No one said this would be easy

Last night at 4 a.m. Landon woke up in a lot of pain.  They gave him some vicodin and unfortunately he basically skipped a feeding because of the discomfort.  His heart rate has remained low which is expected but still concerning.

Times like this can be sobering reality checks of how much pain he is in.  I just want to bear all his pain, but I know I can't.  I know this is an integral part of his life story, but doesn't mean I have to like going through this.  We just have to trust God has control of this.  Just wish he was old enough to cognitively have a relationship with Christ to lean on. 

Allison and I have been a terrific team of support.  The smiles have helped.  Thankfully he has eaten much better following this surgery as compared to the last.  There are few things more frustrating than knowing your child wants to eat but can't for a myriad of reasons.

He continues to do well but the pain management can be difficult to gauge since he has limited ways of telling us until it hits him hard.

Gary

Time to eat

Landon is doing really well so far.  It seems as though they are weening him off everything that was sustaining his high saturations.  He is receiving 1 liter of oxygen now, which is about a 1/3 of what he was receiving immediately following the surgery.

He ate well last night.  A total of 345 ml over 4 feeds.  Not quite his normal and the milk he was eating was not fortified, but still doing great.  He only has enough energy right now to eat and then he mostly just falls asleep. 

At the 4:30 a.m. feed he was just chilling before it.  Just looking around and didn't seem to be in much pain.  Good to see traces of our normal boy coming back so soon.  Today he is scheduled to get the rest of the tubes (drainage tubing) and catheter out.  I think most of the IVs will remain, but incredible progress considering last time.

Thanks for your continued support.  Great to see him acting like himself already.

Gary

Surgery Update

We have gotten a couple of surgery updates so far from the nurse. Surgery is going well- Landon went under the anesthesia just fine. They had a little bit of trouble getting a line in for anesthesia but that happened on both the BT Shunt and the Cath. Baby blood vessels are TINY!

The surgeon has taken out the BT Shunt and Landon is on the heart/lung machine (cardiopulmonary bypass) while they finish the Glenn. We were told yesterday that it is actually a relatively quick procedure (the 3 hour surgery time includes a lot of before and after the glen). We were told they overshot the pulmonary artery a little bit and had to put in a goretex patch (that's right, the stuff in your boots that makes them waterproof) . This is not a huge surprise to us, we knew there would be some patching and that synthetic material was a possibility. The goretex patch is something he should be able to keep the rest of his life.

So all in all, nothing "exciting" but we like that! Give me a boring NON Grey's Anatomy or House surgery any day!! Things are going well and it sounds like pretty routine for the most part. Thanks for your prayers! We'll try to post again once he's out of surgery or if there is anything significant before then.

Pre-Op Finished

We just finished the Pre-Op and are done for the day.  Everything went well and all of our questions were answered.  Landon did great, though the blood drawing portion was less than enjoyable.  Tomorrow we arrive at the hospital for check-in at 6:30 a.m. MT and surgery is scheduled for 8:00 a.m. MT.

Thanks for the prayers.  All we do now is enjoy him the rest of day and count the hours and minutes.

Gary