This past week has been one of the hardest of my life. We got a call from the ophthalmology team at CHOP on Wednesday after following the other boys follow up appointment at St. Chris. They told me that Abby has moderate to severe visual impairment. The visual she sees through her eyes takes too long to go from her eye to her brain and back again. We all have a 15 second delay bug Abbys is MUCH GREATER. On some level she is blind. Most of this has come from the oxygen requirements she needed since she was born. With this new information, doctors feel it is best that we go ahead with the lung reduction surgery they have been talking about to remove part of her damaged lungs. This is a HUGH risk but so is letting the high levels of oxygen damage her brain anymore. Today I spoke with anesthesiologist who will be managing her during and following surgery. Her pain is supposed to be quite significant and I am so worried that the medications wont work because even severe paralytics have not worked for her nor has other pain management medications. She did assure me that they will not be afraid to try other things for her. I am so scared to see her having to be paralyzed again. The surgeon doing the surgery is the same one who did her g-tube so I have met him and he is really good. The nursing staff that will be with her is great and we are getting better known on the PICU floor. Id be lying if I didnt say I was scared to death for my baby girl. This surgery is super risky for a baby her age but she is healthy and strong right now and they are hoping it may even get her off her ventilator all together eventually and if not that it will at least bring her peep and vent settings down enough that she can come home. I of course have also been doing research on the eye disorder and I want to speak to them about putting her on pharmaceutical vitamin E to help with the free radicals that are destroying her vision. This is experimental and the insurance may not cover it but I will do whatever I need to do to try this if if will help with her vision. If she becomes legally blind I will work with her but if there is any way I can prevent this or prevent it from getting worse, I will do whatever i can do for my baby girl. She is going to need a lot of care and attention when she does come home but as proven with my other children Hugh and I will go to the ends of the earth for our children. We just want to give our girl the best shot at life. Im scared to death for her. I dont want her to die but I dont want her to have no quality of life either. With the news of her sight, and the thought that the oxygen doing more brain damage, I realized we need to get over our own fear and trust that God has put us on this path and we will follow it. This of course could not have come at a worse time since the 29th will be 5 years since George left us. Hugh has to work on Monday so I will be facing this surgery alone, well I would have been, but God bless the nursing agency NBN and the woman who has been checking in on her, she is going to sit with me since no one in my family is really up to this type of challenge. She has been there for me on numerous occasions that I cannot thank her for. She too had a preemie like Abby and also lost a child to other causes like we did. I know that should anything good or bad happen, she will be there for me and I know that is what I need. I had asked our deacon but they are busy and will visit us and Abby tomorrow. People have asked what they can do and if you live locally you can make a meal and drop it off. If you arent, Abby LOVES balloons but can only have Mylar. She is also allowed food and flowers in her room. She is of course our ladybug and can also use clothes size 6-9 months. Edible arrangements are always good so that we have food in the room even if we dont want to go anywhere or if people come to visit. Gift cards are always welcome since we will be making more and more visits this week and next until she is doing better. Also if you would prefer to do something for the other kids that is welcome too. I have posted info on where to send this or how to sign up to bring meals if you look down a few posts. If you would like me to send you me a request for info I will gladly send it to you. Please dont worry if we dont post for a while. Tomorrow I am headed up to see with her and spend as much time as possible just in case something were to happen Hugh and I want to spend as much time as possible. I will be spending the night tomorrow night and Hugh will go to work and my parents will get the kids to school thank God.!!! Cards are a huge help too or messages left here, I check them all because I need the positive feedback to help me get through the roughest parts of this whole thing.!!! Tomorrow as many of you go to church please ask your parish to pray for her and the success of her thorocotomy(lung reduction surgery) If there is anyway you can be here for Hugh and the kids I would be so grateful!!! Hugh usually throws himself into his work and the kids. School helps the kids keep busy but they tend to act out and I plan to tell the staff but it is so hard for me to b here for them and then to be there for Abby. I know Abby will need me most so I just keep praying to God, and sometimes I dont even know what I am praying for other than for him to know my heart and know what I need because right now I dont even know what I need other than my daughter to live and get better so she can come home!!! Please pray even if it is for something you dont even know what you are praying for. I know God gets it!!!!
Posted on: Sun, 25 Jan 2015 02:05:09 +0000
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