homeward Bound

Hello!

I am blogging from the UWMC and we have just received word that the 10-liter machine is en-route to Lynnwood and will be there by 4:30pm. Mom says, "and just when I thought I was going to get to watch the Husky stadium go up." We are packing her things and prepping for departure home. She had a raspberry mocha with breakfast, Chipotle for lunch and is feeling quite back to normal, at least with her appetite (her blood sugar says otherwise). The doctors and nurses are prepping all her meds and discharge paperwork for us to leave later this afternoon or evening. They are making sure we have 3 back up plans for oxygen at home so we can weather any natural disaster, power outage or equipment malfunction. What great technology we have access to!

Thank you to everyone for your continued support and effective prayers! As we have packed up all the flowers, cards and chocolates, we are reminded of all the love that has come through this room in the last two weeks. As we go, continue to pray for strength, continued increase in oxygen levels and lung functioning, patience for recovery and ease in settling into a new level of life activity (being home bound for awhile). If anyone wants to come hang out in Lynnwood, with Mom and Buddy, please call or text Mom at (206)354-9482. She isn't quite sure what needs will come up once she's home, but will keep Facebook and the blog posted with updates.

Love to everyone,

Jessica

And the winning continues!

Happy Thursday!

We don't have many updates for today. Mom's oxygen is continuing to improve and the aim is for her to head home on Sunday or Monday. She has been doing a lot of respiratory therapy and physical therapy. It is quite taxing on her energy but she is motivated by the goal of getting home. They are hoping to get a 10-liter oxygen machine at home and will be orchestrating that over the next couple days. She is looking forward to home cooked food and Buddy by her side. She is also looking forward to less interruptions during the night. On a computer note, she has remastered Bejeweled Blitz from her hospital room and is working her way up the high score chart. I am posting some pictures from the hospital on Facebook for everyone to check out.

Mom has requested that visiting hours be postponed until later notice. She is undergoing a lot of therapy for the next couple days and will be quite tired from all of that. She looks forward to people coming to visit once she's home. Thank you for following and thank you for your continued thoughts, prayers and support.

Jessica

Hi all,

Steve here giving you a brief update today. (The prayer of a righteous man avails much) Thank you all for your effective prayers. Billie continues to improve now doing well at 50% oxygen and had a good day with several visitors. The doctors continue to be impressed at her good progress and they are now hoping that she may even go directly home from the hospital. In order to do this she will need to decrease her oxygen needs to about 30% anticipating that she may be able to go home this weekend or early next week. They are also looking into ways of improving her chances of finding a donor lung. Thanks for all your encouraging visits, cards, calls and prayers. They have clearly kept us going in a very challenging time. Please continue to pray that the lungs improve, that Billie could get home and that a new lung would soon become available. Also that we would take advantage of every circumstance to learn and be available to God's intent.

Please feel free to visit if you would like as this has been really encouraging. Best time to visit is 1-3 ish. If other times would work better, feel free to give me a call at 206-354-9533.
Thanks again for your support,
Steve

Looking up!

My writing may be brief tonight, I'm feeling physically low on energy. My emotional energy is high, though, as Mom has had a tremendous day. Today she walked for the first time since last Monday. She made a whole lap around the floor and was able to maintain her oxygen saturation. She is still using 55-60% but showed significant improvement in ability to keep her oxygen up and heart rate down while moving. They are continuing to hold off on treating the heart shunt but are keeping her on steroids. Dr. Raghu came in today and congratulated her on the improvements and told her they were going to keep her on steroids. He even mentioned getting her home if this progress continued. Papa says they are looking into possibilities for higher liter home oxygen systems. They are also considering a nursing home or rehab situation for the interim. We're not out of the woods yet, but we're definitely seeing more light than we had in the previous few days. Please continue to pray for Mom's oxygen levels and for a lung to come in. Please also pray for the IPF to not progress any further.

On a birthday note...Papa surprised Mom this morning with a new MacBook Pro. She will now have continual access to her Facebook account, bejeweled blitz and the blog! She is very excited and accepting Mac tutorials. :) If we're lucky, she may put a note in on here in the coming days.

Tonight we had another big family dinner at the hospital with Papa's brother (Paul) and his wife (Patty) and son (Ben), as well as Uncle Charlie and Auntie Sue. Alison (Meneely) Wilson was Mom's nurse today and was so nice to bring us ice cream! She used to babysit us as kids and her parents are dear friends of Mom and Papa. It was so nice to see her today and have a touch of familiarity in the hospital.

Mom was really blessed by all the visitors that came today. She has been touched by the continual support and presence of people she loves. She said she would love for anyone who wants to come visit tomorrow to come between 1pm-4pm. If these times aren't working for your schedule and you'd like to arrange a different time, please call Papa's cell at (206)354-9533.

Much love to everyone,
Jessica

For me to live is Christ and to die is gain
Happy Birthday, my Beloved!!!
Hi everyone, and thank you for all your incredible support, prayers and kindness during this tough time. This is Steve, as I managed to steal Jessica's password, before she had a chance to post today. I need to first thank Jessica for her very accurate technical updates as well as reflecting the emotions and interactions of friends and family. She has reflected my heart, often better that I think I could have myself.
Let me start, by noting that I continue to become more aware at how God has gifted me so incredibly with 28 years with Billie. 28 more would not nearly be enough, but I feel as if I have been blessed with an amount of joy in my relationship with her that many may not see in multiple lifetimes. All this makes it the more painful to contemplate that it may not continue until we meet again on the other side. As I see many of your responses, I see I am not the only one affected this way by this incredibly fun and relational lady. Over the last week, in the middle of procedures, beeping instruments and being awakened every 30 minutes through the night for hospital stuff, she remains an encouragement to her friends and family and has been sharing with hospital staff. She even wanted her stamping equipment brought to the hospital to make thankyou cards.

Today was a busy day, being taken early in the morning to evaluate the right sided high blood pressure in her heart. The plan was to put a monitor into the heart and then go to the ICU where this could be monitored while a new medication was tried to lower this pressure and possibly improve her oxygen levels. As it turns out, her heart function was much better than expected and the right side of the heart's readings were actually normal. This is a double edged sword in that the heart is proven strong, but we were hoping to add a medication that could help her oxygenation. She is now back in her regular room and feeling even a little better today. After 4-5 days of worsening oxygen levels to the point of needing 90% oxygen(getting very close to being put on a ventilator and Dr Raghu giving her only a few days to live ), the levels have slowly steadily improved the last 3-4 days. She now is needing 55-60% oxygen and will need to get down to 30-35% to be able to go home. She is beginning to taper her steroids today and has completed her antibiotics today. If things continue to improve, she may be able to go to a rehabilition center in a few days, getting the higher doses of oxygen that they can provide. The one last question that we need to consider is whether the hole in her heart needs to be repaired to help the oxygen. If all this is a bit confusing, take heart that it is also confusing the 4 teams of doctors that have been doing an outstanding job of working with Billie. We would appreciate your prayers about the following:

1 That the improvement in oxygen will continue and not backtrack with the tapering of the steroids
2 That the doctors would have wisdom in knowing how to treat the leaking in the heart.
3 That a lung transplant may become available before any further decline
4 That whatever happens, and in the midst of our lack of understanding, that we understand that God is in control, and that we would be flexible to be used for his grand purposes.

Billie comments that her itinerary has cleared, and she would love to see visitors. I'd suggest that we try to keep visiting to 1-4 pm and visits of 15 minutes. Billie would love to talk longer, but does tire easily. (Your flowers and cards have been much appreciated, but right now cards are easier to take care of than flowers)
Thanks-
In His Grace,
Steve

Sunday

Today has been quite busy and emotional. I will start with the medical updates and then let you in on some highlights from the day.

For those who visited and were curious about the numbers on all the machines; the number between 88 and 97 on the top machine is the percent of oxygen in Mom's blood at any given time and the number below it is her heart rate. She ideally needs to keep her oxygen at above 90 at all times. The lower machine controls the concentration of oxygen that is flowing into her breathing apparatus. This percent varies based on her lung's need. To give you perspective, the air we breathe is 20-21% oxygen. A couple days ago Mom's oxygen was concentrated at 80-85%. Over the last day she has been requiring 60-65%. We hope that this decrease in oxygen need continues. It's possible to get about 30-40% in oxygen tanks that are used in the home. The amount she requires now is only available in hospitals. Her need will have to get down to 30% with moving around before she can safely go home. We are attributing the significant drop in oxygen need to the steroids she has been on. Starting tomorrow they will begin to taper off and we will see if the oxygen levels will stay and ideally continue coming down.

Tomorrow is going to be a day filled with doctors, tests, moving rooms, checking levels and watching for results. Today Mom's kidneys showed some distress indicating that there could be some worsening hypertension in her heart. Mom will be given a catheter in her neck to closely monitor her heart and will be moved to the ICU. They are planning to attempt a treatment for the pulmonary hypertension (discussed in the first blog) with a short treatment to see how it reacts with her body and the IPF (idiopathic pulmonary fibrosis). With the decrease in the steroids and the new heart treatment there are a lot of unknowns. The next few days will be critical in determining the long term prognosis for Mom. We do want to stress that it will go very drastically one way or the other and we are sitting in front of a heap of unknowns.

The medical can be quite daunting and leaves much room for depression and heartache. That said, I want you to know how strong and how vibrant Mom has been through this entire disease. It hasn't been easy, but she has not let down her faith, her relationships or her spirit. She continues to smile, laugh and embrace us with nothing but love and affection. There have been many tears in the last few days and none of us have ever been through anything so difficult. I look at the heartache and the pain that is so deeply manifested and know that it wouldn't be so if the impact she had on our lives wasn't equally as deep in love and joy. Mom continues to say, and has said since the diagnosis, that she is thankful for the chance to say everything she wants to say to those she loves. Mom and Papa say they have no regrets from their 28 years of marriage and have taken the last year to seize every moment, take the trips they'd dreamed of and spent valuable time with friends and family.

Mom turns 55 today (Monday). We had a celebration for her tonight with the family. I've attached a picture of her with the cake. We couldn't light the candles because it would explode the oxygen so Mom "blew out" the unlit candles with the spare oxygen mask. Charlie (Mom's older brother) flew in from Alaska last night and Auntie Sue (Mom's best friend) flew in this evening from San Francisco. Uncle Dwight (Mom's younger brother) and his family came over from Kirkland and provided a feast to include sushi and chocolate cake. Katie (Jeremy's girlfriend) also made a delicious dirt cake. We laughed, ate and told funny stories ranging from Mom planning her own surprise birthday party with Auntie Sue in 9th grade to Mom's contagious giggling on almost any roller coaster or Disneyland ride. Sue also brought a 45 of one of Mom's favorite Japanese Pop songs from the 60s. We listened to it on YouTube and Mom sang along. Here's the YouTube link in case you want to hear it... http://www.youtube.com/watch?v=mvuO0BsEEss It was a wonderful night.

Tomorrow Mom has requested no visitors. It's going to be a taxing day with all the medical work being done. We will keep the blog posted with medical updates and visiting hours for the following days. Thank you for your continued prayer and support.

On a final note for the night, Mom's kitchen is almost finished being remodeled and she says she needs to get home to use it.

Updates

Hello again,

My updates for today are not drastic one way or another. They have continued to treat Mom with the steroids as well as the antibiotics. The thinking behind the antibiotics is that if there is any lingering infection then this will continue to treat that. The steroids have given Mom so much adrenaline that she didn't sleep much at all last night. It's hard to know what affect the steroids are having at this point. She hasn't had any significant decrease in the amount of oxygen that she needs. It'll be another day or two until we can tell if they are making an impact. The unfortunate piece is that we do need to see a significant increase in her oxygen intake in the next day or two or things won't be looking well. As far as the pulmonary hypertension, they are holding off using that medication until they are done with the steroids. It could potentially help or it could make things drastically worse, so they are waiting to start that option until later on.

She was warmly visited by many dear friends and family today. We were so blessed by an abundance of food, flowers and gifts. We are anticipating Mom being quite low on energy tomorrow because of it being the second day of being awake on steroids. We would love for people to continue to come visit and have set aside 1pm-3pm tomorrow afternoon for people to come by. In order to be conscious of Mom's energy levels, we would ask that visitors stay for about 15-30 minutes. She is staying at UW Medical Center in 6NE in room 6238.

That's all for tonight, thank you for all your prayers, thoughts and kind words. We feel so blessed to have so many dear people in our lives who have surrounded us with love. Thank you, thank you, thank you from all of us,

Mom, Papa, Jeremy, Bethany, Mackenzie and I

Mom

Hello to family and friends,

I've never blogged before so forgive me as I attempt to convey what is happening with Mom right now. First, for anyone who is just joining the loop, Mom was diagnosed with idiopathic pulmonary fibrosis last March. She has been on oxygen and in therapy ever since. She initially improved with the oxygen and exercise and had stayed stable since then. She has been on the lung transplant list which is her main hope for living out her life. Without the transplant she is looking at 2-4 years to live after the initial diagnosis. Pulmonary fibrosis is a disease effecting the membrane between the lungs and the heart affecting the transfer of oxygen from the lungs to the blood stream. With pulmonary fibrosis, this membrane thickens and decreases the oxygen's ability to transfer into the blood stream.

A couple weeks ago she came down with pneumonia and was hospitalized at UW where her main doctor is (Dr. Raghu). We are fortunate that he is one of the world's leading doctors in pulmonary fibrosis and has been on her case since the start. The pneumonia was treated with antibiotics and she was sent home. She continued to have a lot of trouble breathing and moving without significant breaks to restore her oxygen levels. On Sunday night she woke up having trouble breathing in the middle of the night and with a fever. She was taken into the UW on Monday where she has been ever since.

Initially they were investigating for a missed infection and had her on a number of antibiotics. Her white cell (immune system) count was steadily increasing and the doctors felt they were missing an infection. She had some pain in her back and was given a CT scan and MRI to see if something was going on there. They never found any other infections and today her white cell counts began to come down. With the absence of an infection, her oxygen levels should have been returning to normal. Unfortunately her oxygen levels are not increasing.

There are two things the doctors are going to attempt today and tomorrow to see if they can combat the fibrosis.

1. The MRI showed that the membrane around her lungs has thickened significantly over the past week. There is a chance that this is temporary inflammation that can be reversed with steroids. She is currently on the cortisone steroids to try and reverse this inflammation. The hope is that this is not a permanent progression of the fibrosis.

2. There is a valve in the center of the heart that the blood is not supposed to travel between except at birth. The blood travels from the left side, down to get oxygen from the lung and then to the right side and back through the body. If there is pulmonary hypertension, the pressure from the lungs is greater than the right side of heart so instead of the blood traveling from the left side, into the lungs and then to the right side, it skips the lungs and travels through the center flap straight to the right side. This flap is used while in utero when the lungs are not yet functioning and the blood circulates straight through the body without the lungs. It looks as though this is happening with Mom right now and they are going to attempt medication to remove the hypertension.

Papa says that there is about a 50% chance that one of these will work. If they don't work then she will most likely be on a ventilator in a couple days and has about 10 days to live. She has read all the Facebook comments and messages and sends her love and thanks to everyone thinking of her and praying.

Prayer requests from the family:

1. Strength for Mom emotionally and physically
2. That the steroids and pulmonary hypertension medication would help the oxygen levels
3. That a lung transplant would become available
4. Wisdom for the doctors
5. Peace and hope for the family

The best way to contact us would be through email at namleerc@msn.com or through Papa's cell (206)354-9533 or my cell at (206)354-9505 (call or text).