Trach Today at 1pm

Dad will be getting his trach today at 1pm. They will do it at his bedside. They will increase his sedation, as well as using the paralyzing medication just for the duration of the procedure. He had a mostly uneventful night, although at one time he did become agitated and need a brief increase in his FiO2 (oxygen). Hopefully, with the trach, these agitation episodes will be less frequent. Please keep him in your prayers today.

Trachestomy Tomorrow?

Dad has remained about the same the last 2 days. The best thing that is happened is that the fevers overnight have stopped!! Two nights ago, he only spiked to 101.4, and last night he did not spike a temperature at all. He seems much more comfortable when is does not have a temp, so we are happy for this improvement. They cultured him again for the flu and he still came back positive, which was not completely unexpected as the stem cell doctors and infectious disease doctors both said that a stem cell patient with a new immune system may continue to test positive for the flu for up to 4 weeks, even if they are no longer have symptoms. His blood pressure has been stable for the past 2 days and they have not had to use the medication to keep his blood pressure high enough, plus they have been able to use the medication to help take the excess fluid off (a diuretic called Bumex) without him dropping his blood pressure. Yesterday, they were able to take over 3L of fluid off of him, which should definitely be helping his lungs. The biggest problems remain sedation and weaning of the vent. He continues to make progress, however, it is very slow. Yesterday, they were finally able to get him down to 45% FiO2 (oxygen), which is almost to a place where he can be weaned from the vent. However, when they lightened his sedation he became very agitated and started fighting the vent again, which caused him to desat (drop his oxygen levels) and eventually required the vent to be turned all the way back up to 70% FiO2. So, we basically had to start all over with the weaning down to 45% again. This time, they were unable to get him to 45%, and instead have had him hanging out at 50% since last night and all day today. They were hoping that his oxygenation (exchange of oxygen from his lungs to his blood) would have improved more than it has. Because he has been intubated (with the breathing tube down his throat) for almost 2 weeks, the decision was made today to place a trachestomy tomorrow. A trachestomy is a small hole surgically created in the neck to help a person breath. It is often done for patients who are having difficulty weaning off of a ventilator. The hole is not permanent- when it is no longer needed, it can simply be allowed to close up again on it's own. The doctors are hopeful that my Dad will only need it short-term in order to help him wean more comfortably off the vent. Being intubated is very uncomfortable, and unfortunately, every time they try to decrease his sedation and wake him up more, he gets agitated. The doctors are hopeful that he will be more comfortable with the trachestomy and therefore they will be able to lighten up the sedation and wean the ventilator without him getting as agitated. They can do the procedure at the bedside in his room. The bad thing about having a trach and being on a ventilator is that you are unable to talk. If the trach is needed long term, a speech therapist can work with the patient to help them learn how to use a special speaking device for their trach (but we are hopeful Dad will not need it for that long!!). I am attaching a link to the Mayo Clinic website regarding trachestomies for those interested in more information: http://www.mayoclinic.com/health/tracheostomy/MY00261

Occupational therapy has also started working with Dad by making him splints for his arms and legs to prevent foot drop and contractures (shortening of muscles because they are not being used). We want to make sure that he is able to walk on the beach again this summer! He wears a splint on alternating arms and alternating legs for 4 hours at a time each day. Again, thank you for your continued thoughts and prayers. I told Dad that once he is feeling a little better, I am sure that there are many people that would like to come visit. Until then, please keep sending your emails and I will continue to read them to him. He is on a little less sedation and occasionally we see little responses to things like him squeezing his eyes when we are talking to him. I know I was reading him an email from a friend from his old office the other day and he definitely had a few eye squeezes in there. :) I know Dad appreciates all the kind thoughts and well wishes. I can't wait for him to be able to read them all on his blog again.

More of the Same

Not much new today to report. They were able to wean off the nitric oxide last night, but because of that had to increase his FiO2 to 75%. According to the doctors, they were happy to at least be able to get the nitric oxide off because that can be more difficult to wean off than Dilaudid. So we will count that as a positive thing for the day, even though they had to go up on the FiO2 to come off of it. Dad is still spiking super high fevers every night (104.9 was last night), and they are unsure of the source as all of his cultures have come back negative. At this point, they are considering that perhaps it is a side effect of some of the antibiotics he has been getting, so they are going to try stopping antibiotics for a few days and see if that helps the fevers. When Mike and I left tonight he was up to 103.6 again after remaining afebrile for most of the day. Unfortunately, he also had some blood in his stomach today so they are not able to give him ibuprofen to help with the fevers anymore. All day today his blood pressure was quite low and dependent on the medication to increase it; however, tonight he became quite agitated after being laid flat for a CT scan and became more hypertensive, so they stopped the pressor and restarted the propofol to help with the agitation/sedation. At this point, we know he gives his night nurses a run for their money, and they are used to it as well! His nurse tonight was going to give him a bath in rubbing alcohol and ice water- a very old school technique for lowering fevers. Hopefully it works. I was lucky enough to have one of my former DePaul teachers come to visit with me for a good part of the day, which was very nice. Andrew is also back in town, and it is great to have him here. I know Dad appreciates that as well! Our cousin John brought a delicious homemade meal to the hospital, which was so wonderful. I, for one, am growing very tired of eating out all the time! Dad's oncologist will stop by to see him tomorrow- he is happy that he is holding his own, but concerned that he is not getting better faster, which is the general consensus among the other doctors as well. They feel if they can find a way to control these fevers, it will help his oxygenation. Please continue to keep us in your thought and prayers. We hope that Dad will be back to write on the blog soon, but until then, I will continue to keep updating.

Quick Update

Today was another quiet day. Last night, Dad's temperature spiked to 104.9. They were able to cool him down fairly quickly with a cooling blanket, ice, and motrin, but this did concern them again for possible infections, so antibiotics and different antifungal medications were restarted. His blood pressure also dropped a little low last night so they had to restart the pressor at a very low dose. That was able to be discontinued during the day, and giving the motrin round the clock kept his temperature much lower throughout much of the day as well. They are working on weaning the nitric oxide and hope to have that turned off tonight. After that, they can hopefully concentrate on weaning down his oxygen more. He still is very fluid overloaded, but they have had to be careful with the diuretic since he has been having low blood pressures. Today he also got a PICC line (a longer term IV), so they will be able to pull the IV they put in his neck last week, which is a greater risk for infection. They will also talk to oncology about pulling the large IV that was placed for his stem cell harvest just in case there is an infection there. Otherwise, not much changed today. I have enjoyed reading him all of the messages you have been sending, and I believe he is enjoying them too, so please keep sending them!!! Prayers tonight for a quiet night without fevers. Thank you so much for all of your love and support. I know it means a lot to Dad and to us.

A Quiet Day

It's Liz again. Today was for the most part a quiet day. We are still dealing with the same issues: sedation, trying to get the fluid out of the lungs, weaning the oxygen and nitric oxide, high fevers and low blood pressures. I think Dad's fever reached an all time high of 103.9 last night- I was in the room helping the nurse pack him in ice and give him a cool bath. We were able to convince the doctors to allow him to have a one time dose of ibuprofen, which finally did the trick. They are hesitant to use ibuprofen (Advil) in ICU patients because of the risk for kidney damage and bleeding ulcers. Dad's kidneys are working great, but he did have the scare with blood in his stomach the other day, which is why they are hesitant to use it more often with him. But it seemed to work this time and overall his fever was lower throughout the day (101-102). Sedation continues to be an issue. When he is not sedated enough, he really fights the ventilator which decreases his oxygen saturation, so they are continuing to work on that. He did have a few episodes of coughing up a large amount of fluid several times today. They are hopeful that indicates that he is finally getting some of the fluid that has been sitting in his lungs out. They are continuing to give him the Bumex (a diuretic) to help pull more fluid off of him, but have some trouble with that because he has occasionally been dropping his blood pressure too low. Overall, not many changes were made today. The doctors this morning said that they felt perhaps he was nearing the end of this acute phase, as he has settled out on his oxygen requirements. He remains on an FiO2 (amount of oxygen the vent is giving him) of 55% and his blood gases today looked good. The wonderful nurses in the MICU have been taking good care of him, and we hope that perhaps he is starting on the road to recovery. Weaning the ventilator will most likely take some time, so we are trying to be patient, even though it is hard! He is still not really able to respond to us, although I noticed that he seems occasionally to squeeze his eyes shut or grimace at appropriate times when I am talking to him. If you would like to send him a message, feel free to email it to me and I will read it to him. My email is etespinoza@gmail.com. I know he appreciates all of the thoughts and prayers.

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!