Details from the last few days

I just left Colleen and Len at the hospital and I am elated to report that Colleen is doing very well. She is now awake and alert back to her cheerful, joyous self. No more weird movements and no new problems to report.

The past few days have been scary for us. We were extremely concerned that something new had occurred in her brain. We left the hospital on wednesday night relieved and so thankful that God healed Colleen from her stroke. The movement and strength in her left side had returned and she was feeling very well. On thursday I went back to work thinking the storm was over. I came home for lunch and Colleen was laughing inappropriately seemingly unable to stop and having strange rhythmic movements of the arms, legs and neck almost seemed like she had cerebral palsy or those types of movements. She was rolling around on the floor and just behaving strangely. I called her hematologist who said to monitor her for an hour she felt this was just a symptom of the methotrexate or chemotherapy toxicity exhibiting itself in another way no reason for great concern. She said to bring her to the clinic in and hour if she had not improved.

 After eating lunch for about 10 minutes, her symptoms progressed so I told Chelsea we needed to get her to the clinic now. She said she was ok to take her to the clinic and I would meet her at the hospital after work. It took 2 of us to get her in the car. I returned to work and within 30 minutes the social worker called and said i needed to come right away. I asked what was going on and all she would say was that she was not doing well. As a nurse, this is often what we tell families when their loved one has coded or is on a ventilator. I really sort of freaked out thinking that Colleen was either dead or on a ventilator. I rushed to the hospital calling everyone I could think of to begin praying for Colleen. When I arrived at the trauma area in ER I was relieved to find out that she had just had what they felt was a seizure. I was immediately relieved she was sedated but stable.

Chelsea had arrived at childrens and used valet parking her symptoms were getting worse but there was no wheelchair to take her upstairs. A patient was discharged and Chelsea asked if she could use the wheelchair but since it was an recovery room chair, it was not available but the person was kind enough to transport them both to the hematology clinic. When they arrived in the clinic she began having terrible movements which required 5 nurses to hold her down to prevent her from injuring herself. The rapid response team was called to the clinic and she was given an ativan shot which helps relax muscles and stop seizures. She required 4 mgs a regular dose is 1 to 2 milligrams. While we were in trauma there were 2 children resuscitated- what wonderful nurses and doctors!!!!!!! Not sure how they deal with that everyday they are very special. Anyway, we spent from 4pm to right around midnight in the ER once again there were no beds available.

Once the ativan wore off, the symptoms returned so dextramethorthan or an ingredient in cough syrup which has been shown to help with the neurotoxicity from the chemotherapy was given. This caused her to go to sleep for 4 hours but when she woke up the symptoms returned- she was thrashing her arms and legs in the bed and was alert but had no control over her arms or legs. It was heartbreaking to see her so distraught laughing one second and sobbing the next because she could not control her body. We got to our room at about midnight the doctors were still not sure what was going on with her. They did give some more Ativan to relax the muscles and they gave benadryl which is supposed to help with these movements (dystonic movements). She fell asleep and was out until about 1130 am the next day friday. When she woke up the movements returned- Chelsea and I both had to protect her from hurting herself. Her platelet count is low so even a small injury can cause a lot of damage. The hematology team came to observe her and immediately called the neuro team. It took them over an hour to come but Dr. Raj Pukar the hematologist stayed with her distracting her with Harry Potter trivia. We were very grateful to her for staying with us during that time.

The chief of neurology arrived and stated that the stroke had caused an imbalance in the chemicals in the brain and this had disrupted the messages that the brain was sending to the body. He prescribed a medication called klonopin which helps with these dystonic movements. She finally got the medication about and hour after that and the movements stopped within 20 minutes. He also said that these symptoms only last about two to 4 weeks and usually go away totally- no promises of course but we were relieved to hear this.

After she took the klonipin and cough med she slept until her mri at 5 pm she had difficulty just holding her eyes opened. She then had an mri with sedation at about 8pm. She slept until this morning at about 1100. During the night she could not stand and was very uncoordinated. The MRI showed no new strokes or processes. I stayed with her last night and Len came up to the hospital about 1000 this am. I came home slept and cleaned a bit and went back at 500. I was elated to see her up and about, smiling and conversing with her friends.

We are thankful that  God healed Colleen , that the mri showed no new problem areas, for our friends and family who are faithfully praying for her. Our God is the great physician with the power to work miracles and he has shown his love and mercy to Colleen and our family by healing her so quickly.

Continue to pray that she will not have anymore side effects from the chemotherapy- she has to have high doses of the medication methotrexate later in her treatment. That she will continue to be free from viruses and infections and that God will give all of us the strength to get through the next 2 years.

Colleen may be discharged from the hospital tomorrow and i will post new pictures of her new hats. They are quite cute and so is she of course.