Musa Update III

It’s very odd being on the other side of the ICU doors.  It’s especially odd being on the other side of a Sierra Leonean ICU.  The ICU here is set up quite differently from ours in America. Instead of rooms, it’s one giant room divided by curtains.  It’s not as visitor friendly, as they do not allow chairs next to the beds. I’ve taken it as a personal challenge and tried all different means to challenge my stamina. Leaning, crouching, squatting, etc.  I tried to just sit down on the ground but that caused a general uproar so I had to stand up again. 

I didn’t know this before, but when you have a patient in the ICU, your life revolves around the little numbers posted on the “visiting hours” sign.  You wait all day in the waiting room for the intermittent hours you’re permitted to go inside. (Keep in mind, this is here. I don’t remember us being as strict in the US).  Because you’re spending so much time in the waiting room, you develop a strange close relationship with perfect strangers whose only commonality is that you all have a loved one sick enough to be on the other side of those doors.  A tentative first hello quickly develops into shared stories, encouragement, laughter and tears.  Musa was initially admitted with five other ICU patients. In the days since his admission, several of them have transferred into the wards.  But their family members still come to visit us. It’s very strange. But really nice. 

After Musa’s first few days in the ICU, his condition really seemed to stabilize.  Two nights after we arrived, I went home and promptly had a breakdown with some friends. He just can’t keep on like this! He can’t keep breathing like this!!  When I’d left the hospital he’d been talking, but not really making sense.  I expected his death in the next day or two, and was just praying that I would be there when it happened.  I had considered sleeping in my car that night but had an important e-mail that had to be sent out so I headed back through the three hours of traffic to get home.

The next morning when I arrived at the hospital, I was expecting the worst but was pleasantly surprised to see that Musa was doing better! His breathing looked better! He was definitely still struggling, but it was a pretty remarkable turnaround from the previous evening.  Shortly after I arrived they whisked him away to do his ultrasound.

Musa’s kidneys are failing. We suspected that this is what was happening when we were at my hospital, but didn’t have the lab results to confirm it.  They did labs here the first night we arrived and confirmed what we’d suspected.  His kidneys were failing. But why????  I waited around until the afternoon to speak with the doctor about the ultrasound results. I suspected that the cyst had returned and was somehow impeding his kidney function.  I was wrong. In fact, it was a large kidney stone that the radiologist suspected was contributing to his kidney failure. 

As the doctor passed by in the afternoon, I stopped him to discuss the results.  I needed to know what our options were. Musa has failing kidneys and a large kidney stone.  So what do we do?  Unfortunately, not a lot.  In America, when someone has a large kidney stone that won’t pass on its own, there are several different non-invasive things we can do to bust up the kidney stone so it can pass.  Here, they do surgery. But no surgeon would touch Musa with his compromised respiratory status and failing kidneys.  So we just have to play the “wait and see” game.  Will Musa’s kidneys be able to recover on their own?   The doctor explained to Musa’s parents and I that he wasn’t without hope, but that Musa was indeed, very sick.

The next few days were a whirlwind of monotony.  Leave the house in the morning, go pick up Musa’s parents, sit in 2-3 hours of traffic before arriving at the hospital.  But medicine, pay for tests, spend time with Musa. Leave hospital at 6-7pm to sit in traffic for another 3 hours before returning home.  Next day? Repeat.

On Sunday morning, I sought out one of Musa’s doctors.  They had repeated Musa’s kidney function tests, and although he looked better clinically, his lab tests showed that his kidneys were worsening. He needed dialysis.  Unfortunately there is one dialysis machine in this country.  It was donated to the government hospital in Freetown, but up to this time has never been used. Dialysis, the option needed to save Musa, was really not an option.   

I didn’t know what to do.  The medicines we'd tried and the treatments up till now were not working. And I was out of money. (Please do not read this as a plea for help. I already did that and people have been MORE than generous. Thank you!!)  I had tallied the amount of money I’d spent in 4 days at this hospital, and it was more than what Marie and I live on in a month. Every morning they brought out a list of medicines that we needed to buy as well as the bill for any tests they had done.  I just couldn’t keep this up. Especially since we knew he wasn’t getting better. I was honest with the doctor. I told her that I was out of money and that I couldn’t afford to keep Musa at this hospital. We discussed transferring him to the government hospital or taking him home.  She told me she wanted to talk to her boss (the doctor that I really like) the next day.

After this discussion I went out to my car to call my dad.  He’s my go-to man when I have no idea what to do.  The pressure that I felt was beyond anything I think I’ve ever felt before. I love this kid. I’ve been “taking care” of him for months. His whole family is looking to me to see what to do.  I felt like I failed him. I called my Dad and explained the situation to him. Because of his medical background, he quickly understood that I really didn’t have many options.  After we discussed things for a while, my dad said something that I will probably never forget. He said, “Maybe your role in Musa’s life now is to teach him how to die.”  I lost it. How could I do that???  “Emily, Musa is a believer.  He has hope!  We’re out of medical options.  But God is still God.  We have hope that God can do a miracle and heal Musa like He did countless times in the Bible. But if He chooses not to, Musa has hope that when he dies he will spend eternity in heaven with His Savior, where there is no sickness, no pain, and no tears.  Paul said that for him to live is Christ, and to die is gain and that we do not grieve as those who have no hope.”  He was right. I knew it.  I stayed in my car for a little while to collect myself and went out to talk with his family. 

As we were leaving the hospital that evening , I broached the subject with his family.  I explained what the lab tests showed and that Musa really needed surgery to remove the kidney stone. But he needed dialysis in order to get well enough for the surgery.  And that we couldn’t do it. And that I was out of money. I suggested that we transfer him to the government hospital because I still felt like I had to keep trying something.  But Musa’s mom wanted to take him home.  And pray.  I had no logical reason to argue.

The next morning Musa’s doctor arrived and when I asked how he was doing, he said, “Well not as good as you! I hear you want to take him home.”  I asked him to go see Musa and then come chat with me when he was done.  As I was waiting for him, I started crying. He was going to try to convince me to stay. I know medical people. It’s not easy for us to give up. I had all this pressure to make a decision regarding the life of this boy, and I was petrified I was going to make the wrong one. 

As soon as the doctor came into the room I started explaining my reasoning for wanting to take him home. Of course I started crying and of course he immediately started begging me to stop doing. (They HATE crying women here!)  I explained my understanding of the lab results and his prognosis. I explained that I was out of money.  He sat and listened to me, and then basically repeated what I’d told him.  Musa’s prognosis just wasn’t good.  There was nothing more we could really do.  Then he said something that I was so thankful for. He said that if he was the patient and this was his prognosis, his mother would want to take him home too. Then he asked what he could do to help.

Lord thank you!! I know it was silly, but that confirmation was such an encouragement when I was feeling utterly alone in this decision. I knew in my head that it wasn’t true, but I felt like I was abandoning Musa and letting money rule my decisions.  This doctor was a godsend to remind me it wasn’t so.  This was Monday morning. I had a meeting in Freetown on Wednesday morning so I really didn’t think I could go up to my village and back before that time. It’s rainy season right now, and that road is brutal.  I had initially wanted to transfer him to the government hospital for a few days until we could go up, but then another family member approached me about just transferring him to the ward for a few days. This would be a much less expensive daily rate and would allow his mom to stay with him.  When the doctor asked what he could do to help, I offered this option.  They didn’t technically have to do it. Musa was still sick enough to need the ICU so I didn’t know if he would agree. He went to speak to management and when he came back told me that they’d agreed to let Musa stay in the ICU so he would still get the attention of the ICU, but only charge me the price of staying in the ward.  Once again, thank you Lord!!

The plan is to take him home tomorrow. And apart from a miracle from Jesus, Musa will most likely die.  This is going to be hard. Lord give me strength!!