It hasn’t been an easy transition coming home. Last night we were all here but emotions were high all around. One kid started crying when they saw the feeding pump. Another was crying and saying “I’m afraid Ryan is going to die” and “I just want the old Ryan back”. The other was grossed out by the whole idea of feeding through the tube. I couldn’t relax so I spent the evening reorganizing all of Ryan’s meds and supplies. We went from five medications to nine. We have to give five of them in the j tube (small intestine), one of them in the bag with the formula, one through the g tube (stomach) then ninety minutes later give the last two through the g tube. And we do this routine three times a day. This is a whole new world for us, and we still haven’t figured it all out yet. Last night Travis slept on the floor next to Ryan’s bed to make sure everything went OK with the feeding pump. It alarmed once during the night so now we need to go buy a baby monitor so we can sleep in our bed and hear the pump during the night that way. Travis and I still have yet to sleep all night in the same bed since January 28th. Then this morning after all the kids got to school, Ryan started dry heaving and he had five episodes in an hour but would sleep in between the retching. Thankfully that stopped but it was tough to see that when we just got home because of course it wasn’t happening in the hospital. I called our pediatrician and we have some Zofran and are trying this new medication schedule to see if it helps. He is taking Erythromycin which is an antibiotic but for Ryan it is supposed to try to stimulate gastric motility to see if we can make his stomach work again. It is known to cause stomach irritation and throwing up so if this continues we’ll probably have to take him off of it. But of course in the hospital the Erythromycin never made him retch like this. Ugh.
Otherwise, Travis is in the office today helping file and get all their records in order. His case management files are all closed and he is done with his clients. He’s simply helping out where he can through next week but today will be home around noon. We have hardly talked about the future because we haven’t had any time to discuss things that important so I can’t tell you what his future plans look like. Time will tell.
I work this weekend and went to work Wednesday too while Travis was at Children’s with Ryan. It was nice to see my work family and finally do something focused on everyone else. The kids are all having sleepovers tonight with friends and I’m thankful we have been able to keep their lives as normal as possible. It’s not fair to them to disrupt time with their friends because of everything their brother is going through. They have such a hard time dealing with all this and I don’t think anyone truly understands the stress they feel. It’s hard for Travis and me to handle because we feel so bad for them.
I talked to Travis’s cousin this morning for a long time whose son was born with kidney failure and has had all kinds of GI trouble. He is a miracle and is waiting for a transplant. She is a great encouragement helping me navigate through these changes and had lots of tips and insight the doctors never tell you. It’s the perfect example of why special needs parents need have such a wealth of knowledge! Please pray for them too as God brings them to mind.
We’ve been very blessed with some people who have stuck by us through thick and thin and continue to be amazed at how God meets our needs on a daily basis. Proverbs 30:8 says so well what seems to define our lives these days: “give me neither poverty nor riches, but give me only my daily bread”. God does not give us more or less than what we need, just enough to sustain us every day on this journey. This new place we find ourselves in is quite the adjustment and we have no idea if Ryan’s stomach will ever work again. Of course we pray it does, but if not, we will accept whatever God gives us. Ryan brings so much joy to our lives and even during those times like last night when I locked myself in the bathroom and sobbed for a good 20 minutes, I know we are not alone. I have nothing without hope in Christ and I have to tell myself every day to keep believing in His goodness. This is not an easy transition but like every other battle we’ve faced, we’ll keep our heads held high and keep pressing on.