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.