Yesterday, we celebrated her 8 month birthday! WOO HOO big girl! She spent the day playing and sleeping. Pretty much a normal day, except she had a pretty pink dress on. She was totally a ham for the day, as if she knew it was a birthday or something. So funny.
To go along with getting older, Ruthie has had a first! HER FIRST TOOTH!! Over the past couple days Ruth was sort of crabby. We all assumed it was from taking her off the adavan (the sedation medication) and the morphine. NOPE! I mean I am sure it had something to do with the situation, but her teething makes much more sense. So she is cutting her first tooth on her lower gums. Once we figured out she was teething (or is teething), we made a quick fix: Tylenol!!! Since then, she has been quite content. She is fascinated with putting anything in her mouth right now. It is funny to watch. But if you aren't careful, she will hold your hand and it will end up in her mouth. She is sneaky.
Besides cutting teeth and turning the big 8 months, Ruthie has a few medical issues arising. A few days ago, we noticed that her broviac was occluding. (Basically one port of her double broviac was clogged). So we tried to flush the line and it didn't clear, so we decided to just use the other port for the time being.
Well, one of Ruth's many nurses discovered that the port wasn't nearly as clogged as we thought. She did some fancy new taping and like magic both ports began working.
Out of the woods.... NOPE!
Last night, Ruthie spiked a fever. Of course anytime she has a fever, they run cultures on pretty much everything and start her on antibiotics to make sure there is not an infection. Her broviac line culture did come back positive with infection. So we are adding a broad spectrum antibiotic and running a culture on her broviac for the next 5-7 days. We have two ways we can go with this infection.
1. The infection clears on its own (with the help of antibiotics) and then we are done.
2. The antibiotics do not help the infection and then we pull out the broviac line and start a peripheral line for a few days. We wait until the infection is gone and then insert a new broviac line.
I am praying hard that we can cure this infection with the antibiotics that we are on and just let her be. If not, that means in the near future we have a trip to the OR to remove her broviac line. Then the fun begins of trying to get her a peripheral line. Ruthie's veins are so hard to stick sometimes and it may take a few tries before we hit success. THEN, after the infection clears up, we go back to the OR for a new broviac, which includes sedation and possible intubation. I cringe writing those words: sedation and intubation!?! UGH. I don't want Ruthie to go through those things again unless its to get a new heart. It is so hard for her to come back, swollen and sleepy. And then we have to extubate again, which is always a bit scary.
So, please please pray for a quick cure of the infection. It would be so much nicer.
Not to mention, while she has an active infection she can not take any heart offers. We are still listed, but if her name is first on a list for a heart, she cannot accept it until the infection is clear. It would not be fair to Ruth or another child. If Ruthie has an infection, she should not be in the OR for an open heart surgery. Also, after she receives her heart, she will be on anti-rejection meds and it will lower her immune system. Once again, her infection would not get better which could cause other major problems. That would not be right for Ruthie or for another child who could have taken the heart and been fine.
So we are just waiting. Ruthie is doing really well. She is starting to show her attitude, which THANK GOD the nurses find cute and funny. If they didn't, I don't know how happy anyone would be right now. She likes to play peek-a- boo with the nurses. She will cover her face when they are in the room and she is trying to sleep. Once they leave, though, she is back to watching tv and her cover is around her waist. LOL! I think it is silly and funny. Ruthie also likes to slip down out of her boppy while she sleeps. Some nurses try to fight that battle with her by picking her up and moving her. Other nurses think that too is funny and snap pictures for us while we are gone. They are a group of wonderful people at SLCH! They care so much and they make us feel very good about Ruth's care.
One last note.
Ruthie won a medal from the St. Louis Go! Marathon. My sister, Nicole, is an avid running and trains for half marathons quite a bit. Well, during her training for this run, she use Ruthie as her inspiration. She ran for her! It takes much strength and dedication to run 13. something miles. During her low points in the run, she kept thinking about how strong Ruthie has been. She thought about all the parents that deal with CHDs. She thought about the idea of organ donation. She thought about the parents that have to send their little ones to heaven. She really poured her heart and soul into this run and at the end she received a metal.
She gave this medal to Ruthie and it now hangs on her bed as a reminder of strength. Nicole said it was Ruthie's turn to remain strong and see this through.
Thank you so much Aunt Coley! I love my medal!
Please kept a constant vigil of prayer for out heart babies and their families. Nicole was absolutely right. Each one of us is blessed by God with strength to handle what life throws to us. Stay strong!
Thank you for praying not only for Ruthie, but for all of those precious heart babies.
Heart hugs!
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