The team decided that Maxen would need at least 40 ml/hr to meet his daily min caloric intake. Anything he took by mouth would be extra  and would be an added bonus. They decided to start upping it by 2 ml every 12 hrs so by Saturday morning he would be at the 40. He has handle the jumping of the cont feeds well. But when I walked in Saturday, he had just puked 3 times in his bed and one had a little blood in it. I started to help his nurse get him cleaned up and sheets changed and he puked again. Just moving him around and picking him up to hold him can make him puke. It just sucks cause I don’t  want him laying in the bed all day but if play with him, sit him up, or hold him there is the possibility. Drs decided to give him a break for an hour then slowly get it back to 38 mls by the end of the day to make sure he could handle it. He didnt do too well with it so they upped the concentration/calorie level of his formula and hoping he can handle less volume. He hasn’t really taken anything by mouth. They assure me this is normal and since he loves to self soothe with his fingers and will occasionally suck on the paci, developmental he shouldn’t get too behind. We also had to move rooms because it’s been a month as of Monday when we came back and it’s policy to deep clean the rooms after a month to help stop infections. A month…plus the week we were here for everything else. And 2-3 weeks once transplant happens. Riley hospital has become our second home…

Dr. Rao is on service all week and weekend so we are excited to have a familiar face and someone who knows Maxen’s history. Just to explain how things work…there is a staff/attending dr on service (working/doing rounds/leading GI team) M-F and typically a different one on weekends. There is also a fellow that does the same thing but sometimes that may work multiple weeks/weekends. So we have seen many different faces on the team. There there are residents, typically 4-5, who take turns being the point person for Max. So we see them a lot since they are explain things and looking at things as they come up. Then we have the sweet med students who look like they are 16 and come in throughout the day to make sure we are doing ok and to see if we have any questions. So lots of people and lots of moving parts haha. Took me at least 3 weeks to figure out who everyone was and their schedule and what they did! Hence why we are glad to  have Dr rao on service this week and see him every day.

I think things are finally hitting Jon and I. We have been brave and strong for Max and Bexley as much as we can. We both know that we can’t keep holding it much longer but too scared to let ourselves just go there cause we know we don’t have the time, energy, and the recovery time to do that. Probably not healthy but it is what it is. We both have had our mini meltdowns here and there over anything. Like Jon’s coworkers did yard work…major yard work for us this weekend. We cried after we saw it because it has been put on the back burner since Maxen was born so to see their hard work and love was overwhelming. I start to cry every time Max starts gagging and throwing up. Nobody like vomiting so it just makes it really hard on me. And waiting is making us exhausted. My brain doesn’t shut off. Sometimes I don’t sleep well. When I’m at the hospital, I’m worried about doing everything I can for him and helping the team out by being there. When I’m not there, I just feel guilty for leaving my kid someplace even though it’s the best place for him. I just don’t win these days.

It’s been a roller coaster of emotions the last 24 hrs. We got the the first donor match Monday and they told us in the afternoon. The rest of the day was waiting to hear back and Max getting pre op workup. That evening surgeon came to tell us that Max wasn’t going to get the liver because it wasn’t that great and an adult would be better suited to have it and handle it.  Tough to hear but we don’t want him getting a just ok liver. So there is hope that it will be soon since he was the first one matched to this one.