Maria's Diagnosis & Treatment

April 8
Her bronchoscopy follow up visit for last Friday was rescheduled for this Friday April 12.  We are still waiting in suspense since they called a week ago to tell us they found something but, were not sure what it was.  This past week was uneventful just working on moving and doing a lot of clean up.  We've attended 412 church in San Jacinto and I think we are staying there.  We met the senior pastor Tom Hughes back in 2005 when he was at Harvest.  I'll you all informed after our appointment on Friday. 

March 28, 2019. Here is an update on my wife's health.  Currently she is struggling with irregular heart beat.  We assume, including doctors, that it is due to her medications.  She is on Warfarin medication for the blood clots in her lungs.  This is the only real treatment and direction provided when released from Saint Mary's Medical Center in Long Beach.  Since they could not find anything else wrong with Maria, there is no direction from them for her breathing challenges.  There are many things doctors can't explain and don't know about her health.  The blood clots alone were not the cause for her almost dying. 

On the day Maria was released from Saint Mary's, two of her sisters visited from Guadalajara.  One of her sisters is a doctor and has contacts with many doctors in Mexico and a few in the states.  She put us in contact with an infectious disease specialist in Denver.  He has experience with mold poisoning and seems to know how to treat it.  Our family was exposed to mold at the house we moved to in 2017 and it is possible she became ill then.  Mold abatement was done afterwards but she was already sick.  This doctor spoke to Maria over the phone and believes it is mold that is making her sick.  He sent a medication treatment to our local pharmacy and Maria began taking it immediately.   Mold treatments are very lengthy at least 6 months.  You have to take one type of medication and wait for approximately 3 months before you see results.  If the patient does not improve the medication is switched to a different type and start the process all over.  This is what we have been told.  Medication for this treatment alone costs almost six thousand per month though, we are hoping it is covered by insurance.  We will go see this doctor in Denver as soon as Maria is able to travel by car.  She is really weak still and flying is out of the question due to the clots.  

Her illness began in April 2017 with asthma like symptoms that grew to severe struggles to breath with oxygen saturation levels below 90 and in the 70s at times.  In the low 80s and 70s it gets scary.  During her illness she has been seen by a couple dozen doctors, has been to the ER 6 times, of those hospitalized twice.  In December 2017 she spent three days at Centinela Medical Center in Inglewood and twelve days this year at Saint Mary's.  Of those twelve days she was placed in a medical induced coma for 4 days.  Doctors at both hospitals diagnosed her with asthma.  It's frustrating.  When they say asthma I keep asking the following question, "If my wife is dying of asthma, why are her lungs perfectly clear?"  They all respond with, "I don't know."  All other tests and exams came back negative or normal. 

We keep searching for medical help because we know what happened the other 5 times in the ER and Centinela.  She is ok for a few days or a few weeks and then her oxygen drops again.  One of the things we are doing to help her breathing is we moved from Idyllwild to San Jacinto, doctors also recommended us to move and advised us not to live in high altitude or high pollen/humidity areas.  It was Maria's decision to purchase a travel trailer and live in it.  This way if the environment is bad for her we can hitch up and move vs. signing a one year lease on a rental.  It is also significantly cheaper than renting although it is like living in a tiny house.  I used to watch the tiny house tv shows and always said, "No Thanks" yet, here we are.  Now that we are here it's no so bad especially because we get to be together more often.

Below are my updates I shared online from St. Mary Medical Center.  I was careful on how I worded the coma part in case our girls read about it online.  I wanted to shield them a bit from the reality of mom's condition.  Right before the coma I was told that if this was not done she would not make it through the night and that it was no guaranty it would work.  That night was beyond stressful.  I knew she would enter heaven if the Lord decided to take her that night.  I selfishly want her here.   That nigh I struggled with the questions, How am I going to tell our three daughters that mom is gone if she doesn't make it? or How am I going to raise them alone?  I can't do what mom does.  I am really glad she is still here and Maria and I are learning to trust in Him for when the time comes where it is sooner than we want or many years from now. 

We know God is in control of my wife's life.  Despite the stress Maria, our girls, and I are going through we are seeing his goodness in our lives. 

                                                                                               Our communications from the hospital.
 
2/24/19 Morning
Last night Maria was hospitalized at Saint Mary Medical Center in Long Beach. She was intubated as soon as she got here by ambulance.  She just got moved to ICU. Not sure what will happen next as we wait.  I ask for prayer for a proper diagnosis and Lord willing healing.  (Oxygen levels were in the mid 80s, heart rate at 215 when ambulance was called)

2/24/19 Night
I have an update. Tonight at 09:50 pm Maria was placed in a medical induced coma. She is not good. She has blood clots in her lungs as well as fungus and possible parasites derived from fungus.  The nurse who delivered this news appeared to be worried as am I. The hospital staff does not know how long this will last. 

2/25/19
Maria had a good night. Her Ph levels increased to 7.27 from 7.11. Oxygen and other vitals are ok. 
She has had 29 different meds, ivy, antibiotics, etc. 
I met with her main doctor today and here are the prayer requests. 
We are to expect the coma to last a few weeks. (3 more or less). Expect good days and bad days. 
She has 2 blood clots, one in each lung. 
She is dealing with severe Asthma symptoms. 
She went into shock, very low blood pressure. 
High risk of infection. 
More tests to be done for cancer, blood disorder, lupus, tb, mold, and more. 

2/27/19
Tuesday late night. We are very grateful for all your prayers. We saw God Answer the prayers of so many of you.  Maria had a really good day. Vitals continue to improve. Blood clots are being monitored closely.  Medical staff recognize there is a respiratory problem not identified and are looking into it closer. 

Our prayer requests are;
Blood clot healing 
Additional tests, results 
Gain of consciousness with no complications 
Exact Diagnosis of respiratory problems and/or full healing from it 
Our girls
Rest

Thank you for the notes of encouragement and help. You all make us feel loved and cared for. We are not alone. 

I was Too tired and forgot hit send last night.

Wednesday morning. Maria’s vitals 
Are still doing well. 


2/28/19 early am
It is with great joy that I announce the medically induced coma was stopped and Maria has gained consciousness. She is still dependent on oxygen through intubation. Later Today she will be given a chance to remove the tube if she is able to breathe on her own. She cannot move much and can’t communicate much.  Moving her hands a few inches appears to wipe her out. We are able to communicate with the blink once for yes and two for no. Sometimes she gets visibly frustrated because I keep asking the wrong questions and the questions have to be answered with yes or no. Eventually get to there. 

I can’t express the joy and relief I’m going through right now. 

We pray this progresses doesn’t get hindered with complications such as an infection. We still await a diagnosis for the clots, test results, and what has caused breathing problems for the last 22 months. 

In addition our girls have gone through unusually high levels of stress. Please pray for them. The stress might be making one of them sick. 
When we are feeling down or in the quiet moments late at night, your messages and prayers lift us up. 
Thank you all.

3/4/19  ( I hope this update makes sense.  I was sleeping about 3 hours a night since we got to the hospital.)
Good morning All,
We want to share how Maria is doing.  When I look at her, I am amazed at how she is doing.  Just a few days ago she was in a coma (medically induced). Now she is talking, laughing, and even standing up out of bed.  In the ICU room we witnessed (I witnessed) God's hand at work in my wife.  
My last update was Thursday morning 2/28.  Maria had gained conciousness and we were beginning to communicated through eye blinking.  The next couple of days were very exhausting.  While in a coma there was little for me to do to assist her but after the coma it was different.  She was still intubated and she had to gain full conciousness and accept the tube down her throat.  Her wrists were strapped to the bed so she would not reach for the tube and pull it out. For approximately 24 hours we had to continue to communicate with eye blinks and the more the parilizing medication wore off the more desperate she would get.  Ari and Elly visited during this time and she smiled at both (sedated, intubated and all) when she saw each of them.  Eventually she understood she had to calm down and pass a two hour breathing trial with minimal assistance from the oxygen machine.  Once the tube came out the next 20 to 30 hours were restless for her but slowly she gained more and more strength.  After extubation it took her about 10 hours to speak and she was feisty.  At one point she kicked everybody out of the room except me.  Her best phrase was with a raspy firm voice, "You, Get Out!" while pointing at our nephew.  She told everyone to leave so naturally I asked, "What about me?"  With the same raspy voice she replied, "You, Stay!" That was too bad because I kind of wanted to leave too.  It was awesome and of course we are not letting her forget that night.  

She did do much better Friday and engaged in a little conversation on and off.  On Saturday she was more alert and was moved out of ICU to the recovery floor.  

So far this part of the story has been easy to understand and easy to follow for us.  She became sick, got very serious and now she is better.  The part that is difficult is the Why and What.  Doctors do not know what caused the blood clots.  They do not know why she got this sick to the point that she needed to be in a coma.  We have talked to about 8 doctors, especially her 2 primary in ICU and the one in Surg Med/Recovery and we actually keeping getting different answers from them. It's crazy because we are still here in the hospital .  It's like they are not talking to each other about Maria's diagnosis.  They keep saying it's Asthma yet they can't explain why her lungs are clear while she has asthma attacks.  

Maria and I know God is with us and this is nothing short of a miracle.  Thank you for coming along side us. We will let keep you posted.    

Our prayer requests are:
A diagonsis and/or complete healing
For medicine side affects to be minimal or non-existant
Our family to live together again
Moving
Finances
Our daughters' and my health, and of course Maria


3/8/19
Yesterday evening Maria was released from the hospital.  She is doing ok, eating better and walking a little further each day with her trusty walker.  We decided to stay in Long Beach to be close to St. Mary Medical Center in case she needs to go back promptly.  I’ll be going back and forth to Idyllwild while we figure out where we will live while Maria recovers.  Our hope is that she will have a complete recovery. 
We left the hospital without a diagnosis.  Doctors were not able to figure out why she got blood clots in her lungs or why she became as ill is she did.   All tests came back normal or negative.  Asthma was the only diagnosis.  We will see a pulmonologist in the coming weeks and have a Pulmonary Function Test done and look into more allergy tests. 
This illness has taken a toll on her physically but our whole family is glad to see here out of the hospital.  She recounts how she was exhausted while asleep (in coma) and told the Lord that she was fine with whatever decision God made to keep her alive or take her.  She was at peace with either decision and she hoped our girls and I would be okay with it as well.  The Lord gave Maria peace and rest afterwards.
We thank all of you who kept us in prayer.  We felt God’s presence in the difficult times. We pray God will use all this for His glory.  We hold on to His promises in Jeremiah 29:11, and Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer. 
Prayer requests:
For complete healing
Our move to the city, transition for all of us especially our older girls
Finances
Rest and family time
That we would be encouraged to follow the Lord in the midst of trials
Ari & Elly's health, Ari's trip to Hume Lake trip with the youth worship team in 2 weeks.