Monday, June 11, 2012

Ready or Not

Let's try this again. Going on day 4 at home. It's taking me a little bit longer to get into the swing of things. I am on an extreme schedule between Michaels feedings and his meds. I'm so excited that this round of medications is giving him a break to be a normal baby. He's so happy and he's eating a lot better by bottle now. I'm not having to tube feed him as much each time.

He was feeling much better and was so interactive at the hospital this time. They had an IV on his hand and there was a piece sticking out that he liked to suck on. I've been noticing him trying to find his thumb at home now and it's just not the same. *sad face*

Friday morning came around and they were getting ready to send us home again. Michael made the nurse and me proud by finishing his whole bottle at 6am. Then he decided he needed to poop. He was trying so hard that he threw up all his milk AND his tube. Quickest reaction I ever had. I hooked the little piece by his nose and pulled the whole thing through. Just thinking about it makes me want to shake. It was so gross!
This is how much he likes that feeding tube.

All of his nurses decided He misses them at home and that's why he needed to keep coming back. I had to admit that I missed them to. They make everything look so easy. I hope I can start to make things look as easy as they do.

I remember when my grandpa was in the hospital. A frail 80 year old man barely walking. He always had enough energy to tease the nurses. Michael definitely follows close to him. I'm sure my grandpa taught him all he knows.

The volunteers at Children's brought some toys in for the kids to play with. Michael got a pretty rad one for his crib. He would barely take his eyes off it. Lights, Sounds, Movement. He was in heaven! It was so much fun watching him get so excited when I'd start it up.

I got some fun pictures of him during his EKG. Dr Octavius doesn't have anything on Michael!

The rest of the family is finally getting the opportunity to meet Michael. And he gets to meet all of his cousins. I am thrilled that he is so close in age to his cousins like Zoey. It is so much fun watching Zoey run around with her cousins. Her aunt and grandma had a fairy tea party this weekend and it was so much fun! I picked out a cute outfit for her to wear over but her fashion won over mine. She went in MY tie dye shirt. It was awesome. And then after I called her awesome she said "No, I'm Superman!" Haha I love this girl!

Michael had a pretty chill time over at grandmas and his heart monitor only went off once while we were there. I had a follow up apt with his EP team at Children's today and the doctor told me he was the one reviewing the strips that had been sent and confirmed that the monitor was catching regular 'Michael' rhythm. They said everything looks and sounds great and he's finally getting the opportunity to relax. At home there is minimal poking and prodding and even when there is it usually is coming from Zoe. I need to give him a bath today since he's starting to smell like Zoey spit from all her kisses. She loves her baby brother so much.

 ~ And he's pretty fond of her to ~

Got rhythm

It's been just over a week since our last post. Michael has been doing really good the last couple days. We were discharged on Tuesday afternoon. We left around 1:00pm and got home around 2:00pm. The ride home was ok. He started fussing so Bryt climbed in back with him. This time we got sent home with a Heart monitor and the feeding tube. The Heart monitor is a little box as big as a cassette tape, it automatically detects when he is having arrhythmia and if he is it records it. It can store up to four recordings, then we have to call from a land line and send them to the doc.  It kind of stinks because it doesn't actually show you what it's recording, all it shows you is whether it has recordings or not. So if he is having arrhythmia, which he often does, we can't tell if it's his 'normal' rhythm or arrhythmia we should be concerned with.

That night we were at home eating dinner with some family. Michael started throwing a really big fit, something I haven't seen him do very often, he is usually a pretty happy guy. He was screaming and crying and we couldn't comfort him. We finally got him calmed down and resting. It wasn't until about 10:00pm we noticed that his heart monitor had some recordings on it. We both felt ok with it and neither of us really freaked out.  When it is sending, it sounds like a fax machine, you can kind of hear the rhythm, but its a really high pitched annoying fax machine sound. Each recording is about two minutes long, and he had three recordings. So we had to listen to this really annoying sound for six minutes. We tried calling from our cell phones but the recording wouldn't go through. It had to be sent from a land line, which we have never had. Bryt felt like she really needed to send it so she drove over to her parents house to use their phone. The recording went through and everything seemed ok. Bryt got home and we started getting the midnight feed ready.
Around 12:30am we got a call from the cardiologist. Michael was having some pretty bad arrhythmia and needed to come back in. We are guessing it was when he was throwing that big fit, we don't know if thats what started the arrhythmia, or if he felt it coming on and didnt like it.  Bryt packed up his stuff and brought him back in. We were both still doing pretty good, this was just a minor set back.

Good Rhythm

The next day was Wednesday, I stayed home from work with Zo and we went to the hospital to see Michael. he was starting to look pale again and slept pretty much the whole day. His rhythm was all over the place and did not look very good. The docs said they were going to toggle his meds around and see if that helped. They told us that they wanted to monitor him for a week or two and make sure nothing else was going to happen. He pretty much slept the entire day and nothing really happened. On Thursday, he slept for most the day and nothing really happened. On friday the docs decided he wasn't really doing much so they were going to send us home. They had changed his meds around and taken us off the digoxin(one of the arrhythmia meds). They wanted to make sure we could handle it if anything sever started to happen so they ordered us an Automated external defibrillator. No big deal, if he starts having arrhythmia we just strap these pads to him and shock the crap out of him... um... No thank you! Neither of us want to shock him, if we need to go home with something like that, why are we going home at all?

Friday afternoon came, he was doing pretty good and we were sent home. Right after we got home someone brought us the defibrillator. We got trained on how to use it, but neither of us are ever planning on touching it. Michael did really good for rest of the day, and then right when we were climbing into bed his heart monitor started going off. It was about 10:00pm again. We had ordered a Land line that morning, but it was not hooked up yet so I drove into work to send the recording. I sent it in and went home. We stayed up waiting to hear from our cardiologist. 20 minutes later it started going off again, so back to work i went. I sent it in and went back home. This was a pretty rough night, I had to keep leaving the house, Michael was not doing too good with the arrhythmia, Zoey was freaking out because she wanted attention. Bryt and I were both exhausted. It was one of those moments where I just wanted to give up and say eff it. I said a prayer which helped calm everything down and then we all went to bed.

Saturday morning came and there were two more recordings on his monitor. I went back to work to send it in. I was starting to lose my patience so I called comcast and had a 'nice' chat with them. They scheduled our land line to be hooked up the next morning at 7:30am. We just had to make it one more day without a phone.

We decided we go spend the day with Bryttney's parents. They have a phone and AC, we could go relax over there and be prepared to send in a recording. We had a pretty good day there and only had to send in one or two recordings. Around 2:00pm Michael had a nice big BM. I know it's weird to get excited about your kid pooping, but we have been giving him suppositories every other day to make him poop. This time he did it all on his own, and it wasn't as hard as it had been the last couple weeks. We stayed at grandpas house until about 11:00pm. Still no recordings at 11 so we decided to go home. Sunday came and still no recordings, we took him to church and he did great.

It's Monday morning now and he still hasn't had any recordings. He hasn't had any arrhythmia since his big poo on Saturday. We are thinking it was the digoxin that was causing some of the issues, it says right on it that it can cause constipation. We have also been warned about anti-arrhythmic medications causing arrhythmia. We have follow up with rhythm specialist today, so maybe she'll have some more insight. Overall he is doing really good, he weighs about 10.5 lbs now