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!
12 comments:
I'm so glad you are home and that Maddie's spirits are starting to lift. The emotional toll of this surgery is something that I worry about for Gracie too. I'm curious, was it a possibility that Maddie would go home on Coumadin instead of aspirin? They have been preparing us for 90 days on Coumadin after surgery.
Hi Jen,
We had talked about Coumadin prior to her Fontan and Dr. Chun had said it was 50/50 what she'd come home on...he mentioned that the debate of asprin vs. coumadin among the doctors there is like talking religion. Everyone has their thoughts and opinions on what is best. He had said we'd wait to make the determination after surgery and from what I gathered, Dr. Chun was the one who made the call. I guess it just depends? We are so relieved not to have to deal with the blood draws, finger sticks, etc. that coumadin brings! One less traumatic thing for her to deal with. Hopefully Gracie can be an asprin candidate too :)
Welcome home Maddie! We are so delighted for you all!
So happy that you are back in the comfort of your home for Maddie to recover! She's already proven how strong she is by coming home so quickly after surgery so I bet you'll have your girl back in no time:) Bless her little heart! So much to go through at 3!!! So happy & thankful that it is behind you & you can all move forward :) God is So good!!!
Yeah Moomers is home! We are so happy to have you all back in Royal. She will continue to get stronger and improve everyday. I know that being home in her own house will help. Kylie is sick again. Has has had a burn down everyday about "go see Maddie today." We will be on house arrest for a few more days. Maybe by July we will be able to get the two girls together. She loves to look at the pictures of Maddie and ask all kinds of two year old questions. So happy for you all! We love you Maddie!
I'm continuing to pray for Maddie. Mason had night terrors for about a week once we came home and he was only 8 months so I can't imagine how this little 3 year old feels. <3
Way to go, Maddie! You look so excited to got home in the little taxi. One of my favorite things about Seattle Children's is the decor. All the animals are so kid friendly.
So glad you had such a smooth recovery and are home now. I'll give you some time before calling.
Thank you, Lord for watching over little Maddie and her family. Continue to heal her little body and her understanding of all that has happened to her.
Angie
PS-Natalie has been asking a lot about seeing pictures of Maddie lately. We discussed the surgery so hopefully we'll get a head start with explaining.
Yeah! Praise the Lord! So happy for you and will continue to pray as you deal with the recovery at home. Good job Maddie!
Bless Maddie. And Praise the Lord for the little things, like Home Sweet Home.
Love,
Michelle
She is going to be a firecracker her whole life--let it be noted I called it!! Amazing little girl, must get it from her parents. Please tell us when house arrest allows for Jace and "Caden Larry" to come over, the Carter man would be flying high over that!
Katie, when I came out with dinner Thursday night and you came in from the ballgame, you "scooped" Maddie up and you were not able to see what I saw. She nuzzled her head into your neck with her face turned outward and the look on her face was just something to behold. She had her eyes closed and a sweet smile of pure contentment on her face. It was just her precious etherial "I'm exactly where I want to be" expression of relief. I'll never forget that look. Don't hesitate to be firm about house arrest ... people will understand. She just needs that bubble for her protection and then she can slowly get back to "normal". We love you all and are just so eternally grateful to God for his benevolence. Much love, barbara
Katie and family-So glad you are home. You keep her in that bubble as long as YOU FEEL is needed. All will understand! Take care. Much love, Sheila and Family
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