it feels like we can finally take a deep breath from the magnitude of it all. Although I'm still in shock of how quickly the Fontan was for us (I had prepared for at least two weeks of being in Seattle with her.) 11 days from home was so much better. This surgery has weighed so heavy on my mind for the past year(s) that I can't believe we're on this side of it now. It does feel as if a huge weight has been lifted even though we have a sore, tired, cranky little girl to contend with. It's great being home and recovery is waaaaay better here than in the hospital!
But the recovery from this surgery is far from over...she's on restrictions from crowds (no church, no groups of people, no public places like movie theatres, no playdates, etc.) as well as some activity restrictions like climbing, riding a bike, no lifting heavy objects, and overexerting herself, so we're back in a bubble again for a few more weeks. We have to try to protect her from getting hurt or sick basically. Her sternal precautions include things like no lifting her up under her arms, no raising her arms over her head, for 6 weeks. We're getting the "scoop" method down. Maddie came home on just Lasix (2x day), Baby Asprin as her anticoagulant, Bisacodyl (for constipation) and Oxycodone & Tylenol for pain. She's been managing fine without the Oxycodone, so we're just sticking to chewable Tylenol tablets. On Monday we'll follow-up with her Pediatrician with a chest x-ray and on Friday we'll head back over the pass for her post-op cardiology appointment with Dr. Chun. We're working on getting her appetite back and gaining back the weight she lost.
We were told at discharge that we may not see our girl again for 2-3 months. Dr. McMullan advised that she will probably regress a little after surgery. The major "regression" was having a bottle at the hospital- she hasn't taken a bottle since I weaned her at 15 months old- but since she was dehydrated and refusing to drink anything, I gave in to this on our bad day. I think I even suggested it since she likes to pretend she's a baby and I was desperate, so I will take full-credit for this one. Luckily, she hasn't had one since early Tuesday morning and thankfully, she hasn't asked for one. She's also back in a diaper 24/7. We'll try potty training again when she's ready. The emotional toll it took on her was probably as difficult or more so than the surgery itself. She had no control over anything, was constantly "bugged" by nurses & docs and she had no say in any of it. At 3, she can't verbalize what she just went through and how she feels both physically and emotionally. I've never seen her be this frustrated and angry before, both with herself and with all of us. It's just going to take some time. When we do get smiles from her, we see our Maddie and does it ever melt our hearts. Just over the past couple of days, I've seen improvement. It's just going to take time and being home is the best place for her. I appreciate the doctors recognizing this too...as long as the child is stable and making some progress, they don't hesitate to discharge them home.
As I wheeled Maddie out of the hospital Wednesday afternoon, I couldn't help but cry. It was bittersweet. We are so very grateful for Seattle Children's; the doctors, nurses and all of the Cardiac staff there...our daughter is here and thriving because of them. Our outcome could be so different, and I'm eternally grateful to them, especially to this man...her surgeon, Dr. McMullan. He is an outstanding surgeon as well as an amazing person. We love him and thank God that Dr. McMullan was given the talent and ability to mend broken hearts.
waiting patiently to get discharged on Wednesday...she would NOT get back in her bed and insisted on clothes and shoes. Thankfully Derek, Carly & Kate brought over some new sparkly flip-flops for her! They also helped load all of the bags from the room and it was a big job. Thanks guys!
No more staring at this!!! The nurses use these white boards in each patients room and erase the goals as the child passes them.
Good-bye Seattle Children's Hospital!
But the recovery from this surgery is far from over...she's on restrictions from crowds (no church, no groups of people, no public places like movie theatres, no playdates, etc.) as well as some activity restrictions like climbing, riding a bike, no lifting heavy objects, and overexerting herself, so we're back in a bubble again for a few more weeks. We have to try to protect her from getting hurt or sick basically. Her sternal precautions include things like no lifting her up under her arms, no raising her arms over her head, for 6 weeks. We're getting the "scoop" method down. Maddie came home on just Lasix (2x day), Baby Asprin as her anticoagulant, Bisacodyl (for constipation) and Oxycodone & Tylenol for pain. She's been managing fine without the Oxycodone, so we're just sticking to chewable Tylenol tablets. On Monday we'll follow-up with her Pediatrician with a chest x-ray and on Friday we'll head back over the pass for her post-op cardiology appointment with Dr. Chun. We're working on getting her appetite back and gaining back the weight she lost.
We were told at discharge that we may not see our girl again for 2-3 months. Dr. McMullan advised that she will probably regress a little after surgery. The major "regression" was having a bottle at the hospital- she hasn't taken a bottle since I weaned her at 15 months old- but since she was dehydrated and refusing to drink anything, I gave in to this on our bad day. I think I even suggested it since she likes to pretend she's a baby and I was desperate, so I will take full-credit for this one. Luckily, she hasn't had one since early Tuesday morning and thankfully, she hasn't asked for one. She's also back in a diaper 24/7. We'll try potty training again when she's ready. The emotional toll it took on her was probably as difficult or more so than the surgery itself. She had no control over anything, was constantly "bugged" by nurses & docs and she had no say in any of it. At 3, she can't verbalize what she just went through and how she feels both physically and emotionally. I've never seen her be this frustrated and angry before, both with herself and with all of us. It's just going to take some time. When we do get smiles from her, we see our Maddie and does it ever melt our hearts. Just over the past couple of days, I've seen improvement. It's just going to take time and being home is the best place for her. I appreciate the doctors recognizing this too...as long as the child is stable and making some progress, they don't hesitate to discharge them home.
As I wheeled Maddie out of the hospital Wednesday afternoon, I couldn't help but cry. It was bittersweet. We are so very grateful for Seattle Children's; the doctors, nurses and all of the Cardiac staff there...our daughter is here and thriving because of them. Our outcome could be so different, and I'm eternally grateful to them, especially to this man...her surgeon, Dr. McMullan. He is an outstanding surgeon as well as an amazing person. We love him and thank God that Dr. McMullan was given the talent and ability to mend broken hearts.
waiting patiently to get discharged on Wednesday...she would NOT get back in her bed and insisted on clothes and shoes. Thankfully Derek, Carly & Kate brought over some new sparkly flip-flops for her! They also helped load all of the bags from the room and it was a big job. Thanks guys!
No more staring at this!!! The nurses use these white boards in each patients room and erase the goals as the child passes them.
Good-bye Seattle Children's Hospital!
We'll be having a WHITE Christmas after being dumped on this weekend. The boys are loving the snow, especially being pulled behind the 4-wheeler, even in the freezing temperatures (low teens!)
Blood Drive:Part 2 was Friday, with another great turnout! This was organized by the Red Cross for the people who weren't able to donate back in October. Another 29 units of blood were donated (Bry & I included). Our little town is amazing and our thanks go out to all that volunteered and donated.
