Good morning. I wish I could say Tami is home, but sadly she still resides in room 5002 at Dignity hospital. They have done a fine job, and Tami has received wonderful care, but she misses home. It appeared to be set for friday and her potassium was too low. Discharge seemed certain for saturday but her Hgb dropped again and she needed blood. Her discharge loomed tantalizingly close, yet one more hurdle appeared in the exit doorway. Her suction machine she would need for her PEG was incorrect, and in fact could cause harm. The Residents wanted her with the right equipment, and sadly that will not arrive until tuesday or wednesday. On a much happier note her energy and strength improved enough for her to get to the elevators and then the nurses station and back with a walker. Joy right now is missing. Your prayers are what got her to a wedding, a Thanksgiving, and now Christmas is on our holiday event horizon. We appreciate all of the prayers and well wishing that floods Tami’s way, and we pray that negative thought can be transformed. Spiritual warfare is real, but she is not an ordinary warrior. The fight is on, and we must overcome negativity, and focus on mercy and grace.[...]
Well, well, well...
Just when everything looks bleak, and it is the darkest and coldest of the night, a ray of sunshine peeks through around the corner of our discontent. Since Tami had the PEG tube placed there has been no emesis. In what has been suctioned there is no bile and no blood! Her pain is better. First her glucoses were high and they were having to give insulin, and then they went so low (30’s) when off j-tube feedings that she was hallucinating. Yesterday the glucose levels were normal all day. She is no longer sleeping all day. Yesterday Tami went to have her stereotactic radiation therapy, and when Dr Gallardo set up the treatment and looked at the CT he said the tumor had shrunk visibly, and in only 2 weeks. He was impressed. So, with three tubes and perhaps a little uncertainty, Tami is coming home maybe today. We have a ways to go, but maybe the trip home will be easier than the climb up..[...]
Tami has looked so much better the last 2 days. Monday she looked better, but had an N-G tube in, which she hated. It drained more than a liter of bilious contents from a distended stomach. Two things were better, but now one was not. No one likes a tube through their nose into their stomach. She did not diverge from that significant consensus. It sucks. Yesterday at around 12:30 Dr Munnangi put in a PEG tube. A few hours later when Tami was feeling pressure it was resolved by simply hooking the tube up to intermittent low suction. Immediate relief. She still has some pain, but many of the things that were adding to the misery are now improved on. She even smiled, multiple times, and no grump. Tami is faithful in her earnest hope for her miracle, as are we, so while we are fiercely facing off in the middle of the storm, our feet are firmly planted, and our countenance is determinedly set.
No fear. She even had enough strength to miss Ryne. So, look out Devil. Tami is partway back.[...]
Tami is so tired of being in the hospital. I am tired for her. While she is quite tired of that room, we are getting too used to it as well. We try around our schedule to have someone there as much as possible. If only we could bring Ryne. So many things have unfolded. We spoke to Stanford about the difficulties we face with her obstruction of the gastric outflow. Her stomach being so distended just adds to the nausea, acid loss, and respiratory annoyance. All seem in a consensus to place a PEG tube to help all of these symptoms for Tami. Yesterday would have been the day except her potassium had dropped again too low for anesthesia and clotting had taken a big dump and was grossly abnormal with an INR over 6. That triggered the need for FFP and Vit K. She will sadly need an N-G tube to decompress the stomach before going to the OR, but I hope she can be controlled enough and stable enough to come home at some point. Last night she looked at me and asked, “Am I going home tonight?”. She did not throw up blood yesterday, and her pain was much better. I’m not sure why, but happy anyway that that component was set aside for a day. That allowed her to be so much more connected to us and to the conversation. Got a few smiles and one laugh as a consequence of our silliness. She didn’t even mind football. That was an unexpected plus, ha.[...]
Ryne is good, except for the occasional teary moments that will occur. Reassurance seems to work and then we are back to baseline. He did well in PT this week, but not as well as he is capable of. Ryne is healthy and looks so good. I am looking daily for the breakthrough I so badly would love to see. Taylor has been so great and caring in helping out at this difficult time. She and Robin helping Michael, Cathy, and Holli care for Ryne has allowed me to be part of the team caring for Tami. I have fewer hours available than the hours that are needed, and a strength requirement I am depending on God to fill.[...]
Here we are short on time but not short on gratitude. Thank you Terri for your organization skills. My oh my you are so amazing. Thank you to everyone praying for my dear Tami and for our son Ryne, and also to those caring for them. Ryne cried so hard for Tayler the night we were in the OR, and Taylor reassuring him calmed the storm. Then he tried to laugh with Cale’s joke. Thank you now and in advance for dinners so kindly and lovingly prepared. We are blessed. The poinsettia is beautiful Anna and Lori. Thank you Traylors, Sandy Henry, Walshs, Smiths, Laudates, and so many more. Your love is palpable. 🙏[...]
Today I am full of emotions. It is not bad, but it is filling. Dear Tami is so strong and so tolerant, yet so intolerant at times as well. Her intolerance comes when others are wronged and it is admirable that she stands even when she is weak. There is so much to be learned from quiet strength, private and courageous. I told her the same thing she told me; that the reason I married her is so I could kiss her anytime I want. Sweet Home Alabama aside, it is because I would want her in my foxhole during battle. She would not hide, or back down, or turn away, from her battle or from her God. Fierce love. So we are standing in this storm, and not alone. While some stand on weak principles of the world, I will stand on truth only. We will make it to the finish line wherever God places it, as will Ryne. My job is to trust and fight and help where I can on all of this borrowed time God so graciously gave to me. He is, that He is.[...]
We had a very blessed Thanksgiving with no turmoil. It is hard to see Tami suffer, but her will is strong. There has been more blood stain in what she throws up, which scares me. I know that fear has no place here, but I am human.
today her labs came back with her Hgb dropping down to 6.5! Now it is back to the hospital we go.[...]
It is 1 day before Thanksgiving Day and the world around me alters how I look and how I see what is before me. There are political squabbles that are being made front line by authors of supreme self importance. Family events of joy twist into fine detail evaluation of intent. Social media drives opinion of the heart without dialogue support. And no wonder we forget to look for God. We create these things that are not “of” God, so it is not a surprise He is not found in the middle, but still right there waiting. Times are not meant to be easy, but times are meant to contain joy. It is where we focus our attention that defines what we find. Tami is suffering. Ryne is trapped. We are still saved. How do we focus so much on our needs as we see them that we still miss that fact. We are still loved. How can that be suspended amidst the artificial intent of the world so often? Where is our focus?[...]
How it it possible this decade is nearly over. It was a tough one, and also a wonderful one.
Ryne is a little less melancholy, and I see him back on track somewhat. This past week was treading water in PT, but staying afloat. He is so blessed to have Bob and Michelle, as well as Ann and Jenni in the middle of this furious storm. It is those personal lanyards that prevent Ryne’s spirit from being blown away by tempestuous winds. He is still standing, against all odds, and so I continue to be reminded that “greater is He who is in me, than he who is in the world.” F&P.[...]