I thought I'd update everyone on how our time at Children's went.
First of all, Benjamin was supposed to have a heart catheter & a G-tube done this week but the G-tube didn't work out. There was a misunderstanding in the communication there and it will be done at a later date.
The heart catheter was done on Tuesday. He got transferred to Children's at 7:30 in the morning and went straight to Day Surgery. There they prepped him for surgery and spoke to us about the heart catheter. They didn't realize that he dropped so quickly in his saturations and changed the wall oxygen unit to a better one. He dropped to about 45% (supposed to be above 90%) and scared me quite bad. He started turning blue and I got annoyed with the nurses for changing it when the first one was working fine. They got it all hooked back up and his saturations went up. Well, everywhere I went after that we stressed that he drops REALLY quickly.
He then went to the cath lab and had his heart catheter done. Three hours later the doctor came and talked to us. For those of you who don't really know much about this procedure I'll try to explain. Benjamin was ventilated for this procedure and put under a general anesthetic. They then threaded a catheter into his vein & artery up to his heart. They checked the pressures in the lungs. The pressures are supposed to be 1/3 of the systemic pressure but his showed at 1/2 the systemic pressure. This is better than we had been told previously. Previously they thought it was at about 2/3 of the systemic pressure. The doctor then increased the oxygen through ventilation to check if this would help the pressures. It didn't. He then gave Benjamin a couple drugs to see if that would help the pressures but that didn't help either. He told us that it would just take a year or so until his pressures were normal again and that he'd just outgrow it.
Benjamin developed a blood clot in his leg from the heart catheterization. We had to stay an extra night while they tried different drugs. The blood clot has not gone away and they are hoping it will go away within a week. Next week he has to go back to Children's for a follow-up so they can check out his leg. Hopefully it will be gone by then.
Now he is back in Abbotsford hospital and we are back home. I'm looking forward to sleeping in my own bed tonight again. And I got to see Kyle again (he was at Grandma & Grandpa's house while we were gone). Grandma & Grandpa didn't really want to give him back but I said they had to:):)