Hi everyone! Its been forever since I updated last!! We have been able to stay out of the hospital which is so wonderful! Ty has been doing well. His last echo (tues 1/13) showed improvement in the pericardial effusion--getting rid of TPN (IV nutrition ) has been amazing as this is what his doctors think contributed significantly to the fluid. He was getting a liter of fluid every night! The steroids that he has been taking to help with inflammation of his lungs and heart have really stimulated his appetite but he will take his last dose of those tomorrow so hopefully he will just continue eating without them. Ty did need to spend a couple extra hours in the clinic getting a magnesium IV bolus on Wed. He was having muscle spasms/cramping in his legs which I honestly thought was related to over exertion but it turns out his magnesium was critically low--kind of scary as this affects all muscle and could have caused heart arrhythmias, etc. We are counting our blessings on this one! He has now been taking oral magnesium 3 times a day and doing ok with it. We continue to have issues with his kidneys which is likely caused by his anti rejection medication as well as all the other preventative meds he has to be on. We are no where near the point of dialysis but his numbers dont look great. The doctors have done renal (kidney) dosing of his meds to try to decrease the damage and we will see what tomorrow brings with his labs and go from there. Otherwise Ty continues to work hard in therapy. He has been doing 2-3 hours per week with the therapist and then working on his homework while at the Ronald. We NEED to regain some leg strength!!! He was able to ride a 3 wheel bike and race with his favorite therapist Erin. I should have recorded it! There were lots of giggles as they raced in the hallway--I had to play traffic cop and thankfully no pedestrians were injured ! We continue to take things one day at a time but are very excited to start thinking about the possibility of going home!!!! We know there are still many potential problems that could occur---1 bad virus could cause the transplant to fail or at least significantly lengthen our stay. We have met families here who are well over 100 and even 150 days after transplant. So, every good day we have out of the hospital is counted as a blessing. Over the years we have met so many kids and their families. We have gotten very close to many and together we celebrate the good times and hold each other up through the hard times. It is the same way here! We have met some truly amazing families!!! To hear their stories really puts life into perspective and no matter how difficult things may be or have been for you, there is always someone who has been through worse or are currently going through worse. Life is incredible and precious! Thank you SO much for checking in!!! We are very happy to be able to keep reporting good news!!!!! We hope and pray it continues! We hope you are enjoying this beautiful weather!!! It is sunny and in the upper 30s here. Its supposed to be even warmer tomorrow!!! Have a wonderful day! Thank you for all your continued thoughts and prayers!!! We appreciate it very much!
Posted on: Mon, 19 Jan 2015 02:41:42 +0000
Trending Topics
Recently Viewed Topics
© 2015