Dad Update

Yesterday and today have been relatively quiet days. Dad has been very comfortable during the day. They have been able to wean his sedation a little bit, but he still is not yet able to wake up, open his eyes, or really respond to us. During the day, his temperature has been great, but at night he still is spiking these mystery fevers. Luckily, last night they were able to be proactive by holding his motrin and tylenol until he started to spike, which, along with an ice bath, seemed to help. His temperature only got as high as 102, instead of over 104 as it had the previous nights. The doctors are unsure if this is because the antibiotics were discontinued, if it helps to pre-medicate with motrin/tylenol, or if the steroids that were added yesterday are helping to control the fever. Either way, we are happy that his fevers at night seem to be better controlled, as the fever tends to set off issues with oxygen saturation and blood pressure. He still is very sensitive to being turned, but they were able to have him off the medication to keep his blood pressure high enough today as well as give him the diuretic to help get some of the extra fluid off of him. They have left his ventilator setting at an FiO2 of 55% for the last 2 days. This is below a toxic level, and so they have decided to let him rest for a few days before making any more attempts to wean the vent. Overall, he has made some good progress the last 2 days. Please pray he continues to keep up the good work!! Thank you for your continued thoughts and prayers.

Help with Meals

Many of you have expressed a desire to help out with meals and other needs that we have. Currently, we could use some help having meals delivered to the hospital. There is no refrigerator and limited microwave availability, so food than can be delivered hot or does not need to be heated (sandwiches, for example), as well as drinks would be very much appreciated. We have set up a caring calendar for you to sign up for specific dates. Most likely, there will be between 4-6 people eating each day.

Mike and I could also use some help walking our dog during the day in Forest Park, while I spend time at the hospital and Mike is at work. This errand is also listed on the caring calendar. If you are able to sign up to help walk our dog Daisy, please contact me for additional details.

In the future, there may be spots available on the calendar for rides to and from Park Ridge for my mom as well.

To access the calendar, go to the following website: http://www.carecalendar.org/index.php.

Calendar ID: 67413

Security Code: 4845

As our needs change, we will definitely keep the blog and calendar updated. Thanks so much for all of your care and concern for us during this difficult time.

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!

Prayers

Hello everyone.

This is Liz writing for Terri. Unfortunately, my Dad had more serious complications yesterday and today resulting from the H1N1 flu he was diagnosed with on Tuesday. Yesterday he started having some difficulty keeping his oxygen level above 90, so he was started on oxygen through a mask. However, just like Dad, he had a positive attitude and was not complaining about any discomfort all day, which was leading his nurses and doctors to believe he was not as sick as he actually was. He did ok overnight with the mask, but today when I arrived around 9:30am his oxygen level was only 85% on the maximum amount of oxygen available on his floor. His nurse called the ICU to come and look at him, and when they checked the oxygen level in his blood it was only 50, which is very low. His chest xray from last night showed a lot of fluid in his lungs, both from the H1N1 flu and the resulting pneumonia. The ICU doctors made the decision to put a breathing tube in while he was still on the floor because they were worried he would not make it to the ICU without it. Once they got him over to the ICU, they had a very hard time getting him sedated enough (because he takes so many pain medications for the myeloma), and they also started having a hard time ventilating him on the ventilator and keeping his blood pressure high enough. They had to start him on medications to keep his blood pressure high enough, as well as play around with the ventilator to try to get his oxygen levels up high enough. He has been diagnosed with Acute Respiratory Distress Syndrome (ARDS) which is a very very serious respiratory complication from the flu. He is medically paralyzed and sedated, so he is not able to talk to us or respond to us right now. The doctors and nurses are working very hard to stabilize him, but he is definitely in need of many prayers right now.

Tuesday, February 15

Today Bob learned that he has the flu! They are giving him different treatments to help him feel better. He is a little discouraged but his doctors have said this isn't that unusual. The other infections that were diagnosed yesterday are still being treated with some heavy antibiotics. Today with these medications, he mostly felt like sleeping.

The good news is that they are planning on sending him home on Friday. Also, Bob has a little bit of an appetite but has difficulty with any foods that are too dry. So, he's still eating soup and jello! Loves that red jello!

If any of you have e-mailed or called Bob, he told me to tell you all that he apologizes for not answering your messages but as he starts feeling a little better he will get back to you. He so appreciates the love and support you have given him AND me. We thank you all from the bottom of our hearts. One day at a time, one foot in front of the other. This kind of healing takes a lot of patience. Thanks be to God!