Maia had another rough night. I slept in the sleeper room until a little after 3am, then relieved Mark so he could go home and get some sleep. Maia woke up around midnight (from yesterday's Ativan). She alternated between brief periods of rest (less than 15 minutes) and screaming. Around 3, they gave her some Morphine and she calmed down briefly. I tried to go back to sleep, but every time I laid down on the couch Maia began to yell. I finally just pulled a chair up next to her and held her hand. She still had the agitation, but it seemed to be shorter in duration. This lasted until about 7:30am.
Dr. B, the neurosurgeon, came in then. He said that Maia's agitation is not unexpected given her brain injury and surgeries, that we may just need to "live through it" because to continue giving her Ativan could prolong the symptoms. So, I kept trying to reassure Maia and comfort her. Just before 9am, she was inconsolable. The medical ICU consultant came in to see what was going on. I explained to her what Dr. B had said. She basically said, "Too bad. We are not going to have her this upset. She's getting Ativan and if that doesn't work, we will give Maia morphine." Within five minutes of getting the morphine, Maia was OUT! She has been since that time. There was one brief period where it looked like she was having pain, but just couldn't express it because of the sedation. If I see that again, I will ask for the morphine.
The neurology team came in after Maia was sleeping. Dr. N (the consultant, a.k.a head doc) looked kind of skeptical when I told her what Dr. B had said. She seemed to agree that keeping Maia comfortable and less agitated was preferable. Their team is concerned about ongoing seizures (invisible) so a 24 hour EEG monitor is being placed right now. I'm glad Maia has the Ativan in her system because this would be a miserable process otherwise.
From an infectious disease standpoint, the antibiotics are being continued. They feel that another week of therapy is warrented before the internal shunt is placed. The plan is for next Wednesday if all goes well. Because the abdominal CT scan didn't show anything abnormal, they really have no idea where Maia's infection came from. We may never know.
We are day 10 into this journey and I have to admit that there are definitely moments of discouragement. The lack of response/interaction is probably the most difficult for me. I hope that my sweet girl knows that I am here, that she has some reassurance because she is able to hear Mark's and my voice. As those of you who have followed my blog for a while know, I don't like uncertainty. Tell me what's going on, I'll have my little meltdown, and then I can get up and deal with it. But living in limbo is tough.
I miss my precious Matthew. I miss home, my bed, time with my sweet hubby. I miss our daily life. Days here in the ICU blend together and I feel a little out of sorts. Not having an end in sight is also difficult.
One of the staff commented to me this morning, "You are such a strong mom for Maia. You have been right by her side, even through all these difficult moments." Oh my goodness, my mouth dropped open. Where else would I be? God has given me the privilege of being mommy to this beautiful angel. The first year of her life was spent in a hospital alone. It will not happen now. She has a forever family and she is a cherished child. God knows the plans He has for her, plans to prosper and not harm Maia, plans for hope and a future!
I remind myself that God sees the BIG picture. My perspective is pretty limited. I have no doubt that there are things going on that are beyond my comprehension in this situation. Some people might ask why a compassionate God would allow this to happen. I don't pretend to understand why this is Maia's journey. If there was anything I could do to trade places with her, I would in an instant. I do trust that IN SPITE OF, God is with Maia. He is with our family and friends who bear this burden with us. He has placed Maia on the hearts of many prayer warriors around the world who are lifting her up to His throne. We are blessed and humbled by your petitions on Maia's behalf. God knows each day, minute, second of Maia's life. This is not a surprise to Him. He is faithful, He will sustain us.