Tuesday, November 27, 2012

Possible Christmas surgery

Hello from the hospital still! We were told right away this morning that we would be staying here another night, but now it's looking like we'll be out of here by 6 o clock. Things change by the hour here. We've been told we'll be discharged at 3, but we know better and are planning on truly moving out around 4 or 5.

Landon has been doing really well ever since they decided to stop the Heparin this morning. I don't think it was the Heparin that was keeping him fussy as much as the routine lab work he needed done every 6 hours. As long as he knows you're not here to poke him he will shower you with smiles and his silliness. The nurses love him and have told us that if his cuteness was a good enough reason to keep him admitted then he'd be here for much longer. Dr. Bass ordered this morning to stop the Heparin and double his usual aspirin dose. They wanted to monitor him to see how he does without the Heparin and so far his foot looks and feels much better. They believe that he developed a clot in his thigh after the cath, but because they started treating it so soon it stayed relatively small. His pulses are still faint (rank 1 on their scale) and his dorsalis pedis (pulse on top of foot) is still absent. They are hoping once they take out the IV in his foot they will be able to find it, but because they can find his other pulses (although only with the doppler) and his foot is a good color and no longer super cold, they think that the clot is getting better. Landon will have follow up with his pediatrician on Thurs and they'll look over everything, but right now they are confident that it will resolve on it's own. I was really worried about being discharged today, but the nurse showed me how to find his pulses and what signs to check for so pretty much I can monitor Landon just as closely, if not closer, when we're home.

Since today has been pretty low key and uneventful I figured I should let you guys know what we were told yesterday.

Soon after Landon's heart Cath was finished. Dr. Kochilas and Dr. Bass both came out to talk with us. Right away my heart sank. Dr. Bass told us that the Cath went well and they were able to get good pictures, but they found something that they weren't expecting. The pulmonary artery that is connected to the shunt is too narrow. He told us that they will need to fix this before they take out the shunt and sadly the only way to do so is to open Landon up again. I was DEVASTATED by this news. I truly believed that they would be able to close the shunt and Landon wouldn't need anything else done (except monitoring) for a very long time. He told us that if they are successful in widening this artery Landon will have what is considered a two ventricle repair. They still have concerns with his tricuspid valve, but are hoping that once they fix the pulmonary artery and take out the shunt, his blood will flow normally and that will cause his tricuspid valve to get bigger and also enlarge his right ventricle a little more. So we did hear some good news, but honestly at the time all I heard was that he needs another surgery.

they will call us within the next couple weeks to discuss a surgery date. Ryan has work off the week after Christmas so sadly, if it works with the OR schedule, we will have the surgery then :( Not exactly how I wanted to spend my Christmas break or how Ryan was planning on spending his time off work, but what can ya do?

More good news was that we got the okay to take Landon home for Christmas and he can start coming to church with us. They were both actually REALLY shocked that we never go anywhere with him. They seemed to think that was really extreme and frankly not necessary. We are still discussing with each other if we will risk it and take Landon to MN before Christmas so we can have time with family before his surgery. If we are able to schedule for right after Christmas, we will probably just play it safe and spend December cooped up in our apartment. If Landon were to get sick up to two weeks before the surgery, they will want to reschedule. We are planning on bringing him to church, but again we will pray about it and if we do go we will try to keep him in a hospital mask the whole time. 

The nurse just came in and told us that they are starting to work on our discharge papers. YAY!! We're going to stay at my aunts house tonight and leave early in the morning for home.

Thank you so much for all of your prayers for us during our stay. Even with all the ups and downs and disappointing news we receive sometimes, I never doubt the power of prayer. To know that Landon has an army of prayer warriors fighting for him means more then I could ever say.

Here's some pics from our hospital stay...

This was taken while Landon was on the board in the PACU yesterday. He was obviously not himself :(

Last night when he was finally starting to wake up and be himself :)

Sleeping with his new giraffe that his heart pal Cameron got him.

Watching morning cartoons with papa. Feeling MUCH better today!


Marnie Swedberg said...

Thanks, Natalie. I appreciate all the details, even though I don't understand them all. We are praying for you, Ryan and Landon, that's God's will be done in every decision, detail and directive. Thanks for taking time to write!! Marnie

Laurel Ulwelling said...

So thankful you can go home and will continue praying for you all.