygen's doctor once explained it to me in simple terms as to the effect of putting a spare tire on your car. The spare may buy you a few weeks but a spare is not a guaranteed fix. Raygen's heart repairs are her spare. We pray everyday that her fix will give her years and years of a happy, healthy, and normal as can be life, but just like with a spare tire no one can every give you a guarantee. Well and the hard part about this weekend has also been that I have gotten sick. So my poor husband has had to be care giver for both of us. It seems to appear Raygen is shaking off her cold and is tolerating food in small volumes and I have even heard her laughing again, but me on the other hand is having a little harder time. It's so hard because who do you want when you don't feel good? Mom, right? So Miss Raygen scoots down the hall to me in the bedroom all day long wanting to make sure I'm home and then wants to snuggle to play. It's so hard to take a step back from her when I'm sick, but I have to. I don't think I ever truly realized how hard it was to be a parent. Zoie has always been so healthy. I just always assumed that was how it was. I guess having Raygen made me realize just how precious our children and just life is all together. I am just always so thankful for each and everyday I have especially with my children and I honestly can say I don't think I would be if it wasn't for Raygen and her half a heart. It is amazing how watching your child fight for everything, every breath, every heart beat, every ounce of life that we have so easily can really make you realize how truly amazing life is. I believe there is a higher power watching, caring, and loving us because I have seen miracles first hand and especially because I'm a mother to two of them. Raygen if she is feeling better will go to the doctor on Thursday for an X-ray, ekg, blood work, and echo. Please pray everything goes well. She has been a week almost on her normal diet and so far I think she is doing pretty good, but I have no idea what her x-ray will show. Thank you to everyone for all your love, support, and prayers. We are truly blessed to have so many people care for Raygen and take the time to pray for her. God Bless you all.