Slow and Steady Wins the Race

This is Liz again. Sorry for the delay in updates. I know my Dad would be amazed to know how many people are following his blog, as well as annoyed that I have not been better about keeping everyone updated. :)

The last week has been filled with ups and downs. Every time we take one step forward, it seems like shortly after we take 2 steps back. At this time, Dad is still intubated (with the breathing tube), on the ventilator, and heavily sedated. On Saturday, it seemed like he was doing a little better. They were actually able to wean the oxygen on the ventilator to 45% (goal is 40%), take off the paralytic, stop the medication to keep his blood pressure high enough, and start some feeds through the feeding tube in his nose. Unfortunately, on Saturday night after being turned, he had a period of the oxygen level in his blood being too low, so they had to turn the vent all the way back up to 100% and re-start the paralytic. He also spiked another fever. Sunday was a long day, as his fever was as high as 102.9 for most of the day despite decreasing the room temperature (we were sitting in here with coats and gloves), tylenol, and packing him with ice packs. When they were checking his feeding tube, they pulled out blood clots, and they became concerned about a bleeding ulcer or other type of GI bleed, so the feeds were stopped and he was started on a Nexium drip to protect his stomach. They are unsure as to the source of these high fevers, so Infectious Diseases was consulted today. It is most likely that they are still related to the H1N1, but they also need to look at other possibilities. They started a new antibiotic called Merepenem to make sure they are covering for all possible bacterial infections. They sent out a lot of blood work to look for potential fungal infections as well. They also did an ultrasound of his gallbladder and pancreas today to rule out a gall bladder infection or pancreatitis, as many of the medications he is receiving can cause problems with those organs. They gave him a medication called Bumex, which is a diuretic, in hopes of getting some of the extra fluid out of his lungs.

Monday things seemed a little better. They were been able to wean his oxygen down to 60% and were able to finally turn the paralytic off. He still had a fever, but it seemed to be a little lower. They resent a culture of the secretions in his lungs and he still is positive for Influenza A (H1N1), which was to be expected, as it usually takes over 14 days to clear out of your system. He has received a lot of blood because his hemoglobin is still low from the stem cell transplant. They are hoping by increasing his hemoglobin a little higher that they will be able to increase the oxygen carrying capacity of his red blood cells throughout his body. They did another doppler scan of his legs and arms and found that he had another new blood clot in his leg, so they are started him on a heparin drip for that. Sedation started to be a big issue for him, as he has a high tolerance for many of the sedation medications because he was taking so many opiods for his back pain and vertebral fractures. Monday night, however, was not a good night. After being turned, he dropped his blood pressure again and needed to be started back on the pressor (medication to keep your blood pressure high enough). His blood gas still did not look good despite being on 100% FiO2, so they re-started him on nitric oxide (NO), which is an inhaled gas that acts as a vasodilator to help open up the bronchial passages. Luckily, he responded to the NO right away, and his sats increased from the low 90s to 96.

Tuesday he made a lot of progress. By agreeing to try to wean down the FiO2 before weaning off of the NO, they were able to wean his FiO2 down to 40%, which was their goal. His sats remained in the mid-90s, and his blood gas Po2 level continued to be in range. He continued to spike high fevers (103 F). Infectious Disease met with us again and said that they were almost 100% convinced that all of this is definitely related to the H1N1, and we were able to convince them to give him scheduled Tylenol around the clock to help control the fevers instead of always waiting to let him spike a fever first before treating it. They are keeping the temperature in his room at 65 F or lower, packing him in ice packs, and giving the Tylenol. His oncologist came by to see us and gave the doctors several other drugs to try to help boost up his immune system, including another round of IVIG, a medication to help potentially decrease the inflammatory response, and a course of a different antifungal just IN CASE there was any possible fungal infection brewing. He also started moving his secretions out of his alveoli and into the central airways, so for the first time, they were able to suction some mucus out of him.

Wednesday was for the most part a quiet day. The doctors have finally realized that moving too quickly with Dad does not work for him, and have agreed to try to wean things a bit more slowly. Now that his FiO2 is decreased to 40%, they are less worried about weaning quickly. They were going to try to start to wean the NO this morning, but Dad had a lot of issues with sedation so they decided against that. Dad is still very sedated but has started to buck the vent and stack his breathing, which means that he is trying to work against the machine and his breathing often becomes out of sync with the vent. When this happens, his sats go lower. This is often an indication for more sedation; however, because of all of the pain medication Dad was on prior to the transplant, he has a very high tolerance for opiods and therefore they have been having a difficult time with sedation. He is maxed out on his fentynl dose, but does have room to go up on his ativan. They tried to start propofol (another sedation medication) today, which seemed to make him more comfortable. The problem was that every time they went to turn him he dropped his blood pressure, so they were unable to continue using it. They also started trying haldol, an antipsychotic, to see if that would help with some of the agitation. He has not opened his eyes or responded purposefully to us yet, but he does appear to calm down when we are in the room talking to him and reassuring him. They also have him on a Bumex drip (a diuretic) to help decrease some of the fluid in his lungs. Because of all the problems with sedation, they decided to wait to try to wean the NO until tomorrow. He is still spiking very high fevers to 103, but for the most part they are able to control them with the Tylenol, ice packs, cool baths, and cold room. As his nurse today said, there is no need to rush him: slow and steady wins the race.

Right now he is tucked in and being cared for by a great nurse. The ICU has been great with helping to make sure that we have good continuity of care with our nurses, which has really helped. Several of Dad's favorite people from the stem cell unit also came over to visit him today, which I am sure he enjoyed. I will try to be better about updating the blog daily (until he is able to again do it himself). ARDS is a very serious condition, and he is not out of the woods yet, so please continue to keep him in your thoughts and prayers. His oncologist really put it best when he said that, for all intents and purposes, he is fairly certain that my Dad right now is cancer free. He was a low risk stage I myeloma and he feels he responded well to the transplant. So the big hurdle now is for his new immune system to continue to fight off the H1N1 and for his lungs to recover from the damage from the ARDS. My Dad is stubborn and he is a fighter so we are encouraging him to keep up the good fight. I know that he would appreciate any comments or well wishes here, as he is unable to check his email right now (and we have no idea what his password is!). Thank you for your continued support and prayer for Dad's recovery!