Email from Miriam (Nov. 20, 2005)

As most of you have hopefully heard, we are still in Little Rock after being discharged yesterday (Saturday). Emma was doing pretty well, though I could tell she was having a little more trouble again- grunting while breathing on Saturday. She also started the day with a long episode of trying to throw up. That is fairly normal for her and due to her reflux. Thankfully they gave her a surgery that does not allow her to throw up. I think I wanted to get home so badly I tried to ignore Emma’s warning signs. I also knew from the results of the heart cath that she would probably continue to have trouble and I just hoped it would be awhile before she had another episode.

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Because Emma was working a little harder than normal they observed her that day rather than discharge her first thing in the morning. She didn’t get worse, even looked a little better so we were discharged around 5:30 pm. Just as we were leaving the hospital room Emma started trying to vomit again. We went ahead and headed down to the front and loaded Emma into the car. She was still refluxing some and then started working herself into another of her breathing fits. She grunts hard with each breath and physically pushes to exhale. We waited about 10 minutes in the car to see if she was going to stop on her own. Finally I decided that I was just being selfish wanting to take her home. It was too risky to head 4 hours back to Siloam with her starting the trip like this even if she did calm down so we headed back into the hospital.

Admissions sent me back up to the floor we were on and the nurses tried to figure out how to undo a discharge. They plugged her up to a pulse ox machine to see how much oxygen she was getting into her blood. She stayed pretty well in the 90 %’s but off and on would continue to stuggle with breathing so they blew a little oxygen in her face after we got back into our same room (now nice and clean)! Emma started calming down and fell asleep. So John and I settled in to watch a couple movies on TV. The doctors said we would observe her through the night and possibly send her home in the morning.

Through the night Emma did fine. But after her 5:00 feed she started refluxing again. After struggling awhile with that she began to work herself back up into the same sort of breathing fit. I called the nurse in and we tried to get her calmed down and also suctioned out her nose but didn’t get much. The doctors were paged when Emma wouldn’t calm down and she started losing a bit of color as well. She was put on oxygen and given a breathing treatment. Her color improved, but she was still very agitated and struggling. They tried for a long time to get a pulse ox reading but she was moving too much. By this time the room was crowded with all sorts of doctors and nurses and respitory therapists. As bad as it sounds, I was actually thankful this happened now when the doctors could see it as they had never actually observed her doing this before. Because they couldn’t get her to improve they transferred her over to PICU (Pediatric Intensive Care Unit).

Once in PICU they did a blood test where they actually read the oxygen levels in one of her arteries. It was too low so they told us that they would have to put her on the ventilator. We had to leave the room for this as it was too crowded and they had to sedate her a bit. They also gave her an iv (in her head because she has been pricked too many times everywhere else). Once we got back in her color was back and Emma was pretty well sedated.

This afternoon they sedated her even more so that they could put a central line in (sort of like a big iv). This took the doctor about 2-3 hours. He tried in her neck first but couldn’t get the tube in possibly becuase she had had a central line there for her heart surgery. The other side of her neck he said the vessel was too small. So then he tried the groin, where sadly she had a central line that they just removed yesterday. He finally got it in. I told the nurse later that he must have had a great deal of patience to do that and she said that she could tell that he had been losing patience. She said that she had to start praying for him and that was when it went in. After it was in the doctor joked that he was going to just leave it in permanently. The central line has 3 ports so it enables them to put medications and fluids into her and also to take blood out for tests.

They have a few theories of what is going on but it will probably require lots of tests and discussions with all the doctors involved before anything is figured out. It could be due to her heart and vein situation or an infection or even that she is aspirating fluid while eating or refluxing. The last one is scary to me because I can’t imagine Emma not being able to eat by mouth at all. It will be extra hard for her to learn later I would imagine.

Anyway there are lots of things to pray about. Thanks for reading this whole thing. It helps to be able to write all the details out. The most important things to pray about are:
-healing for Emma’s respitory problems (especially the residual VSD to close as that may help the situation and can happen naturally)
– Wisdom for the doctors as they try to solve this mystery (pray for some obvious clues to come out)
– For it to be clear if this is a vein problem or not (they can do a surgery to help with the veins but the doctor said it doesn’t always work, so it sounds like something we wouldn’t want them to do unless we were sure it could possible fix the problem)
– Peace and support for me. I am very sad today. I am missing Elise a lot and am sad that our family has to be so broken up through this process. I am also disappointed because Thanksgiving is my favorite holiday and I feel like I am missing out even though the family is coming down for part of it.

And don’t forget to thank Him for all He has done for us:
-Emma is gaining weight like a pro. Even with all her setbacks she was up to 9 lbs. 10 oz. yesterday (up 5 oz. from the day before)!
-That we didn’t head home before Emma started having trouble. I actually have started praying the night before we head home that Emma will show any signs of problems if she needs to stay for any reason. This has been the third time she has just before we were to head home.
-That Emma displayed her problem obviously to many of the doctors here.
-That they were able to get a central line in.

Thank you all. Your prayers are invaluable to us.