Anna is doing better now. She is talking a lot. Creating her own words. She is doing all the funny stuff to make us laugh. Her personality changed a lot after coming from the hospital. We are saying it is new Anna. Started to walk along the couch again. I am not going to work now, so Anna is so happy to have mommy always with her. So now I am running with her all day. We are having a great time together. While working it was very difficult to have a quality time with her.
Her Gtube feed is going good now. For a few weeks after coming from hospital, she was throwing up every morning. Later we found out that the pump was malfunctioning. It was feeding her in a faster rate than the rate we set. We got the pump replaced to a new brand, Kangaroo, which is a lot better than the first pump, Interalite infinity. Since we are running in a lower rate now, she is not getting enough calories. We need to slowly increase it. She still has occasional throwing up, I feel like, it is taking more time for her to digest. Children in her age can drink more than 4 ounces at a time, but she always was able to drink only two ounces at a time in 2 hour interval. We were thinking like it was because of her mouth hurts that she is drinking less. If her throwing up gets worse we need to look into this issue. She has reflux too, for which she is on Prevacid.
Then, most of you might have known that Tripp got his wings. He was very very sick for a long time now. Now he is free of pain. His mom, Courtney is a very nice lady, she is the first person I contacted after we got the diagnosis of Anna. She was very helpful to get started with Anna's care. I am praying for her to cope with this difficult times. Saying goodbye to our baby is very very hard and no mother should go through that pain. I can't think of a life without my Anna. Praying real hard to God to keep my baby healthy and safe!!
Sunday, January 22, 2012
Thursday, December 22, 2011
We are back home!!
After one month of stay at hospitals we are back at home. I am so thankful that I could bring my baby back home. Now each day with her is a blessing for me. I am so grateful to God for selecting me to be Anna's mom. She is such a precious baby. Seeing her smiling melts my heart. She is doing better now.
Now she has a gtube, so at least that way I can improve her nutrition. Now the concern is the airway. Before we knew that she has problem with her airway, but now we know that her airway is this critical. But we are just holding our faith on Jesus and believes she will be okey. I don't want to put her through more pain by doing any treatment that does not promise a brightful and pain free life for my baby.We want her to be happy. If we feel like if there is any treatment that promises us that she will be okey, we will go for it. She went through a lot for one month. Three central lines, two on each side of her neck, one on her diaper area. She lost lot of skin on one side of her neck and diaper area from the tapes they used to secure the central line in the first hospital, blood infection, blood transfusion, a gtube surgery, being intubated etc .... After all the things went through with her, she was not talking anything until two days back. She was not even showing any expression. Was startling in her sleep and was not able to sleep continuously also while she was in hospital. By God's grace she is back to her norm, she started to talk and play now and sleep too. Before going to hospital she liked walking. (cruising along the couch). But now she can only stand for 1 min, aftermath of being in hospital bed for one month. Hope she will slowly pick it up.
I would like to note that she didn't get any skin damage or any harm from her hospital stay at Cincinatti. If you plan to do any surgery on a baby with EB, I would recommend taking them there. There is nothing you have to worry. Afterall seeing people who knows about EB is wonderful. The nurses in PICU there are just awesome.
This past one month is like a new life for us also. Was able to feel the love and support of many people. We got so many new friends who cares for us. And it was also a chance to spread awareness about EB. This Christmas is a special christmas for us. The best gift we could ever get, getting our baby back. To see her talking again, to see her smile again, to see her playing again. Thank you all for praying for her. This is the best gift ever.
You all have a Merry Christmas!!!!!!!
Now she has a gtube, so at least that way I can improve her nutrition. Now the concern is the airway. Before we knew that she has problem with her airway, but now we know that her airway is this critical. But we are just holding our faith on Jesus and believes she will be okey. I don't want to put her through more pain by doing any treatment that does not promise a brightful and pain free life for my baby.We want her to be happy. If we feel like if there is any treatment that promises us that she will be okey, we will go for it. She went through a lot for one month. Three central lines, two on each side of her neck, one on her diaper area. She lost lot of skin on one side of her neck and diaper area from the tapes they used to secure the central line in the first hospital, blood infection, blood transfusion, a gtube surgery, being intubated etc .... After all the things went through with her, she was not talking anything until two days back. She was not even showing any expression. Was startling in her sleep and was not able to sleep continuously also while she was in hospital. By God's grace she is back to her norm, she started to talk and play now and sleep too. Before going to hospital she liked walking. (cruising along the couch). But now she can only stand for 1 min, aftermath of being in hospital bed for one month. Hope she will slowly pick it up.
I would like to note that she didn't get any skin damage or any harm from her hospital stay at Cincinatti. If you plan to do any surgery on a baby with EB, I would recommend taking them there. There is nothing you have to worry. Afterall seeing people who knows about EB is wonderful. The nurses in PICU there are just awesome.
This past one month is like a new life for us also. Was able to feel the love and support of many people. We got so many new friends who cares for us. And it was also a chance to spread awareness about EB. This Christmas is a special christmas for us. The best gift we could ever get, getting our baby back. To see her talking again, to see her smile again, to see her playing again. Thank you all for praying for her. This is the best gift ever.
You all have a Merry Christmas!!!!!!!
Friday, December 9, 2011
Thank you!!
Thank you all for your thoughts and prayers. Anna's extubation went fine. She is breathing on her own. She is safe for now. Don't know how her airway will be long term. Just praying for the healing of her airway. When they took the tube out she started crying, which is good sign that she is breathing okey. We were in another room praying for her. Doctor told me that I can hold her. Can you imagine how happy I was. It was like giving birth to her again and holding my baby for the first time. It was just miraculous. It was surprising for all of them and was so happy. Can you guess who was here to support us with Anna while the tube is taken. The EB nurse Geri Kelly. It was so nice having her here with us. Also the doctors and nurses here are so awesome. My father and uncle drove from Newyork and was with us at that time. My husbands' friend also came from Chicago.
Thanks again all of you for your prayers and the comments. I am sure that it is just the prayers that helped us to overcome this hurdle. Please keep praying for her quick recovery. Thanks!!
Thanks again all of you for your prayers and the comments. I am sure that it is just the prayers that helped us to overcome this hurdle. Please keep praying for her quick recovery. Thanks!!
Please pray for my baby.....
We brought Anna to Cincinatti to do the gtube surgery, here they have the expertise to do surgery on babies like her. She had her surgery on Wednesday. But they found a very narrow airway on her and put a breathing tube to save her. But now they are saying if they take the tube out she won't live. Even if she live , only for hours or days. Other option is putting a trach, but that is not a feasible solution for her with her disease. We have no other option other than taking the tube out and see what comes. Plan is to take it out today noon. Please pray for Anna. please pray for a miracle and her airway to heal. I need my baby back....
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!
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!
Saturday, November 12, 2011
Isn't she just precious?
I was looking through the albums and I found these cute photos of her when she was 14 months.. In the second photo she is answering do you love your grandmother(my mom)? haha it was very funny.. After a few days she forgot to show this....We should have video taped this.... :-)
Why she gets corneal abrasions for two months now?
Anna managed to open her eyes yesterday evening after holding it closed for three days. Her abrasion started on Monday morning. While she was playing, just closed her eyes and cried in pain. This happened for couple of times on that day. But she was doing fine. She must have rubbed her eyes again on Monday night, Tuesday morning was not able to open her eyes, but still managed to open occasionally. From Wednesday not opening at all. Thursday we took her to a new eye doctor who has experience with EB, hoping to get some advice on how to prevent corneal abrasions, even though that doc is out of network of our insurance. Her current doctor is fine in check up and giving medicines, but he won't even hear our questions or give any advice. He is always in hurry and he is not familiar with EB, so he might not know how we are suffering. This new doc gave the same medicines but one extra lubricant to put at bed time.
The reason he think is, in EB, eyes are just affected as the skin. After sleeping through night, if the eyes are dry, it can get stick to eye lid and just opening eyes in the morning can tear the cornea. It seems to be a valid reason, I have read about it for other EB patients. Afterall the protein, laminin332, the one she is lacking is the one that plays a vital role in eyes. She was having this severe constipation for two months now, that from an Ayurvedic medicine we tried to prevent Anemia. But that gave her blistering on her face as well. That also I believe because of skin getting dried up, despite the lubricants we apply several times a day. That may be the same reason her eyes got dried up. She is getting this corneal abrasion only for two months now. And then her usual rubbing might have caused the already teared area to tear some more. So I am thinking that it is not just her rubbing that caused it. Because she has been rubbing her eyes from birth. It used to give blisters to even her eye lid, but never inside her eyes.
I couldn't find the reason of her sudden blister outbreak on her face, her face otherwise was almost fine. I tried stopping oatmeal and wheat cereals, changed formula, but never doubted this medicine for anemia until recently. Usually not much after effects of using Ayurvedic medicine and she is taking other ayurvedic medicines for wound healing and breathing for more than one year without any issues. She got this problem, I guess because of her poor water intake. When we stopped the medicine last week, her constipation went away, facial blistering stopped and it is healing by God's grace. So hope that this change and putting the new lubricant on her eyes will prevent new abrasions.
Corneal abrasion is a worst thing to happen for Anna and to us also. I need to carry her rocking in sleeping position all day and (several times at night too). She won't lay down or allow me to sit either, I am totally exhausted after 5 days of carrying her, despite my MIL carrying her sometime for me to take a break. But after seeing her opened her eyes and do her usual plays just melt my heart. Mommy's sweet baby..
She is still watering from her eyes. Think it will take a couple more days to completely heal. Yesterday my husband and me were taking shifts at night to guard her from rubbing again. God, she is rubbing her eyes a lot. I hold her hands so many times.This is after giving Atarax at night for itching.
Praying to end this corneal abrasion episode. This is one of the worst thing to happen in EB.
Thanks everyone for praying for my baby!!..
The reason he think is, in EB, eyes are just affected as the skin. After sleeping through night, if the eyes are dry, it can get stick to eye lid and just opening eyes in the morning can tear the cornea. It seems to be a valid reason, I have read about it for other EB patients. Afterall the protein, laminin332, the one she is lacking is the one that plays a vital role in eyes. She was having this severe constipation for two months now, that from an Ayurvedic medicine we tried to prevent Anemia. But that gave her blistering on her face as well. That also I believe because of skin getting dried up, despite the lubricants we apply several times a day. That may be the same reason her eyes got dried up. She is getting this corneal abrasion only for two months now. And then her usual rubbing might have caused the already teared area to tear some more. So I am thinking that it is not just her rubbing that caused it. Because she has been rubbing her eyes from birth. It used to give blisters to even her eye lid, but never inside her eyes.
I couldn't find the reason of her sudden blister outbreak on her face, her face otherwise was almost fine. I tried stopping oatmeal and wheat cereals, changed formula, but never doubted this medicine for anemia until recently. Usually not much after effects of using Ayurvedic medicine and she is taking other ayurvedic medicines for wound healing and breathing for more than one year without any issues. She got this problem, I guess because of her poor water intake. When we stopped the medicine last week, her constipation went away, facial blistering stopped and it is healing by God's grace. So hope that this change and putting the new lubricant on her eyes will prevent new abrasions.
Corneal abrasion is a worst thing to happen for Anna and to us also. I need to carry her rocking in sleeping position all day and (several times at night too). She won't lay down or allow me to sit either, I am totally exhausted after 5 days of carrying her, despite my MIL carrying her sometime for me to take a break. But after seeing her opened her eyes and do her usual plays just melt my heart. Mommy's sweet baby..
She is still watering from her eyes. Think it will take a couple more days to completely heal. Yesterday my husband and me were taking shifts at night to guard her from rubbing again. God, she is rubbing her eyes a lot. I hold her hands so many times.This is after giving Atarax at night for itching.
Praying to end this corneal abrasion episode. This is one of the worst thing to happen in EB.
Thanks everyone for praying for my baby!!..
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