Today Meghan brought Grandma W. to visit. She barely acknowledged Evan and went directly for the television. In her defense, I think he was sleeping. After a little visit, lunch, and a bathroom stop Meghan wanted to go outside to the playground here at the hospital. She was so sweet asking me to join her. Gma, Daddy, Mommy, and Meghan all got some fresh air while Evan napped.
The day was either very quiet or filled with Evan's frustrated cries. We were excited when he could finally have some juice. Can I let you in on a little secret? When a baby is getting IV fluids AND juice, be sure to change the diaper BEFORE giving him more juice, especially if he's going to be in your lap! I was feeding Evan his second bottle when I felt a lot of wetness. Apparently my jeans couldn't even soak it all in. There was a little wetness beside me on the chair. Oops.
So this morning we were told that Evan might be able to go to the "floor" which means a regular room by the afternoon. We were so frustrated because NO ONE talked to us about this all day long. Of course he could have been checked on when we were at the playground, but no information came our way to let us know their thoughts. We asked several times to talk to a doctor. Eventually I went out to the nurse's station and asked again before Derek went home for the evening. We were told that there just are not any rooms available for Evan on the regular floor. They don't even have any spare rooms in the PICU. So that means Evan is well enough to leave the PICU, but just can't yet. We were glad that we finally got the three minutes of their time to explain that to us!
Derek and I agreed that our previous two stays at this hospital (one with each child, plus several ER visits) were better than this one. (We had incredible care with Meghan during her SVT stay and with Evan when he was a dehydrated newborn. You can read about her SVT here. It was pretty scary!) Today just left us frustrated! (And I'm not even done venting yet!) We had numerous nurses in what is usually a one nurse shift. Poor communication. It took about 8 hours to get the diaper cream we asked for. They didn't seem concerned with us when Evan screamed and cried for a long time. We wonder if he would have gotten the first bottle if we hadn't asked for it...
This evening when Derek left my friend Julie picked me up to take me for food. (She had offered to bring food, but we already broke that PICU rule today, so I didn't want to push it or eat in the cafeteria.) We went to a local diner and had French onion soup and a French dip. I had a really encouraging time with her, and it was just nice to catch up. (Sadly, we did the same thing when Meghan was in the Cardiac ICU...) Anyway, when I returned to the hospital, I went straight to the "family center" to get a room key for the night in a Ronald McDonald room. (Derek and I discussed doing this so I could get a bit more rest...this room is NOT restful, but after today we were concerned if Evan would get the care he needed if he were upset in the night. So when we were talking to the doctor she said we'd get a call if they couldn't console him if we slept in the other room.) Anyway, I came back from dinner, went for the room key and they told me that there had been a phone call about 10 minutes before that saying that Evan couldn't be consoled. WHAT???? I didn't get a phone call! I had made sure to tell a nurse (sadly not ours, though she had been with us earlier in the day...three nurses before that time) that I'd be out for a bit and my phone number was written on the white board. So there was some miscommunication. That doctor tried to call the room thinking I was asleep. I know I look tired and am tired, but it was only about 7 PM.
So I figure I will sleep mostly with Evan tonight, but after he wakes up, I'll go upstairs to a private room for a couple hours.
Anyway, back to Evan. He's had two bottles of formula today. I asked to give him some food, too, and he took a good bit of applesauce. That's all good news. We haven't heard any more about test results
Evan's eyes are what I'm calling "dopey eyes." They're only half opened. He still doesn't have good neck strength either. The neurologist told us that it may be a week before Evan is back to normal due to all the anti-seizure drugs (not the seizure).
Something else I have failed to mention is that he is not likely to have a seizure now due to the high dose of meds. He won't even have another EEG (of his brain) until next week at the earliest because of all the medications.
So despite my disappointment with the hospital today, I know we're in God's care. In the book A Praying Life (by Paul E. Miller) and an email, I was reminded twice today that we often need to feel helpless in order to rely on God. Unfortunately, most of us tend to be very independent people, trusting in our own talents and capabilities instead of relying on the full grace of God that we truly need to be dependent upon. Once again I ask that you would pray with us for Evan...for the short term and the long term. We don't know what lies ahead for us, but we do know that God has plans and a future for each one of us.
I am done being frustrated...and should probably ask Derek to read this to make sure it doesn't sound too angry before posting it. Since he's not here, I will just tell you that I WAS frustrated and even a bit angry, but I'm over it now. Thanks for reading till the end of this long post and letting me vent!
Some have said how strong we are to be handling this. Honestly, Meghan's SVT and cardiac arrest were pretty scary too. But in all things, no matter how difficult, I know that God never gives us more than we can bear. Of course, we're not meant to carry our burdens alone. We're to take them to Him! Even better, God is with us through each trial. He may not remove it from our lives, but He will always bring us through it.
Time to pull out the little chair and turn it into a bed. Evan is asleep. Content. And I can't even hear him breathing (which is a good thing after yesterday and last night).