It's been awhile since I've posted but we have good news! We're home!! A few days after my last post, Teag was doing well enough to have her last chest tube removed. She was really anxious so we tried to give her a bit of Ativan and a small dose of Oxy before they started but neither seemed to do much for her so the nurse practitioner decided to just go ahead and do it. We had to hold Teag's arms down while they carefully removed her bandages and cut the tube and stitches loose. Teag looked up at us with her big brown eyes and begged us to stop which had us both crying. They counted to 3 and then removed it as quick as possible because there's really no easy or painless way to do it. Once that was done and stitches were tied, they still had to remove her old stitches from her central chest tube site. Teag convinced the nurses that she would be calm and really wanted to take out her own stitches. They handed her tweezers, snipped the knot and this crazy girl pulled out her own stitches while the nurses watched. It was amazing and helped Teag feel in control and much calmer!
Once all of that was over, we were all relieved and Teag just hugged us and kept saying, "Guys, my last tube is out!!" We had another good cry feeling so relieved and the nurses all cheered for her as they cleaned up. About 10 minutes after the nurses left and everything was done, the Ativan definitely started working. Teag was giggling and SO silly. It was a nice bit of entertainment for Trent and I seeing her so relaxed and happy for a bit! An hour after the tube came out, she had another x-ray to make sure no air leaked in during the removal and to check out her fluid levels. The x-ray tech was cracking up at Teag's silliness and said she was the funniest patient he'd had all day!
That night, we tried taking away the oxygen that she'd been so dependent on and the nurse lowered her alarm parameters to 75. Throughout the night she only dropped to 75 and set the alarms off twice and continued to improve as the night went on. Having the tube out definitely took away much of her pain especially on her left side and I woke a few times to find her sleeping on her side which I'm sure felt so good after laying on her back for weeks!
We spent one more day after that in the hospital working on her eating, letting her oxygen levels improve and walking as much as possible. By Saturday she was looking well enough to let us take her across the street to the Ronald McDonald House to continue healing until her big post op appointment this last Tuesday. We packed up out hospital room (felt a bit like moving!) and made it across the street in time to wheel her around a bit and tuck in around 11pm for bed. Since we had a few beds in our room, we got to have the boys come and stay with us the next day and for the rest of the time which was good for all of us! I loved getting to tuck in all the kids and love on the boys after so long apart. They loved being with us too and playing/exploring at the RMDH- there's a lot for the kids to do! We spent a few days there just playing with the kids, keeping Teag cozy and taking walks outside as much as possible. We bought Teag a stroller at the Goodwill near the hospital since she's still getting her strength back and that's helped a bunch!
On Tuesday we headed back to the hospital for Teag's post op check and we were all nervous, hoping it would go well so we could go home! She had x-rays first and then we headed into the heart center to see how everything looked. Thankfully her x-ray was beautiful and there was no talk of adding more meds or re-admitting her. Her oxygen levels were around 87 which everyone was happy with and the Dr.'s keep telling us they're expecting them to go up a few more points over the next few months/years. Her heart sounded great and her incision is healing nicely- the only thing left to do was remove her other two chest tube site stitches. Teag didn't want any pain meds, so we put some numbing cream on the sites to help her a bit. She was really scared to have anyone touch her during the whole appt. after everything she's gone through the last few weeks, but we assured her that this would be the LAST thing before we could finally go home! The nurse practitioner removed her two sets of stitches pretty easily/quickly and Teag was sitting up and smiling in no time!
They all agreed that we could make the long drive back over the mountains home and we talked about her next check up. We were supposed to head back tomorrow (Monday the 10th) for another follow up but the nurses thought that seemed silly after seeing her look so good. We'll head back over in a few weeks once she's had the chance to heal a bit more and rest at home. We picked up the boys from the sibling playroom at the hospital and headed out to eat Italian food and celebrate! It was too late in the day to pack our whole room, clean and do chores at the RMDH and make the drive home so we enjoyed a fun evening as a family instead! Wednesday morning we starting the long process of packing and cleaning our room. The Ronald McDonald House is a huge blessing and made it possible to have our whole family together for the last few days which we're so thankful for! The cost is very reasonable and in turn you are responsible for all the cleaning, linens and chores which we were happy to do. We finished with everything, grabbed a bit to eat and left in the early afternoon.
We made it home around 6pm that night and just turning up our street made us all so happy! Our sweet neighbors had hung and sign and streamers up for Teag, and also brought us dinner and some groceries so we wouldn't have to shop for food the first few days. So nice!! We spent the first day and a half at home just resting, catching up on bills/house stuff and doing laundry/cleaning. The kids are loving playing with all their toys and just relaxing in their own beds! Nana is coming today to help for a few days so I can catch up on some things and get the house back in order. It's still hard to believe that we're back HOME and on the other side of this huge surgery for Teag! We've been waiting to be 'post-fontan' for 7 1/2 years- since we were thrown into the 'heart world' the day after Teag was born. It's been this big wall in front of everything we've imagined for Teag regarding her future, and the last big surgery for (hopefully) many, many years!
Thank you to all of you for praying, messaging me (sorry if I haven't responded, but I've read each one!) and for sending gifts, cards, balloons, etc... Teag's spirits were lifted (and ours too!) seeing how many people were praying for her and thinking of her over the last few weeks!
Teag is still on 'sternal precautions' for 3 more weeks (6-7 weeks total minus what she's spent in the hospital). This means no using her arms for any pushing, pulling or lifting, and also no swimming, jumping or running. We have lots of fun crafts and low key activities to keep us busy in the meantime, and we're all excited to get our school room back in order and receive our curriculum for another fun year of homeschooling! We're planning a fun trip to Great Wolf Lodge with the kids as soon as Teag is fully recovered and feeling 100% so the kids are looking forward to that too! We'll be able to venture out a bit more after this next week and can't wait to get back to church and play with friends!
The boys outside the RMDH:
Transplant Day 8
19 hours ago