February 22, 2013

A whole lot has happened in the past 24 hrs for our lil family both for me medically, emotionally, and mentally; for RJ medically; and for Robert mentally and emotionally. While in the hospital I had had a Neuro consult for some neck pain issues, but my neuro exam was normal. I followed up with the same Neurologist a couple weeks ago in the office and basically the same neuro exam was normal. When she put the tuning fork to my head there was slight decrease of hearing in the right ear, so she ordered a MRI/MRA of the head. We thought it was a lil over keel, but were up for doing what was necessary. I had those images taken yesterday morning, which by the way is the loudest thing ever!!!! I feel so sorry for any patient who has to get one of those images completed now. Anyways, around 3pm my Neurologist called as I was leaving the NICU in a separate car than Robert. I was already emotional from leaving RJ and Robert was being the supportive husband and was staying on the phone via speaker till I got home. I had to quickly switch over phone calls for the "859" number on my screen. My Neurologist had me pull over and let me know that they had found a dissection of a vessel in the right side of the head and a blood clot. All this stems from my preeclampsia/pregnancy. She wanted me to come in for more imaging, CT angio of the head/neck. I am having that image taken this morning at 11am. There is definitely treatment for this, so I don't want anyone to be freaking out, we just need lots of prayers that I can be treated at home on oral meds versus the hospital on IV, then oral meds. I can't be sick right now, I need to be there for our lil boy.
Yesterday RJ and I did not have a good kangaroo time. He was fussy and very agitated. He just couldn't seem to get comfortable. They were having to go up on his oxygen as well. There were times when he seemed to find a good spot and would sleep a lil. I still enjoyed having him close to my body. Near the end of our session I heard some burps which turns out was him spitting up milk. His feeding tube had become partly dislodged. Baby's are really good at protecting their airway and clinically he was letting us know something was wrong. His heart rate had dropped a few times alerting the RN to put RJ back in bed to see what was happening. They later got a chest X-ray and labs. Respiratory wise they were a lil worse. We went back to see RJ for his 8pm cares can he was fussy and agitated again. They had to continue going up on his oxygen. We helped settle him down and thought all was going to be fine till morning. Then around 3am we got a call from the NICCU saying he had to be intubated again and repeat labs and chest X-ray were much improved. He didn't even fight having the tube replaced. The PA stated RJ was resting peacefully and doing much better. To cover all their basis they are doing a septic work up, drawing labs, starting prophylactic antibiotics. Medically it was the right thing to do. He had been fighting for so long and his lil lungs just needed the extra support. The docs and nurses were surprised he extubated so quickly after delivery and was able to stay off it for this long. It feels like a setback in the progress we were making, but we just have to remember his lungs were still really sick. So, for the next 30-45 min I was pretty emotional. Finally both Robert and I were able to fall back asleep.
I'm not sure how our time will go today, so just wanted to update everyone and ask for EXTRA prayers... I really need to be there for RJ and for my husband. It's a huge load he has to carry watching his family and not having any control. Please pray for healing, strength, and peace.