Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Thursday, January 17, 2008

Another Low

Well the echo showed some things that are a little unexpected. Like the pulmonary artery that was just reconstructed is still quite small.. This will possibly need to have a stent placed to balloon it open. Not this stay but in the future. The function of the right ventricle is better and looking okay.. The aortic arch looks good and the tricuspid valve looks good... The thing that is the craziest is a new find... the tiny left ventricle has a rather large blood clot... Alex has been treated with Vanco for his infection a while back and he will stay on his meds until finished... He will also stat luvenox (sp?) injections for the clot.. This will hopefully prevent a stroke or breaking up of the clot to travel to other parts of the body. He needs to stay in the hospital until levels of this treatment are correct and then I will be giving his injections at home. The reason I brought up the infection is because there is a chance that the clot may have the infection inside it... They want to get done with his round of antibiotics, see if the fevers come back and then if so, treat for an extended amount of time to rid his body of the infection if present in the clot... We are hoping it doesn't move or break up in the mean time... This just presented itself today because it was NOT on his Echo on Monday. Anyway...I get frustrated that we have another bump, but that is our kid... nothing is ever straight forward... I should have known this was all too easy....


Anonymous said...

Yuk - I m sorry you are going through a low right now. I m glad that they found the clot and are preventing the negatives that can come from it.

I've been thinking a lot about you guys. I will be up at the U 3 days next week. If you need a ride to the hospital or anything else please let em know. I can leave my house as early as late as you want.

Little Alex will continue to be in our prayers.

Anonymous said...

Prayers, hugs and kisses. Love mindy and family

Anonymous said...

Brynn- You and your little family continue to amaze me. I think of you all and pray for you often. I wish I lived closer so I could help in some way, but please know that you are loved by your friends out here on the East coast! We hope that Alex will recover soon and get to go home with your family when he is healthy enough.

Anonymous said...

Andrew was on Lovenox for 3 months after finding a clot in his Superior Vena Cava. At that time he was still soooo skinny and little that it was hard to find any fat on his little legs to give the shot. If you need any advice don't hesitate to ask.


Anonymous said...

We know all about the clots and the shots. It is so very stressful and all of these bumps in the road get frusterating. Keep Your chin up and know that we are praying for you. You are always in our thoughts. It was fun seeing you today. Alex looks great.

With Hope and Love,
Kaidence's Mommy

Anonymous said...

It's a good thing that if he did have a clot that it was caught today so they could start getting it taken care of. I know you were excited about possibly being released tomorrow. . .so I am sorry that it's not actually going to happen now. We will continue to keep your family in our prayers.

Anonymous said...

Well, ... I have nothing to say that hasn't already been said except "We Love Ya'll" and even that has been said about a hundred thousand times.
We can't wait for Alex to be well enough for your family to all be together again, but we are grateful that the doctors were able to find the clot before it was damaging to Baby Alex.
Please give him kisses on his toes for me!

Anonymous said...

Oh no, not another bump. Those silly bumps we have to take in

At least they caught it, and can treat it. Echo's always scare me, we have only had one that didn't give us something to worry about.

We will be up there on Monday to see Dr. Day. If you are still there, I would love to drop in and say hi. We will be up there around 1 for the appointment, but I have no idea what we are doing, and how long it will take. It's kind of an emergency but not really a big emergency appointment. (That made no sense, eh?)

Anyways, email me if you can and we can exchange phone numbers, or you can let me know where you are at....etc....or you can tell me to go away too....(kidding)

Hugs to you guys, and you are in out thoughts and prayers all the time!!!

Pam and Rhett

Anonymous said...

Oh, I forgot to tell you, THANK YOU for all of the leads you left on my blog. I think we may have gotten bumped up on the housing list, because Rhett is considered "technology dependent".

We will still move, but at least it will take a big worry out of not knowing where to go!!

Have I ever told you that YOU ROCK?!?!?!?!


Pam and Rhett....again....

Anonymous said...

So sorry to hear about the setback. We are keeping you in our prayers and know the Lord and His angels are close by. Stick in there. You are amazing!

Anonymous said...

I'm so sorry to hear that of little Alex. I hope everything goes well for him and nothing else happens. Alex will continue to be in our prayers. Good luck during the weekend.

Anonymous said...

A clot? Oh dang.. But new teeth! Brynn you are a becon of hope. Hope all's well.