Heart arrhythmia's

I think I could start every post I write with the words "what a day". It just feels like every day is too much. Today was no different. What a day.

Rocky and I both went to the hospital during the day today because things haven't been great lately. As soon as I got in the room I noticed that Madden was having heart arrhythmia's again. I pointed it out to the nurse and apparently they had just started. The nurse called one of the doctors to have a look at the rhythm on the monitor. Apparently he was having PVC's again - which is premature ventricular contractions, basically an extra beat. This can happen when your potassium and/or magnesium are too high. His levels were high but were coming actually coming down to the normal range so a bit odd that they would just be starting. He is also on a new blood pressure medication - dopamine - and I guess this can cause arrhythmia's. So this medication was stopped and Madden was restarted on norepi. This is when Madden started to have SVT's. These are the ones I hate. They make your heart race - Madden's heart starts beating about 250 beats per minute. If he doens't come out of it on his own they have to shock his heart. So far today he has been able to self convert out of them. His heart rate is bouncing all over the place today though from 140 to 177 back to 135 up to 188. I hate it.

Also I guess late last night they were concerned with the delivery of the meds through the pic line because Madden was miserable and he was on a high dose of sedation and his blood pressure was all over the place even though he was on a high dose of blood pressure meds. They decided to switch the meds into his new arterial line and things started to get better. So today they did an xray at the same time as they infused dye into his pic line to see what was going on. Apparently anything that goes into that line hits a clot in the vein and comes out a hole in his neck (this hole is from a previous line). So today they removed the pic line. The poor kid has more lines and tubes in him then you can imagine and wasn't getting his pain medication. The one thing I have continued to say is "please don't let him feel as bad as he looks"...but he did. Poor kid.

Today both Rocky and I had to sign procedure consent forms. They want to do another two surgeries on Madden in the next week. Neither heart related. The first one is a broncoscopy. They would put a camera down his nose into airways to see if his airways are floppy or damaged from having the breathing tube down there for so long. They would also look for scar tissue or a build up of anything that they could potentially remove.

The second surgery they want to do is placing a premanent pd cathdar for dialysis. They don't actually think it will be permanent but it would be in for at least a few weeks and the one he has in now is not functioning all that well and leaks out all the time. Not super effective. This would mean another surgery when they are ready to remove the pd cath as well.

From a heart perspective they are thinking of potentially doing another cardiac cath to see if his outflow tracts are narrowed at all. If they are then they would balloon them to open them up a little. Another surgery.

He also isn't peeing now at all.

It's just never ending.

Positives...he is doing well keeping his blood pressure stable with less bp support. He is draining well with  the pd. They were able to bring down his ventilator settings a little. He is as cute as ever.

They are now starting a medication that they are hoping will help with the arrhythmis'a through the night. I hope so too.

Madden I know this is hard but I promise you there is so much more to life than this...we just have to get through this. I promise to be with you every step of the way. I know you can do this. I love you as big as the sky small prince. xox.