Highs and Lows

Today's Notes:

Highs...
1. Bobby's chest tube came out first thing this morning!
2. We got to walk around outside again and Bobby was so excited to be outdoors!!
3. Bobby tore through the halls of the 6th floor at CHOP. Mr. Personality seemed to be in full force and everyone was digging his hair.
4. There was talk of trying to get us out of here on Tuesday.

Lows...
1. Bobby's chest incision infection looks worse. We have to have CT surgery look at it in the morning and figure out how to help it improve. This may involve draining the puss and cleaning it out. (Yes, this will delay our departure.)
2. The last 2 days Bobby has started sleeping with his eyes open. As the day progressed, they were looking more and more red. Tonight they put some lubricant in them and plan to consult with the ophthamologist tomorrow. I wonder if this is related to the psychological trauma of this hospital stay.
3. The strong antibiotics have given Bobby a terrible diaper rash. Now they think it is yeast, so more medicine for his bottom. I am almost too depressed to list the amount of medicines he is currently on. He has been such a trooper about taking all of these!

Ok, so I know we had a lot of positives and moves forward. I really need to focus on that. But tonight it is really hard. I want to go home, so badly, and all of these nagging things are in the way. It also kills me to see Bobby going through all of these things. I need to be patient and trust God's timing, but it is easier said than done, especially during this marathon hospital stay. I also feel selfish, because we are dealing with small issues, but other kids and families are going through much worse things. It is just so frustrating because you think that there is a light at the end of the tunnel, and then wham, something is in the way of that light again. So I am hoping that venting through my writing will help me to cope and find some sense of peace about all of this. I know I keep asking, but we still REALLY need those prayers. Prayers for patience, trust, and guidance (especially for the doctors).

Also, I have mentioned that our heart friends need prayers. Tonight I ask that you pray especially for Noah. He had the same surgery as Bobby a few days ago, and now is on ECMO due to serious complications. ECMO is like a bypass machine that can be used in the ICU setting. Noah is quite a little fighter, and I would love all of us to stand behind and support him and his family.

Thank you for EVERYTHING!

Rachael