Cully takes on a rare side effect of his drug

  At the time of this video three days ago we were concerned about our sons weight gain and had voiced our worries to the team at Detroit Children's Hospital several times. We were consoled and made to understand that the gains are all part of the ACTH drug which as we knew was a very scary drug but at the same time was also our chance to save Cully. And we had made a decision to try the treatment.  At one point we  took Cully to the local ER last week when we found pockets around his groin which looked like marbles under the skin. We were assured that these were pockets of fluid and they understood this drug would cause fluid retention. Home Cully went.

   Cully kept growing in size and weight by the day. He became unable to move, care to speak, and was more uncomfortable by the hour. His scrotum even grew to the size of a softball and we had enough. Julie and I decided it was time to make the call and get to Children's Hospital regardless of the conversations we had over the phone with them. Regardless of the knowledge of these doctors and researchers, we are the eyes and the parents. While it all seems wrong to think we know better than these doctors, well, sometimes we do.. After all, parenting in my book is held much higher a position that any CEO, government seat or yes, even a doctor. And I'm so glad we made that decision.

  Once at the ER the staff took one look at Cully and made him a priority. He was admitted and during the two hours since we had left home Cully had grown in size and weight. His scrotum now so large he could not sit or move and he was in horrible pain. He was completely inconsolable and began screaming, which would not end for several hours. Eyes were unable to open fully as his face was so swollen, his weight now was 62 pounds. Just 19 days earlier Cully was 36 pounds.

  Nobody had a clear understanding just how bad Cully's health was. The staff speaking with us on the phone thought we were expressing the same concerns most parents have while on the ACTH drug. Yes, the cheeks swell, the weigh increases and they become uncomfortable. We were very concerned but at the same time we felt  that the staff did a good job convincing us that what we were seeing was the norm. It took the hospital to actually see Cully for everyone to understand that what was happening was NOT NORMAL and Cully was in serious danger.

 Cully and mum remain in the hospital. Tests after tests only tell us that Cully's kidneys have failed. The extent of their damage or if the damage can be reversed is still unknown. It seems likely that the ACTH and or the several other drugs he is on has done this. The ACTH can not simply be quit. It is a weening process that we had already began but the neurology teem took no time to make an unheard of reduction in the ACTH straight away. His ween will be a very aggressive one now.

  The first issue at hand now is to rid Cully of all of this fluid trapped in his body. The difficult part is that the tools used to remove fluid removes potassium as well. His potassium has crashed very low again. In as much time as he has been in the hospital Cully has lost 4 pounds. He has a long way to go yet. His scrotum is still painfully large and he can not move or sit. His life at this time is laying in the crib and having one test after another.. Yet he still manages to smile and be his usual gentleman like self. The screams have stopped.

  He is being observed by several teams from many departments and at record visits per day. Cully has become the hospital favorite once again and staff from all floors continue to visit him just to say hello. But we do not have all the answers yet. We have no idea what to expect in regards to his kidneys and all we can do is hope that they can be saved. He has a long road ahead of him and with so much unknown at this point we have little comfort in what the outcome is.

 The wonderful news in all of this is that Cully is still 100% seizure free.  While that may sound like a small accomplishment in comparison to Cully's current situation I can not find the words to express just how incorrect that would be. These seizures that Cully was having, the infantile spasms, were taking Cully from us. There was very little chance that we could stop the seizures but we chose to try these treatments just the same so that he had a chance. The alternative was not good. As the medical definition states... "Infantile Spasms is one of the most catastrophic forms of epilepsy". We are very lucky in this respect. We are winning that battle. We were on the down hill side when all these new problems came about and we need to get past all this so Sawyer can teach Cully to ride bikes.....  We just need to hear the kidneys will come back.