Chapter 9: Nomsa is still at the hospital.

I really can’t believe that I am writing this blog today, only 24-hours after I told you that Nomsa was coming home.  Brooke and I went to pick her up today and things went very badly.

When I arrived she was all packed up.  I brought her a suitcase that was large enough to put all of her small bags in. She had already given away the food that  I had brought her to help improve her health (peanut butter,  cereal, milk, peanuts etc) to the mother of Baby Rahab, trying to encourage her to eat and live. 

We took all her things to the car, she said her goodbyes to her friends. They all walked her down and gave hugs and kisses with promises of a visit soon. All we needed were the pills that she would continue to take to finish her treatment to insure that she didn’t “drop out” of the program again, as she had several times since she started her TB treatment in September 2011.

The nurse came out with bags of medication and many vials of what she would need to inject each day in to her hip.  That is when the red flag went up.  Injections were only given to patients who were still infectious.  When I asked the question the nurse confirmed that she still needed them and someone would have to go to her isolation room each day to give her the injection and pills.

STOP!

What did she mean isolation room?  Infectious?  Nomsa was moving to our Farm Manager Building where the rooms are open to each other above the wall. 

I asked the nurse how she could have been discharged under these conditions and she took us to the nursing room and showed me the papers.  They said, “Discharged at the patient’s request”.  Oh, Nomsa. 

Three hours later we had met with nurses and the Senior Doctor himself to find out what the situation was and how it was that they were discharging her.  In summary, Nomsa really wanted to leave the hospital (and who can blame her).  She pushed and pushed (I understand that) and finally convinced them that she could continue her treatment at home.  They went to her file and called her brother (next of kin contact) and asked if she had an isolation room to go to at home. He said yes.  They asked if she was welcome to go home.  He said yes.  They discharged her, with hesitation, but they agreed.  What they didn't know what that there is no one at that homestead (which is why she is welcome to stay there in isolation – it is empty).  There is no way to get food, medical treatment or support.  But most importantly, that is not where she was planning on going. 

I believe what happened is that she convinced them she had a place to go, they didn’t ask where (why would they – they would assume “home”) and they got enough confirmation to agree.

It was devastating.  And there is more.  She still needs to wait to get a “NEGATIVE” Culture in order to be discharged (another month of waiting), but they are concerned that because of her past drop outs and behavior and positive tests that she will be XDR-TB positive, which is the last stage and worst of Tuberculosis.  We pray that this is not the case.

She sobbed and sobbed and demanded to go home.  She said she would run away, which is a death sentence in and of itself.

The nurses were wonderful and spent a long time counciling her, encouraging her and trying to get her to understand.  Finally, I went down to the car and brought all her things back up to her bed.  Unpacked her, put the photos back on the wall and then found her crying on the staircase. 

Please pray with me for her desire to continue to live, her obedience to stay in the hospital until her test comes back, and her assurance that God has a plan for her life.

I came back home and slept for two hours, absolutely emotionally exhausted.   Now that I am up again, I am reminded that His plans are not our plans and while I desperately want her out of that hospital because I would feel better about it, I must want her to be there if that is still a part of His master plan.

Thanks for reading and praying with us.

Janine

Chapter 8: Nomsa is being DISCHARGED from the hospital tomorrow!

Nomsa's twins Leah and Rachel.

Today I am filled with joy and thanksgiving.  I got an SMS message (text message) from Nomsa asking me to call her.  It took me a while as Ian and I were in an all day attempt to get our Drivers Licenses renewed, so I didn’t call her right away. Five minutes later I got another message to call her so I feared the worst.  When she answered the phone I could hear joy in her voice and she almost screamed at me, “Janine, they have just discharged me from the hospital!”

What??  Only two weeks ago they told her that her Culture had come back positive, not for Tuberculosis, but for another lung infection that she had picked up at the hospital.  They said it should be cleared up in a month, but already they have test results back which show that she is no longer infected with Multi-drug Resistant Tuberculosis OR the other new infection. She is ready to leave the hospital.

Wow.  I am in awe.  Our prayers have been answered and just yesterday we started clearing the land for the Sicalo Lesisha Kibbutz where Nomsa will be able to live, work and grown in safety. 

I had to tell Nomsa that I couldn’t go and pick her up today, but would come tomorrow. I expected to hear her disappointment, but instead she said, “That’s okay Janine. I sill have work to do here.  The woman who is the mother of Baby Rahab is refusing to take Anti-Retro Viral medication so I will spend time today trying to convince her that she must take it to live.”

I told Nomsa that Baby Rahab (who is now living a the El Roi Baby Home) is HIV negative and Tuberculosis free so her mother has a good reason to take her medication and live. Nomsa has a mission for the next day and I pray that she will succeed.

Future site of the Sicalo Lesisha Kibbutz.

No one can predict the future and I don't know how it will go for Nomsa, but I do believe that she is mentally, physically and spiritually ready for a fresh start.  “Sicalo Lesisha” means “New Beginning” in siSwati and that is what she will get. Nomsa will move in to the Farm Managers Building on Project Canaan temporarily and will live there until the Kibbutz is built.  She will work on the farm (likely at the Khutsala Artisans Shop) and be a part of starting the jewelry making/sewing/crafts team.  She will remain on TB medication for months, but we can help manage that here at the El Rofi Medical Clinic, which should be open in June.  El Rofi is the Hebrew name for the “God who heals”.  I believe that Nomsa has been healed and has been given another chance.

Tomorrow she will come to Project Canaan for the first time and she will see her babies, Rachel and Leah for the first time in months. I have tears of joy just thinking of that reunion. I will take a photo and post it in this blog after she has been with them.   They will not go and live with her until she is fully healthy, stable and ready to take them.  That may be a year or two down the road, but these two babies will not be orphans.  What a great beginning to a new chapter.

From now on, this blog really will be Wednesdays WITH Nomsa.  Thanks Beth Blaisdell for pointing that out J.

Doing the happy dance in Swaziland.

Janine

PS – the sign on the door as you leave the hospital says, “Thank you for visiting me. Please come again”.  Nomsa and I will surely be back to visit others.

Chapter 7: Bad news, then some good news arrived.

 

I received an urgent call from Nomsa last Friday.   She said that the nurse came by and told her that her results CULTURE test were back and she wanted to discuss them with us.  Nomsa asked me to call her so that the nurse could explain the results to both of us.

I was in South Africa at the time and did not have a good cell line, but what I did hear clearly was that Nomsa’s culture came back POSITIVE, not NEGATIVE as we were praying for.  Not only that, the positive test showed a NEW lung infection called MOWT.  It wasn’t there last time she was tested, but now she had another infection! I could hear Nomsa crying in the background while the nurse gave us both the news.  We had both been praying that she would be leaving the hospital on the following Monday and that she would be moving to Project Canaan.  But no, she would be staying at the hospital for another 6-8+ months.

We were driving through McDonalds at the time and I just wept.  I know that God’s plans are better than our plans, and I instinctively knew that He was not finished with her at the TB hospital yet.  There was more for her to do, but I still cried for her.

I asked the nurse to keep a close eye on her over the weekend so that she didn’t harm herself and then I tried to calm her down as she sobbed on the other end of the phone.   We spoke several times over the next two days, and on Sunday morning after picking up Lori Marschall at the airport, we headed to visit Nomsa.

I told Nomsa on the phone that we would still celebrate her life together on Sunday and so we arrived with lollipops and fresh avacados for everyone in Nomsa’s ward along with fried chicken for Nomsa. 

We moved outside so that she could meet some of my friends (I only had 3 masks with me), but outside we can sit 3 feet away from each other.  She was so funny.  She made us all laugh with her approach to life, and then cry when she shared about the day that we met and she handed her newborn twins to a stranger. 

As we were chatting Nomsa’s nurse came out to meet me in person.  She said she wanted to better explain what the results meant. Then she dropped the real news… the GOOD NEWS!  Nomsa’s CULTURE actually came back NEGATIVE for Tuberculosis (which is what we were praying for), but POSTIVE for the MOWT.  What does that mean?  It means that she is no longer infectious with her Tuberculosis and that they were now treating her for MOWT, which should be cleared up within a month.  The nurse confirmed that she would have contracted MOWT in the hospital (good reason to get out!) and that they will run a CULTURE test again in a month and we await the result. 

I went back over to the area where my friends were sitting and shared the awesome news.  I am not sure there was a dry eye and while the news wasn’t all good news, it was much better than we thought it was! 

When we finished our visit and took Nomsa back upstairs to her ward to say goodbye she brought us over to a new patient who had arrived the day before.  She was very very sick (if she was admitted there it means she has HIV/AIDS and Multi-Drug Resistant Tuberculosis) and Nomsa told me that the woman gave birth a few weeks ago and the baby was in the hospital.  The woman had kind eyes and tried to smile, but then asked me if I could check on her baby.  I asked where the baby was and she told me.  That day (a Sunday) I was able to find the doctor who is caring for that baby to see how she is doing (yes, she is a girl).  I was told that they are waiting to see if the baby also has Multi-Drug Resistant Tuberculosis, then she was going to call me.  The very next day I spoke with the Social Welfare Officer who was letting me know about that baby. Today I received news that the baby is very very sick (vomiting, diarrhea, fever) and they are not hopeful.  But I am eternally hopeful that the baby will live and that maybe even the mother will live.  Stay tuned for more on this story.

Wouldn’t it be cool if Nomsa one day started to write this blog with her own stories of people in the hospital that she once was a patient in?  I am waiting expectantly for the next chapter of this story.

Janine

PS  - while I was speaking with the nurse my friends asked Nomsa if she knew how many people read this blog and how far reaching it is?  Her answer was simple, “I am here right now to support many other women that don’t have the support system that I have.” 

Thank YOU, the reader, for being that support system.

Chapter 6: My test results were lost!?

It has been four weeks since I was able to visit Nomsa.  When I saw last  her we were waiting for her TB Culture results to come back. If they were NEGATIVE she could leave the hospital. If they were POSITIVE she had to start the extensive treatment over again and was in the hospital for another 6+ months.  

Just after I left for the US we found out that her lab results had been lost.  Each culture takes six weeks to grow so they had to do another test and now we are waiting six more weeks for the results.  I know that everything is in His perfect timing and so I was anxious to hear how she was doing when I got home.

When I went to visit her I found her curled up asleep in her bed in the middle of the day.    She had been in bed for two days and was not strong emotionally.  The day before I visited her she had taken a double dose of her ARV’s accidently and was really sick, so tried to sleep it off.  Then this morning she told the nurse that she wanted to be discharged and leave the hospital.  The nurse reminded her that she can’t do that and that she must stay until she is well. It has been a long journey thus far, and it may be far from over.

So she got up, was happy to see me and started to unpack her “goodie” bags – roasted pork ribs, fragrant hand lotion a few PEOPLE magazines can sometimes bring light to a gloomy day.  Then I gave her a "Learn to Crochet" book and some yarn that my friend Becky sent for her.  We plan to her how to crochet so that she can be a part of the Khutsala Artisans Shop when she is discharged from the hospital.  After that I decided to show her some photos from my trip and we ended up looking at pictures from the first day we met at the back of the ambulance. It was an emotional time.  She never imagined that she would still be alive today, and honestly, neither did I.

Crocheting project from Becky Fern.

Nomsa had never seen a computer before. She was shocked at how small it was.  When I opened it my FaceBook page was there.  She had heard of FaceBook, but didn’t know what it was. Fortunately I had my “dongle” (cellular internet device) with me so I connected to the Internet, also new for Nomsa.  I was able to show her photos on my FaceBook page and then I took her to this blog site so she could see what people are looking at when they read Wednesdays With Nomsa. Each week I bring her a typed copy of what is written, but she hasn’t seen it in blog format.  To know that thousands of people knew who she was and were praying for her really started to sink in.

Nomsa looking at photos of her twins the day she gave them to us.

 Then I took her to the www.manna2go.com site where she watched a video of me telling a short version of HER STORY!  I hadn’t seen it myself so the two of us sat and wept.  To think that people around the world could hear about her, care about her, pray for her and even give financially to help build her a room while she stayed in bed and cried, was too much to imagine.  There were no words for her to express the emotion she was feeling so she just cried and shook her head.

Kayla Ferris putting out a challenge to help Nomsa.

 Then I decided to introduce her to skype.  By this time we were both getting excited.  She had never heard of Skype.  Suddenly there was Chloe inside the computer talking to us!  All the other women in the ward were standing behind her shaking their heads in sheer wonder.  Next, we Skyped my cousin Kim in Canada.  Imagine that?  These women who are suffering with HIV/AIDS and Multi-Drug Resistant Tuberculosis were able to talk to someone in Canada through a little machine on a side table at a TB hospital.  It was an exciting day that is hard to put in to words (I realize as am trying to type this).  The world suddenly became much smaller and the room she was in became much bigger.  Hope appeared in the form of a computer.

Nomsa and Chloe Skyping.

When it was time to leave Nomsa walked me to the top of the stairs.  She looked and me and cupped her hands together in front of her the way you would scoop water or hold a tiny bird.  She said, “I feel like the Lord is holding me in the palm of His hands and that I am safe and secure.  Even though I am sick and have been alone for a long time, I am not alone anymore.  He loves me and I know that for sure. I am okay now Janine.  You can go and we will meet again. I am okay.”

Once again, Nomsa showed me the power of the human spirit and the importance of faith, hope and love … the greatest of these is love.   

Janine

PS – The woman in the photo has been asking for a bible in siSwati for many many weeks.  I have had a hard time finding one, but found one on Sunday in a random box in our house!  When I gave it to her she screamed, danced, shouted and sang praises of thanks for giving her the only thing that she really wanted … a bible.  It was the perfect end to a great visit.

Doing a happy dance when she got her siSwati bible.