Well, the posts have been less frequent as there has been more to do and more visitors at the hospital this weekend. That doesn’t mean that there was no news, so here it goes.
On Saturday morning Raena had her ventricular drain removed. This was the tube that drained fluids from her brain when her ICP level was too high. They had monitored her drainage for a few days and after no new fluid drained out they felt it was safe to remove the stint. This was very good progress in her battle to recovery. With the ICP levels staying below 20 with her ventricular tube clamped down the last few days, that meant her body was able to move the spinal fluids on its own even through her bouts of high heart rates or blood pressure. She is starting to look more “normal” without all these tubes and bandages around her. I will post a picture a little later today.
She also had a CT scan done on Friday to show the swelling has definitely gone down. There is still a slight bit of blood left from her episode, but that is also going down nicely. Through her brain decompression, she has very limited movement in her left arm, her dominant hand, but hopefully when she is off all of these drugs and monitors they can start to rehabilitate her and get her left side back to normal.
The head doctor was in who created the whole pediatrics ICU this weekend which was very comforting as he would look at her charts and have the nurses make certain adjustments to get her levels to where he thought they needed to be in order to get her off the ventilator. As you have read, they tried to extubate her last week but her upper respiratory tract was too swollen and her muscles too weak to allow that to happen. They have been giving her decadron, a steroid, to help with her inflammation in order to give her the best chance of removing this breathing tube. They have also weaned her off of the Versaid and she is only on a Fentanyl drip for pain and an as needed bolus to help manage pain when it gets too high. Raena also responds very well to Ativan for anxiety and rest when she needs it.
She is still able to communicate with her right hand by doing thumbs up or a few other gestures that she has learned. It really helps to know when she needs to be changed or when she is in a lot of pain instead of trying to guess all the time. My hardest issue is I sometimes ask two questions at once, which is really impossible to do when you are only getting a thumbs up or down signal, so I am getting better at single subject questions 🙂
Saturday night was a sleepless one for me, I awoke at 2:45am when she needed me and after that I think the warning alarms on her monitors kept going off inadvertently so it kept me awake the rest of the night. Then when I thought I would sleep, it was shift change time and xray time etc. Saturday was also a stream of constant visitors which is nice, Raena appreciates it as when I let her know who is here, she gives a thumbs up! Kaylee also got to visit this weekend and that put a smile on Raena’s face which was so nice to see. Kaylee’s friend Ally also came and between the two of them, they managed to remove the nail polish off her right and and repaint it, altho I don’t believe they got to the left one lol.
Josh and Elaine came by on Saturday so I could try and pick up my dry cleaning so I could have clothes for the week and run out to get Raena a new Easter animal, she loves BeenieBoos so that is what I got her. I was also able to get a couple small things and stick them in Easter eggs for some of the nurses that have been helping Raena through this journey. It was nothing big, but I am hoping the gesture was well received! The funny thing that happened on their watch is that Raena ended up waking up and using a new sign that they didn’t know what it meant. They called me and Nikki and neither of us knew either, however, they were able to calm her down by massaging her leg and reading her more of Harry Potter, which seems to really help her anxiety levels when they shoot up. I have enjoyed the book as well, although it does get a bit tongue tying at times with the way the characters speak.
I thought Sunday would be a quiet dull Easter in the hospital with her, but my buddy Aaron came by in the morning which was an awesome surprise! He brought me breakfast and best of all a recorded message from his 2 girls for Raena. The hospital gave Raena a very nice Easter basket filled with animals, coloring books and a cool sun bonnet as the basket. It was very touching for the hospital to do such a thing for the kids that are staying there on Easter. Throughout the day, visitors came in and out and her Aunt and Uncle from Indiana even came in for a bit to say hi. A friend of mine even kept me company via text messages as we watched a show together from her home state in Alabama. All in all, Easter in the hospital wasn’t so bad!
Raena got a lot of rest on Sunday which was good. Kaylee was able to visit again, and while there it seemed that her and Ally did not ever want to leave. Raena also got a new line put into her left hand to help draw blood because something was not quite right with the other line, but with careful work from the nurses and the doctor, they were able to get the right side to work as well. They seem to have a good plan for Raena to get off the ventilator, altho it doesn’t sound like today will be the day. The operating room is too crowded and they want the ENT and an anesthesiologist to be there with her when they remove the tube. The reason for the OR is simply to make sure everything goes right and she is ready instead of just taking it out to test her. They have more equipment in the OR to help facilitate this process.
The ophthalmologist has not been in to see her the last few days, but her eye does seem to be getting better. The ulcer is definitely reduced and looks to be almost gone. Hopefully this will all return back to normal as well.
It was a busy weekend as I help keep Raena calm through all her changings and sit by her side and read her Harry Potter when she is up for it. I also keep track of all her medications and hold her hand through her episodes of pain. Nikki and I keep in communication about how she is no matter who is staying with her so we know what to expect when it is one of our shifts. I am sure I forgot something in this update with it being a busy weekend, and if I recall anything that isn’t in here, I will definitely shoot out another update!
Thank you again to all the people who are personally visiting, calling, texting and emailing. All of the donations of food and money have been amazing which any of you can also track on the gofundme page created by one of Raena’s friends. The visitors are appreciated by Raena and definitly by me as it does get a bit lonely at the hospital at times. As those who know me know I don’t like being by myself a lot! Altho with today’s digital age, I am able to communicate with many via text and messaging apps. So again, thanks for helping me keep my sanity through all of this! Another update should come tonight…
Thank you for the updates. We are following closely Raena’s progress and the specificty of your updates helps with our prayers for her recovery and for the family during these difficult and trying times. I am so lloking forward to meeting her at the wedding in May and giving her a big hug!
Your updates are truly informative and inspiring just in knowing how many people are sending their prayers, thoughts and words of encouragement. The nurses there sound amazing – they are truly loving caregivers. We continue to keep you all in our prayers and look forward to Raena’s progress
Please tell Raena Nikki, Bri and Uncle Bob say Happy Easter and we miss and love her so much. We all read the updates whenever you post and it’s amazing to be able to feel like were there for Raena and the rest of the family when were all the way across the country.
I think about Raena all the time and always praying for her. Love and Kisses!!!!!!