Last Wednesday

Wednesday, October 16

Happy Birthday to the best mother-in-law in the world (Sandra Plunkett)!!!!  You are loved and celebrated here and I can’t wait to celebrate you at home!  I love you!!!

Today, I am simply wiped out.  I got calls late into the night about Wisdom and left his bedside around 11 but didn’t sleep well the rest of the night.  I was almost glad to see the sun come up just knowing that the tossing and turning could come to an end.

This morning was my last chapel service.  I will really miss this part of the routine.  The singing makes me tearful every single week just highlighting the unity we have in Christ even though everything else about our lives can be so different.  The differences were really highlighted in the sermon. The chaplain spoke using verses out of 2 Samuel about David seeking God in fighting battles. He discussed that in our struggles we should ask God what to do, how to do it, and praise Him for the victories.  My own mind conjured up examples in my life, how that looks practically. Then the pastor started giving examples of things not to do. Wow! Ex: Don’t think I am tired of this man I have married and find ways to get rid of him, like paying someone to kill him. Don’t get angry at a neighbor and burn his house.  Don’t get mad at a woman and see the witch doctor to put a curse on her. Don’t throw rocks at and kill the one who stole your torch (flashlight). Ummm-a little different from the “battles” I was picturing. Such different cultures. He gave this sermon in English and I sat a little bug eyed, but then he gave it in Chichewa and the crowd was totally responsive, laughing, cheering, nodding in agreement.  The pastor knows his flock!

I headed to the pedi ward to check on Wisdom and Immanuel before the clinic started.  Wisdom had one more seizure in the night and the nurse had given the medication as I had directed.  He was doing okay on the CPAP this morning but seemed maybe a little worse. Immanuel is finally better and has now stopped having diarrhea and is no longer febrile.  It was nice to be able to text Nicole some good news.

I went down to Peds clinic and Dr. Catherine was there.  She had to drive several hours for a medical meeting this afternoon so we were hurrying to finish early.  We had a lighter crowd this week. The last two have been very busy and Nicole is out of town today so the group she helps was in smaller volume.  Several regular patients were there and doing well. The baby with the mom with eroded nipples returned and had gained great weight. The poor mom is having to express the milk then give in a bottle every feed.  I did remember to bring her pacifiers to help soothe the baby between feeds. We will have to follow her closely as I worry that the milk ducts will be plugged as the nipples heal and scar over. I do enjoy this clinic with all the precious little faces and I love being able to speak encouragement to moms that are doing their best just to help these littles survive.  

One especially sweet moment occurred between two moms.  I saw a set of twins that have struggled with malnutrition.  One has cerebral palsy and mom has noted that the other one has something strange in its mouth.  I looked and saw that it has a posterior cleft palate (not a cleft lip but just the palate). We talked to her about going to the palate clinic at KCH and she was notably nervous.  Two patients later, we saw the baby that had the palate repair and then was admitted for stridor secondary to swelling after the surgery. The nurse called after the first mom and had her come back.  The two moms talked and then the second mother pried open her babies mouth and using my phone flashlight showed the mom how things looked after repair. It was beautiful! Moms commiserating, sharing fears, and reassuring each other.

We finished up clinic and got Dr. Catherine out on time (so rare!).  Marleen and I went back to the ward. Wisdom was running a fever and the seizures had restarted.  Mainly just his left hand and arm jerking. We quickly reviewed his medication and started working through the seizure protocol.  We moved from doses of diazepam, to doses of phenobarbital, back to diazepam. Each time we wait expectantly for the brain and muscles to calm.  Ten minutes we count on the clock and then then next dose. 

On the second dose, we also adjusted the CPAP to provide more support as the seizures interrupt respiratory effort.  I also had the senior nurse discuss the seriousness of the baby’s condition with the mom. She stared off as her world crumbled.  

The minutes ticked by and the shaking continued.  The next dose wasgiven and finally the arm was still.  Oxygen levels were stable, blood sugar was fine. We breathed a sigh of relief.  I waited and watched through lunch. Then the dreaded movement returned. Another dose is given.  Now two of our medications have been used to the maximum dose. Another brief pause but then the seizures return.  Another medication is initiated. As we increase the medication, the side effects mount. We discuss the prognosis as a team.  I called Dr. Catherine to talk it through and ensure I was making the right decision. When we first resuscitated Wisdom, we were resuscitating a healthy baby with normal brain function and healthy lungs.  That was not our patient now. Given the recurring seizures, despite the medications, and the long duration of the seizures, significant brain injury has occurred. In addition, he now has an aspiration pneumonia and poor respiratory effort on maximum support.  We decided it would not be in the patient’s best interest to resuscitate him if his heart or breathing should stop. We again had the senior nurse discuss this with both the mom and dad. I did not want them to feel like we were not intervening if this should happen as they saw us do two days ago.  Again, devastation seen in their expressions.

Wisdom had a longer pause in the seizures, they returned but just for a few minutes.  We waited. Then the jerking in the hand then the arm. The breathing dysregulated. The second dose of paraldehyde was given.  Now three medications were maxed out. The last medication, no one has experience with here. It has tremendous side effects and a black box warning.  So scary. We don’t want to do harm, but as the seizures continue damage is done. This one also requires diluting, using a syringe in a pump to deliver the dose over a long time.  The plan was formulated, the medication and pump procured.

It was late in the evening when we left.  Wisdom is still. The parents came and talked about wanting a transfer to another hospital.  The clinical officer explained that the treatment would be the same and that he would not survive the transport off the CPAP.  We left with heavy hearts. We have a detailed plan for if the seizures return and last longer than 5 minutes. The last medication will be given over a long period of time to be safe.  We are unable to monitor. Then we will not have further medications to give until tomorrow. We will pray the seizures will stay at bay. It sounds harsh and cold to give the instructions that no one needs to be called in.  There is nothing that can be done.

Dinner was definitely the highlight of the day, but admittedly the bar was low.  Elisa came and cooked chicken, mashed potatoes, and vegetables. I asked to take his picture and he seemed very excited and very posed.  His cooking has really been the only source of solid nutrition for me and God has seemed to design it to be on the days I needed it most.  The girls also had some treats-prizes for winning the alphabet game that their mom uses to help them learn letters. They had begged for the watermelon yesterday so we stopped roadside to pick one up.  Brandina also had her first visit from the tooth fairy last night. She was so excited and will have some money to spend in the market-juice, chips (French fries), and mandazi (fried donut) are on her list.  So fun!

I sat down to type this and got a call from the night nurse-confusion about our plan and Wisdom was seizing.  I threw the coat on again and headed over in the VERY dark because the power is out again. We went through the whole plan and the got the syringe predrawn.  Wisdom had stopped seizing so we didn’t give the final dose yet. The staff was appreciative of my visit and I feel confident that they know the plan for medication and for end of life care.  Now we will fully place Wisdom in God’s hands.