A few things running through my mind, not essential to Ben's health, or mine for that matter....
I finally spelled "McDonald" right in my last post, and then corrected my sequence of misspellings in previous ones. My apologies to Ronald. You'd think I would know better as many cups of coffee as I've purchased from him this week.
When Ben was feeling bad and we weren't quite so sure how things would progress, there was a lot of unspoken solidarity with other parents in the icu. Somehow, though, when Ben rose from the bed and took his walk, the solidarity for me turned to a more acute sense of sadness for those parents whose journey will be so much longer than ours, and for those who will never take their child home alive from icu. We know it happens, and almost know how much it hurts.
I think I could live in the city. Walking to and from the hospital each day has its own sense of freedom and a healing rhythm to it. The access to all the essentials for daily life within walking distance is nice. And we love some of these old row homes. Of course Lincoln Park is pretty nice of its own merit.
When people are in the hospital for a long time, it is expensive. I don't just mean the hospital bill. Not sure I want to see that, but do thank my fellow employees at the CoB for helping our family get healthy again. But it's expensive just to be here: parking, traveling back and forth, eating even when trying not to spend too much on restaurants, and just managing the day by day needs of life. Again, it stretches us and so it's not hard at all to see how families go "belly up" after any kind of extended medical care.
Exhaustion will set in. When? It's hard to say, but I know it's coming.
Finally for tonight, I just don't know how people do this without the love and support of family and faith family. The love and strength of God is available to all who ask/seek/wait, true, but it surely is felt most tangibly through the care and generosity of other human beings. Thanks to all of you who have been human expressions of Christ to us during this time.
Monday, March 1, 2010
Lucky - and blessed - thirteen
What a day.
Ben started the day on the ventilator and ended the day with a walk out into the hallway and back. In between a great number of, and number of great, things took place.
Tubes removed: breathing tube; two of three chest tubes; ng tube; catheter
Medications stopped: well, quite a few, I've lost track, but he gave up some of the heavy-duty ones that were keeping him so sleepy.
Path toward food: he has been able to take clear liquids. He wants a Whopper with cheese and french fries.
Movement: He has gotten up twice, the first time to sit in the chair, the second time to take his walk. Other than that he is moving himself around in bed and returning to his feisty, insistent self.
Sleep: He was exhausted at evening's end. They are having him sleep with the BiPAP machine tonight, mostly as a continued support for his healing lungs/breathing. He's not fighting it as much this time around.
Gma & gpa L visited today, and so did Pastor Audrey bringing a lovely card signed by much of the Highland Avenue congregation. Kim returned home tonight and will get back to work tomorrow. I will continue to stay at the hospital and Ronald McDonald House for the rest of this week. (Did I mention that the boiler went out at RMH, and that we only had frigid water this morning? Note says it will be fixed - tomorrow!)
No word yet on going home (everybody's just so thrilled about his progress!), but it would seem like maybe at or around the weekend might be possible if he continues his "meteoric rise" from today.
Thanks for the prayers that gave Ben new breath and rejuvenated life today and have sustained us with the Holy Spirit through these trying two weeks.
Ben started the day on the ventilator and ended the day with a walk out into the hallway and back. In between a great number of, and number of great, things took place.
Tubes removed: breathing tube; two of three chest tubes; ng tube; catheter
Medications stopped: well, quite a few, I've lost track, but he gave up some of the heavy-duty ones that were keeping him so sleepy.
Path toward food: he has been able to take clear liquids. He wants a Whopper with cheese and french fries.
Movement: He has gotten up twice, the first time to sit in the chair, the second time to take his walk. Other than that he is moving himself around in bed and returning to his feisty, insistent self.
Sleep: He was exhausted at evening's end. They are having him sleep with the BiPAP machine tonight, mostly as a continued support for his healing lungs/breathing. He's not fighting it as much this time around.
Gma & gpa L visited today, and so did Pastor Audrey bringing a lovely card signed by much of the Highland Avenue congregation. Kim returned home tonight and will get back to work tomorrow. I will continue to stay at the hospital and Ronald McDonald House for the rest of this week. (Did I mention that the boiler went out at RMH, and that we only had frigid water this morning? Note says it will be fixed - tomorrow!)
No word yet on going home (everybody's just so thrilled about his progress!), but it would seem like maybe at or around the weekend might be possible if he continues his "meteoric rise" from today.
Thanks for the prayers that gave Ben new breath and rejuvenated life today and have sustained us with the Holy Spirit through these trying two weeks.
ben walks
Sent from my Verizon Wireless BlackBerry
ben is up!!
Praise God!
Sent from my Verizon Wireless BlackBerry
Morning day thirteen
We're hoping this is our lucky 13 today. The doctors came on rounds and have determined that they can try to take the breathing tube out a little later this morning. They did an echo of the diaphram just to make sure it was not damaged, and it looked OK, so they think they can go ahead.
Before they extubate they are also going to try to take a couple of his chest tubes out. His post-op drainage seems to be fine. They can do this before his pain medications are lowered a little post extubation.
After they extubate I think they will work him pretty hard with his breathing therapy, and they will put him back on the BiPAP for a while which will support his own breathing. It's a big, clunky mask, so we'll hope that he'll tolerate it this time around.
I believe the next 24 hours will be fairly nerve-racking as we watch for signs that he's on the road to a more permanent recovery. Thanks for including us in your morning and daylong prayers.
Before they extubate they are also going to try to take a couple of his chest tubes out. His post-op drainage seems to be fine. They can do this before his pain medications are lowered a little post extubation.
After they extubate I think they will work him pretty hard with his breathing therapy, and they will put him back on the BiPAP for a while which will support his own breathing. It's a big, clunky mask, so we'll hope that he'll tolerate it this time around.
I believe the next 24 hours will be fairly nerve-racking as we watch for signs that he's on the road to a more permanent recovery. Thanks for including us in your morning and daylong prayers.
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