Stents & Surgery....&FAMILY

So in the last blog I was not very detailed because SO much has happened in the last month and a half.  I did mention that her head swelled up and she was moved back to the PICU.   Her heart rate was elevated and it effected her breathing rate too.  Long story short she has a clot in her superior vena cava (SVC)--which is the main vessel that takes blood from the head into the right atrium of the heart.  Sounds serious right?

See the large blue vessel at top left?--That is the SVC

They took her to interventional radiology.  They shot a dye into her to get a picture of the anatomy of her veins to see exactly what was going on.  Come to find out she has many clots in her chest and her whole left side was totally occluded.  When that happens your body makes collateral veins to compensate the blood flow.  They tried breaking up some of the clots but were not able to because they were all old clots and had already attached themselves to the walls of the vessels.  When that happens there is nothing they can do.

They also attempted to break up some of the clot in the SVC but once again were not able to. They talked about putting a stent in to help that flow but decided against it.  Since she is a baby and will be growing she will have to have several stents placed as she grows.  Also stents can still clot and even break inside.  Instead they decided that the blood thinner she was starting would keep what flow she did have from getting any worse.

The reason I recapped the whole scenario is because it is happening again.  Her head is swelling and the superior vena cava is having very little to no flow.  I am awaiting cardiology to show up and explain why now they want to do a stent.  I am guessing it is because it has become more of an emergent situation but I just want to hear why they have changed their mind.  A different cardiologist is on service so maybe it is just a difference of opinion.  I will update Sunni's fb page if we decide to go ahead with the stents and then later blog about it after it is done.

On May 23rd, if Sunni is stable, she will be having a pretty major surgery.  Anytime her abdomen is opened it is risky due to all her previous surgeries.  She will have a nissen fundoplication where the top part of the stomach is wrapped and sewn tightly around the esophagus.  This will help tremendously with her throwing up.  It usually makes it impossible to throw up.  The reason she has not had this sooner is because her stomach has never emptied.  She has a stomach emptying test 2 weeks ago and the contrast went through for the first time at a pretty normal rate.  HALLELUJAH! This is BIG news for Sunni.  PTL!

She will also be having something done to her pylorus.  They will not know until they get in there what to do but they want it to be wider so that food could easier pass through.  She does not have pyloric stenosis but the surgeon just wants to give her the best chance possible to be able to eat through the stomach instead of the jejunum someday.  Some of you may have read that she was fed (pedialyte) to her stomach for the very first time a few days ago.  That was very short lived as she started vomiting large volumes.  That was the very first time her stomach had any type of food in it.

She will also be getting another button/tube put in her abdomen.  They want her to have separate G & J tubes.  So instead of having one button/tube she will have two.  I am not really fond of that idea AT ALL but I really trust this surgeon and GI doctor so I will go with it if they think that is what she needs.

So that is what is going on in the roller coaster we call life.  The only GREAT news I have is that my husband and boys will be on their way to Houston TOMORROW!  Shawn is taking a leave of absence from work.  It will not be easy financially but it is what our family needs right now.  As strong as I may be I just can not do this alone anymore.  I need my boys (all 3 of them) and they need me.  I have such a peaceful feeling right now even through all the drama here at the hospital knowing we will be a family for 30 days.  My heart is happy right now.

I can never say thank you enough to the people that have supported us since day one, who have prayed for Sunni, and kept up with us.  It means the world to my husband and I.  

I do not like this pic--but this is what she looks like when her head swells which is worse on the right side of her face than anything.

I love her Sunny disposition!

This is my favorite picture of her to date.  Yellow is her color.