All the doctors have been by this morning, and we have the plan for today all lined up. I gave Ryan a bath and he screamed in protest the whole time because I used a baby brush to scrub his incision. He is healing nicely and the stitches are finally falling out. The nurse just hooked him up to the feeding pump, and he is getting 10 cc or two teaspoons of Pedialyte an hour for now. If he tolerates this we will continue to increase every four hours or so until we get his volume up to 70cc/hr. If he is still doing well we can switch him to formula and he will eventually go home on 24 hour feeds. That will be a huge life change for us, especially because he won’t be able to eat anything by mouth which he won’t understand. And the idea of that just breaks our hearts. With his severe developmental delays, there is no way for him to understand all this. He absolutely loves his morning routine of watching cartoons then eating Cheerios and eggs. And after school it’s always cheese chunks and Cheerios. He’s not going to understand why he can’t enjoy those things anymore. For now the general consensus is that his stomach is not working. We are hoping his intestines are working and will know for sure by the end of today or tomorrow. If his intestines do absorb these feeds and he can go home on the feeding pump, there is still hope his stomach might wake up eventually but it is possible he has permanent nerve damage. We simply don’t know yet, and unfortunately this is all a very slow trial and error type of situation. He is getting all his medication through the IV but we are hoping to be able to give them through the j tube eventually so he will have the seizure control he needs. The IV seizure meds aren’t the same so he has had increased seizure activity we have had to control with extra doses of Ativan. I’m not sure how well you’ve all been able to follow along as to what exactly we are dealing with since even the doctors aren’t sure how much permanent nerve damage there is. This has got be confusing to some of you, and I’m sorry.. No one knows if this all happened because of surgery since both hemispheres of his brain were manipulated to get to the corpus callosum which was cut. Thankfully surgery was successful to stop the huge seizures that were dropping him to the ground and knocking him off chairs. But now we have this lovely intestinal problem that very well could be caused by the progressive brain damage from the continual seizures. No one could have possibly predicted this would happen and we certainly don’t blame our wonderful surgeon. I continue to stand by my belief that God is allowing all these difficulties right now for a reason we simply don’t understand. If you want some ways to specifically pray for us, pray for complete healing of Ryan’s intestinal tract, wisdom for the doctors, strength for Travis and me since we don’t have any time together trading back and forth from hospital to home, the older kids who feel the stress and are scared, for direction for Travis regarding future employment, for me as I have to go back to work Wednesday night since I used up my time bank two weeks ago and will be completely exhausted mentally and physically, for our finances in the months to come, and most important of all, that we will honor God in how we handle these difficult circumstances. Thank you for your continued love, support and prayers.
3 thoughts on “starting feeds”
It is hard to wrap my brain around all that is happening to Ryan and in your lives…I cannot imagine the weariness of your family. Please know that we continue to pray for Ryan and you all. I hope to come by Children’s tomorrow.
God’s love surrounds you, His peace guards you and His comfort is always with you.
“Come to me, all you who are weary and burdened, and I will give you rest.” Matt 11:28
love hugs and prayers, Betsy
Continuing to pray. When Steven Jr. had the g/j, we attached a leg bag to the g. Green or yellow “goo” would drain into this bag. About 200 – 300ml every day. I had to refeed half of the goo back into his j to keep his electrolites in balance. His stomach could not digest its own gastric juices. We did give Steven the experience of eating, it just came out of the g into the leg bag. I either put it in the j, or dumped it out. We also gave Steven 2 – 2hour breaks from the feeding pump a day. This made it so he could be on the pump 20 hours a day instead of 24. I hope this is helpful, it is not any fun at all to have a g/j. I pray for complete and total healing for your beautiful little boy!
That’s some good info, Penny! Thanks. I’m sure we’ll continue to have more experiences to share in the future. Goes both ways hon!