Where do I begin?

So much has happened since last night and I have had about 3 hours of sleep so I hope I can explain it all clearly. First here is the picture I promised of me and my fellow heart moms...

Now for the madness... 

Last night Jacob's was waking up. I noticed he was opening his eyes a lot and seemed to be waking up. I told the night nurse and she gave him three rescues. He was still waking up and I continued to tell her that it was not normal for him and he should be out. I then felt the bed by his IV and it was wet. His IV that he was getting his continuous sedation from was leaking. I had her call in the fellow to look at it and they all thought it was flushing fine so it was good and to just keep an eye on it. I continued to worry about it and asked them to move his sedation meds to his other hand with the IV that was working. At this point he had not been getting his meds for at least an hour. Thank God I found it when I did. They moved the saline drip to the questionable IV and I noticed it was increasingly wet. I insisted that they call the IV Team. IV came and looked at it and unwrapped his IV board and immediately saw that it was leaking and infiltrating his skin, it needed to be removed. They called up another IV specialist to see if they could get another one in since he was down to one working IV. They came up but were unable to get one. After two tries of his eyes open and crying I told her to stop. It broke my heart seeing tears run down his face and him awake with all of this going on. Little did I know it would get worse.

So it was about 2 or 3 in the morning and I was afraid to sleep knowing that had I not found that IV he may have been much worse. I have loved all of his nurses until last nights. She just sat around and didn't seem concerned about anything. I had to insist on getting the fellow or iv team because she just acted like she didn't want to do anything. She had a very quiet personality and was nice but I just didn't trust that she would care for him. I finally gave into the exhaustion and told her that I would like her to spend extra attention to that IV since it was his only one.

I woke up at 7 as the ENT team was taking Jake down for his scope. I walked down with them and said good-bye to Jake and went to the 4th floor waiting room. The scope went by very quickly and we spoke to the ENT doc. Everything went well and his airway looked beautiful. The plan is to extubate tomorrow.

When we got back to the PICU all hell broke loose. I found out that after I went to sleep apparently the other IV went bad and was infultrating. The nurse who is supposed to check it every hour must not have because his arm was hard and cold all the way up to his shoulder. It infultrated into his tissue. To say I was furious was an understatement. His hand looked like a balloon. It was hard as a rock. Thank God they found it when they did or he could have needed surgery or worse. Thankfully his blood flow is ok and his tissue is ok so there is no permenant damage. The swelling has already started to come down.

I asked to speak with the charge nurse and told her how upset I was. I mean if it were just the first one yeah I get it, it happens. But the fact of the matter is that it is supposed to be checked hourly and the first one was only found because I was paying attention and found it. She thought it was fine and was going to leave it. I had to push and insist. Then when I finally go to sleep because it I can't stand any longer and it is her job to take care of my son, this happens. He had to go through a ton of pain and discomfort because of it and could have lost his arm had it been a different drug or gone on longer. It is unexcusable. So IV team came and took pictures and filed a report. The nurse will be spoken to as will the entire floor about safety and this type of thing.

My nurse today who was great and came into a crazy situation luckily kept a close eye on the new IV they put in while in the OR. That one was on the hand that previously infiltrated the night before. She noticed that IV was starting to look puffy and immediately told the fellow who happened to be right there talking to me about how she worried he would lose that one and not have access and thought he should have a Central Line. No sooner did she explain it to me did his last IV blow and they needed to put in an immediate central line. Poor baby was alert, not getting meds and no access.They were able to get his IV to work enough to get the paralytic in. They had to go in his jugular because his groin was occluded from his previous caths.

They got the central line in but the xray showed it was too close to his Glenn and wanted to make sure it did not affect his pulmonary artery because he will have more open heart surgery. They put in a smaller line which was easier since it was already in they just had to re-thread it. Jacob was pissed to say the least. He was shaking from the paralytic wearing off and he had not been getting meds so he was waking up. His heart rate was up to 170 and that was after getting a ton of sedatives. His pressures were also high for a while but he finally calmed down and has been resting for the last few hours.

The good news is that the scope showed a beautiful airway and he can be extubated tomorrow. He has also done very well with weening off of the vent. As of now he is on extubatable settings. He is breathing over the vent and I am very hopeful to a easy extubation tomorrow. Tonight we are going to try and keep his sedation pretty much the same because we don't want to rock the boat and risk him getting upset and having to go up on vent settings. Tomorrow morning they are going to cut down on his meds and then extubate.

We will then work on weening him off of the rest of the meds and start working on speech issues. He will have to learn to eat and use his airway again. If all continues to go well they will do another scope on Monday or Tuesday and if things look good we can talk about coming home. If we do come home we will have to be back in another month for another scope... but can't even think about that right now.

SO.... LONG DAY, STRESSFUL DAY, Jake is finally resting and please join me in praying for a peaceful night and easy extubation tomorrow.

Oh and a HUGE thank you to our roomate. She has been so helpful the past few days especially today while dealing with all of this. Her precious baby girl is thankfully well enough to go home soon and they went to the step down unit today. I must admit when I heard a baby was coming in our room I was nervous but she was so sweet and so good! We will miss you guys. Good luck, so glad you are busting out of here soon!