Another rough night

Yesterday has been the worst one yet of our recovery period. 

Colston's feeding is still really up and down. He had eaten about 3 ounces at 11 yesterday morning and threw it up about 30 minutes later (right into his poopy diaper that I was changing). We tried to feed him about every hour since then and he just refuses to take the bottle and gags when the milk touches his tongue. They ended up putting him back on IV fluids so he doesn't dehydrate. 

He was exceptionally cranky all day but Justin and I were still able to calm him down and play with him and keep him content for a while. We didn't think he was in pain because the few times that he has been in pain, after vaccines and having a fever, he is inconsolable and won't let you put him down. He was just fussy and I think that the hospital environment where you can't go more than an hour without someone waking you up, poking you or taking your temperature or what have you will make anyone overstimulated and cranky. 

 Going into last night though is when things started to take a turn. 

Around 7 is when Colston started to get even more upset and we couldn't get him to stop crying. That was when we knew something was hurting him. This was hard because the nurses were in shift change and we didn't know who our night nurse was. About 7:40 our night nurse came in and it just happened to be the nurse we had the night before (who would ask to give Colston morphine every time he made so much as a peep.) She asked again, if we wanted to give morphine and I said no. 

You see, I am not anti-morphine or anti-modern medicine. I don't only believe in natural alternatives. Morphine was making Colston sick and the surgeon himself confirmed it. We could have given him Ativan but it is harder to wean babies off of and we didn't want him to have more severe withdrawals.

Justin and I were really in a tough spot. We are trying to get him to eat and the medicine they were offering is medicine that makes him so nauseous he throws up and wont eat for hours and hours. How are we supposed to work on his feeding if he is sick? Of course Justin and I want to do what is best for Colston and we truly felt like if we gave him morphine, we would be taking steps backwards. 

The night doctor finally came in and said he can give Colston tylenol with codeine. I immediately said yes. I asked if we can give Colston a feeding tube so that he is getting nutrition. He said yes and that it is a good idea because he didn't want to give him the tylenol with codeine on an empty stomach. 

I thought, great! Now we have a plan and can move forward.

A couple minutes later the nurse puts the feeding tube in and Colston cried but stopped not long after. The nurse said that she needed to call x-ray up to take a picture to make sure the tube is in the right spot. Okay. 

X-ray shows up about 40 minutes later. Colston has been crying this whole time. Justin and I took turns rocking Colston, having him play with his rattles, and trying everything to make him stop crying. He cried even harder when they took the x-ray and the nurse asked again if she can give morphine. I said no, that would defeat the whole purpose of the last hour and that we will just see the x-ray now that it's done, thinking it would be very soon. 

Almost an hour later and the x-ray is still not here. Colston is screaming uncontrollably at this point. Justin and I were ready to give into the morphine. The doctor came in and asked if he wanted us to give him something to calm down. YES! I practically yelled at him. 

The doctor gave Colston a tiny bit of versed and Colston went from screaming to smiling in about 3 seconds. 

They apologized for it getting to such extremes. I told them if I would have known it was going to take almost 2 hours to get Tylenol then I might have reconsidered the morphine. All the doctor could say was "sorry, I should have been more specific."

As I write this this morning, I had to leave and tend to Colston because we got the go ahead to start feeding him. He ate two ounces and it still acting like he is hungry but we need to keep him upright and make sure he doesn't throw up. We are stopping at two ounces and Dr. Ciccolo (the surgeon) wants us to "play hard to get" and make Colston want to be hungry and want to eat. He just got another dose of tylenol with codeine and should be asleep soon so hopefully when he wakes up he will want to eat again. 

Seeing Colson eat just now and want more make me feel so much better about our decision to not give morphine. He would still be sick and we would be ten steps back. 

I understand a nurses first priority is patient comfort but to be honest, I don't understand why morphine is the first go to. To me, it seems an extreme first choice for an infant. 

In other news, Colston will be having a lung profusion scan tomorrow to see how much blood is being pumped into each lung since they saw the narrowing in the left pulmonary atery. This will tell us if we need to do another heart cath before we leave and place a stent. 

I am praying for a good result from that scan because Dr. Ciccolo said we will probably be set back a lot if he has to go back under anesthesia. 

Sorry about this post getting so long. I'm half updating-half venting. 

Hope everyone has a great day and thanks for checking on Colston :)