Friday, December 2, 2011

We are in the hospital

Anna got admitted to hospital last Tuesday. She got corneal abrasion again and this time it didn't heal after 5 days. Also she was in such a pain that she couldn't eat anything. She just wanted us to carry her. I called her pediatrician to check if there is any pain or sleep medicine that we can give her to ease pain and not rub on the eye more. Doctor asked us to come to her office and we had a lengthy and tearful conversation about what is happening with Anna and how to save her. She had contacted all her other doctors, dermatologist, pulminologist, pain management and they all came to a conclusion to admit Anna to a hospital where she will get special care for pain. Doctors were saying like the pain of corneal abrasion is more than the pain of childbirth or a broken bone. Just imagine that..

At hospital she soon started to get all the pain medications to make her sleep better. She hasn't been sleeping well for weeks. But being so sleepy from the medicines she hasn't been eating much. All of her doctors came in and start to talk about G-tube. And finally agreed to go for it. But she has been dehydrated and so tired by that time and was not in a stage to do G-tube surgery on her. And they moved her to PICU where they put a central line on her main vein near the diaper area. She got fluid for hydration, sedatives, pain medication and TPN for nutrition through that line.

After few days she got blood infection through that line and line also stopped working. She got the staff infection. Then they put the central line through her neck. The infection shook her entire body. Her blood count got reduced suddenly(anemia) and then her blood became thin means it won't clot fast. And affected all minerals in her body. The area where she got infection and that entire leg got swollen. She stopped urinating. Then they put foley line into her bladder. And then was not producing enough urin. Her potassium was very high. Which means it will affect her heart functioning. They gave medicine to produce urin and she started to pee a lot then and they took the potassium away from her TPN. The next day her potassium is
very low, so they gave supplement for that and some other minerals and changed TPN to have
potassium back. Also vitamin k to solve blood thinning. She also got a blood transfusion to
fix her low blood count.

Her breathing, blood pressure and heart rate everything was irregular because of the heavy
doses of pain medications she is in. Some days we were frightened to see how much she is struggling to take breath. And doctors were so afraid to do something on her. And doctors were suggesting to air lift her to Cincinatti EB center. But by God's grace she overcome all those hurdles. Then came the discussion of g-tube again. We were thinking something along the route of not intubating her for the surgery. If the breathing tube goes in and when they take it out, she may not be breathing because of her skin on her airway gets peeled off and it get closed. We were thinking about interventional radiology to do that with the assumption that it need just the sedation through medicine. But in this hospital they don't do that with an airway like hers. And also, since she has airway problems already, they will do the surgery only after putting the trach on her neck. Ya, g-tube comes as a combo for her. So we decided not to do g-tube here. Whatever happens we are not going to do the trach. If we do that it is a long term suffering for her. It was very hard to take a decision. She is way below the growth chart. And now we know the only thing that will extend her life time is getting a g-tube. If she is not taking enough by mouth then she is going to get malnourished and the rest u know. But going for a trach is not an option either. So it was like we are in between rock and a hard place, as her nurse said. We will look for places where they can do surgery without compromising her airway.

So many people are praying for her. Lots of friends came to hospital to give us support. I can
see a lot of improvement on her skin. God is doing a lot of healing on her. Thank God. And I
can't say how much thankful we are for your prayers. So many thanks for spreading the prayer request.

We are staying in the hospital as long as her central line stays in. So that she will get enough nutrients for wound healing and also for healing of her eyes and airway. Because we are not sure how much she will eat when we go home. Her corneal abrasion is not healed yet, both of her corneas are teared up almost completely. Yesterday doctor placed some contact bandage lenses on her eyes hoping that it will help to heal it fast. Hope it will stay there at least for a few days. Please keep Anna in your prayers. Also does any one know any babies with junctional EB with airway issues who got g-tube done without intubating them. If so can u plz email me your experiences or a contact number. I would really like to talk to someone about this. Thanks!


  1. g-tube surgery is very short, like 20-30 minutes. she wouldn't have to be intubated very long. but I don't know anyone with JEB who has a g-tube that didn't have to be intubated. Just make her anemia is better before the surgery. If her blood counts are too low, her heart could stop during the surgery.

  2. also, if you are on Facebook there are MANY EB groups you can ask questions this these and get advice for other parents of JEB kids.

  3. Thanks Sara. Anna got blood transfusion and her count looks better now. Only problem is we are afraid of putting a breathing tube down her throat. If it irritate her airway it will affect her breathing. Airway is a serious issue in babies with junctional EB herlitz. I will check on FB.