If you have a spare moment, would you consider a prayer for Paul? The area surrounding his spinal catheter has filled with fluid, again. He’s undergoing surgery right now to test a new pressure valve, which sits near his rib cage to regulate the flow of spinal fluid.
Paul’s doctor just came into the pre-op room and prayed with him and my husband. He asked Jesus to heal Paul and to bless the endeavors of his surgical team. What a blessing–to have such a doctor. May the Holy Angels guide the hands of Dr. Ahn and the entire medical staff.
Paul is praying for his twin brother and his older sister, as they will begin school tomorrow without him. His twin brother is taking it especially hard to be in a new school without him, but if all goes well, Paul will join him on Monday.
I hope to offer an update later tonight or tomorrow.
Some of you may have heard that we were in the hospital again for Paul? Alas, yes.
A few months ago we noticed his back, where his catheter enters his spine, was terribly swollen. We knew something was up then, and that it would only be a matter of time before his spinal shunt slipped out and failed, which is exactly what happened.
Last Friday Paul began having migraines–the kind where one can’t move from the couch. The kind where one trembles in pain. The kind where one eventually vomits, and in Paul’s case, will not cease vomiting–if not anything worse–until surgery. When this happens, we call the ER in Rochester, pack for an extended stay, and get on the road–all of which we did.
Now, unfortunately, we’ve got this Down to a Science. When Paul starts vomiting, I go for the medical binder, containing all the important phone numbers, and as I said, call the ER. But it is best if I not only warn the ER that we’re coming, but also insist on speaking to Paul’s neurosurgeon’s Resident Doctor, who will in turn beginning looking over Paul’s thick file and speak directly to his neurosurgeon and get a plan going. (One is not able to speak directly to Paul’s neurosurgeon, regrettably! Apparently they’re very busy, which is why they all have at least one attending resident doctor.)
Once this is finished, and while my husband is caring for Paul, I glance at my trusty Packing List, which I keep taped to the front of Paul’s binder, and begin throwing things together that one might not normally think of. For example, we’ve relied heavily upon a few unusual items like a Traveling Lego Box, which contains Legos that are used exclusively at the hospital, not at home, and are especially detailed and take forever to put together, in an attempt to pass time away once surgery is finished. We also cherish the joys of Perplexis Balls and Monopoly Deal. Then, there’s the laptop for audio books, and a few slices of bread for me to toast in the nurse’s station for breakfast, as I never have time to run down to the Cafeteria in the morning because generally we’re prepping for surgery or visiting with doctors and nurses, who are perpetually doing their rounds at outlandish hours.
Anyway, this trip to the ER was no different. As we live so close to Rochester, however, we need not fret so very much–or at least we tell ourselves this–because the drive is literally a tiny fraction of what it was prior to our move to eastern Minnesota. Now, we need not spend hours and hours watching Paul decline on an agonizingly long drive while worrying about truly disturbing things like seizures or bradycardia–both of which have happened in the past and are terribly frightening.
This time, we got into the ER at about 11:30pm, got the vomiting under control at about 12:30am, were wheeled into surgery by 8am, and done 3 hours later.
And Paul is well again. The timing couldn’t be more perfect, too, as he and four of his brothers and sisters are slated to be confirmed this Sunday by none other than His Eminence Raymond Cardinal Burke. (Awesome. Just awesome.)
If you think of it, remember them all in your prayers. And especially pray for Paul’s continued healing. Twelve surgeries is a lot for one boy, in 15 months.
For those of you who are following Paul’s plight, here’s an update.
On Monday we began the long trek back to Rochester for a second surgery, which lasted about 3 hours. His doctor reopened his incisions from 7 years ago and made a thorough examination of his old shunt system, beginning with the shunt itself, down to the valve behind his ear, and finally snaking all the way down his neck into his stomach cavity.
The doctor was hoping that he’d discover that it was malfunctioning, which would be an easy explanation for the incredibly high levels of pressure in Paul’s brain during his migraines. But he did not. The old shunt was functioning. Nevertheless, he replaced it with all newer equipment, in hopes that even though the old equipment was functioning, perhaps it wasn’t functioning optimally.
And how was Paul during this four day trial? Physically he was as well as could be expected, but emotionally and psychologically, he was down. Very down. As a mother, this was the hardest thing to watch. He didn’t want to be in a hospital anymore. He didn’t want to have wires and tubes sticking out of him. He didn’t want to wear a hospital gown. But he didn’t cry about it; he just looked terribly sad.
So we prayed through it. This time he chose to offer his sufferings for our family. We prayed rosaries. We prayed morning and night prayer. But really, I think he was just exhausted, as we all were.
Finally the day after his surgery in the afternoon, he picked up a little, as the beautiful water fountain out of his window was turned on that day, and he could watch it from his window.
My mom and I also walked him down the hall to a pottery class for the children on his floor. He didn’t want to walk out there in his hospital gown, dragging an IV cart along, but he did.
We also found other things to distract him with. We watched the Twins play baseball. (Paul’s a big fan of Rosario, and it was neat to see him hit a few home runs.) My mom bought a lego set, which he put together, took apart, put together… We read a few light books, you know, like Frog and Toad.
In the end, it is our hope that this new shunt will somehow alleviate his migraines, and they will disappear. High levels of pressure in one’s brain is a very serious thing. Children with hydrocephalus die or go into a coma with the same levels that Paul was experiencing–levels into the 40s and 50s. But because his levels are cyclic, however, he manages to be ok, and has not had any damage to his brain, yet.
Paul’s doctor has said that if this shunt doesn’t work, then we’ll have to think about another surgery wherein he’ll take apart his cranium and reassemble it with a plastic surgeon to allow for more space, in an attempt to alleviate those pressure levels.
Lastly, a Thank You
Truly, my husband and I are very thankful for the great help of the staff, doctors, and nurses at St. Mary’s Hospital in Rochester. They’ve all been so helpful and kind.
We’re also greatly indebted to our parents who have done so many things for us over these last four weeks–watching children, cooking meals, paying for hotels and gas and food, allowing us to use their reliable car, and indeed accompanying us on these many trips. How could we do it without you? We couldn’t. May God bless you for your generosity and love. We love you all so much.
Lastly, we want to thank everyone who has prayed with us during this difficult trial. As prayers and sacrifices are hidden things, and we may never know about them, we pray that God, who is a great Father, will reward you all abundantly.