Sunday, July 31, 2011

Update 7/31/11 @ 12:13PM

Alan's O2 has been lowered to 70% and is doing well. They have also increased his feedings (NG feedings) from 10 to 20. The perfusionist said that his left lung looks a little better.

Update 7/31/11 @ 9:31AM

Alan remains critically stable with no changes from yesterday afternoon.

Saturday, July 30, 2011

Update 7/30/11 @ 3:21PM

The doctor came and put another chest tube in Alan's right chest to help with some of the pressure that was building from the small leak in his right lung. The doctor is not very concerned about the leak. They finished the plasmapheresis treatment without any complications again. They have also decreased his oxygen to 80%. Since they are having a harder time keeping Alan sedated they have given him a paralytic so he will not fight the respirator and will be able to rest better.

Update 7/30/11 @ 2:37AM

They have taken Alan off of his blood pressure medication. They had to increase his oxygen back to 90%. Other than that, there has not been much change.

Friday, July 29, 2011

Update 7/29/11 @ 4:57PM

Alan continues to be at a critically stable state. After the nurse who runs the plasmapheresis machine talked with the Alan's doctors, they decided to change the frequency of plasmapheresis. This way, the chemotherapy drug they are giving him will be in his system longer since the plasmapheresis removes some of the medications in the filtering process. They increased his oxygen back to 70% and have been having good oxygen saturation levels. Alan has developed a small leak in his right lung. The doctor said that there is nothing they can do about it now; however, the nurse checked his arterial blood gas (ABG) levels and the nurse said they were good. The nurse also indicated that they still hear lung sounds in his right lung in his upper lobe and a little in his lower lobe.

Blood Drive Update: There will be a blood drive held on Saturday, August 13. It will be at the Church of Jesus Christ of Latter-day Saints on Peach (220 N Peach in Clovis), just south of Herndon (Click here for a map) We will provide more details about the time when we find out. Thank you so much to all of those who have already donated.

Update 7/29/11 @ 1:25AM

The plasmapheresis machine and nurse came down from San Francisco and they started the treatment soon afterwards. They had just finished the first plasmapheresis treatment without any problems. The oncology nurse came afterwards with the Rituximab. It is a medication that will be given once a week for four weeks. She will be checking Alan every 20 minutes to make sure he does not have an adverse reaction to the medication. Since they started the medication at about 10:30PM, Alan has not had any adverse reaction. Also, they have decreased his respirator oxygen from 70% to 60% while maintaining good saturation levels. They will finish administering the medication by 3:00AM. His vital signs are good. The bleeding in his chest is minimal to none. They say that it should take a few days before we see any positive effects with the medication.

Thursday, July 28, 2011

Update 7/28/11 @ 11:05 AM

Alan had a pretty good night. He is still critically stable with his oxygen support at 70% now and is maintaining his saturation at near 100%, which is the best he has been! He has been bleeding in his chest again since last night, but not as much as before. He is still on steroids for the inflammation and they will put him on plasmapheresis (Click for more information) when the team and machine arrive from the bay area this afternoon.

Click here for additional information on plasmapheresis

Wednesday, July 27, 2011

Update 7/27/11 @ 5:45PM

They have decreased the amount of O2 they are giving him from 100% to 90% at noon. He has been tolerating it well and his saturation has still been around 100%. All his other vitals are looking good. They have turned him a little and have been able to suction out more old blood. They can hear a little more breath sounds in the left lung than what they could yesterday. They will be starting him on plasmapheresis as well as a new drug that has just been approved for Wegener’s, Rituximab. His nurse, Ashlee, said that it has been another “good day”.

*Blood Drive Update: We are also in the process of putting on a blood drive for Alan. We will keep you updated when we have the details.

Update 7/27/11 @ 1:20 PM

The doctors have decided to wait on using the Remicade and have decided to try a treatment that is not as harsh: plasmapheresis. The entire team working on Alan agrees that it would be a better option since it does not target the immune system directly. They will probably start him on it tomorrow morning since it takes a team to set it up. They hope to see signs of change three days from the start of the treatment.

Update 7/27/11 @ 12:00PM

At 3:30 AM Alan was still critically stable. His vital signs and oxygenation were looking good (blood saturation of 97-99%. His lungs were still sounding like they were yesterday and he is still not bleeding. He was still only on one BP medication and they were able to remove some liquid and looked better, but there is still a lot of fluid.

The posters and cards are up in his room and he is surrounded with love and faith.


At 9:00 AM the doctors approached us with a new strategy in treating Alan. Specialists at UCSF Fresno, UCSF San Francisco and Stanford have all been in collaboration reviewing Alan’s case. They feel that instead of a fungal infection (ie Valley Fever) they think he has an autoimmune disorder called Wegner’s granulomatosis (Go here for more information). It is basically a form of vasculitis, which is inflammation of the blood vessels that causes less blood to go to vital organs. The basis for their diagnosis is that the only positive test that has come back twice is anti-neutrophil cytoplasmic autoantibodies or ANCAs. ANCAs are basically like little commandos that have gone rogue and have started to attack the body instead of defend it. Alan also had blood in his urine when he was first admitted to the hospital in Selma, which makes the physicians much more confident that this is what he has. Wegener’s is not genetic, nor is it communicable. If it was something else, like Valley Fever, Alan should have responded by now to the medications he has been on since he has been on them since July 10. While they are not sure how one can get Wegener’s it may have been caused by any type of infection. The treatment is a chemotherapy drug called Remicade (Go here for more information). Like other chemotherapy treatments, it is designed to prevent the immune system from attacking the body. The treatment takes about a week and we should begin to see its effect in around three days or so. Since he will be on this chemotherapy, Alan will most likely be on a very stringent isolation protocol due to the severe consequences should he get an infection of any type. Visitation will be limited to immediate family.

We have setup an account for Alan with the Central California Blood Center. For those who are able to, we are asking for people to donate blood in his name. To do so, you can go to any Central California Blood Center and mention that you wish to donate blood in Alan’s name. You just need his first and last name. Since this blog is public, and to keep confidentiality for Alan, if you wish to donate but do not know his last name please contact a friend or family member for that information. Also on Friday, July 29, through the month of August the blood center will be doing their annual “Pint for Pint” promotion. The blood center will give you a voucher for a pint of ice cream to Baskin Robbins. For those who do not live in the San Joaquin Valley, we are asking that you still donate to your local blood bank or Red Cross.

Please continue to keep Alan in your thoughts and prayers.Thank you all for all of your continued support to Alan and his family.

Tuesday, July 26, 2011

Update 7/26/11 @ 6:45PM

Alan's nurse, Ashlee, said that today has been a "good day". His vitals are all looking great (P 110, BP 120/70, O2 95%). He is still on 100% O2, but his saturation has even improved from last night (which was 85% around midnight, which was pretty good). There has still been no bleeding from the chest tubes since around 8:30 last night, which is great! They hear lung sounds in the right lung and in the upper lobe of the left lung, which is the same as how it was last night at midnight. He is only on one BP medication (yesterday he was on 3). They started him on a blood thinner around noon, for the ECMO machine, and he has maintained his ability to clot blood (good thing). The medical staff have also started tube-feedings again. When we went in, Alan was looking a little less swollen than yesterday because they have been slowly taking off fluid. Ashlee also mentioned that he has been able to rest a lot today and that has helped him significantly improve.

We want to thank everyone for their continued support during all of this. We are especially grateful for honoring our request in limiting the visits at the hospital to immediate family only. Because of your understanding and support in this, Alan has been able to rest, heal and is that much stronger today than he was yesterday. Again, thank you for all of the prayers and support.

We are in the process of organizing a blood drive in behalf of Alan and more information will be forthcoming.