Michele had another ketamine infusion today and handled it well. No hallucinations, but a terrible headache. She did better than others who were vomiting and naseous. Tomorrow she has another 7:00am appointment at the hospital. Her port catheter has been giving her alot of pain and discomfort. They are going to take an xray to make sure it didn’t move, and is positioned properly. She is schedules for surgery at 8:00, if they have to remove the catheter. If not its back to hour hotel for a quick nap, and on the road by 2:00pm. The Hampton Inn, where we stay is a block from the hospital and everyone here is so kind and helpful. They always give us a late check out. It’s been a crazy week.
We found out today that we come back in two weeks. We thought we didn’t come back for a month. Oh well??? We are getting to know the staff here very well. We will be here from the 19th to the 23rd. Home in time for Christmas. Hope Santa has some time to shop. If anyone has Hilton Honor points that they aren’t going to use, please consider donating them to Michele to help pay for our stay when we are in PA. (See “Ways to Give” page for details.)
Met a woman today that went to Germany five years ago for the ketamine coma. She said it was the best thing she did. She was in remission for five years. Her pain is back and she is receiving Ketamine booster Infusions. THERE IS NO CURE FOR RSD. The coma is the only way known to give people relief for a longer period of time. The treatments Michele is receiving now is an attempt to relieve some of her pain until she is able to have the Ketamine Coma. We were told that they are now going to Panama for the treatment. Now all we need is $150,000 to $200,000. If it is meant to be it will happen.
Keep your prayers coming and pray for a “miracle for Michele”.
Hi everyone. We are back in Philadelphia. We came down yesterday and Michele did much better this time. Last time she threw up most of the way here. This time she had a bad headache and was nauseous but, she took some tylenol and zofran for the nausea and feel asleep. She slept half the way here!!! She hasn’t been sleeping good at home. Her pain has gone down from here last treatment (in the hospital), but the port catheter is killing her. She had the stiches taken out last week. It is swollen and red (no bandage / latex ) and it bothers her so much that at times she can’s lift her arm or carry anything. She will talk to the doctor today to determine if and when the port catheter can come out. I want to make sure it was implanted properly. Both my Father and Mother had port catheters for their cemo and I don’t remember it being this bad. Michele is used to pain and very tough, so I think something must be wrong. The port makes it easier for them to administer the Ketamine, but the purpose of the treatments are to reduce her pain, not give her a different pain. We got to to the doctors office/ clinic at 7:00am. She has been in the Infusion Room since then getting her Ketamine Boosters (a four hour ketamine IV). Hopefully we will be out by noon. Then it’s back to the hotel so she can rest. The ketamine makes her very tired, and they want her to rest and relax her muscles/nerves. I know I am looking forward to getting some sleep. I’m a night person and didn’t fall asleep until 3 am and got up at 6:oo to come here. It’s raining here, but I hear that we may be getting snow in CT. Check back later for updates. Please keep her in your prayers. THANK YOU. Have a wonderful day.
Tuesday, Nov 22nd
Michele was discharged from the hospital on Sunday, but was not able to travel home until Monday. The doctor wanted her to stay in bed another day, but we decided to drive home on Monday so she could get a good night sleep. The trip was hard on her, but she took her pain medication and sleeping pills and slept part of the way. We got home around 9:00pm and were surprised to see a “Welcome Home” balloon on our mailbox. Michele was happy to see it, and to know everyone was praying for her.
Today I took her to the doctor, and she confirmed that the rash was caused by the foley catheter and that Michele is allergic to the latex. $80 later we had new medications and bandages that are latex free. She spent most of the day in bed resting. With the rain coming she has some pain, but not as severe as before. It’s to soon to determine if the ketamine helped her because so much is going on. We’ll see what tomorrow brings.
Thank you to our wonderful family, neighbors and friends who sent Michele well wishes, and for their prayers. We are blessed to have such a great support system.
Discharged from the hospital (Sunday)
Michele was discharged from the hospital around 2:30 pm. She has to take it easy for a couple days. Her doctor wouldn’t let her travel home and thought it would be better if we go home on Monday. She had a bad day. She went right to bed when we got back to the hotel and woke up crying. Her rash from the foley catheter has gotten worse. Her skin is peeling and is so painful. Mike just got back from CVS and bought everything that could possibly help her. She went through so much and now this has to happen. She was crying that she wished she never went in the hospital. I pray that the pain will subside and tomorrow will be better. What else could go wrong. One day at a time. . . .
It’s been a long day. Michele is allergic to the foley catheter and developed a bad rash, which was swollen and painful. She cried most of the day from the discomfort. They tried different powders and ended up putting bandage over the iritation. We left the hospital at 10:45 pm after they gave her the nightly medications. I would think that the ketamine would have her so knocked out that she wouldn’t feel anything. Her nightly meds help take the edge off her pain and she was starting to fall asleep when we left. Well atleast were down to the last 24 hours of ketamine. At 10:00 tomorrow night they will start lowering the dose, and by early Sunday she will be off the ketamine. She won’t be released until they observe her for six hours. Hopefully she will get out on Sunday. She is getting resetless, tearfull and just wants to go home. I PRAY THAT THIS GIVES HER SOME REDUCTION IN HER PAIN. The last couple of days she did not rest due to other complications. I hope she has a good night rest and tomorrow will be a better day. At least she knows she’s almost done.
For more information about the treatment Michele is receiving, go to the page named RSD/CRPS Information, scroll down to “treatment”. click and then scroll down to Hospital Based Infusion.
Hope to see you all soon. Thanks for the prayers. Love you!!!
Thursday, November 17th
Michele had a rough day today, but they told us this would be a bad day. She was uncomfortable and couldn’t rest. Her potassium levels were down, but they have pills for everything. She was feeling down and had periods of tears, but now (5:50 pm) she is finally resting. Hopefully she will get a good night sleep and tomorrow will be better. This will be the end of her third day, only two more to go. She misses home, it seems like moths since we were home. Keep the prayers coming!!!
Tuesday, November 15th
Michele finished the first day of ketamine. They count the time from when the ketamine was increased to 40mg per hour (the maximum allowed), which was 10:00 pm on Monday. So she has four more days to go, and will complete the five day ketamine treatment on Saturday, 10:00 pm. If she has any problems with her heart rate or breathing, they may have to slow the process down. If all goes well she will get out of the hospital on Sunday the 20th. I don’t know if she can travel home that day, she may have to spend a few days in Philadelphia before coming home.
Today went well. She was sleeping a lot, but was able to eat. The ketamine is becoming affective so she doesn’t seem to mind the foley catheter or the area the port catheter was placed.
Her spirits are good. She’s such a great kid, always saying thank you to the nurses for their help. Oh course she doesn’t remember much because of the ketamine. Some people become irritable from the ketamine and yell, but Michele drifts in and out of sleeping always with a smile on her face. Mike and I left the hospital at 10pm and she was resting peacefully. I pray that she has a good night sleep. Thank you all for your prayers and kind comments. It is so hard to see all she goes through, you all give us the strength to go on.
Sincerely, Karen (mom)
They started Michele on the ketamine around 5:00pm. They kept increasing the amount, but are now at the required dose. She will have a continuous IV of ketamine for five days. She is doing well. She has discomfort from the port site and from the foley catheter. Her spirits are good as usually. She’s a brave young lady. At one point she woke up and saw me crying (it’s so hard to see all she goes through), she looked at me and said, “don’t cry mom, I’ll be alright.” She even had me laughing at times because the ketamine gets her feeling out of it. She gets confused and then laughs because she knows she’s not making any sense. They are wonderful at the hospital and constantly watch her. Her heart rate kept going high when she got out of bed to go to the bathroom, so they put a foley catheter in and she can’t get out of bed anymore. Visiting hours are from 11:00am to 8:00pm, but they let us stay until 10:30 because I wanted to see how she reacted when they increased her doseage. I think tomorrow will be a little easier for her. She’ll probably sleep most of the time. Hopefully she won’t start with the halucations. The last person thought Bruce Springsteen was in the room. You know that he is my husbands favorite singer. He told Michele if Bruce shows up tonight to call him. ( we are trying to make the best of the situation). Please keep her in your prayers and check back for more updates. Our sincere thanks for your support during this. We are fortunate to have such wonderful family and friends.
Michele is in the operating room having a port catheter inserted. The port will make it easier for them to give her the ketamine. We will be back and forth to PA for future booster ketamine infusions.
After this she goes to recovery, then up to the Intensive Care Unit where she will start her week of ketamine infusions.
The waiting is the hardest part. She was so nervous. She has the best RSD doctor in the country, so I guess she’s in good hands. I wouldn’t trust anyone else with her care.