Lawson is out, surgeon is happy with how it went.
The procedure started a bit later and went a bit longer than originally planned, but the doctor is happy with how it went. No shunt! He is awake and talking (remembering where they were in a story Jen started reading before the surgery). We are so very thankful! We have been so encouraged by all of you and the countless messages we have received. Please keep praying for a quick and healthy recovery. Thanks for all your prayers and messages of encouragement! We’ll write more later.
The subject line of this email is not one any parent ever wants to write. But, our wants don’t dictate reality. Lawson is scheduled to be admitted to the hospital tomorrow (Friday), and have a surgical procedure called endoscopic third ventriculostomy combined with choroid plexus cauterization (ETV/CPC) Saturday morning. It seems Lawson has developed obstructive hydrocephalus–the fluid in his brain is not able to drain properly which then starts to put a lot of pressure on his brain.
Would you pray, with us, that the procedure goes well and completely fixes for good this cerebrospinal fluid drainage issue in Lawson’s brain?
Some backstory details
This is a bit long, but if you want more of the back story, here’s some info…
Last Friday, Lawson started having debilitating headaches. He fell asleep on Jen’s lap, and when she got up, found he had peed his pants (not normal). She put him in his bed, and a few hours later I tried to wake him. He had peed his pants again. He was in deep sleep, and did not want to wake up at all, complaining and screaming of a really bad headache. We put him back to bed, and after a bit he threw up (also not normal). In all this, he never had a fever or any other symptoms typical of an infection. We had never seen anything like this with him.
Uganda has been in a pretty strict lock-down for the last 5 weeks, which includes no driving of private cars. We decided to let him sleep, which he did all through the night. He woke up the next morning around his normal time, and seemed to be himself. We wondered if he had had a migraine. However, after not much time, he was back in deep sleep. We reached out to some pediatric doctors and they all said it would be good to get him to a hospital, so we started the process of getting permission from the authorities to drive.
By the time we saw a pediatrician, Lawson seemed to be mostly back to his normal self. The doctor checked him out, had some blood work done (all came back normal), and suggested we get an MRI done. I took Lawson to the MRI room to explain it to him, and how he would have to remain very still. Luckily, he fell asleep while we were waiting our turn, and so I put him in while he was asleep. They had warned us about the loud noise of the machine, but I was really surprised by how loud it was!!! Somewhere in the process Lawson woke up, but didn’t freak out, and did an amazing job staying still (which is not like him).
I met briefly again with the pediatrician before heading home. This time, Lawson was completely asleep again. The pediatrician wanted to wait on for the official report, but in in taking a quick look at the MRI slides, noted areas showing Lawson’s cerebrospinal fluid looked larger than normal.
Since about Sunday, Lawson has been much more himself. I don’t know if we have ever felt so good about seeing him doing all the things we normal chastised him for!
However, right after getting the MRI scans, we decided to send them out to some other medical contacts to get their take. Two American neurosurgeons–one at Gillette Hospital in MN, and another Mayo-trained neurosurgeon working at a missions hospital in Kenya (Tenwek), along with some pediatricians and tropical disease doctor, were very helpful in looking at the images and engaging with us on the symptoms. Both of these neurosurgeons expressed immediate concern that there could be a blockage of the cerebrospinal fluid.
They both (even the US based neurosurgeon) recommended a CURE hospital, here in Uganda, about 5hrs away. We came to find out it is a world-leader in hydrocephalus treatment and has been instrumental in advancing the surgical procedures associated with treatment. Since this CURE hospital had wanted EMI to help with some of their building planning, I had been in contact with their executive director several years ago. I still had his contact info, and through him got the contact of the neurosurgeon, Dr. Peter Ssenyonga, who used to be their chief medical officer, but had recently moved to Kampala (where we are). The Mayo-trained neurosurgeon told us later, that he had actually been to the CURE hospital to learn this specific surgical procedure from Dr. Peter. Independent of all this, the pediatrician we had initially seen had arranged for us to see a neurosurgeon, and when I asked the name, it was the same Dr. Peter Ssenyonga.
Dr. Peter Ssenyonga and the ETV/CPC Procedure
Lawson and I met with Dr. Ssenyonga on Monday. He was very patient, walked me through the MRI images, and said that with the underling condition, he recommended the surgical procedure to fix the problem. As mentioned above, the other neurosurgeons and some of the other pediatric doctors we talked to, all independently came to the same conclusion of diagnosis and recommend treatment. Even though Lawson clinical condition had improved, they say that pressure could build quickly and unannounced, and could lead to the same or worse symptoms. According to them, it is not something he can grow out of.
We have come to find out that not only is Dr. Peter Ssenyonga a gifted neurosurgeon, but he may have more of these specific surgeries under his belt than anyone else in the world!! When he worked at CURE, he averaged around 500 of these specific surgeries a year, and has been doing them for the last 15 or so years.
In the video clip below, Dr. Peter is the surgeon trained by Dr. Ben Warf. Dr. Peter worked with Dr. Warf to pioneer the ETV/CPC procedure. Now, doctors from around the world, including the US and Europe, come to CURE Uganda to learn this new procedure.
This procedure allows for fluid to drain without a shunt. While a shunt is the next best option, it sounds like it requires multiple surgeries as children grow, and as it is a piece of hardware, it is prone to breaking or causing infection. We are really praying that the ETV/CPC procedure works for Lawson, and no shunt is needed.
(click image above to see video)
Here is another article about the CURE Neurosurgery program: treasure-in-uganda
In the video clip below, neurosurgeon Dr. Ben Warf (who trained and worked alongside Dr. Peter in Uganda) explains the situation Lawson is facing. Dr. Warf, due to some family health issues, has moved back to the US. He is a professor at Harvard, and works at Boston Childrens Hospital.
(click image above to see video)
Some of our reaction to all of this
As you can imagine, our reactions have been all over the board…from surprised, feeling like this is all surreal, to very sad, and scared…to feeling hopeful…sometimes seemingly conflicting feelings come all at once. At the same time, we’re amazed at what we can only attributed to God’s hand at work–that while we are stuck in a severe lock-down, and out of the 7.5 billion people on the planet, we are talking to one of, if not the best doctor there is in the world on this specific procedure.
We aren’t going to presume to know what God is doing and what His plan is. But, we are encouraged by multiple independent sources all directing us to Dr. Ssenyonga. We know all of the above doesn’t guarantee what we want as the outcome for Lawson, but we do see it as God’s graciousness to us in these days of hearing the diagnosis and recommended treatment. As is always the case (but boy do we feel it now) we realize our hope and trust has to be in the character of our Heavenly Father. We want to hope in a certain outcome, but that is not what is promised to us. What is promised to us, is that He loves us more than we can imagine, and is doing what He knows is ultimately best, whether we understand it or not (just like my kids can “know” for sure that what they are asking for is the “best”, yet I make the decision seeing a much bigger perspective then they are able to see or know at their age–sometimes I say yes and sometimes I say no, based on what I think/know is best for them. They can’t always understand my decisions, but I hope they can trust in my character and trust that I love them and care for them). I have thought often about the father who comes to Jesus for healing of his son in Mark 9. Jesus essentially asks if the father if he believes He can heal his son, to which the father cries out, “I believe; help my unbelief!” I feel that way often.
Again, we request your prayers for Dr. Peter, the anesthesiologist and rest of the team, and that the ETV procedure would work, being a lifetime fix for Lawson.
Thank you so much!
Update on the Ugandan Families
Thanks to so many of you who gave to our church to help Ugandan families during these tough times. I was really amazed at your generosity, as I’m sure many of you are experiencing difficulties personally or much closer to home.
Shortly after I sent that email, the government here really cracked down hard on the lock-down measures. Where they had previously restricted the number of people riding in a vehicle, they (with about 1/2hr notice) banned all public and private cars from driving. Most businesses were pretty much shut down. Along with banning groups of people gathering, they also banned distribution of food with the penalty being ‘attempted murder’.
The reason given for this, they said, was that some politicians were giving out food and trying to buy popularity. They also said they didn’t want large gatherings of people coming to a food distribution, as this could be a dangerous way for the virus to spread.
Even though our church isn’t trying to buy votes, it has put them in a tough spot. They had bought food and desire to get it out, but also want to adhere and respect the laws. I asked the leadership a few weeks ago how it was going, and here is the pastor’s response;
We are very grateful for the resources…to mobilize for the Food packages… Before the lock down, we were able to buy majority of the food stuffs that we planned to distribute, so we had enough to put together food packages for the families we were targeting. At the moment, we have been able to distribute food to at least 25 families, majority of which are families with children with special needs whose parents are no longer able to do the little jobs that gave them some money for their daily well being. We have not been able to distribute food as originally planned due to the various restrictions the government has put in place to curb the spread of Covid-19. We are taking the necessary precautions not be caught on the wrong side of the law, although that means we will move slower, but our resolve to serve these vulnerable families is still strong as when we started this campaign.
So, you can keep praying for the many people here who are struggling through this crisis. The initial 2 weeks of lock-down were extended for another 3 weeks, and just the other day, most measures have been extended for an additional 2 weeks.
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