12 Days at MD Anderson

What started out as a trip to MD Anderson for an outpatient surgery to place the Port A Cath and ended up as a 12 day hospitalization. The Port A Cath placement went well but Marc's BP went sky high after the procedure was completed. Because of that Marc was kept overnight for observation. Complicating matters the abdominal pain worsened and became unbearable for Marc.The blood pressure improved slightly overnight but the abdominal pain worsened. So when he was discharged in the morning from the outpatient surgery center, I took him directly to MD Anderson's Emergency Center.

After multiple tests in the Emergency Center, Marc was admitted for further testing to determine the cause of the abdominal pain and to get the blood pressure under control. While talking to the neuro-oncolcgist I mentioned that I had thought for a long time that the cause of Marc's abdominal pain was the IVC filter because the pain had started about a week after the filter was inserted and progressively worsened. The pain had become so severe that Marc was using a Fentanyl patch and taking morphine sulfate every 6 hours which failed to help the pain. Note that I had told every Dr. we had seen since the palcement of the filter that I wondered if the cause of his abdominal pain might be the IVC filter and was told that would be very unlikely . Well I finally found a Dr. that listened to me - he left the room and read the possible complications of IVC filters and returned saying "You are right, I am positive that is the cause of the pain". But complicating the diagnosis the gastroenterologist who examined Marc felt the cause was GI related due to the high steroid doses and the Avastin (the chemotherapy that Marc is now on). Marc was then seen by an interventional radiologist who felt that it was unlikely the pain was from the IVC filter and agreed that a GI workup should be completed before considering the removal of the filter. First of all he felt it unlikely that the filter was still retreivable because of the lenght of time it had been in place; secondly he felt an EGD (endoscopic evaluation of the esophogus, stomach and duodenum) should be completed before attempting the retreival because it was much lower risk. They (the Drs.) went round and round about which procedure should be done first.It was initially decided that the EGD be done first, to the dismay of the neuro-oncologist.

Then it was cancelled because Marc's BP was elevated and anesthesia refused to assist with the procedure. The EGD was scheduled for a week ago last Thursday. Marc was not allowed food or drink (NPO) after Midnight on Wednesday. The procedure was scheduled for 3 pm that day. Well at 5 pm, the procedure was unexplectedly canceled. The EGD was rescheduled for 3 pm the next day and wouldn't you know the procedure was canceled because Marc's BP was elevated and anesthesia refused to assist with the procedure. This was Friday and again Marc had been NPO since midnight the night before. Marc was furious and his BP went up even more. That meant staying in the hospital through the weekend.

Because the BP was so elevated an internal medicine specialist was consulted and felt like Marc needed to add 3 different BP medicines to keep the BP under control. More labs were done. By Monday Marc was so debilitated that he could hardly get out of bed, his oxygen saturation was low and his blood gasses showed a very low oxygen level. Marc was placed on oxygen and his oxygen levels were monitored continuously. His condition seemed to deteriorate more each day. I was able to take him to the lobby on Sunday to visit with Steve, Julie, Brayden, Annie and Abbie. Annie later told her Mom that she wanted to be a nurse when she grew up so that she could work at this hospital and take care of her Papa.

Finally the decision was made to proceed with attempting the IVC filter removal and that procedure was scheduled for 1pm on Monday. When we got to the holding area to prepare for the procedure the interventional radiologist came in (a different Dr. from before) and said he did not feel comfortable doing the procedure until GI complications were ruled out. Since the EGD was already scheduled for 3 pm that day he recommended that Marc go ahead and have the EGD and the IVC filter retrieval be scheduled for Tuesday. Well by the time we got back up on the floor the EGD had been canceled by the schedulers and rescheduled for Wednesday afternoon. So now Marc still had the filter removal scheduled prior to the EGD. After many phone calls to different physicians, Marc's nurse contacted the patient advocate who miraculously go the EGD scheduled for 5 pm that evening. We waited in the holding area for almost 2 hours before they took Marc back for the procedure. Marc was back out within 15 minutes with a report of no GI problems found. We finally got back to his room about 8:30.

The next day the IVC filter retrieval was scheduled for 3pm. And for the second day in a row Marc was kept NPO after midnight.Transportation showed up at about noon to take him down for the procedure. We waited in the holding area until about 3 pm before Marc was taken back for the procedure. Marc was already agitated because of the long wait. He was in the procedure room for over an hour and the Dr. explained that he was unable to remove the filter. He said that at one time during the procedure he actually thought he was going to get it out but then got to a point that he felt would injure the vena cava if he forced the removal. So we thought the procedure was in vain. I don't know what Marc was given for anesthesia but he was extremely agitated after the procedure. One of the nurses tried to force him to do something (I don't remember what) and he slapped at her and yelled "no". It didn't take them 5 minutes to release him to his room. That night was a nightmare! Marc was agitated all night. He kept trying to get out of bed (he had to lie flat for 4 hours after the procedure was completed) and didn't want to listen to anything I said. Finally about 4 am I got him up in the chair and he seemed to fall asleep and started to snore. I lay on the bed reading and must have dosed off and was awakened about 4:30 by Marc trying to get out of the chair. He was so weak he could hardly stand. By the time I got to him he was nearly in the bathroom (only a couple of steps from the recliner) hanging onto the door jam. I couldn't hold him up with him in the position he was in so I let him gently down to the floor. He got on his hands and knees and crawled into the bathroom. I am not sure how I got him back up but I eventually got him back in the chair. By then it was nearly 5 am and there was no going back to sleep. Marc was exhausted and so was I!

The next day all Marc couldn't get up without assistance from 2 people. His urine output had increased so much the endroconologists were consulted. They decided that he might have diabetes insipidus as a result of the removal of the pituitary macroadenoma last November and said the condition could occur up to a year after the procedure. So again more testing was done. His urine output was monitored closely. He also had an elevated serum sodium level and low potassium and magnesium levels. His IV fluids were changed and he was stared on potassium and magnesium by IV infusion. His oxygen saturation remained low and he was on continuous monitoring of his vital signs. The only good thing was that he no longer complained of abdominal pain.

Julie graciously offered to spend the night to help me with Marc. I fell asleep in the chair and don't remember anything until morning. Julie asked me the next morning if I remembered telling Marc to "sit down and shut up". I have no memory of that or of the nurse asking me which medication she should give him to help settle him down so he could rest. Julie says I answered her but I don't remember. I felt more rested the next day than I had felt in a long, long time.

That afternoon, Marc attempted to get out of the chair. I was just across the room on my laptop when I heard a thud. I found him on his knees in front of the chair. It took a nurse, 2 aides and myself to get him up and back in the chair. The nursing supervisor decided that for Marc's safety they needed to get a sitter to stay the night. He wasn't much of a sitter, more of a talker and just kept telling Marc all night that he needed to stay still. About 3 am I woke up hearing the sitter tell the RN that "he just wouldn't stay still, I told him he was going to pull out his IV". At that time I realized that Marc had in fact fulled out his IV. The IV team had to be called to replace the needle in the port. I dreaded seeing what the daytime sitter would be like! I am not sure that we needed her because Marc was scheduled for an MRI under sedation at 10 am.

The MRI was scheduled to evaluate for new tumor growth and to assess the pituitary for abnormalities as Marc had developed some new right sided weakness during the time he was so debilitated. I was concerned that there might be some changes in the tumor due to the new symptoms. The most refreshing news I have had in a long time were delivered by the neuro-oncologist just as Marc was being taken back to his room. He said that he saw no new tumor growth and saw no abnormalities in the pituitary. The dictated report had not been completed yet by the radiologist but should be done in the morning. We - Marc, Julie and myself, cried some tears of joy upon hearing the news.

Julie is again spending the night and Steve is home with the kids. He is suffering from a sinusitis and I told him he couldn't see his Dad until he had been on antibiotics for 24 hours. Marc even called him tonight and talked to both Steve and Annie. We have had some laughs tonight as you can see from the picture above. Marc got a kick out of telling the sitter he wanted pillows until he was covered in pillows and linens. It is so good to hear his laughter and see him smile.

We are looking forward to being discharged to home tomorrow. I pray that the smiles and laughter continue. It is wonderful to see Marc pain free. The doctor tells us he should be in "Medical Miracles". I don't care about that but I pray that his recovery continues. He was able to get his third dose of Avastin today (the current chemotherapy) and is scheduled to get it again in two weeks. He will have followup labs this week and next and we will have another MRI on 9/28 and see the neuro-oncologist again on 9/29.