Thank You All

My last post was noteably dark, sad, what have you. I apologize for those I scared, especially my husband. I'm doing much better now. Thanks to everyone for your positive messages. They truly help. I feel so blessed to know so many people are thinking of us and taking Izzy and our family into their hearts. It provides strength when nothing is left. I am reinvigorated.

Since my earlier post, several questions have been answered. Izzy's heart is doing great! Well, great for her. They didn't even see the VSD left by the patch any longer. Her heart function was low, but normal. Her PAs, especially the right, were still "slender", but all was good. The enlarged heart the non-cardiologists have mentioned to me several times was explained by Dr. Cutler. It looks enlarged because of the surgery and because the outflow conduit makes it difficult to judge the actual size of the heart on the x-ray. Her heart is fine. None of this mess is cardiac related.

That being said, the docs are leaning towards some virus. When they indicated McKenzie's x-ray was clean earlier, they didn't really mean that. The attending pediatician explained that McKenzie's x-ray is a very difficult read, definitely not your normal x-ray. By clean, they meant there was no sign of pnemonia or heart failure. What they believe is happening is swelling in the very teeny tiny bronchial tubes. That sort of thing is not on the x-ray. So, we are still here and don't know how long we will stay.

Thank you for your continued support. It is very much appreciated. Thank you for the kind thoughts and messages. They truly help and mean so much. I felt so alone and helpless this morning when both my babies were dealing with medical issues and I couldn't do anything. (Phin has two ear infections, but has antibiotics to help with that. When I wrote this earlier, he was on the way to the docs without me. Thank you, Mom!) Your kind messages and support brought me through it. Thank you! Thank you! I'm fully ready now to move away from this stage, get Izzy healthy and home. Thank you again!

Mel

18 Message(s)

Posted Jun 11, 2009 1:32pm

by Nora Schultz

Definitely no need for apologies! I think we all deal with these things differently (and sometimes the same). It's normal to be such a concerned and loving mom! Glad to hear that Izzy's heart is fine. Praying that whatever this virus may be, that it will subside. Praying that Izzy will be better soon (as well as, Phin) so you can all return home and relax. As our heart buddies (Traci & Vito) always said "slow and steady wins the race"! Take it easy, slow, and stay positive. You're all in our thoughts and prayers! God Bless!
cp: AlysaBeth

Posted Jun 11, 2009 8:59am

by Stefenie Jacks

Mel,
There is no need to apologize about your earlier post. We all have those moments and sometimes we need to type it all out(Vent it) just to get it off our chest. You have to be able to let those feelings out! It is 100% normal to feel the way you do.
I'm glad to hear that Izzy's problems don't appear to be heart related so hopefully they will get to the bottom of it so she can get well again.
I've had them say that Logan's heart size was large following his surgeries and the cardiologist said the same thing that is related to the number of surgeries he has had and they expect it to be like that.
Have FAITH Mel!!!!!!!
Always in our many thoughts and prayers,
Stefenie, Ryan, Wyatt and Logan Jacks
cp: Loganbear

Posted Jun 11, 2009 7:50am

by Joseph Ondrush

Sending supportive words during your difficult time is the least one human being can do for another. i will continue to send them as Tracy and Vito keep me updated on your daughters progress. Good luck.

Posted Jun 10, 2009 11:09pm

by Janeen Greathouse

all our best to you, we know this is a very trying time for you and our prayers are with all of you!!!

Posted Jun 10, 2009 10:55pm

by Kristin Mattias

Hi, I have a 4 year old daughter with TOF, PA, VSD, and 22q11 deletion. I just came across your page, and wanted you to know I am praying for Izzy.
Kristin Mattias (and Janey)
cr{ JaneyHoganMattias

Posted Jun 10, 2009 10:28pm

by Dorie Neuhaus

Mel,
Contrary to popular belief, heart moms are not Superwoman. We try to be, but we are mere mortals. So, that means we are allowed to have our moments of doubt and frustration. Your dark posting was just that and nothing more. Don't beat yourself up over it. The important thing is you've picked yourself up after your brooding and you are still on the right track. You're going to do just fine and we will be right here pulling and pushing you along as needed.
Miss Izzy is one unique young lady. She has a determined spirit, but that can cause some anxiety because she wants to do it her own way in her own time. That's when it's time to talk to God and see if he can assist Izzy along in her time and her way. She's a fighter and will do just fine. It may take a while, but you'll look back and laugh on her determined spirit when she's a teenager and she's giving you heck. Meanwhile, we'll just keep on praying. You're okay, Mel. Hang in there.
Dorie
cp: MatthewNeuhaus

Posted Jun 10, 2009 9:34pm

by Laura Davenport

Praying for you, always, for some fast easy answers and a faster easier recovery! Hang in there!
Laura and Lily
cp: lilygrace2

Posted Jun 10, 2009 9:16pm

by M Swim

As the Mom of a 39 year old CHD survivor please stay strong. You hang on during scary and take one step at a time. You and your family and most of all your daughter are in my prayers. I know a family from here in Iowa that went to Michigan for their daughter's CHD issues. You are in a good facility.
Margo Magee Swim

Posted Jun 10, 2009 6:17pm

by Kathleen Angeli-Voyt

Mel,
Know that your precious Izzy and your entire family remain in our thoughts and prayers. Praying as well for your peace which understandably can be very elusive during times like this. Do take great care of wonderful YOU too!! Bless you!

Posted Jun 10, 2009 4:58pm

by Nancy Beck

We're Cassidy Lisa's Great Aunt and Uncle. Traci let us know about your troubles, so we wanted you to know that we're adding Izzy & family to our Prayers and also hoping that you'll all be home very soon! Love, Bill & Nan XXXOOO :)

Posted Jun 10, 2009 4:51pm

by Shalonda Lowther

My daughter now 21 months old has truncus arteriosus along with DiGeorge. I too have made the mistake of reading the awful internet on those issues!!!! Her surgeon, at Texas Children's Hospital, said his first patient to have this type of surgery is now 15 years old and doing GREAT!!!! That is what helps me. We (mother's of CHD kiddos) are going to worry regardless of what we read or hear. It is just normal. You are a great mom to Izzy and she knows you would do anything for her! I don't even know you and I know that much! Hang in there!!! Things will eventually get better. I am praying they do soon!

Posted Jun 10, 2009 4:21pm

by Sheila B

Mel: I have been following Izzy's carepage for a while now.
I worked in the Medical Field for 30 yrs and the first thing I want to say to you is DO NOT believe everything you read on the Internet. Some of the stuff on there is not accurate at all. Unless you are actually reading Medical Journals and Articles you cannot go by what others say. even if it is a Medical Journal just because it happen to one does not mean it will happen to all.
I have severe Heart and Lung Issues and according to the most of the information on the Internet I should not be alive today. I should have died 2yrs ago but here I am. LOL!!
Now regarding Izzy! She really needed to be back in the hospital this time. She has been fighting this since her surgery. Being around other kids last week probably just topped this off (not blaming you in anyway). You know kids are germy, and if her system was low anyway it was easier for it to bother her and not others. At least it is not Pneumonia and can be treated. Now they can get some fluids in her which will most likely help her a whole lot, along with the oxygen and antibiotics (I assume she is on them). She will hopefully get this out of her system, and can go back to normal life.
One thing I encourage you to ask, talk to the Doctors, and even scream about is that Izzy had gotten to the point of not taking many fluids at all. This is not normal and it cannot be good for her. What I wonder is maybe you can change her to regular milk or possibly another formula. I know I am not a Doctor but this has really bothered me. Maybe when she gets over being sick she will start drinking and eating more.
Also ask if you can get a Pulse Oximeter to use at home so you can monitor her Oxygen Levels at home. They are easy to use! You would use it on her at night for the most part but also could at least check it during the day when she is not doing good. When she is fine you can just have it for "if" she needs it again.
Sorry did not mean to write so much, but wanted to try and help some. Thanks for sharing her story with us. I will be praying for all of you. I am faithful that the poor little darling will be feeling a lot better real soon!
Sheila

Posted Jun 10, 2009 3:43pm

by Mary Tortomose

Mel: Great news -- your latest post! You are strong and determined. It really shows in your posts. Don't worry about anything but your beautiful children. Family is most important. Some advice take a little rest, stop thinking (and no more internet research!) and let the doctors do their best for both little Miss Izzy and Mr. Phin. Please continue to be strong (have Dale give you a little shoulder massage later on -- it will do wonders for you!). Take care - lots of hugs and lots of concern being sent your way -- Mary T

Posted Jun 10, 2009 3:28pm

by Terri Gonzalez

May God bless you and your family with health (mental and physical) and strength to see this through. Amen!

Posted Jun 10, 2009 3:15pm

by Kim K

So happy to hear that sweet little heart is doing ok! Whew!
I know it is so hard not to imagine the very worst, its ok, how can you not after all you have been thru.
SO sit back (grab the tv remote) and relax, let the nurses and rts take care of little miss Izzy and rest, you deserve. Heartbreak and stress can take alot out of you. (hope the cafeteria has some good choc chip cookies and decent coffee)

Posted Jun 10, 2009 3:12pm

by Bonnie Russie

Hi Melonie and Dale,
God is good and prayers are answered! I'm so happy your little one is doing better. I'll be very happy for you both when she's doing better and you can take her home with you. I also hope your son is feeling better after he sees his doctor.
Bonnie Russie

Posted Jun 10, 2009 3:08pm

by Traci Lisa

Yeah! I'm so glad that things seem a little brighter. We're all behind you guys helping to carry you through it all. If you didn't have dark moments- you wouldn't be human. You're handling everything beautifully. Continuing to keep Izzy & you guys in our prayers.

Posted Jun 10, 2009 3:04pm

by Mike Reynolds

Hang in there, Mel. I know that not knowing what's really going on is both scary and aggravating. The helplessness is also awful. But Izzy and Phin are in good hands, both at home and in the hospitl. Mike R