Pulmonary Arteries

All I can think about for the last day has been McKenzie's pulmonary arteries. At the beginning of this year, we were told that McKenzie's PAs had grown so much thanks to the shunt that she was no longer considered pulmonary atresia, but close to normal. I was shocked when Dr. Delius told us he had widened the PAs during McKenzie's surgery because I was under the impression it was not necessary. But, it quickly went to the back of my mind as we tried to get her back. Then, to learn yesterday how small the right is compared to the left still and then to see it and the hour glass that forms in the middle of the right was a punch to the gut. How can the right PA be 3.5 mm at one point and she still have adequate blood flowing to her lungs??? I know the answer---collateral vessels. That is a problem though. We have been told those collaterals cannot sustain her in the long run.

The PAs were always the problem from the beginning. The first diagnosis I was given was tetralogy of fallot and possibly more because they just couldn't find the PAs. We went through numerous other echocardiograms and they never found the PAs. Finally, they saw one---the left---and her diagnosis was changed to truncus arterious. Then she was born with thread-like PAs and considered ToF with pulmonary artresia. But the shunt had helped, the collaterals were not being utlized as much and the PAs were growing. The remaining collaterals are too little to be cut off and the docs guessed they weren't providing that much blood to the lungs.

We were told to expect her next true intervention in 1 to 5 years, not less than 6 months. I was ready for some normalcy. We have been on this roller coaster for long time now. How can they think widening the PAs in the cath lab will help when they were widened 3.5 weeks ago during the surgery and that obviously didn't work well enough!?!

I don't want answers, I just want to put this out there so that maybe I can begin to move on once again. It was a year ago today that McKenzie came home for the first time at 8 weeks old. She was so tiny and still so sick, on the n-g tube, 10 meds, her chest incision was still open and deep on the bottom, not a day went by where some medical professional or multiple were checking her out. I know we have come far, but I'm exhausted. I know Dale is too. Yesterday's news knocked all of the energy I had left right out of me. I think it may have done so to Izzy as well. She sounds worse this morning. For those who remember Xavier at Izzy's age, she sounds just like him. I've done the CPT, given her a breathing treatment, and nothing works. The only thing the extra lasix has seemed to do is start her down the road to dehydration. Her eyes are getting dark circles. I've tried everything to get her to drink more, apart from syringes full of liquid. I may do that after her nap or just call her PCP.
I know this was a darker post, but I want to end more positive. Happy Mothers' Day to all of you moms. Enjoy your babies no matter how old they are. I know I will.

Mel

12 Message(s)

Posted May 10, 2009 8:36pm

by Renee McConahy

Mel,
I will keep you all in my prayers. I hope you and Dale can get some much needed es. Ofen things seem worse when we are not at our best: wll rested etc. If there is anytihng I can do for you, food, child care a good ear to listen, just let say the word.
Renee

Posted May 10, 2009 2:30pm

by Holly Smith

I can feel your frustration and despair, Melonie, and I share it, but try to hang in there. They really can do incredible things with pulmonary arteries in the cath lab, and the results are often more impressive than what they can do via surgery. Elie's gearing up for her fourth angioplasty (she has right pulmonary atresia), and they've been able to balloon her RPA from a nearly nonexistent 1mm up to 8mm so far. We're keeping our fingers crossed that by the time she's 7 (when kids' bodies can no longer reshape their pulmonary anatomy), she'll have a nearly normal RPA (her left PA is normal, but it leads to a lung almost totally destroyed by pulmonary hypertension, so it's not doing much). It's so, so hard to keep the faith sometimes, but I'll keep trying if you will!
:0)
Holly
(cp: EliesPage)

Posted May 9, 2009 10:27pm

by Andrea Welch

Awe, I can relate. It seemed when we would see more than one Doc they all had different ideas about her treatment. We even had one who told us she would only need two surgeries. Well Four sugeries later and one single Cardiologist who has her case, we are on the right track. I'm not so confused about her diagnosis and treatment anymore. It's all right to have the not so positive posts. You're right it does help to just get it out and move on. I don't have that luxery any more Jayci's Doctors and Nurses check her carepage (that's nice, but I can't write what I really think sometimes)HAHAHA :)
You remind me of me and the last two years with Jayci. I hope you have a wonderful Mothers Day and I will keep praying for you. You and your family are always in my thoughts and prayers.
Andrea

Posted May 9, 2009 1:16pm

by Dorie Neuhaus

Mel, I know how how you feel. We're off to Boston Children's on Tuesday with Matthew to see if his heart function really had decreased. So it's high anxiety time here. You can't help but have some of that darkness seep through every now and then. It's the uncertainty of everything that causes the doubt and the darkness. Make you a deal, I'll hold you up if you hold me up. It's kind of hard to fall into that pit of despair if someone else has got a hold on you - even if it's by the hair! Many prayers and much love coming your way from all of us. Hold on.
Dorie
cp: MatthewNeuhaus

Posted May 9, 2009 8:13am

by Stefenie Jacks

You are allowed to have those dark moments where you need to vent a little frustration. We ALL have them from time to time. I think that once we get it off our chest we are ready to move forward and start knocking down doors until we get the answers we are searching for. Don't ever be afraid to ask questions or chase down the docs if you feel a treatment they have given is not helping or possibly causing new issues....like dehydration. You have every right to ask questions.
Big {{{HUG}}} for you! I know it's not always easy but have FAITH!
Happy Mother's Day!
Always in our many thoughts and prayers,
Stefenie, Ryan, Wyatt and Logan Jacks
cp: Loganbear

Posted May 8, 2009 11:48pm

by Trisha King

You are Izzy's number 1 on her team to fight for her. You got that position because you are an amazingly strong woman and mother. I have seen that through your posts. Also by knowing the inner strength I've had to pull upon as I prepare for my baby's birth and journey. But just because you are her top fighter dosen't mean you can't step back from time to time and scream.
This is so unfair to have happened to Izzy. But it has also happened to you and your entire family. In no way does it make you less of a warrior or mother to need to vent or throw your hands up and say Enough Already!! I don't think we would be human if we didn't come to breaking points while traveling through these roads. We are human. Luckily enough though we are also mothers. We have been given this amazing little gift of a mother's insticnt. We know when something's not quite right with our little ones. Though Izzy doesn't yet have the voice to say it, you do. And you say it so well. I know that these dark clouds will pass and you will be re-energized for your little girl and your whole family.
My heart aches for you as you struggle through these days. Know that all of it will be worth it. Izzy is worth it.
Happy Mother's Day.... Enjoy you day.
Prayers Always,
Trisha
cp: JohnnysWay

Posted May 8, 2009 6:41pm

by Lecolia Brogdon

May you be blessed with an extra blessing this Mother's Day. My family and I continue to keep all of you in prayer during Izzy's recovery.

Posted May 8, 2009 12:45pm

by Tami Swanson

Please remember that "Life is a gift!... Enjoy it today, that is why today is called the PRESENT!" I know you are frustrated and need to get some of the negative energy out. Please remember that we all ride this roller coaster and some day it will get better!! I can tell you that as my son is HLHS and we rode that roller coaster until he was 3. He will soon be 11 and is a true miracle. Remember it takes more energy to be mad then it does to be happy. Life is too short to be mad. Accept and deal with it and move on as quickly as you can. Please take care and hang in there.
Tami Swanson
Mother of HLHS

Posted May 8, 2009 12:33pm

by June Spriggs

Hi Mel,
We lost track of your updates for several days. For some reason they were not coming through on our computer. We have been so busy trying to get our B&B up and running, moving etc. that I didn't realize it right away. So Sorry for not responding these past several days!! I sounds like Izzy (and all of you) are going through a rough patch. Finding out that things are different that you thought they were is really frustrating. Just keep asking questions until you are satisfied that you have the complete current information. Know that you have many people sending you love and positive thoughts.
Have a wonderful Mother's Day!!
Love, June,David and Kristen

Posted May 8, 2009 12:05pm

by Laura Davenport

I can sense your sadness and frustration - I can only half imagine how you are feeling, it's such a long road ahead but you are doing great and keep your faith in the Lord to see you through the darkest times!
Heart hugs,
Laura and Lily
cp: lilygrace2

Posted May 8, 2009 10:55am

by Angela Holtz

You are doing a fantastic job. I can't even imagine what you are feeling on a daily basis and you've been doing this for a year. And you'll keep going because as mom you just have to. But never feel bad for how you feel, because you are human and this is hard!

Posted May 8, 2009 10:49am

by Audrey Vinyard

I am really not sure what they do in the cath lab but think I have heard something about stents to widen the arteries. This is a good question to ask your Dr. because you do need the answer. Once we have an answer, I think we can cope. It is a long and scary road you are traveling. Keep on being that great loving and caring Mom and we will be praying for you all along your journey. Always remember you can lean on the Lord. Happy Mother's Day to a great Mommy.