Wow, the whole Luka story!

March 12,2010

I began this story over a week into it because this is my first chance to sit and gather my thoughts. Right now Luka is sleeping in his small hospital crib. My mind is still catching up on all that just happened. Before Luka needs me or becomes unsettled, the nurse comes to do something, or I am worried about a noise or a movement – let me share how our world turned upside-down.
Last Tuesday, March 2, Luka started with diarrhea but was still happy and normal. By Friday I saw some blood so we began to treat him. Saturday and Sunday he took a turn for the worse with vomiting added so we began to get worried about dehydration. Monday morning there was not much improvement. He lay there so sad and helpless. We couldn’t decide what to do – try the clinic in Soroti that we do not really trust or go 6 hours away to Kampala to a good clinic. Josh finally made the decision and we went to Kampala. You never regret doing all you can for your child to be healthy.
It felt really crazy to pack up, get sitters (Bobby and Rachel) to stay with Lydia and Grace, cancel Josh’s teaching, and go to Kampala. We told them we would be gone a night and return late the next afternoon, or so we thought. We arrived at the clinic in Kampala Monday afternoon. The doctor thought it was a flu going around and Luka was probably dehydrated. He took a blood test for malaria (which we had already done, it was negative), wanted a urine and stool sample, and had us give him 5ml of sugar water every five minutes for two hours. (In the morning we had noticed a few weird reddish/purple spots had developed on Luka. By 9:00pm we had not noticed any progress and Luka was annoyed and tired. He sent us “home” (we had to find a hotel) and told us to come back Tuesday if Luka wasn’t well yet.
Tuesday, March 9, we went back to the clinic. Luka was definitely still sick. The night had been restless, he was a bit lethargic, and had bad diarrhea. Tuesday things got a bit more serious since Luka had not urinated in over 24 hours. They had him take more fluids (miserable in my opinion – Luka did not want it, we had to force it, he did not feel well. My gut said this is not right. He isn’t right. We have to figure out the cause. Josh wanted to continue forcing fluids.) We decided to give Luka a break and went to lunch with him. He promptly vomited all the fluids we had given him. His stomach couldn’t handle it. No urine yet despite all the fluids…why?
Then they tried an IV. Awful! Five painful, screaming, failed attempts. Either his veins are too small, weak, or dehydrated – or all, but they busted every time. So they put a tube down his nose into his stomach to put fluids in. After a while Luka did not enjoy that. Again, it just wasn’t right. He moaned every time we put more in. What do you do? I am not a trained professional. I felt so bad and hated the whole thing. He vomited again so they gave him anti-nausea medicine. No urine so we stayed in the clinic through the night so we could give him fluids every five minutes (a long night.)
Sometime in the evening we heard from my mom about Luka’s pediatrician’s (in the USA) concerns. Then we got more worried. I felt my feelings were confirmed. Josh did a great job advocating for us. The night doctor agreed to try another IV, this time in the side of Luka’s head. I was really upset by it all – I think Luka and I were both traumatized. They had to shave some of his hair away on the side of his head, then he screamed as josh held him down while they tried the IV. Only to fail again! I was so done with it all. I just wanted to hold Luka, protect him, and take away all the pain.
Now we were really worried about the kidneys. They did an ultrasound and said the kidneys looked fine but there was not much urine in the bladder. So where were all the fluids going? I was confused but knew we needed to get an answer. It was now Wednesday. We’ve been away from our girls for three days, Luka was sick – really sick, and we had no answers. By now many people were praying for Luka so we held on to that tightly. In some ways everything is a blur, but I do know that Wednesday was the hardest day of my life. By lunch we still didn’t have urine and it had now been 48 hours. The doctor finally put a catheter in (had to try 3 times – poor Luka). When the doctor was finally successful there was very little urine. It was very dark (brownish red). After that they took blood. From then on everything changed.
The urine sample showed a lot of blood. The blood sample showed he was very anemic. The doctor was quite puzzled. I could tell whatever was happening, it wasn’t good. The doctor cam and explained that there is a very rare disease called hemolytic uremic syndrome (HUS). He said he has never seen a case. He said it begins with a form of dysentery (Shegella – which Luka had) or ecoli then some people develop this HUS. HUS breaks down your own blood, causing anemia, and causes the kidneys to fail. He told us we would need to be medically evacuated to Nairob for Luka to be treated. At this point I broke down. Was my baby going to be OK? How much danger was he in? We were going to what? Go where? Today? What about Lydia and Grace? My mind and heart went into panic – shock.
The doctor said they could not give Luka the care he needed in Kampala. He needed a blood transfusion and needed to be on kidney dialysis. We asked about going to the USA or even South Africa so we could be with people we knew. The doctor said there wasn’t time to go that far. Luka needed treatment today! He told us he was sending us to the best doctors and care available. I was so scared; Luka was really sick. Immediately everyone went into crisis mode: the doctors and nurses started arranging all the details with AMREF to medically evacuate Luka to Kenya. I was so thankful for all their help and that I didn’t have to do anything. They said we would be going in the ambulance to the airport within two hours.
I just cried. My whole body felt weak and I was sick to my stomach. Was this happening? I called home and told our family – weeping. They immediately helped too. They started people praying, called International Teams, called our insurance… We were in agony about leaving Lydia and Grace in Uganda as we went to another country but there was no other choice. Bobby and Rachel, our teammates, had only been in Uganda five weeks and now they would have to take care of our girls. Thankfully other missionary friends were there to help them. We also only had Luka and my passport. Josh only had a paper copy. We weren’t sure he could go and I didn’t know if I could do this alone. Thankfully they said it would do under the circumstances. Our next obstacle was getting the $8,000 needed for the company to medically evacuate us. Wow, $8,000 for a 50 minute private plane ride. At a time like this you are willing to hand over all your money to save your child’s life. Money really doesn’t mean much compared to life. A great missionary friend helped us get the money. We were ready as soon as we had word that the plan had taken off from Kenya.
It was a hard wait knowing time was critical for Luka. I began to worry about everything – he was so white, moaned a lot, was lifeless, uncomfortable, was even beginning to swell. At one point in our wait I just needed to be alone to cry. I went into the bathroom sat on the toilet and wept. I literally raised my hands trembling and told God that I was so scared to trust Him but I submitted to Him. It was a moment I will never forget.
About 7:30pm we were on our way. It was our first ride in an ambulance, which is quite interesting in Uganda. We got VIP service at the airports and did not have to do anything. I take that back, poor Josh had to deal with immigration without his passport. I asked how he got through and he said he broke down. We were driven by ambulance to the tarmac, right up next to the plane. The AMREF doctor and nurse greeted us, got the report from the nurse that came with us from Kampala, and assessed Luka. We were very impressed with how professional the doctor, nurse, and the whole operation was. The plane, originally a 12 seater, was really nice too. There were 6 seats, a stretcher, and other equipment. We were so tired that we all slept the whole flight. Luka was put on oxygen because of the anemia (his blood count was so low he would not be allowed to fly without medical assistance.) It was quite something to think we were flying – not only flying, but medically evacuated on an air ambulance. When we arrived in Kenya we learned that our insurance had agreed to pay for the flight. Funny thing is, I was just saying how having medical insurance and living in Africa isn’t really worth all the money because care is cheap and we would never need the medical evacuation – boy was I wrong.
We arrived in Nairobi 50 minutes later and were met on the tarmac by another ambulance. We felt kind of important in a weird kind of way. I was thoroughly impressed with everything. Josh had readl problems this time with his photocopy of his passport (can’t blame them nowadays, they have to be strict. I am shocked it worked at all.) We ended up having to leave Luka’s and my passport with immigration to ensure that we would bring Josh’s sometime – meaning that somehow we would have to get Josh’s passport from Soroti.
We arrived at Gertrude’s Children’s Hospital around midnight on Wednesday. We walked into ER only to be greeted by the team of doctors who would be caring for Luka – impressive. They looked at the reports, evaluated Luka, talked with us, then discussed options with each other. They explained the plan of action to us. Finally, Luka was going to get the treatment he needed; that felt good, but seeing him get the IV line in and go for surgery did not.
They led us to ICU. It is a scary thing to know your baby is in ICU. I thought often about how over a year ago my grandmother was in ICU and her kidneys didn’t work and she was swelling. Her blood pressure was also high. Although I realize she had something different, she almost died. I wasn’t ready to admit that Luka was in critical condition. I am so thankful the doctors and nurses realize that Luka has been through trauma and are sedating him and taking any pain away. Luka is so scared of anyone other that Josh and I. He presumes he will be hurt again. He is a bit ornery too, but who can blame him for that?
A specialist in getting IVs in kids came to do Luka’s IV. I went out to call home while Josh stayed with Luka as she finally was successful in getting in an IV. They got it in the artery in his inner thigh. IT was a bit bloody, but Josh assured me it was because they got a good vein. Luka didn’t cry too much either because of the mild sedation – yeah. They took a blood sample right away which showed the kidneys had failed (high toxin levels in the body) and anemia (low hemoglobin). His levels were bad. His hemoglobin was 7; it should be 11-14. His creatinine was 428 (should be about 50) and his urea was 32 (should be 5-6). This is one sick kid.
We were all exhausted by now. I was almost sick to my stomach from shock, stress, lack of sleep, lack of supper. Josh went to lay down for a while. I stayed with Luka because I would soon be giving blood for his blood transfusion. The nurse told me it was time to take Luka to the theater (surgery). I carried him there. I think the worst moment yet was when I had to hand Luka over to the surgeon. I could hear Luka cry as they walked away. My baby. He was going through so much. It was like a nightmare from which we couldn’t wake up. Our lives changed so quickly. It was the longest, loneliest, darkest walk back I have ever taken. I felt so alone. I cried out to God. It was all I could do.
Then I went to the lab to give blood. I have never given blood before but I was a match for Luka’s blood transfusion. At first I was nervous because it can make me really queezy, but for my son I would do anything. At this point I was just tired and numb. Thankfully, it went really well and I even took a nap on the bed afterward. The surgeon came out later and said everything went well and Luka was back in his room. It sure is disturbing to see a tube coming out of your son’s abdomen (not to mention the 9 other tubes and wires attached to his small body), but now he was getting the treatment he needed and he was finally sleeping. This gave me more peace so I also went to sleep. It was the longest night of our lives, but the shortest in terms of sleep. Somehow we managed to press on because of the crisis. Luka needs us and I needed to be with him. The doctors came to check Luka and to explain what the blood work told them. They now know for sure it is HUS which means the kidneys have failed (acute kidney failure – functioning at only 7%). That is the reason he is on dialysis – the machine does the work of the kidneys so they can rest. (Fluid is pumped into the abdomen, sits for 45 minutes while it absorbs toxins, then is drained taking the toxins out with it.) The doctors told us he would be on dialysis for at least 1-2 weeks and that the whole recovery process would take 6-8 weeks. Wow! He said it would take a lot of patience on our part. Thankfully, most patients recover fully.
We, of course, are new at all this and have many questions and concerns. Is Luka OK? What about our girls? Is there a possibility of going to the USA? So many unknowns. We are learning that there aren’t always answers. Only time will tell. The doctors assured us they will get us out of here if there is something they can’t do. They also are very willing to work with Luka doctors in Michigan.
(Thursday, March 11) It was a hard day. Luka was really uncomfortable. Was he in pain? It made Josh very emotional. We touch him and sing to him a lot. We can’t really hold him because of all his cords. I broke down singing, “these are holy hands. He has given us holy hands. He works through these hands and so these hands are holy” as the nurse worked on Luka. God was here working through so many people. I read Psalm 91 as I prayed over Luka.
(Friday, March 12) The days begin to all run together. Every moment is for Luka right now. The care here has been great. We love the doctors and nurses. They are caring; they take time to explain things to us; they are very capable. Even though there are four beds here in ICU, we have had it all to ourselves so it has been nice and quiet. Luka has gotten all the attention and care of the staff. We are already learning a lot about the medical world – specifically dialysis.
Here are some of the interesting things about being hospitalized in Africa: we see monkeys on trees out the window; ox tail was on the lunch menu; there are gecko lizards on the walls in ICU.
We are so touched, overwhelmed, and blessed by the number of people praying for Luka. The family of God is amazing. Everyone has pulled together and done what is needed so we can concentrate on Luka. Our major concern has been our girls but God has answered that prayer too. Bobby and Rachel have only been with us a month in Uganda, but they moved into our house and are taking care of the girls. Other missionary friends, especially the Dwires, have done so much to help them and care for our girls. We love them all so much. I am so thankful they are in good hands and doing so well.
We do not know the true extent of people praying for Luka or how it got around so fast. We do know there have been prayer services, people we didn’t know praying, prayers all around the world, and it was even on the radio. Almost every continent is praying. Everyone wants to help. We are so very blessed. One person told me that in the family of God Luka is a son to all of us. I am so grateful, but it does make me think of all the children and families around the world who are sick without good health care and have no one praying for them. Luka would have died if we did not have the means to get to a good doctor and hospital. I am now more aware of what people go through and how much they need care and prayers.
It seemed God gave the verse from Zephaniah that says God is mighty to save. Several people claimed this for Luka. Luka’s doctor in Michigan also woke up the morning he was flown to Kenya, not knowing what was happening, with the song “Our God is Mighty to Save” on her heart. I held onto that message from God very tightly.
(A few days later) Everyday is full of small ups and often big downs. It is literally an emotional roller coaster. I have peace one moment seeing Luka sleeping well and getting the treatment he needs. The next moment we have some kind of scare and I am so worried I am sick to my stomach. It got really bad Friday night when Luka had to go back into surgery. His dialysis hasn’t been working well for a couple of days and they even put him on manual dialysis yesterday. By Friday night there was fluid going in, but none draining out. They called in the nephrologist (kidney doctor) who came in at 11:00 pm. He tried everything but it looked like the tube was blocked so he called in the surgeon. I was so upset by it all. I did not want Luka to have to go through another surgery. I was so scared. I asked the doctor if it was OK to do surgery despite Luka’s fever (because of an infection in his body). He said Luka simply had to have the surgery. I wasn’t comforted at all. I just wanted to cry. I felt like we were right back to where we had been that awful first night. I called home in tears asking for prayers. This time Josh carried Luka to the operating room. I walked behind them, crying. I was so fearful. We kissed him, prayed for him, and handed him over. The nurse hugged me on the walk back assuring me it would be OK.
Josh and I went to our room. I really felt I had to again submit to God and His will. It was so hard because I did not know what God’s will was for Luka. I had to trust Him if it meant healing or death for Luka. I was trembling before God. I was, for the first time I think, literally kneeling before God and crying out in prayer. Josh was right there with me. He said he really felt God clearly speak to him like Jesus said about Lazarus, “This sickness will not end in death” and he had overwhelming peace. I clung to that with all my heart.
Surgery took longer than expected so I got even more nervous. I was so thankful when the nurse came to tell us we could get Luka. The problem with the dialysis had been a blood clot next to the tube. Fluid entering his body pushed the clot away, but when it was time to drain it would suck the clot against the tube thus preventing fluid from exiting the body. Praise God! He took care of Luka and the scare was over.
The next morning we had another scare when the dialysis did not drain again. I almost panicked but the nurse flushed out Luka’s line with warm water and it began working again. (The warm water can dissolve small clots.) They decided to put him back on the dialysis machine because it warms the solution. They also put an anti-blood clotting medicine in the solution.
Luka gets really agitated and irritated sometimes – I think it is when he is in pain. He itches and itches his little face. I think it is how he lets our his aggression.
The doctor let us read about HUS online one day – bad idea. I read the percentage of those with life-long problems and those who die. Luka was still in critical condition. I could not even voice it but I was so afraid Luka was going to die.
We had so many wonderful people here come to visit us. The team leader of IT Nairobi came everyday to see us and helped us with many needs. Friends in Kampala have missionary friends here who came and visited and brought us treats. A friend from the church I grew up in drove around 4 hours with his wife trying to find us. Later they returned and brought us 3 dozen roses. Another missionary here works in pastoral / missionary care and has been what I call our angel. A Kenyan missionary family working with our partner agency visited us twice and brought us a big bag of fresh fruit.
We are enjoying getting to know Luka’s nurses. We are with them all day. They are very nice and fun to interact with. We bought some of them ice cream the other day to thank them. They laughed at us but did enjoy the ice cream. There is always two nurses on for the day shift, then two others for the night shift.
(A few days later) It is amazing how fast the days go just caring for Luka. We are up at 6:00 a.m. when Luka gets his bath, has blood drawn, and gets his bedding changed. Then we get ready for the day, do devotions, and eat breakfast. The doctors come sometime in the middle of the morning. Lunch is around 1:30 then we usually make phone calls to update people. When the nurses allow us we try to send out a couple of emails. We read to Luka and interact with him. Doctors come again in the afternoon, often followed by more phone calls. Supper is delivered between 7 and 7:30. We close the day by talking over plans and details. We pray over Luka then head to bed around 11:00 p.m.
It has be quite something to sort out all the details and make plans. We decided to have my mom fly with Tim and Angie to Uganda to be with our girls. The girls are doing great and we are so thankful for Bobby and Rachel and the Dwires who have been taking care of them. One night Grace would not talk to Josh or me. It was really upsetting to Josh so we are glad Grandma is on her way.
Sunday Luka’s hemoglobin level was down to 6.9 so they decided to do another blood transfusion. I could not give blood again that soon and Josh has the wrong blood type. It was amazing to see God provide. Eight missionaries visited us that day and 6 of them were Luka’s blood type. We had more than enough blood for Luka.
I seems like everyday brought a new concern, setback, bump in the road, stress or worry. In the morning you’d be doing fine and thinking everything was going well. By afternoon you’d be worried about some new development such as an infection or fever. Luka’s oxygen levels began to drop, but the doctors were quite confused because he was not cold or turning blue like he should have been considering his oxygen levels were down in the 70s. The doctors did an EKG, and ECG, and an x-ray of his lungs. The heart tests were fine, they just showed the heart rate was high and the left ventricle swollen, probably because of his anemia. The x-ray showed white on the lungs which meant acute lung injury. The HUS had attacked his lungs. Oh God! We just needed some encouragement and hope.
Luka was so sad. There was no emotion or expression. He used to cry and fight when the nurses came close. Now he just laid there and let anyone do anything. We were no longer a comfort to him either. He didn’t even want our touch anymore. On top of his own trauma, other babies and kids were in and out of ICU. Crying and beeping filled the room. I was getting really concerned about Luka. He was so weak too. Would he ever be the same.
I had so many emotions through this whole ordeal – I guess we have all gone through trauma. The unbelievable has happened and left me in shock. Everything happened so quickly; we left Soroti and Uganda so unprepared. I need to process. After so many days here in ICU it gives me a weird sense of comfort and security. I almost am afraid to change. Yes, I want Luka healed but when this is all done, how can I just go on? Does that make sense? We have gone through so much. To just go home and resume normal life overwhelms me.
Josh and I were just settling into the fact that we would probably be here a while when Luka’s doctors from Michigan called and wanted to see him evacuated to Michigan. I think they were quite concerned which frightened me. The doctor worked out all the details and was willing to personally come to Uganda to fly with Luka. Luka would have to be sedated and have a breathing tube put into his windpipe. Oh my poor baby. I really wanted to see Luka stable before we flew so he didn’t have to go through all that, but we decided to trust our doctors to do what was best for Luka. We couldn’t make big decision right now. The doctors here in Kenya said Luka was not well enough to fly so we would be staying in Kenya. Our insurance company also refused to pay the $100,000 it would have cost to take an air ambulance to Michigan so that made our decision easy.
Monday, one week after we took Luka from Soroti to Kampala, Ryan and Rebeka (Josh’s sister) arrived. It is quite a story how God clearly provided the way for them to come. We sat and talked the night they arrived. I told them how badly I just wanted to be out of the danger zone. I didn’t want to have to worry, not knowing if Luka would make it. I just wanted him stable and out of critical condition. Ryan and Rebeka stayed with a missionary here. He blessed all of us so much – his home, rides, fish and steak dinners, pastoral care. Rebeka and I went to Javas for lunch together with him. It was nice to get away and good food too.
Tuesday Luka’s IV began to leak so they fixed it. After fixing it his leg began to swell. They removed the IV and took him to surgery on Wednesday morning to put in a new one. They did it in surgery so they could put him to sleep. The IV is a central line, in the main artery in front of his right thigh (it was either there or his neck). Thankfully they got it into his thigh. The IV is stitched right into his leg with 5 stitches. The surgeon and anistisiologist are so nice. They even come to ICU to visit Luka and see how he is. (They are married to each other – they met in ICU).
It seemed after I voice my heart’s desire to Ryan and Rebeka about wanting Luka out of the danger zone, things began to improve. Ryan likes to say that once he got here Luka got better. It was so encouraging to finally see the toxin levels start to drop and to no longer have set backs but improvement. The best part of all was to see the way God was answering so many prayers. It was amazing to see. We would put an update on the blog with a prayer request. By the next day we’d see an answer to that specific request. I can’t describe to you how it feels to know people are praying all over the world for Luka and to see God at work as He healed Luka. We had just needed some home – now Luka was improving. His oxygen levels had been so low; now they came up. Luka’s IV went bad and his leg swelled; now he had a new IV and his leg was fine. Luka had no emotion and didn’t seem to care any more (possible depressed); now he is smiling and doing well. God’s people cried out to Him on behalf of our son and God answered. This is how the body of Christ is supposed to work. Our God is mighty to save.
Through al of this Josh and I really wanted to bring Him glory and be a witness. I also have a real burden for Luka’s doctors here. They are so nice, yet they do not know Jesus. His one doctor’s mother died so we let him know we were praying for him and gave him a card. The other doctor was so surprised by Luka’s oxygen levels coming up so quickly by themselves that he asked Josh how to explain the improvement. Josh said we had a lot of people praying. The doctor asked if we have powerful prayers. Josh said no, we have a powerful God. Amen to that.
(Later) Luka seemed to improve a little everyday. Josh took him for his first walk outside while the nurses cleaned his dialysis machine between cycles. Luka loved reading books and playing ball – actually throwing them out of his crib in ICU and watching us get them, little stinker. It brought me so much joy. Slowly but surely we even got smiles out of him.
The ICU had four beds in it and the first few day Luka had it all to himself. Later it seemed kids were in and out every day. It was a bit traumatic with all the crying and beeping at times. We saw quite a bit. My heart broke each time a new child/baby came in. I often went and talked to the parents and prayed with them. One baby was 13 days old and on full life support. A week later he died. We were able to help the parents and get to know them. I hope we could be a blessing them.
(A few days later) The next thing we knew (9 days after arriving in Nairobi) Luka was out of ICU. In actuality they needed Luka’s bed for a sicker patient who was coming in, but Luka was well enough to be in another ward. He was no longer in critical condition! God is mighty to save.
And that pretty much brings you up to date. It is now Monday, March 22 – two weeks into this traumatic experience. I wish I could put this into writing – all the details and emotions, but that is impossible. I will just have to accept the story I can tell. It has been a blessing to hold Luka again and walk around with him; although, that at this time walking around the hospital grounds is the only thing he likes to do. We feel we have our little boy back. Luka is Luka again. He smiles, “talks”, plays, laughs, and even walked yesterday while holding our hands. Amazing what can happen in a week. I of course am still processing it all, but if everything continues to go well we will be able to leave by the end of the week. Luka is off dialysis and they are watching to see how his kidneys function.

(Luka was discharged from the hospital on Monday, March 29. On March 30 we flew to Michigan for his follow-up care.)

This as far as the journal went. I guess I got too tired to finish. But praise God it is a happy ending!