Thursday, March 24, 2016

Some Good News - March 24th, 2016

When grammy and I arrived today, the nurse told us that your X-Ray showed dilated loopiness in your belly today, but they are going to continue to watch you. They are advancing your feeds again. Since you have grown, they increased your full feed from 19 ml to 25 ml. They were going to fortify your milk to 24 calories starting today, but they are keeping it at 22 calories for now.
Hematology came to speak with me about your blood clot. She said that she wants to start you on Lovenox, but the neurosurgeon does not think that it is worth the risk of bleeding in your head. She said that if he does okay the meds, then you would be on it for 6 weeks minimum, and 12 weeks maximum. (If you come home before you are off of the meds, mommy and daddy will have to give them to you when you are home. She said they would teach us how to give you the meds, and how to identify signs and symptoms of blood clots.) You would only have an ultrasound after 6 weeks if the meds are started. I asked how they knew that the clot didn't move, and she said that once you are on the meds, they know that the meds will stop it from traveling. If you are not going to be on the meds, they will do ultrasounds every few days to make sure that it doesn't move at all. If they see any signs or symptoms of the clot moving, they will do an ultrasound right away. She said that the clot could break off and travel to the lungs and cause a pulmonary embolism, so that is why they will do a lot of ultrasounds. Right now, she said they will chalk the clot up to having a PICC line in, having surgery, and having your transfusion. If you happen to develop a second clot, they will then do blood work to see if you have clotting issues. She also said that clots are common in preemies.
The neurosurgeon came in to check your head and he said it felt good. He said that since you haven't had to have your reservoir tapped very frequently, that he thinks there is only a 20-30% chance that you will have to have a shunt. At Virtua, they said that the IVH in your brain could cause an array of disabilities (I remember crying so hard that day) so I decided to ask the neurosurgeon what he thought in regards to disabilities. He said that he doesn't think your brain was affected much, so he is optimistic about you not having a disability. The developmental specialists were standing in your little room and jumped in to say that preemies and boys are at risk of disabilities. She said 1/3 of preemie boys have a severe disability, while others have less severe disabilities. I asked the neurosurgeon about the bleeding that you had and what effect the Lovenox would have on you. He said since that was an old bleed, he isn't worried about that, but he is worried about when he taps your reservoir and blood getting in between the skin and the skull. He said if that were to happen, it would be much harder to do your care. He is hoping that when you have an ultrasound tomorrow, that the clot starts taking care of itself.  If it gets larger, hematology and neurosurg. will have to speak again about the risks. Please pray that it does not get larger!
The developmental specialists spoke with us about starting physical therapy. They are going to come around next week and speak with us about your PT. They most likely will start next week. They also spoke about your therapy when you come home and if you go to CHOP for therapy, they follow you to kindergarten, and if you go to Virtua, they follow you until you are 2 or 2.5 years old. They would talk about the differences in the programs once it came closer to you coming home. They said they are trying to align the programs, but right now they are a little different.
I would say that today was a good day. A lot of ups and downs, but another day closer to you coming home. We love you! See you in the morning buddy! Stay strong!!