momngrandma
Earning My Ears
- Joined
- Jul 2, 2000
I posted the following on the community board, but am bringing it over here to my friends on the disABILITIES board, too. I have thought of you so often the last few weeks, even though I couldn't come to the DIS, because I know some of the things we are just learning to deal with now, are things you have been dealing with for many years. I thought maybe you might have some encouraging words or advice or tips to share that would make me feel a little more confident. Thanks!!! Here is what I posted:
"It has been a month since I have been here. Some of you may remember me telling you about our special ds, Robbie. The last time I wrote we had taken Robbie into the hospital because he was having seizures that would not stop. For six days he continued to seize, and then on the seventh day he went into a coma. We almost lost him that day. To make a long story short, he was in the coma for ten days, and during that time also got pneumonia. He was in intensive care for 16 days. He had surgery to implant a "vagus nerve stimulator" -- kind of a pacemaker for the brain to help control the seizures. The seizures are, for the most part, under control at this time although he is heavily drugged. (As the VNS becomes more and more effective, we hope to be able to back off on the drugs and their side effects.) Due to him being on a ventilator for so long, he has lost the ability (or desire) to swallow, so we had to have a peg G-tube installed so that we can feed him directly through his stomach. After 30 days in the hospital, we were finally able to bring him home on Friday.
We are so grateful to God for allowing us to keep our sweet Robbie, but life will be very different around here for a while. Before this happened, Robbie was severely retarded -- about like a one or two year old mentally. But he could walk, eat, play -- and he was so lively and fun, funny and full of personality -- a real lovey, happy "people" person. Now he is silent, unable to walk or sit up or eat, and occasionally gives us a teeny little half-smile. We are praying that through physical and occupational therapy, and speech therapy to work on his swallowing ability, he will regain those things he has lost. And maybe once we can back off some of the drugs, we'll see the spark and joy come back into his eyes. We are concerned that there may have been more brain damage, but are holding onto hope that these things are simply due to being in bed for a month, the drugs, and having the ventilator tube so long.
I would so much appreciate your prayers for Robbie and for dh and myself as we continue to learn to handle all of this. I just want to see Robbie happy again, and able to walk and eat again, too. And we are praying that the VNS will do what it's supposed to do and Robbie will be able to live without all the seizures that have plagued him for so long. (The VNS doesn't work for everyone, but they think Robbie is a good candidate. They will turn it on tomorrow, but it will be several months before we will know how effective it will be for him.)
We have been planning for two years a big trip to WDW in May -- Robbie's first -- and I am so hoping he will be strong enough to go and enjoy it. After all we have been through, it would be so wonderful to be able to go and relax and forget our cares for a while.
Anyway -- please forgive me for not telling you earlier what was happening. DH and I were at the hospital 24 hours a day with him for a month, and the few times I got home to sleep in my own bed or shower, there was not time to even turn on the computer. I know some of you were praying for Robbie when this all started and were probably wondering what happened. Thank you so much for your prayers and thoughts."
<font size="5" color="#FF0066" face="Amazone BT">Cindy</font>
<IMG width="135" height="200"SRC="file:///C:/My%20Documents/minnietravel.jpg">
<font size="4"><font color="#FF0066><font face="Comic Sans MS"><marquee direction="right" align="middle" behavior="alternate">GOING TO WDW MAY 10-16, 2001!!!</marquee></font></font></font>
"It has been a month since I have been here. Some of you may remember me telling you about our special ds, Robbie. The last time I wrote we had taken Robbie into the hospital because he was having seizures that would not stop. For six days he continued to seize, and then on the seventh day he went into a coma. We almost lost him that day. To make a long story short, he was in the coma for ten days, and during that time also got pneumonia. He was in intensive care for 16 days. He had surgery to implant a "vagus nerve stimulator" -- kind of a pacemaker for the brain to help control the seizures. The seizures are, for the most part, under control at this time although he is heavily drugged. (As the VNS becomes more and more effective, we hope to be able to back off on the drugs and their side effects.) Due to him being on a ventilator for so long, he has lost the ability (or desire) to swallow, so we had to have a peg G-tube installed so that we can feed him directly through his stomach. After 30 days in the hospital, we were finally able to bring him home on Friday.
We are so grateful to God for allowing us to keep our sweet Robbie, but life will be very different around here for a while. Before this happened, Robbie was severely retarded -- about like a one or two year old mentally. But he could walk, eat, play -- and he was so lively and fun, funny and full of personality -- a real lovey, happy "people" person. Now he is silent, unable to walk or sit up or eat, and occasionally gives us a teeny little half-smile. We are praying that through physical and occupational therapy, and speech therapy to work on his swallowing ability, he will regain those things he has lost. And maybe once we can back off some of the drugs, we'll see the spark and joy come back into his eyes. We are concerned that there may have been more brain damage, but are holding onto hope that these things are simply due to being in bed for a month, the drugs, and having the ventilator tube so long.
I would so much appreciate your prayers for Robbie and for dh and myself as we continue to learn to handle all of this. I just want to see Robbie happy again, and able to walk and eat again, too. And we are praying that the VNS will do what it's supposed to do and Robbie will be able to live without all the seizures that have plagued him for so long. (The VNS doesn't work for everyone, but they think Robbie is a good candidate. They will turn it on tomorrow, but it will be several months before we will know how effective it will be for him.)
We have been planning for two years a big trip to WDW in May -- Robbie's first -- and I am so hoping he will be strong enough to go and enjoy it. After all we have been through, it would be so wonderful to be able to go and relax and forget our cares for a while.
Anyway -- please forgive me for not telling you earlier what was happening. DH and I were at the hospital 24 hours a day with him for a month, and the few times I got home to sleep in my own bed or shower, there was not time to even turn on the computer. I know some of you were praying for Robbie when this all started and were probably wondering what happened. Thank you so much for your prayers and thoughts."
<font size="5" color="#FF0066" face="Amazone BT">Cindy</font>
<IMG width="135" height="200"SRC="file:///C:/My%20Documents/minnietravel.jpg">
<font size="4"><font color="#FF0066><font face="Comic Sans MS"><marquee direction="right" align="middle" behavior="alternate">GOING TO WDW MAY 10-16, 2001!!!</marquee></font></font></font>
