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October 15, 2005
Madalyn's PC appointment went really well, if you don't count the screaming with the EKG. You would think PC appointments would be fine - they never do anything that hurts, but oh my goodness - the STICKIES!! :o) I swear Madalyn traumatizes every EKG tech and all the other poor kids there that have to listen to her scream. You would think we were killing her. She starts in and everyone comes running! They gave her a doll for being so "good" (yeah, right) and she said later, "What's her name?" I said, "Why don't you call her Screaming Mimi since that's what you did to get her." So, we now have a doll named Screaming Mimi.Dr. Teske was waiting in the room for us when we were done with the EKG. He just laughs at Madalyn. The short version is she looks fine and she sounds fine. The results of the Holter monitor were fine. Madalyn is still in junctional rhythm while she sleeps or doing a sedentary activity (but her lowest heart rate was 46), but then her sinus node kicks in and she jumps back up to sinus rhythm when she is screaming or very active (heart rate around 115). So, her EKG showed her in sinus rhythm because of all the screaming. :o)
Dr. Teske says that most kids post-Fontan are not in sinus rhythm, so he wasn't really expecting her to be. He said this was not a problem until she starts to become symptomatic which could be years and then we'll talk a pacemaker. So, we don't have to go back for 6 months! Yay!
Thank you for all of your prayers for our friends. I'm sure Zane will be going home soon. And thank you for your prayers for us. Madalyn is doing amazingly well, and to God we give the glory!
Love to you all,
BarbaraAugust 29, 2005
Today was Maddy's first day of preschool! She was so excited. She attends the public school preschool at the same school where I teach. It is an all day program Monday through Thursday, so I'm sure she's going to be extra tired at the end of this week! She loved going to school with Olivia and me and she had a great day!I don't think I ever imagined this day actually coming. Olivia also went to school here, but with Madalyn, it just seemed like she had so much to overcome that starting school wasn't even in my mind. But here it is. She has overcome so much and I am so proud of her. You would never know she only has half a heart!
But this day is bittersweet. Maddy has a dear friend that should be at home playing and waving bye-bye to her big sister as she got on the bus for her first day of kindergarten, and she's not. Our dear friend Lauren is once again in the hospital, this time in PICU on the ventilator. I'm posting this to plead for your prayers for Lauren at this time.
So, please, lift Lauren up in prayer and ask for her complete and total healing, that she would be home again soon and finally able to recover. Thank you all for your love and support of us and our friends.
Barbara
August 2, 2005
Maddy's appointment with Dr. Teske went well. Sats were great and x-ray showed NO fluid!! Yay! We were able to stop the Aldactone, but kept the Lasix for a while longer. I'm happy with that! I think just Lasix and baby aspirin for meds post-Fontan are pretty darn great! :o) We go back the first of October, and we're going to do a Holter monitor sometime the week prior to that. That should be a fun experience (insert sarcasm here)! The Holter is because Maddy's rhythm is slow. Instead of her heart being in sinus rhythm, she is in junctional rhythm. Not real sure why exactly, but nobody seems too concerned, so guess we won't be either! :o)We did get the OK for King's Island tomorrow - with no restrictions! Just make sure to keep her hydrated as it is supposed to be mid-90's - uggh! Dr. Teske also said the pool was fine, too! So, yay, we can swim in the pool at the motel!
Barbara
August 01, 2005
Maddy continues to do amazingly well! She has a PC appointment with Dr. Teske tomorrow, so hopefully it reflects what "I've" been seeing! I'll post a quick update tomorrow to let everyone know how that goes.
July 19, 2005
Maddy went to see our beloved Dr. Sullivan today. She is Maddy's regular doctor and was on vacation right after Maddy got out of the hospital, so hadn't seen her. I wanted Dr. Sullivan just to check her over and also to show off how pink she is!We put her on the pulse ox machine and, are you ready for this?? Maddy's sats were 97-100!!! Yes, I did say 100!! We actually saw this magic number that I didn't think we would ever see. She is actually satting the same as a "normal" person!! It was amazing! Dr. Sullivan couldn't believe how good she looks.
Thank you so much for remembering Maddy, her friends, and all the heart kids in your prayers. Prayer is powerful!
Love,
BarbaraJuly 13, 2005
Thank you all for your love and support! Maddy continues to do great and we are just enjoying every day as it comes and trying not to focus on the "what comes next" part. It's hard, as it seems we have been living that way for 3 years, but we're trying very hard not to do that. Love to you all!
Barbara
June 25, 2005
WE ARE HOME!!! ALL of us this time! Maddy went for a chest x-ray early this morning and everything looked great! We had to wait for the attending doctor. Maddy kept saying, "I want to go home," so when Dr. Chan (attending) came onto the floor I told her she needed to go ask him. So, the little girl who hasn't talked to ANYONE that is a doctor for the past 2 1/2 weeks walked out in the hallway to go tell Dr. Chan she wanted to go home. She walked back to the room and said, "Which one is he?" I pointed him out to her and she walked right up to him and said, "Can I go home?" It was so precious, and of course he couldn't resist her so they started rounds with her and told us, "Yes! Maddy you can go home!"So, praises to God we are home!! Almost 3 weeks ago we left here not knowing what the future would hold, but trusting in God that He would work through the doctors to bring her back home whole and healthy to us. Our prayers along with all of yours were definitely heard and answered!
So, now we get to enjoy the rest of our summer, hopefully! We still have to go back next week for a follow-up and chest x-ray, so we ask for your continued prayers that the fluid does not begin to re-accumulate in her chest! Also, continued prayers for our friends Phelicity and Tucker as they continue to deal with their effusions and that they would be home soon. And prayers for our precious friend Lauren who is fighting off the staph infection after her Fontan. These families are all so precious to us.
Thank you and God bless you all!
Barbara
June 23
Maddy's drainage from her chest tube has slowed considerably and her chest x-ray today looked great. Sooo - they clamped the chest tube! That's the first step in us going home. They will do another x-ray tomorrow and see how that looks and if it remains clear, they will see if they can draw any fluid from the chest tube, and if that is an acceptable amount then tomorrow or the next day they may pull the chest tube. After another 24 hours and another chest x-ray, if everything stays clear we will be on our way home!!June13, 2005
...For the not so good (but to be expected) news.... her chest tube isn't draining enough (whether it is because the tube had a clot in it or not I do not know) and so she will have to have her chest tube for a few more days. I don't think the effusion is any bigger -- it just isn't any smaller. ...
I want to thank all of you for your prayers and would ask that you keep the prayers going out. We need this chest tube out real soon before infection sets in.
June 07, 2005 at 01:28 PM EDT
Princess Maddy is out of surgery and the surgery went "perfectly" according to her surgeon and the flow looks great. The surgeon did the extra cardiac Fontan (his modified version).Barbara was unable to get to a computer and called me to update Maddy's site. Todd and Barbara have been unable to see her yet and I am sure they are anxious to see their little champ.
I have to tell all of you being there today in the surgery waiting room surrounded by the love of Maddy's family and friends was truly amazing. Maddy is so incredibly blessed and I can see 100% why she because she is such an amazing wonderful strong brave princess.
I think I speak for everyone when I say-We love you Charles Family and cannot wait to get wonderful updates soon.
Stephanie Miller
Proud Friend to Barbara and Todd
Proud Mom to Lauren (so lucky to be Maddy's special little heart friend)June 06, 2005
Well, we're back from pre-op testing. Madalyn kept saying the whole way there, "But I don't want to get my boo-boo heart fixed, I don't want to go to the hospital." Tell me how hard it is to drag her into that place when WE don't want to be there either!Maddy was very brave! We saw lots of different people in lab coats and scrubs - not her favorite uniforms, but she did good. Dr. Teske came up to see us. We stopped by the ICU, just briefly, I didn't want her seeing anyone hooked up to lots of tubes, etc.
She laid so still for her chest x-ray, I was so proud of her! Of course, the last stop on our way out the door was the lab for bloodwork. I warned them that she was a hard stick, but I just always seem to get that condescending look from them. Soooo, three techs later we finally got the blood they needed! I hate that! And Maddy was very upset over that, of course! But a trip to Applebee's for lunch and a stop at Meijer's for a toy made her feel lots better! She chose a doll with a doctor's kit at Meijers and the whole way home we "fixed" the doll's boo-boo heart.
When we left the hospital, Madalyn thought that she was done, that was it and her boo-boo heart was fixed. Unfortunately I had to break the news to her that we had to go back tomorrow. She keeps asking me what will happen and talks about going to sleep in the "dark room." On a good note, we talked to the anesthesiologist about the Versed before surgery. That was the biggest traumatic part of her cath, because she had to take that medicine without a drink to wash it down. And we got the "okay" to give her a small drink with her medicine, so that should make it much better for Maddy AND mommy and daddy.
Yesterday, Madalyn received special prayer at church. The pastor put his hand on her head, and I think she was a little confused by the phrasing asking Jesus to "reach down and touch her." When we were done she asked, "Mommy, is Jesus on my head?" Everyone laughed and we agreed that yes, Jesus is on her head, and in her heart. We also know He will be with her and us every minute tomorrow.
I am so touched by the outpouring of prayers we are receiving! I thank you all so much. Please continue to pray tomorrow that they are able to quickly make it through the scar tissue to start the surgery; that she goes on and off by-pass with no problems; and that her pain is managed efficiently so she is not in discomfort. Continued prayers for NO effusions, that the drainage from her chest is kept to a minimum and we can pull those chest tubes quickly.
And please pray for me that I can stay strong in front of Madalyn and not show her my fear, tension or sadness so as to cause the same in her.
Thank you all so much! I will update when I can. I can't wait to post from home again, praying it will be soon!
I forgot to add, Madalyn is scheduled for first case tomorrow. We have to be there at 6:00 and surgery is scheduled to start at 7:30.
All our love,
Barbara, Todd, Olivia and MadalynMay 28, 20905
Today, my mom related a story that my aunt told her about Maddy. Grandma Barb (my aunt) watches Maddy on Thursdays. They were playing "tea party" in Maddy's room when she went over to her toys and brought Grandma Barb the pretend tool set. Maddy told her, "Fix my boo-boo heart." So, Grandma Barb pretended to use the tools to fix her heart. She said, "There, your boo-boo heart is all fixed." Maddy looked up at her and asked, "Does it hurt when they fix my boo-boo heart?" My aunt told her that it would, a little, but then she would be all better.Of course, my mom started getting teary-eyed telling me this story. I've talked with Maddy how Max and Zane are in the hospital getting their boo-boo hearts fixed and told her that we will be going back to get hers fixed, too. We don't talk about it much, as it is still too far away to get her worried about, but just the few times I've mentioned it must have stayed with her, and she's been thinking about it.
It just makes me so sad to watch her running around and feeling so good, and know in just a little over a week she won't be doing that for a while. I think the hardest part about all of this is taking her in while she is doing so well, giving her to the doctors and knowing the next time I see her she will be such a sick little girl. It goes against everything in a parent to do that.
Well, I'm not going to focus on that now! We're going to have a wonderful holiday weekend, as I hope the rest of you do, too! We're off to Build-a-Bear as that is a pre-surgery tradition, although Maddy doesn't remember the last time as she was only 5 months old! This will be her first trip to Build-a-Bear since then and I know she's going to love it! I'll post pictures later!
Barbara, Todd and the Girls!
May 15, 2005 - full post on Madalyn Story and Carepage
Three years ago today our "true" journey into the world of CHD's began. I say "true" journey because we had Olivia who had a small ASD, so we had been the pediatric cardiologist, echo, EKG route, but had been told to take her home, let her grow and not worry about it - so that's what we did. So, please indulge my multi-part update as I reminisce about where we have been as we get ready to jump back in this world again in three weeks. .....
.....As long as I live I will never forget the emotional trauma of that first day, and the days afterwards. We were just so lucky to take our baby back home again 22 days after that initial emergency room visit. She survived her first surgery, a blood clot forming in her right ventricle, and recovered well enough to go home with us. Four months later we would go through all of this again as she had her second surgery, the Glenn, on October 7. Fortunately that was only a five day stay.And now, here we are, preparing to enter this hospital world again on June 7. The past three years have gone so quickly, I can’t believe it is time to do this again, I’m just looking forward to getting it over with and having my baby home again. We’ve learned a lot in the past three years, too. We’ve learned that we didn’t really like that first cardiologist. All he kept wanting to tell us were the things Madalyn would “never” do. As in, “She’ll never play sports, she’ll never be able to have children, she’ll never function as ‘normal’ children do.” We switched cardiologists and found out that you “never say never” to these heart kids! They will continually surprise you. Madalyn does and will function like a ‘normal’ child. She may never need a heart transplant. Those are not “guarantees” for our heart kids, and who knows what the future of medical technology will bring to them.
Most of all we have learned from and learned to love the incredible network of people that Madalyn has brought into our life. From the surgeons, doctors, nurses and staff at Columbus Children’s Hospital, the parents of other heart children we know “in real life” and “on the net,” the members of our church and how hey have rallied around us, and the love and support of strangers. Mostly the love and support of our wonderful family. It is an amazing journey, and one we are going to continue for a long, long time!
Thanks for putting up with my meanderings down memory lane! Lots of love, hugs and prayers to all of you!
Barbara
May 12, 2005 a
Well, we had our meeting with Dr. Galantowicz this morning.... He was very optimistic about Madalyn and said that she is a great candidate for the Fontan. Her venous and lung pressures are great! He won't know which version of the Fontan (extra cardiac or lateral tunnel) he will do until he gets in there. He did state that she might be able to do without a fenestration, or at the most a very small one - so more than likely she will have sats in the 90's! We're very excited about that!He said we will probably be in the hospital around 1 week, and effusions are not uncommon with the Fontan because of the new circulation. She probably won't be on any more medicine (after her post-op medicine) than she is on now - which means just baby aspirin! But, that could change, hopefully not!
Maddy also had her three year check-up with Dr. Sullivan today and looks great! She is 39 inches tall and weighs 29 pounds - so she is in the 90th percentile for height and the 50th percentile for weight -tall and skinny like her sister!
So, we're all set now! We go in on Monday, June 6 for pre-admission testing starting at 9:00 a.m. Then we go back on Tuesday, June 7, and have to be there at 6:00 a.m. She is scheduled for first case to begin at 7:30. Dr. Galantowicz said the surgery could last anywhere from 3 to 6 hours, depending on how much scar tissue there is and how long it takes to actually get in there.
Just wanted to share our news!
Barbara, Todd, Olivia and Madalyn
May 06, 2005
Happy, Happy Birthday Madalyn! We've been celebrating it for a week, but today is the actual day! My princess turned 3 years old! I don't even have to explain to the rest of you parents how quickly these three years have gone by.My wonderful friend, Stephanie, a fellow heart mom, made a beautiful DVD of pictures set to music for us to show at Madalyn's birthday party. From the beginning I saw us cradling our baby in the delivery room, and then pictures of family and friends holding her at home. All without us knowing she had a heart defect. She was with us for nine days before our lives took this incredible turn.
We don't have any "sick" pictures from her surgery in the hospital. I didn't think I would ever want to remember those days. I regret in a small way that we don't have pictures to show her when she is older, but not too much. I probably will take some from the Fontan, though, so years from now we can look back on how far she has come!
Then watching as the pictures unfold, her sitting in her high chair, learning how to walk, with her big sister, Olivia. It is just amazing to me to try and remember back to when she was so small!
I can remember after her Glenn at 5 months old thinking, "Wow, we don't have to do this for another 2 years!! That is a long time!" Well, it has been over 2 1/2 years and it wasn't as long as I thought it would be. Tomorrow will be exactly one month until her surgery.
I dread with all my heart putting her through this, but I am at peace with the need to do it. She becomes more symptomatic each week. I can see her body getting weaker and I am looking forward to seeing my baby pink!
I was asked last week if I could go back and do this again, knowing what I know, would I make the same choices. The answer is absolutely. I hate that Maddy has to go through this, and I would take away her pain and uncertainty in a heartbeat and give her a whole heart. But if this is the only way I can have my Maddy, then by all means I want my girl.
I heard on the radio this morning the song, "The Dance" and it reminded me so much of what I've been thinking lately. "I could've missed the pain, but I would've had to miss the dance."
And even with the pain and the uncertainty that this "dance" holds, it also holds surprise and delight. Without this turn that life brought us would my husband and I be walking as close with the Lord as we are now? We weren't before. As the wonderful Amy Frank says, these babies with half a heart teach us to love the Lord with our whole heart.
Without this part of our life, I would be missing so many heart friends and family that we have met along this journey - in real life and through the internet. I have blessings abundant flowing into my life each day.
So, I choose to give thanks to God and trust in His strength to see us through this. And I know we will be celebrating Maddy's fourth birthday next year to be followed by many more!
Heart hugs to you all!
Barbara, Todd, Olivia and MadalynApril 22, 2005
Wow! It's been a month since I posted an update here. Time sure goes fast! Madalyn fully recovered from her cath experience although it took her a few days to bounce back to her full spunky self.So, now we're just in "wait mode." We meet with Maddy's new surgeon, Dr. Galantawicz on Thursday, May 12. After that we'll have a little more information about Maddy's Fontan and what to expect as we can directly ask him questions.
Maddy's Fontan is still on for June 7. It's hard to believe it is only about 1 1/2 months away. I try not to think about it too much.
Thank you for your continued prayers and support.
Love,
Todd, Barbara, Olivia and Madalyn
March 22, 2005
Thank you all so much for your prayers and messages of encouragement. ...Maddy is a little trooper and did great!!Dr. Teske (her cardiologist) came up to check on us. We showed him the pictures from the cath that Dr. Cheatham gave us because he hadn't had a chance to talk to him yet. He was as happy with the pictures as we were, especially those of her pulmonary arteries. They had to augment them where they attached her superior vena cava (this is what they do during her second stage surgery) and if we were expecting any problems, this is where we probably would have seen them. But everything looked great!
....So, our first hurdle is over. Now we are scheduling Maddy's surgery for the first week in June. ...
God bless,
Barbara
March 21, 2005 at 03:46 PM EST
She's done! She's in recovery right now! Dr. Cheatham came in and said that she did great. They did coil off 5 collaterals, and everything looks great. All of her pressures are great and everything looks good for the Fontan. So, all good news today!Barbara
March 21, 2005 at 02:45 PM EST
Then the nurse came back out at 2:30 and said everything was going really well. Her pulmonary arteries looked really good, so they didn't need to do any ballooning or anything, they had really good flow even across the augmentation she had done with the Glenn. She said there were a couple of collaterals that Dr. Cheatham was probably going to coil off, but that she may be done as soon as 3:30.So, wonderful news!! We're very excited to hear that things are going well. Thanks for all of your prayers and support. It is wonderful to read the messages from all the different people who are thinking of and praying for our precious girl!
All our love,
Barbara
15 March 21, 2005 at 01:17 PM EST
Hello! Well, we got a late start due to some complications with the first case. So, we're just actually beginning our "waiting period."I forgot how much I HATE this!! It's amazing how much your brain can block out until you are back here. I was doing just fine until we had to give her her Versed and she screamed because it tasted so yucky and she couldn't have anything to drink. I said, "I'm sorry we have to do this to you." and then I just lost it. I thought I was holding up pretty good up until that point. .....
So, now we're back in the surgical waiting area, just....waiting.
BarbaraMarch 17, 2005 Edited from Carepages
Madalyn has been fighting a cold the past week and a half, as we all have. I talked with Dr. Sullivan last Friday and we decided to put her on an antibiotic "just in case." ...... she should be clear for the cath on Monday. ..... As long as they don't have to do any repairs during the cath, we should be released in the afternoon.Thanks for all your prayers and well wishes! We appreciate everyone's kindness.
Barbar
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