Well this has been one hell of a week. Logan did great on the plane, slept the entire time. We arrived in Boston at 7pm and took Logan to the ER just like we were told to do. We were under the impression that it was going to be just checking his pulse ox and respiratory rate and based on that we would either get admitted or be able to go back to the hotel with him. Wow, was that not what happened.
To be honest, no one had a clue what was going on. We were in the ER for over 4 hours before anyone from cardiology even came down to talk with us. His idea was that we get all the pre-cath blood work done while we are in the ER. That seems logical although it was now 12AM and I wanted Logan to actually be able to sleep before his big procedure. We told them we wanted to just take him back to the hotel and check in early in the morning. Then someone comes in and says that we can’t leave because his Potassium is at a critically high level and that if we take him back to the hotel he might arrest and die. Ugh….
This was a ridiculous statement to make to us for a number of reasons. 1. being that this is a kid that is laying here smiling and happy. 2. His kidney function has always been perfect. 3. His heart function is good 4. His EKG was normal 5. He wasn’t dehydrated 6. there was absolutely no reason to believe that this number wasn’t a lab error. We told them we would take our chances and that we were going back to the hotel. At 3AM I told them that this was it, this was my bottom line, that Logan was having a major procedure in the morning and that I was not going to keep him up any longer. We got him dressed to leave and someone comes running down and says ‘wait we have a room for you now.’ So we were brought up to, good ole’ 8 EAST. I know there are many of you reading this right now that are very familiar with 8 EAST. It was very surreal being back.
The next morning Logan had his cath. We were very nervous because in the back of my head I kept thinking, ‘what if they do find scar tissue in the individual pulmonary veins” if they do this is a scenario that would very likely lead to the double lung and heart transplant. We met with the Dr. doing the cath before hand and he said he was very confident in his ability to get Logan fixed up, unless the scar tissue was in the individual pulmonary veins. We got updates every hour on how the cath was going. It was long. I believe it was 4-5 hours long. The doc (Dr. Locke) said this was about as hard of a cath as you can do but that he was very fast.
It turned out Logan handled the Cath wonderfully. He did better than EVERYONE expected. They had told us to expect him to be intubated overnight and in the ICU over night. Not the case, Logan was extubated right away and after 2 hours in the recovery room we headed back on over to 8 EAST. Dr. Lock came and talked with us. He is a very nice man, he walked right in and said ‘Hey, did you hear? NO bad news!” He said this was very manageable, that Logan would need a couple more caths and an even earlier fontan, but that things looked good. We were soooo relieved. Everyone said that most likely Logan would be able to go home tomorrow. That night Logan had a fever of 101.5 and was very fussy. They said that was par for the course because during the cath he also had over 20 metal coils put in him and it is standard to have an inflammatory response to that. Other than that though he really did great. And check out his oxygen saturation after the cath….
That middle number is his oxygen sats. He came in at 66-69 and after the cath his 80-84. We couldn’t be happier. We got all the discharge paper and got Logan dressed when a nurse came in and said that Dr. Del Nido said he would like to speak with us before we leave. We just thought he wanted to stop in and say HI. Oh no, this was not the case at all.
Dr. Del Nido told us that although the cath went well it didn’t open up the confluence nearly as well as he would have liked. He said that the diameter was increased from 4.5 to 6 but he wants it 10 cm or bigger. The cath brought his Glenn pressures down from 22 to 16 but that 16 is still high. He said he would like to go ahead and surgically make this confluence bigger to bring the pressures down even further. He said in the long run it will give us more time to hold off on the fontan and we will have less problems with fontan. He is very worried about all the collaterals that Logan has. He thinks with the pressures this high they are just going to come back. That this cath result won’t last very long. And if we do a wait and see then will have to bring Logan back after more collaterals have grown, pressures are back up, and have to redo the cath all over again before surgery. He thinks it would be best to do the repair the right way and to do it now when Logan is in really good shape.
I am not going to lie. I felt kicked in the stomach. I also believe my whole body went immediately into shock. We were literally about to walk out the door to go home. Talk about a paradigm switch. I had a long conversation with Dr. Patel on the phone about whether to ‘wait and see’ or to just get this corrected the right way, right now, and he agreed with Dr. Del Nido that we should get it done now. He thinks that if Dr. Del Nido can confidently and fairly easily get Logan’s pressures a lot lower than we should do it. And he didn’t think bringing Logan home and then bringing him back to have to go thru all this again was the right thing to do.
Dr. Del Nido thinks that it will be only 4-5 days in the ICU and another 4-5 on the floor. I take this with a HUGE grain of salt because nothing ever goes that way with Logan, but I do agree that this surgery is going to be nothing like the last one. The last one involved multiple repairs and significantly changing the hemodynamic (blood flow) this is just putting a patch in the confluence and widening it up. Never the less it is Open Heart Surgery and I am very scared.
Surgery for his TAPVR re-repair is Monday at 7:30AM. He is first case and this surgery shouldn’t take as long as the last one.
It is also Feb. 14th Valentine’s Day. I guess there could’t be a better day for heart surgery.