Tuesday Update- Day 14

Things continue to slowly improve each day and we only have a few things left to check off before discharge! Teag still has her right chest tube which continues to drain just enough that the Dr.'s aren't quite comfortable taking it out yet. As soon as that happens, we'll just be watching her oxygen saturations and working on breathing/walking to get them into the upper 80s at a minimum. They told us that they'd like to see numbers that high or higher before we leave. We were hoping for numbers more in the 90s now that she's post op, but they're reassuring us that they will slowly climb over the next few months as she heals more and more... Her tube output was too high yesterday to take the tube out today, so we're hopeful for lower numbers in the next day or two so we can get rid of that thing! It continues to cause her a lot of pain because of where it's placed and how much it moves under her skin... Everyone is hoping that she'll take her first deep breath and get some relief when its gone!

Saturday night after my last update, the nurse removed more of Teag's bandages including the large bandage over her left chest tube site. The tube was removed last wed. so they wanted to get the big sticker off to look at her stitches. I knew there was an issue when the gauze didn't remove easily and we discovered that when her stitches were tied over the chest tube incision opening, that they got caught up in the gauze and knotted there instead of in her skin. So instead of a knot and small scar, she literally has a hole in her chest. Trent and I were really concerned because it had been like that for 5 days under there and the edges have already started to heal, so there's no chance of re-stitching it closed. We were worried about bacteria getting in there, or air leaking into her chest and causing a much bigger problem. The cardiac surgeon on call that night was busy doing a heart transplant but came to check on Teag around 11pm that night. He reassured us that this happens sometimes and that it will just leave a bigger scar, but won't hurt her in any way. He put a steri strip over the opening to try and pull it closed a bit more and we'll just have to watch it to see how it heals.

Sunday Teag had a hard morning, but felt great by the afternoon in time for a few visitors. We spent the afternoon trading in our movies in the playroom, eating 'non hospital' food and visiting until she was ready for an evening nap. We got news that afternoon about an opening at the Ronald McDonald House across the street, so Trent went over to check in and set the room up. Teag likes me to sleep here at the hospital with her so Trent will sleep at the RMD house and then I'll nap during the day when he gets back. We'll also stay there for 4 or 5 days once we're discharged so we can go back and forth to the hospital for post op appointments and xrays. We can't wait to have Teag and the boys all together with us there when we get out of here. There's so much for the kids to do there and we'll have our own hotel like room and private bathroom, which is so nice! My heart hurts not tucking the boys in now for the last 15 nights... They're in good hands with family, but I can't WAIT to have us all together again!

Monday brought another hard morning (5am xrays and labs, then an upset tummy and side pain) for Teag but she had afternoon visits from Gavin, Bode, Nana, Auntie and her cousins which brightened her day. We were able to all go to the playroom and Teag felt so good for an hour or two while they were here! It was fun to see them 'play' a bit together in the outside area- Trent wheeled Teag around in a wagon with all of her tubes/lines while the boys ran around with her. She came back to her room and took a 3 hour nap after that! We've had a few new roommates the last few days too which has made bed time/lights out interesting. Sometimes the lights don't go out on the other side of the curtain (like last night) until 1am which is hard for our sleepy girl..

Today (Tuesday) we all slept off and on until around 10am after our late night and early morning xrays/pain meds. We got Teag feeling good and up to play around 1 and then Grandma stopped by for a visit in the afternoon. Teag's pain seems a bit more manageable today and her oxygen levels are holding steady right around 78/80 without support which is a big improvement form the last few weeks! We still have a ways to go, but this is progress! Later this afternoon we were able to take Teag up to the 8th floor rooftop garden for a few minutes of sunshine which was so nice! It was a beautiful day here in Seattle! We did some walking tonight and Teag was able to eat a bit more, even some salad which made me happy. She hasn't eaten much fresh food in the last few weeks so this was also a big step! Tonight we're going to try and get a bit of sleep and hope our new roommate ( a 4 year old who's also post Fontan) is a good sleeper too! We'll know in the morning if Teag gets to have her chest tube removed. It depends on her output 6am-6am. Prayers that this happens would be great, and also prayers for the procedure which is the most painful part of this whole recovery. Teag has quite a bit of anxiety knowing it's coming, but will feel so much better when its out and over!

Sleepy girl...

 Here's a pic of the chest tube site that didn't stitch. You can see the middle one above her belly button was stitched closed properly but the one pictured on the right is just a hole with the loose stitch above it...

 Being silly at midnight the other night. It's hard to sleep when your roommate has all the lights on!

 Opening a super fun package from her CC classmates! So fun!

 Rooftop garden today. She could see Mt. Rainier and also the Space Needle!

 Wheeling her back to the room- sunshine makes her happy!