Update for baby girl Makinley Rain, Nobody Fights Alone Makinley Rain We were told Her brain surgery went well and they removed the cavernous malformation and found another one in the same area and removed that one too. Her eyesight was back to almost 100% right after, where as before she lost all of her eyesight prior to surgery from edema where the bleed occured. Spent 2/3 days in the picu (pediatric ICU) for recovery and to monitor the surgery site for bleeding. She ran a fever which is not uncommon for evasive surgery. Her blood pressure got really high (not normal) 175/87 ish was the highest spike. They put her on a continuous 24 hr drip of nipride and got her stable. Next day cat scan was good and there was no bleeding. They weened her off the blood pressure drip and she was stable and still had her vision not 100% but really good they said it could take some time for get back to normal. Still a slight fever but since her immune system is compromised and basically gone this is what the body does for protection and with all the chemo her temp fluctuates more than normal. But all was stable other so they moved us back to the oncology floor everything was fine that day and her moral was good. That night I woke up as we always do throughout the night checking on her and her vital machine alarm goes off throughout the night. I saw her stats and her heart rate was high 158 bpm and her oxygen % was much lower than normal 90%. I felt her and she was burning up she was 104.2 and they already gave her Tylenol an hour before as what I was told. Asked what her labs were and come to find out her platelets were below what they wanted to keep them at and was told they couldnt do a transfusion until her temp dropped. This is probably what caused the brain bleed as platelets are clotting factors and keep us from bleeding to death if we get cut or from just bleeding out for no reason. I stated to cool her down with wet washcloths on her neck and hands to expedite the process, so they gave her the transfusion about an hour later. Later that morning she seemed ok and we were snuggling on the couch as her head hurt (which we were told headaches after brain surgery is normal) and I was showing her all the fb post and showed her that even Colt Ford sent prayers and shared her funding page youcaring/makinleyrain She said thats cool, but didnt look quite right. So I asked her baby are u ok and she said yeah and I say what do ya think about what Colt said? She said I dont know. I said u dont know what he said? She said, I cant really see it. So I said has ur vision gotten worse from yesterday? (as it was really good) She said yes. So I went to the nurses station and told them her eyesight is worse and her head is hurting. They ordered another Mri (stat/rush) which revealed that she started re-bleedind in the same general area where they removed the cavernous malformation(s). We were told by her having this surgery this would fix her bleed and would not bleed any more as they were removing it. They didnt know why or the exact location except for it was in the same area of the evacuation. So now were back in picu as they wanted to watch it over the weekend as they said at this stage they do not want to open her back up as it can do more harm than good. Saturdays cat scan has shown no additional bleeding and her headaches are not as bad nor as often. Her eyesight is still not good but has slightly improved a tiny bit, and is probably due to not bleeding and less edema in that area. They said it can take a few months for the body to reabsorb the blood and her eyesight should continue to improve over time just not sure how much and how long. Now since she gets regular spinal taps with chemo in her spinal area, with her having edema in that area can result in HUGE HUGE complications if they attempt to do a spinal tap. Because she still need her spinal chemo for a long time tomorrow they are putting a mmynoma aka an access port in the top of her head for her spinal chemo. During this procedure they will also remove some of the fluid for further testing to be sure her central nervous system has not been affected by leukemia. Poor baby has been through so much and still the road is very long ahead of us. We hope to get excepted to National Institute of Health in Maryland for immunotherapy aka T-cell replacement as we just signed the release of all her records to then today. Continued Love, Generosity, Prayers, Thoughts, and Positive Energy for Makinley please. Also please please keep asking all your friends to continue to ask all there friends to share her funding page too please. If all goes well with any more complications we will be in the hospital for another 10- 12 weeks which is 2-1/2 - 3 months. Thank you all again we appreciate everyones love & support! ~Hick Life Strong - Nobody Fights Alone! youcaring/makinleyrain
Posted on: Mon, 26 Jan 2015 02:13:26 +0000
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