We're Coming Home

After much debate, Avigayil was officially discharged this afternoon.  Now I am headed for a long shower and then to bed. I  promise to write the rest of the story when I can see straight.

Fantastic News

Avigayil had quite a day. In the middle of the night her IV infiltrated. That means that instead of the fluids going into her vein they where emptying into her muscles. She woke up screaming with her had and entire arm swollen and hard. They then had to start a new IV which due to her difficult veins took a few tries. 

Later they needed to take blood which meant being pricked again. The test showed that her blood sugar was very low so they decided to repeat it to confirm (pricked yet again). This time it was dangerously low. There where about 10 doctors here as it was in the middle of rounds and they all stayed while one doctor gave her and IV push of sugar. After that they needed to take her blood sugar for a third time to be sure it was enough. (thankfully it was). Then we went down for the Contrast test. 

B"H it looks like we have avoided surgery. The test showed that everything is where it should be again and there is no leaking into the abdominal cavity. Avigayil is now getting her first feeding in four and a half days. We are hoping that she will tolerate it well and that we will be about to go home soon.

The Current Plan

Avigayil made it through the night without further complication. The current plan is to keep her fasting until Thursday and then repeat a contrast test to see how she is healing. IY"H everything will be good and she will be able to avoid surgery. The doctors are fairly optimistic right now that this is what will happen. I guess this is further proof that she is special as her complication happens in less than 1% of cases. Furthermore, It is usually not caught for days. In her case it was caught right away. This improves the chances for a complete and successful recovery. 

What Happened

We went in yesterday for Avigayil's peg to be changed.

When I heard her crying I thought that we made it. If she's crying she is not in a coma. Then they brought her out and we tried to feed her through the new tube. After 2cc she turned red, her eyes rolled back and I realized I was seeing my daughter in more pain then I have ever seen.

Turns out her stomach separated from the outer wall and she had a bit of tearing as well. This caused the balloon on the end of the peg to inflate in the abdominal cavity outside of the stomach. It is a very rare complication. We  have now been admitted to pediatric surgery.

The surgeon was able to replace the peg last night and hopefully the pressure of the balloon (now properly inside the stomach) will help her to heal properly, thus avoiding further surgery.  We will not know for a couple of days.

Pediatric Surgery

Avigayil's procedure didn't go well. Her stomach separated from the outer wall. She has been admitted to the pediatric surgical ward. A lot will depend on how tonight goes. Please continue to daven for Avigayil bas Rivka Batya.

Update and Request

We have had some major improvements recently. Avigayil ate something for the first time!! She had quite a few Gerber Puffs. While she has not repeated the feat, she occasionally eats one so it's still a big step forward. She is back on oxygen all the time again, but we hope that we will be able to get her off it again soon. The biggest improvement is that she has started to crawl. As you can imagine this is very challenging with all of her wires and cords, but we are working on it together. 

Avigayil is going in to replace her feeding tube tomorrow morning. They are being very cautious and are going to try something different to avoid the problems she had last time, however, we would really appreciate teffilos that everything should go well. Please daven for Avigayil bas Rivka Batya.

Update

It has been a while since my last update and I have good news. For the first time in her life, Avigayil is going without oxygen!    It happened a few weeks ago. During the day she was doing so well that the doctor gave us permission to turn off the oxygen and leave her on just the breathing machine. This worked well for a week or so while she was awake. She still needs oxygen when she sleeps or does strenuous activities like physical therapy. Then Avigayil got sick.
Her fever was very high and she needed the oxygen again.  It took a few days to find the source of the infection but thankfully, they found it and got her on an appropriate antibiotic.  She is doing better now and back of the oxygen when awake. We are hopeful that she will continue to improve.