Tuesday, April 10, 2012

Hospital Buddies

Today was a pretty long day, we have been pretty lucky to have such a little trooper. For having surgery just three days ago he is doing really well. They did end up putting him back on some of his cardiac medicine and he has a feeding tube now, but Bryttney was able to breast feed him for the first time since surgery. We are also able bond with him and hold him whenever we want, he is such a peaceful little guy, and pretty lazy so far. Me and him took a long nap together today.  His voice is slowly starting to come back and he is starting to cry a bit more. I think that is a good sign because it will open that right lung a little more. The nurse practitioner said it is still a bit dark on that side.
Bryttney was having a pretty rough time today, she really misses Zoey. But we don't want to risk getting Michael sick so we are trying to wait it out while Zoey gets better. But it is getting really hard not to run home and squeeze our little girl. She has been such a trooper through this last week, we both feel so guilty not seeing her this whole time. We know she needs her mommy and daddy, but with the progress Michael is making he needs us too.  We are thinking about splitting up and one of us going to stay with Zo, and one of us staying here. The problem with that is then one person is left alone in the hospital with their thoughts wandering about and getting into mischief. Being alone in this type of situation is probably very hard psychologically. I am so glad we have each other to lean on through this. I can't even imagine how hard it is for single parents. The support from all our friends and family is so appreciated, we are so blessed to have such a wonderful community behind us. We are also starting to make friends all over the hospital.
Actually one of my friends from work has been here for 10 weeks and was a huge help to Bryt today. She and her husband have been through a lot the last couple months and she is very helpful to talk to. It is amazing how people open up and are so full of love. You get to talking to them and instantly love them. This hospital is truly amazing, but there are so many people going through such hard things here. After being here for a whole week things slowly stop freaking you out. You hear people's situations which are hard to listen to, but instead of being scared for them, you just care about them and have faith in the doctors here. We all kind of bond together and try to hold each other up.

We got new neighbors yesterday, they are from grand junction and have had a pretty long journey so far. Their baby has had two surgeries already and still needs two more. They have been trying to help us with resources and support groups.  They are both young and have already taken on so much. We were both amazed at how much they know and how calm they are. We are both very glad we met them, they helped calm us down and we had a much better night after chatting with them.  I also got to nerd out for a few hours and give some Photoshop lessons. Score!

Breaking up the Crud?

Aw! Worst treatment ever! They are 'breaking up the secretions in his chest'... They are using this cuppy thing to pat him all over his chest and back. Michael hates it and its sending off all kinds of alarms. Supposedly it is good for them and some kids like it. Agh! I'm freaking out and can't help but watch, I want to go punch this guy! Bryt keeps telling me not to watch, but he just keeps patting him all over, I cant help but think about his little chest and how sore it is... and... it's over now... it only lasted like 30 seconds.. but It was hard to watch and was like the longest 30 seconds ever. There have been so many 'nails on a chalkboard' moments here. Half the stuff you see or hear is just hard to take in. Michael is sleeping peacefully now, but that was a rough minute we just had together. They took away a few more of his medicine pumps, his little area looks awesome now! Only one pump left and all it is doing is pushing through some fluid to keep the line open. It doesn't even have any medicine in it!

Post Op - Day 3

Michael has been cruising along with his recovery, he has been so blessed and so strong. He is back on  a feeding tube today, he is just not eating enough. I think he is supposed to be drinking like 90ml per feeding and he is only taking about 20ml. He also seems to just be a bit lazy when it comes to feeding, he just expects it to go down his throat by itself.  We haven't tried breast feeding yet because his respiration is still a bit fast. The doctor said he is probably breathing fast because his throat is soar from the breathing tubes. She also said one of the reasons he might not be eating is because of the arch they repaired. Before the repair, the blood going to all the organs was restricted by a kink in the arch. So now that it's fixed the belly is getting more blood and needs to get used to it. This video is actually of him 'eating' the night before surgery. So you can see he wasn't really into it then either.
His respiration is fluctuating quite a bit and freaking us both out a little, his alarms are starting to ding again... man I hate alarms. I am happy to have the surgery part over with, but now we have to see how he reacts to each thing they take him off. This morning he was taken off his brain and kidney tissue monitors, and he was also taken off the last of his cardiac medicines. That could be causing the faster respiration, but we kind of just have to see how he stabilizes.
It's kind of crazy how all this works, I like to think of the surgeons as mechanics, and the heart as their engine. Things are supposed to pump and flow a certain way and they just try to make it work like it was originally designed by our almighty engineer. But then there is this whole other element, of the individual growth and unique structure.  I just want some definite answers, but it does not like work like that. The answer to every question is "We'll just have to see how he does.." We understand they don't know how he will grow, but it is hard to always be in that waiting stage.
We just got through sitting in on his rounds for this morning, He does still have a slight heart murmur,but the doctors say that we shouldn't worry about that until he is bigger. They said he will most likely need another surgery in the future, but they will have to wait and see how he grows. We are really hoping it will just correct itself as he grows. He is off all of his cardiac medicine, but after rounds and talking to the cardiologist they are probably going to put him back on some if it after his echo today.  They are also concerned about his vocal cords and the fact that he is not eating as much as he should. He is probably going to be examined by an ENT later to see if he has some vocal cord damage, I guess that is the main thing that could be affecting his swallowing. We get to go over his post-op echo today or tomorrow and hopefully get a little more info about the future.
This is getting easier to deal with as the days go by, but when you have to backtrack even a little bit, it gets a little freaky again, and then there are these stinkin alarms!