Tonight at 2 am Jordan's oxygen sats dropped. They are 84%. I have out her back on 2-3 liters of oxygen and she is doing well. She is able to keep her sats up to normal with the O2. This unfortunately is not the first time this has happened, last Saturday night, the night before Easter I went to check on Jordan. Her sats were in the 60's. I think we all panicked, we were reminded of what happened one year before we she crashed and had to spend three months in ICU. Last week I gave her until 8 am to get her system back up or we would have to be seen at the local ER. (That didn't seem like a good plan, John and I have been trying to have a meeting with them to get a plan in place in case if something happens. They don't seem interested in doing that. We will have to keep trying as long as we are here! )By 8 am she was able to turn the O2 off and she has not been on it again until tonight. I think I finally might have some idea of what could be going on. Last night Jordan had some blisters, red, painful, that she noticed. They look like shingles. She has tested positive before for EBV which can cause shingles but she has never had an active infection. Tomorrow we are going to test her for EBV, CMV and a Cylex test to see how compromised her immune system is. The lower her immune system the higher it is that she has one or both of the above viruses. On her X-ray she took on Thursday they noticed a "nodule" in her lung, right, middle, 2.2"x 1.2. I haven't physically seen the X-ray. I've had them sent to LA for Dr C to see. It could be PTLD, a cancer caused by lowered immune systems due to transplant anti rejection drugs. Usually the outcomes of PTLD are very good. We hope and pray this is not something else we have to deal with! Jordan's PFT's at home have been up and down, now FEV1 is 1.1 to 0.9. She is coughing a lot and spends a lot of time in bed. Also, "Darth Vader" is back. Jordan sounds so loud and so bad she sounds like Darth Vader. She clearly has something going on...if it is CMV or EBV that gives us an explanation and empowers us to move forward. If those test are positive tomorrow we will have to return to LA. Usually an IV antiviral is what is given to treat it and we should be able to return home soon after. We will have to return home, even if Jordan needs to stay unless something changes. We can not afford to completely relocate for the FOURTH time! (Twice to St Louis, twice to Los Angeles.) God knows our needs and He knows what we need. Please pray for this sweet girl who never has a harsh word. She has the most tender spirit. I asked her last night if she was okay seeing that she might have something else going on. In her sweet voice she said she/we must trust in God, that He provides for his animals to be fed, how much more does He take care of us! More later when results are back!
We will need to fundraise to go travel back to Los Angeles. Gas, food, lodging and other miscellaneous expenses pile up. Donations are tax deductible. Thank you for your gift to further Jordan's Journey.
PLEASE Don't forget to donate to Jordan's Transplant fund.! ALL donations tomorrow, October 1 will be matched! Help Jordan continue her journey! I can't tell you how hard this month has been financially. There have been days where food was an issue and toilet paper gratefully appreciated. My heart breaks for my kids who have no choice but to do this, all to keep Jordan here. I can live without things, I cant live without my child!
Please feel free to share Jordan's online account info with your friends and contacts tomorrow. It we could raise $10,000 we might be able to breathe easier. Everything is so expensive here, we try to stay at home because of gas prices but three to four times a week we are needed at the hospital. Rent, food, utilities, medication, copays, travel, gas, misc, that just here in LA. At home there's the mortage, utilities, cell phone bills, gas. We have cut back everything we can and it's still not enough. Andrew, my son, has nightmares that we won't be able to pay rent and will have to come home. According to Jordan's doctors, as of now, she is still too unstable to return to Oklahoma. Jordan has fought so hard against this disease of CF. Don't let it beat her. Together we can fight it together!
I believe Jordan is still here for a reason. She says it's partly to share her story. I'm working on it. I'm praying we will be able to have the story continue. We have given all we have to save our daughter's life. It's still not enough. Thank you to those that have prayed for Jordan! Please include our finances in your prayers. Our money is gone, without a miracle we will have to tell Jordan we cant fight anymore and go home. My heart breaks. After all she's been through to have it come to this possibility! I couldn't bear it if that's the case! There is no other doctor or Hospital that can see Jordan except here in Los Angeles. We have tried every assurance program known but John makes too much money to qualify and too little money to pay these catastrophic expenses. Lst week I had to plead with the pharmacy to allow me to charge Jordan's medication, a medicationntht was literally life saving. It was one of th lowest points in my life.
Birthdays this year were so painful for me. Four children and not many presentd for any of them. It all goes to keep Jordan here. My children all said they would rather have Jordan then any birthdy presents. John has a great job and oh, how thankful I am for that job! But it's not enough to cover what we have to cover. Donald Trump would have a hard time as well!
Someone asked and I don't mind sharing.
Our home expenses in Oklahoma consist of mortgage, gas, electric, water, cable, cell phones, car payment, car insurance, house insurance, food, gasoline, John's medications for heart attack, Lesa's medications. These are expenses we would have normally. The expenses for the place in Los Angeles are rent, electricity, gas, water, Gasoline for car, food, medication for Jordan (co-pays mostly but expensive anyway.) misc expenses like Walmart, Target, also Jordan tube feeds that we have had to pay for for. It doesn't include clothing, toys, birthday presents, haircuts because we just can't do it. It's costing us several thousand dollars a month just to be here. My parents have given all, John's family have given all, John and I have given every dime we have or will ever hope to have. Our house has been refinanced long ago, everything maxed out just to barely get by. I am resolute. My daughter did not go through the Hell she went through to die from lack of transplant care. I would rather chew my arm off then ask for money. I would much more give it than receive it! (Those of you who know me personally know that!) I know Jordan almost died at Baylor in Dallas. Having her medi flighted saved her life and Jordan is adamant it's not over with yet. I hope she is not wrong. I hope and pray I don't have to tell her we have to go home. I must leave it in God's hands. We can't do this on our own. I almost dread calling my husband this last month. The weight of this was just too much. So frustrating, so scary to not be able to do it on your own. And for my husband who went to school, got the hard earned phD and to know it's still not enough makes him feel like a father who can't provide for his children. What a great dad he is!
I don't know the future with Jordan. Clearly we will not be able to stay out here a long time. I hope and pray Jordan either gets better or gets another transplant because the money is gone.
What a absolute miracle to learn that someone is matching the donations tomorrow. Even $1.00 will be hugely appreciated and used. I cant thank you enough for the care and concerns, thoughts and prayers you have given to Jordan. THANKS!
Please feel free to email me with any questions and please share this post with your family and friends!
Jordan's Online account
Bottled Up Grief!
i awoke last night crying as though my heart would break. Two boys, not so little anymore on either side of me, Ashton on one cell phone, John on the other as Andrew had called them. The clock flashes red, it's only 3 am. I feel as though I am suffocating, each breath harder and harder. Me. Lesa. Mother. Wife. Sister. Daughter. Granddaughter. Niece. Friend. Survivor. I never cry. Yet, somehow my tears have betrayed my body, waiting instead until I am asleep to let go, ripping without remorse down my cheeks into my pillow, onto the hair of these two precious boys on either side of me. The home phone rings. It's my other precious child, Jordan. Somehow, though no one called her, she senses things are not right. Now, our split family distanced by one mile, ten miles and 1500 miles are together in one room, bound together by this awful grief. Someone said, it couldn't get worse but yet in a matter of days it has. Jordan has no idea why I am so sad, thankfully. She's been too sleepy, in too much pain to understand the bomb dropped yesterday morning. As one, my boys take the phone with her on it to another room, I hear soothing noises from them, assuring her that all is well and Mommy is just tired. I pull myself together as Jordan insists on talking to me. I breathe a soft hello into the phone, trying to seem more sleepy then sad. It works as I promise her I'll call her back. My tears are subsiding followed by the enormity of it all. Real time, real life. How, out here in the land of La La could my life look more like a reality show, less than what should be a real life? If only I could tell all the story, be truthful and honest instead of being correct and proper. Some things will never be told, too much of my Grandmother is in me, insisting that all laundry, clean or dirty stays in the family so there it will stay. It, this time, is far worse then we could have imagined it. I did not realize CF was as evil as it is until now. It comes to steal, kill and destroy and it does all three. Families break up, children's lives are forever changed, both those with CF and the helpless siblings.
Jordan, my poor precious baby, has had three bronchoscopys this week, Tuesday, Wednesday, and Friday an emergency one. The new stent put in her bad left lung has folded up on itself, cutting off the air flow again. Dr C moved it, attempted to dilate it but it won't open above 4 mm. It's shut tight. And then, in that hurried, trying to be casual doctorly tone I hate, the bomb. No, the bombs, plural, as there were more then one that exploded into my soul. Scar tissue is developing in the left lung extraordinary quickly, what is there on Friday was not there on Tuesday! How can it be growing that fast? I knew, I knew but I asked anyway. Would this affect another transplant? Yes, he said, it would. You can't attach to scar tissue. It's too soft and bleed too easily. How I wish that had been all but it never is. The airway in the left lung is proving so difficult that on Monday she's having another bronc to try to put in a smaller stent. It that doesn't work, worse case senerio he will have to take out her entire left lung leaving her with only a right one. He says her right one is good...it might work. (The surface at Mars looks like is could sustain life...it might work!) Oh! My face was tight. I didn't say much at all except confusion was apparent. Then...wh she needs a transplant we might be able to transplant one,yes one lung in on the right side leaving her with only one lung again. I know there are people who live with one lung, my husband lives with a partial lung which makes him float funny. I think as Dr C is talking that Jordan wouldn't be able to float at all. The thought of Jordan having only one lung terrifies me. In my 22 year experience TWO lungs haven't worked out well, not once but now three times. One lung? One?
Then I think if no transplant why are we here, broke, in Los Angeles, California? I called to see IF Jordan could make it home could the doctor there see us? No, I learned was the answer. Not when we're talking about removing lungs, etc. So, I guess we're stuck out here. I'm perfecting willing to try a homeless shelter but I think they must have income requirements. So to explain...my husband has a job. He is a Professional. He makes too much money to qualify for welfare, homeless shelters, medicaid and anything else but not enough to take care of his daughter. Not many people, it we each thought about it honestly, could pack up, move to another state, rent another place on top of the mortgage back home, buy, borrow, rent pots, pans, vacuum cleaners, dishes, beds, furniture, a second electric bills, gas bill, water bill, bigger cell phone bills which are mandatory because the hospital requires one. Dads with the jobs usually have to stay home in the family house, separate utilities for that house, gas, water, electric, phone. Food for both places and still trying to keep the younger children in school, fed watered, clothed. No one could do it and yet we have had to or Jordan dies.
My anguish returns, Jordan's father didn't want to be a father, he saddled John with all his responsibilities. John, because he loved me, Jordan and Ashton made us a family, his family. Neither of us knew it would be like this. My husband with the good job, good insurance has given everything. He has nothing left. College funds? Gone with Jordan's first transplant in our move to St Louis. His retirement? He's 59 1/2 yet he knows he will never be able to retire. He has no retirement to retire with although he has had two heart attacks and may not be able to work forever. His retirement paid for the second transplant when we had to come to the only Hospital willing to transplant her in expensive Los Angeles, California. We live in a modest house that needs lots of repairs. While we were here in LA the first time, our in ground swimming pool at home broke and drained. $10,000 to fill it in, $10,000 to fix it. It will set there untouched for a long, long time. One bathroom doesn't work upstairs, it too will be undone. My car is ten years old, Johns car newer but still now four years old. Ashton bought her own car at age 19 cause we were paying for transplants. She's paying for her own college too since that went to pay for that as well. She doesn't mind any of the above, suprizingly...she would give everything she had for her sister to be here. None of us can imagine a life without Jordan.
Today, although I worked out a deal for an apartment here for cheaper rent it's still not enough. I couldn't pay my mortgage and my rent this month. Poor John. He has given EVERYTHING for a child that he met at age three. We need help from Jordan's dad's family since her father passed away but they won't help. Jordan is their sister and they dont want her or know her.
I am so afraid to have to tell Jordan we will have to go home because the money is gone. Over $50,000 this time alone, over $20,000 in hotel bills alone. There is nothing left. We have done ll we can, borrowed all we can, sold all we can. Case in point. Andrew's 16th birthday is tomorrow and it will be awful! My heart breaks for him. 16 is suppose to be wonderful, for him it will be visiting Jordan in her hospital room. There certainly will be no car in his future as Jordan at 22 is still waiting for one. The grandparents have sent him some money, from us we've told him he will have to wait until later. He, in such sweetness didn't get upset...his birthday wish is for Jordan to get well. I often feel bad for John. He spent years in school studying to get a phD to be able to have a better life. He didn't count on evil Cystic Fibrosis. None of this would matter if Jordan were well. None of us can imagine being without here. She's such a huge part of our family. She is our family.
The torment is Johns voice when we talk. He was raised to provide for his children, now he can't. Little comfort to
Tuesday, July 24 is Jordan's Birthday. She will be 22 years old! So many new emotions about this birthday, both for me, her mom and for Jordan too. A few weeks ago no one was sure Jordan would live long enough to reach this important milestone. While I am optimistic, I can not be foolish. This very well could be Jordan's LAST birthday. How I hope and pray not! I don't know what the further holds and because of that I want to ere on the side of doing as much for my daughter as I can. I have always wanted to buy Jordan a car, she has always wanted a Volkswagen Beetle. We had put the money aside for it but it was used the past few months in the onslaught of medical and motel bills, relocating back to California bills, etc. while Jordan fought to live. A car vs Jordan...I'll take Jordan any day but it was disappointing for Jordan, especially since Ashton, her younger sister has her own car. This is the unseen consequences to CF and lung transplants.
I'm not sure what we will get her for this very special of birthdays. I do know that I want to make it the best one she's ever had... So far ( optimistic still!) There are such wonderful people that follow Jordan on Caring Bridge and Facebook! The cards you sent lifted Jordan's spirits immensely. Thank You! For this birthday I have another request. If possible, I would like to ask people to please send Jordan a birthday card as well as a letter explaining how Jordan and/or her family have touched you in some way. To people who know Jordan or have known her I would especially ask the you write your memories, the first time you met her, how she was as a little girl, an older child, a preteen, a teen and finally a young adult. Thoughts about her faith, struggles with CF or other things, perseverance, her Faith as well as qualities you may admire. In other words, I want Jordan to know that she is important, she has been important, her life has served a purpose and that she is not alone is this struggle to live. Jordan is missing Hannah so badly right now, Hannah was her encouragement, her friend. With Hannah's passing, Jordan has now outlived all of her close CF friends leaving her kind of lonely, unsure that she does and has served a purpose, a greater good. She needs to know that her life, her journey does matter and is important. She needs to understand that her pain and sufferings have not be for nothing, that others have drawn encouragement from her refusing to give up! I truly believe that Jordan is a very special person, even though she's my daughter! How I would have loved to have met someone like her early in our CF Journey. She is so positive, so encouraging, so happy, so trusting, so Faithful! I want her to know tht other people see that too. This is our time to tell her how we feel where she can hear us. If this is her last birthday, then we will know she knew how special she was. If her birthday comes next year then she is left with wonderful memories scrapbooked of this day, July 24, 2012.
Cards, letters, etc can be mailed to the following address.
4805 BELLFLOWER AVE.
WEST TOLUCA LAKE, CA 91601
Lesa and John Ulrich