Saturday, January 30, 2016

Life

I feel like our life has become a constant state of bad news since we learned of Avelyn's congenital heart disease. Recently it's gotten worse. She has really decompensated over the last few days. She had blood in her stool Thursday and vomited up her medications. She was also more irritable and seemed to be experiencing more pain. Friday things continued to escalate through the morning. Her pain quickly reached an uncontrollable level. It seemed to be originating from intestinal ischemia or lack of blood flow to her intestines. She was unconsolable and had to receive multiple doses of morphine. Her work to breathe got out of hand and she had to be restarted on the positive pressure support nasal cannula. Her blood was acidotic from poor perfusion and working too hard to breathe. By late morning it became clear that she needed to be reintubated. 
All these acute changes were initially attributed to an intestinal infection or again possibly NEC.
Through the day she continued to struggle even while ventilated. Her CO2 levels remained high while her O2 levels were low and she stayed acidotic no matter what was tried. She also continued to be pretty uncomfortable. 
She had a fever through the night and into the morning, spiking at nearly 103 with Tylenol on board. While it's improved some today she is still somewhat febrile. Today she was also uncomfortable and it's been difficult to control her pain without bottoming her blood pressure out or over loading her with fluid. The docs also tried to get an arterial line without success. (3 hours and 15+ sticks later I don't want to go into my feelings about that).
This morning her X-rays continued to be clear of any signs of NEC, blockage or pneumonia. Her lungs look pretty clear but cultures of sputum were sent just in case. She also had blood and urine cultures sent yesterday and today. So far nothing has grown but it takes up to five days for possible bacterial growth to present itself. 
She had an echocardiogram this morning too. The results aren't good. She looks to have pericarditis or an infection in her heart-one of her tricuspid valve leaflets. The damage is severe. She'll need surgical repair or replacement of the valve and soon. We don't know if the surgeon can repair it on top of the other surgical repairs she needs. This might mean an additional open heart surgery in her near future. However the risk of taking her back with an active infection are very high. However she is only declining at this point. We seem to really be in a tough place. We don't know what will happen over the next week. One thing is clear, she'll need to be on very powerful antibiotics for a couple months after her surgery and will need to remain hospitalized for the duration.  So our time here will likely stretch into the spring. We're so ready to take our Avelyn home and let her be a baby. She needs to catch a break. She's been through so very much and has endured so much pain. She's never known anything but pain, fatigue, suffering, sedation and conscious altering opiates. We're doing our best to stay positive but when the doc apologizes for "only giving bad news for a while now" it gets more difficult by the day. Please keep Avelyn in your thoughts. I'll try to do better about blogging more regularly. 

4 comments:

  1. I am so sorry for everything you have had to endure in the last 6 weeks. No one should ever have to go through what you all have gone through. I cannot imagine being in your shoes, but you are doing it amazingly and gracefully. We don't usually pray, but we have been, and will continue, praying for you and your sweet girl. I am sure it's hard, but try to stay positive. You are all amazing, and I wish nothing but happiness for you and your family. You continue to be in our thoughts.

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  2. I am so sorry for everything you have had to endure in the last 6 weeks. No one should ever have to go through what you all have gone through. I cannot imagine being in your shoes, but you are doing it amazingly and gracefully. We don't usually pray, but we have been, and will continue, praying for you and your sweet girl. I am sure it's hard, but try to stay positive. You are all amazing, and I wish nothing but happiness for you and your family. You continue to be in our thoughts.

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  3. This blog was shared with me and I just wanted you to know that even though we've never met your story breaks my heart. Avie is in the prayers of the Topolski home as are you, her parents, and all that love her. May her pain. E controlled and her body heal. Also lifting up the medical team that cares for your beautiful girl. May God give them the knowledge and ability to bring her to health. That she may come home and live a long, happy, life.
    (((HUGS))) from one momma to another.

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  4. My sweet girl, please don't apologize over what you feel is a lack in updating your blog. I am amazed that you are able to do what you do considering what Avie's been through. I continue to pray that God will hover over our precious Avie and bring her the healing she needs in order to go home with Mommy & Daddy and be a baby. I have to believe this is in her future and anxiously await that moment. As always, I am so proud of you & Sean for being the diligent parents that you have become. Praying God grants us a miracle and soon. Until then, praying He keeps you all in the palm of His Almighty Hand...love you all more than words, Momma

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