MADDOX GETS HIS WINGS

I have been meaning to update on Maddox but it has been crazy then I just couldn't do it. The original update was amazing news about how all his levels were good, the heart was basically fixing all the problems on its own, he would be home soon and Tammi would be induced to have their 2nd child (a little girl) on Dec. 18th. This update didn't happen and on Friday Nov. 21st Maddox went home to be with his Heavenly Father who will make his heart whole and mend all his ailments. What an amazing boy! I can't even think of him now without crying because I truly believed he is the biggest miracle I have ever witnessed in my life and it makes me so sad to think about not hearing about another one of his miracles. I just shake my head everytime I even think about everything this boy went through and the amazing transformations that happened over and over that baffled his doctors who could only say "it was yet another miracle because this just doesn't happen!" This boy won a very special place in my heart when Tammi was 6mos pregnant and given no hope. I searched the internet for a doctor who could help Maddox until she was strong enough to believe she could handle it. This loss is devastating and in the beginning she always said she wasn't sure if once she wanted to have him for the fear of having to let him go. I have no clue the pain she is in now but I honestly believe she will never regret for a second all she endured for her baby boy even though in the end he wasn't hers to keep!

I have been thinking about this blog all weekend but everytime (including now) I even think about it I just cry!

I cry because of all the pain this baby endured and still came out of every situation with a miracle and a smile!

I cry at the pain these young parents are experiencing in real life when just the mere thought of losing a child crushes all other thoughts spinning in my head and just makes me cry...just the mere thought!

I cry for all the missed hopes and dreams everyone had for our little miracle boy!

I cry at the thought of a funeral with a casket so small with a boy larger than life and his family just starring at the lost love of their life ~ the baby they fought to save before he was even born then fought the entire 21 months he lived! They are young parents but they matured quickly and the love they had for Maddox and the lengths they went to to get him what he needed was awe inspiring to say the least!

I cry because I know he will be whole now! Surgery free! Pain free! Free to be his ornery funny little smiley self!

I cry b/c I will miss my daily updates and camera phone pics of a boy with tubes, gowns, scars, machines and STILL A SMILE!

I cry because just two days before little Maddox went to be with Jesus his parents were told he was doing great, the new heart was fixing all the problems on its own and he would be HOME before Christmas! His family was so excited to have both babies home for Christmas!

I got the call @ 5:22pm Friday from Brandi and I still do not know what happened but don't want to ask anymore questions than necessary while they are grieving. The funeral is Tuesday in Wagoner and I am unsure if I will be able to attend b/c of Zay's surgery and recovery but please please please pray for Maddox's parents, grandparents, aunts, uncles, cousins and true fans (like ME!)

You've definitely earned your wings baby boy! We love you! Watch over your family, your new little sister and bring them peace - may they always feel your presence and remember your love of life no matter what it brought your way!

These are some of my favorite pics of Maddox

PRAYERS FOR MADDOX

Breaking news on the Maddox front of a serious nature, this update came from Tammi yesterday evening after Maddox's surgery:

I once again am sitting here beside myself trying to take in everything that has happened today. Maddox went in to surgery at 7 this morning with the hopes that they could do a repair to his SVC and make his condition better. However, when the surgeon opened him up they realized that repairing the SVC would be of no benefit to Maddox. They came in and informed us that they were re-listing him on the heart transplant list. This has been a very traumatic day for us. We were hoping this would be the blessing Maddox needed to be able to live a healthy life yet once again we are starting over from square one. I for one have been a complete mess all day. They are keeping him sedated for the next 48 hours during which time I am going to attempt to get my emotions under control. No matter how much I am hurting I WILL pull it together to be there to hold his little hand and fight this fight with him. Please keep praying.

Love

Maddox's Mom

Please keep Maddox and his family in your prayers!

MADDOX NEEDS ANOTHER SURGERY

I received a new update from Tammi this evening and Maddox has had a setback. Here you go:

I am extremely saddened to inform all of you that Maddox is going to have to undergo another open heart surgery.Maddox is having backflow of blood to his head that is causing him headaches and elevated pressures in his heart. The only way to fix this problem is to perform another open heart surgery. This surgery would be a very complex surgey as it would require Dr. Frasier to essentually create a vein using Maddox's tissues. My poor baby isn't even 2 years old yet and this will be his fourth open heart surgery.Once again I ask everyone to pray for his safety during this procedure and hopefully he will gain some relief from this intervention.

Thanks

Maddox's Mom

MIRACLE MADDOX

It has been almost two weeks since Maddox's transplant surgery and he is doing GREAT!! They thought last Thursday that his body might be rejecting the new heart however the biopsy revealed otherwise and he is doing sooooo good!! Tammi and Manny can finally relax a little and look forward to the new baby girl they are expecting. I know I have said it before but Maddox's story amazes me each and every day. He is a truly blessed child with the hands of the Great Physician on his heart at all times. Truly a miracle boy!

MADDOX THE MIRACLE BOY

I forgot to blog (I think!) about Maddox's 2nd CAT scan. After the first scan, Maddox was diagnosed with minimal brain damage but they wanted to wait until he woke up to see his reactions. When he woke up, Maddox recognized everyone and talked up a storm. They did a 2nd scan before placing him on the donor list and the damage that was present in the 1st scan was GONE! He had absolutely NO brain damage ~ yet another miracle amazing his doctors with every chance he gets! After ONE day on the transplant list ~another miracle ~ Maddox got a new heart. Days later...Maddox is doing great ~ even better than expected!! He had a slightly irregular heartbeat that the doctors said would even itself out and it did. He now has high blood pressure but the doctors say it is also nothing to worry about. They said his pressure will even out also and is caused by the heart being a little small. The donor was a 5 month old baby girl who passed away. Tammi was able to write a letter to the donor family but now any contact must be made by the donor family and Tammi will not know anything else unless they contact her. It is a bittersweet moment for Tammi knowing that her baby can now live BUT another mother has empty arms and a broken heart to provide Maddox with this chance! Continue to pray for all of those involved!

MIRACLE BOY

I truly believe Maddox is a miracle! This kid repeatedly defies medical odds and amazes his doctors with his strength and will to survive. Just one week ago the doctors were trying to explain the severity of his condition and trying to convince Tammi basically to let go but she would not. I tear up just thinking about the words, "Call your family, friends and priest b/c he is NOT going to make it!" I can not imagine even hearing those words ONCE let alone the handfuls of times Tammi and Manny have heard them BUT he has pulled through each and every time! I just shake my head at the mere thought of every thing this little boy has been through and survived with a smile on his face. As you can tell the prayers are working and there is some good news on the Maddox front. As of yesterday Maddox is off life support, infection free and ventilator free only needing extra oxygen through a nasal cannula. Amazing! They did a CAT scan yesterday to determine the severity of brain damage due to the MANY times he coded and his brain was without oxygen in the past few weeks. This is important b/c besides the obvious reason of just needing to know, the severity of brain damage would determine Maddox's eligibility to be placed on the transplant list. Tammi's brain working overtime decided that b/c Maddox is VERY intelligent for a child his age that maybe a little brain damage would just give him the normal intelligence of a child his age - the power of hope! Can you believe it b/c the doctors couldn't?!?! The amount of brain damage was minimal which shocked the docs who had said it did not look good; however, before the excitement could set in they wanted him to wake up to see how he would act. He was in and out just waking up for minutes at a time UNTIL last night around 10:30pm I received a text from Brandi stating MADDOX WAS AWAKE AND TALKING LIKE CRAZY SO THEY THINK HIS BRAIN IS FINE - THANK GOD!! It is funny how those of us who have known Maddox's story since Tammi was pregnant are just in awe at the miracles that continue to happen in this family's life!! Just when you think there is nothing left to hope for and nothing left to be done......he survives whatever is placed in front of him and gets stronger for his next battle! Maddox still has a long road ahead but this is a huge roadblock that he has overcome! Keep them in your prayers!

TAMMI AND MADDOX

Maddox is still critical. They are needing to take him off of one of his medications; however, it must be done slowly and each time they attempt to take him off he codes. He coded three times on Monday, four times Tuesday then again on Wednesday and after that I am not really sure what has happened. He is still really swollen. He attempted to wake up at one point but they immediately sedated him again because of his thrashing around. Brandi went down there for three days and was saddened that she didn't even recognize her little nephew. The doctors are frustrated with Tammi and are telling her there isn't anything they can do short of a transplant and Tammi is very frustrated with the doctors for wanting to give up on her baby boy and unwilling to let go of the hope she regained when he tried to wake up and squeezed her finger when she talked to him. Keep this family in your prayers!

On another note Tammi went to the ob/gyn and found out she is having a baby girl that is perfectly fine - no heart defects present!! What a relief!! However, she ended up in the ER this weekend with contractions. They believe it is do to too much stress, dehydration, kidney stones and an infection they are now treating. I wish there was something/anything I could do for this young family but all I can do at this point is put their story out there and ask for prayer and support!