Today was another very eventful day for us. Ali and I woke up and went to spend time with Brady after breakfast. His breathing has really improved from yesterday. He was breathing almost 100 times per minute and now is down to 60. We're hoping that he can move off the CPAP machine and move to a nasal cannula in the near future.
Ali did some Kangaroo time last night and also did some this afternoon. The nurse initially told us not to do it because Brady was doing so well with his breathing and was finally settled down.
It's hard for us as parents because we want Brady to move his limbs and act like a baby. The nurses really want him to remain calm and continue healing. We talked to the doctors during rounds and they assured us that we should do Kangaroo time whenever we want. Brady likes to snuggle right into Ali and both of them usually fall asleep. Ali is exhausted from the surgery, pumping milk and the medications. She continues to amaze me with her strength and courage.
We were initially told that they would do an EEG test at noon and we would meet with the neurologist at 2 p.m. We've come to learn not to plan our day around what they tell us.
I left Ali and Brady to go and meet Ali's parents and sister down in the lobby. When I brought Jerry and Rita up to the NICU, Ali was visibly shaken. Brady was pretty jittery and the nurse was concerned it might be a seizure.
Brady has been on heavy doses of Phenobarbital to help prevent seizures. They think he might have had one seizure on the trip from Ridges to Amplatz. This is always a concern for anyone with brain injuries. For the first few days at Amplatz he had probes on his head connected to a Brain monitor. They don't believe he has had any seizures since he's been there. They have now removed those probes and we get pretty freaked out when he shakes. We have been told it can be natural movements, withdrawal from medications, or just his excitement from hearing our voices and feeling our touch.
At the same time, they are slowly reducing all of the drugs to see how he will act. They also wanted to reduced the Phenobarbital before the EEG to get more accurate readings. We talked to the neonatologist and she doesn't think he was having a seizure today, and she promised that they'll continue to monitor his movements.
We left Brady at 12:30 and the EEG was nowhere in sight. Ali hasn't been feeling very well the past couple of days (minor bleeding around her C-section incision, swollen feet, troubles urinating, etc.) so we walked to an adjacent building to see if someone could look at her.
We were initially told that there weren't any openings until 2:30 and we told them that we needed to be back for the neurologist meeting. We were fortunate to run into my cousin Emily who works there. She helped us connect with a doctor and also found us a wheelchair (that came in very handy for the rest of the day).
WARNING...THIS PARAGRAPH WILL BE GRAPHIC...We ended up seeing a doctor and she began by placing a Q-tip into Ali's open wound near the end of her incision (Ali had staples on Tuesday and had them removed on Friday). The doctor said there were air pockets and it wasn't going to heal on its own. She began to open the entire incision. It opened to about the size of a banana. As she opened the incision, she kept asking Ali about her pain. My wife is on pain medications, but she wasn't given any local anesthesia. It was absolutely amazing to me that she was opened back up without any complaints. We're thankful that the area wasn't infected at all. The doctor cleaned the area and began showing me how to treat it over the next three days. Ali will receive stitches on Thursday. Her body will be open until then. Crazy! And I get to be the lucky one who changes her gauze every morning and evening until Thursday. We've learned that wound needs to heal on the inside for three days before stitches. Of course, as I'm going through instructions, the NICU called my cell phone. The neurologist now wanted to meet with us and wouldn't be able to change his schedule. I told them that my wife was opened up on a table and we need a few minutes to gather ourselves (literally and figuratively) before we could get there.
They handed us some medical supplies, we hopped in the wheelchair (thanks Emily) and hustled back to the NICU. It was now 2:30 and we hadn't eaten since 8:30 (not good for my diabetic wife, but we're at the mercy of our doctors' schedules). It had already been a long day and both Ali and I were ready for the worst.
The neurologist said he was pleased with the EEG. Brady had a lot of normal activity in his brain. We have been warned several times that it's really hard to predict how a brain injury will impact him 10 years from now, but it was such great news to hear. The neurologist said the small dark spots on the brain really don't concern him at all. Usually an infant's brain will reroute around them. There is a larger one on the left lower left side that could cause problems. It's an area that controls vision. The neurologist said Brady won't be blind, but he might have some problems with depth or peripheral vision in one eye.
With any brain injuries, there is always the concern for some form of cerebral palsy. The neurologist said the next week will tell us more based on Brady's basic movements (breathing, sucking, moving limbs, posture, etc.). We've also been told that we'll learn more as we reach milestones (crawling, walking, talking etc.). It's very frustrating as parents to not have answers, but we're ready for whatever the future holds for Brady.
Ali and I checked out of the boarding room and headed home to spend the night at our house with Ava and Casey. It was great to read them stories and tuck them into bed. We're so thankful for our family for helping Ava and Casey have some normalcy over the past week. In many ways it's been the longest week of our lives, and in other ways it's flown by so quickly.
It's hard to be so far away from Brady, but we really trust the doctors and nurses there. Ali is planning on visiting every morning and I will meet her there after school and a quick visit to the weight room. We can't wait for the first time we have our family of 5 together and Ava and Casey can finally meet their brother.
Once again, we're so grateful for all of the offers of help and words of encouragement. Please continue to pray for Brady's health and recovery.
"In prosperity, our friends know us; in adversity, we know our friends". - John Churton Collins
With love,
Tyler, Ali, Ava, Casey and Brady
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