Late as it may be, I owe an update on Ryan. As you all know, he was hospitalized two weeks ago to start the Ketogenic Diet which is like the Atkins diet on steriods for lack of a better description. I am certain most people do not want to hear the details of ketosis. Two Mondays ago we made our way to UNMC and proceeded to sit in admissions for 2 1/2 hours waiting for Ryan’s room to be ready. We asked two or three times what was taking so long and were told the room was not ready. It was definitely a lesson in patience only to find out once we got to his room that the staff had been waiting all morning for us to show up since they had three empty rooms on the unit. We spent three nights and four days on the pediatric unit tracking Ryan’s blood sugar with pokes every four hours. We checked his urine for ketones four times a day. We held Ryan down for daily lab draws as the phlebotomists poked and jabbed and missed his veins. He still has numerous bruises and scratches to show the difficulty he endured to obtain blood. The doctor told us weeks before that Ryan would be taken off the seizure medication which caused his broken leg in March. Once he came to round on admission day, he changed his tune and said Ryan would not be taken off the drug. I was less than pleased to put it nicely. Then on Wednesday, the doctor changed his mind again and Ryan was taken off the drug cold turkey. We did not see an increase in seizures initially, but Ryan is struggling with a big increase in the amount of seizures he is enduring every day. We keep hoping and praying this will be the day the diet kicks in and the seizures begin to subside, but so far that has not happened. We were discharged on Thursday feeling just a bit overwhelmed at the measuring and monitoring we have to do, but once we were home, and I tearfully made it through that first night of figuring out this new normal, his diet has been an easy transition and his body has adjusted to ketosis very well.
Only 3 1/2 hours after getting home from the hospital as I went to give Ryan his nightly medications, the J tube port broke. I jimmy rigged it with Sidney’s hair ties to keep it from leaking everywhere. This is the part of the feeding tube we give his daily feedings through which goes into his small intestine. Because of the high fat content of the new formula, Ryan’s stomach (the G tube port) does not tolerate continued or high volume feeds as we discovered in the hospital. I stayed home from work on Friday knowing we were headed back to Omaha for surgery to replace his feeding tube. After several calls with the GI doctor, we headed for surgery at Children’s. By the time we got home Friday evening, Ryan had a brand new feeding tube, and Travis and I were emotionally and mentally exhausted.
We are both grateful for the easy transition to the diet, and we have found a routine for checking his urine for ketones and how to measure his formula, water and protein powder. Now if we can just get these seizures to calm down, I think we will both feel like these changes have been worth it. This diet is extremely expensive so I hope it works. All I know, as I have said numerous times in the past, is Travis and I have done everything we can to give Ryan the best chance at a seizure free, pain free life. He is happy, he is loved, he is spoiled, and he is here with us for a reason. And that, I can live with.
The older kids are all well. Brad is happy and settled in his third week of college, and the middles are doing good too. Trevor and his best friend just got hired today by the pumpkin patch south of Lincoln to be zombies who get paint balls shot at them. I am certain they will have fun. Travis and I are simply enjoying this season with the kids.
Much love to you all!