By far, and I mean, by far, all posts related to Paul were the most popular of 2019. This touches my heart because in those dark moments, I wasn’t sure if I ought to post anything on him. I am glad I did, however, for our whole family felt the prayers of everyone.
For those who are interested, today I offer a summary of posts from 2019 chronicling Paul’s journey. For me, this was emotionally intense to read through, especially the August 15th entry. That was a desolate moment. In fact, my stomach is queasy right now just thinking of it.
In any case, here is his story, and I apologize for its great length. Indeed you may not have time for it.
February 13, 2019
Today I ask for prayers.
My son’s migraines have been increasing in frequency lately. Instead of suffering a major episode once every 3-4 weeks, he’s now experiencing them every 5-10 days. In case you’re new here, his migraines begin with a headache, but quickly advance to an all-out debilitating migraine. He quits moving; he quits eating. He curls up in a ball on the couch or his bed and trembles in pain. His eyes glass over, and he moans. Hours later, he vomits and vomits. It takes anywhere from 24-48 hours to come out of it.
After visiting with three of his doctors yesterday, we have yet another CT scan scheduled for tomorrow to check his shunt. (When he was 3 years old, we discovered an arachnoid cyst that covered 1/3 of his brain. This shunt continually drains this fluid into his stomach cavity.) I am not very hopeful, however, that anything will be discovered because he just had an MRI this last fall with everything checking out just fine.
In any case, if you have a minute, stop what you’re doing right now and offer a small prayer for him. His patron saint is St. Paul, who was no stranger to suffering himself.
May 9, 2019
I write this morning asking for prayers again. Our son, Paul, is currently in Rochester, MN, being monitored at the hospital in the ICU.
My husband and father-in-law drove down a few days ago for an Intracranial Pressure Monitor to be placed under his skull. This device monitors the pressure in his brain to determine if there’s too much. For example, the doctor explained, when you have a bowel movement, the pressure levels in your brain reach 30, but only briefly. Normally the levels of pressure in your brain do not exceed 20 mmHg.
One cannot sustain high levels of pressure for extended periods of time without eventually doing great damage to the brain. In fact, one of the first things to go are the eyes. Blindness will result from high, extended levels of pressure.
In any case, Paul’s doctors are concerned that his existing shunt, which was placed in 2012 to drain an arachnoid cyst, might be causing problems. The only way to determine if this is the case, is to monitor it.
Immediately upon placing the monitor on his brain, the doctors noticed elevated levels of pressure of around 40. Obviously, this is not good. After a few hours, however, it did go down, when Paul’s migraine went away.
Last night, though, was a rough night. Paul had another migraine and spend the night intermittently vomiting. The pressure levels in his brain reached into the 50s and did not return to normal until around 6am.
Later today, we should know more information, as to what the doctor wants to do. He’s only seen a handful of these cases – children with existing shunts experiencing dreadful migraines. We are praying that the angels will guide the doctors into making the right decisions.
Please, remember Paul and his doctors in your prayers today.
May 10, 2019
For those of you interested in my son, Paul, here is another update.
Last night he finally slept, and as you can see from the photo below, he woke up with a little more pizzazz.
As an aside, the other day, when the nurses wheeled him in for surgery prep, one of the nurses asked him, “Do you know any jokes?”
With a twinkle in his eye, Paul politely answered, “Yes,” and calmly asked, “Have you seen the new movie called Constipation yet?”
“Nope. Never heard of it.”
“Well, that’s because it hasn’t come out yet.”
And that, my dear readers, is my son’s favorite joke.
The Plan, In Short
After two days of monitoring the pressure in his brain, his doctors have determined that his existing shunt is malfunctioning and possibly sucking in bits of his brain. So next Tuesday, Paul will have another surgery to remove the existing shunt and to place a new one in.
One more week of this! Oh, please pray for me too!
And a Thank You
Lastly, we want to thank Fr. Kasel from the archdiocese of Minneapolis and St. Paul for traveling to Rochester to anoint Paul. Truly, we are very grateful. He not only anointed him, but prayed with him, heard his confession, and played cards with him.
May God bless you, Fr. Kasel!
May 17, 2019
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.
August 15, 2019
Well, I am back at it, after taking a 3 week break. During this break I had intended to vacation with my family, attend my brother’s wedding, and enjoy some carefree timelessness.
But nothing has gone as expected.
Rather, two days before we were to leave for South Dakota, my husband and I had to rush our son, Paul, to our local ER. His incision from last May’s surgery had become infected. And before we knew it, he and my husband were driving straight through the night to St. Mary’s Hospital in Rochester.
And thus began 3 weeks of the most excruciating suffering I’ve ever known–watching a child suffer.
Paul Endures Surgery After Surgery
During these last 3 weeks, Paul has undergone surgery after surgery, with almost everything going wrong that could go wrong. His shunt tubing became blocked. His heart rate kept dropping dangerously low. He quit breathing for 10-15 seconds at a time and would struggle for breath, for hours upon hours. Blood leaked into his brain. One shunt malfunctioned. Another shunt slipped out of place. His left ventricle collapsed. He hasn’t eaten for days upon days and is losing weight. He is suffering seizures. And then there’s all the vomiting.
All of these things have been happening in addition to the most excruciating head pain. And we sit helplessly by him and watch and pray. I’ll never forget the terrible day and night I had to watch his heart rate slow, his breathing cease, and then the trembling of his body to grasp a breath. It was terrible.
And it’s still going on. I beg of you, dear Readers, to remember him in your prayers. But remember the other children too. They are suffering in a different way. They wonder, where is Paul? Why can’t Paul just come home? Why can’t the doctors fix him?
We don’t know the answers. We only know that for some mysterious reason God is allowing this suffering, and we can choose to accept it, or we can drive ourselves mad with endless, unanswerable questions and blame God for ruining a perfectly healthy little boy.
But we choose to trust in Him. He who is the beginning and the end of all things. He who created the heavens and the earth. He who loves us so much that He died for us. And His name is Jesus. And all knees on earth and in heaven will bend to Him at the end of time. May His kingship reign forever and ever.
Paul Prayer Intentions
In the midst of his suffering, Paul has been praying. He has been asking Mary to hold him. And he has been praying for Ex-Cardinal McCarrick and for my cousin, Tony. Up until today, Tony had been in psyche ward of a hospital. All within a few years, his brother died in a motorcycle accident, his wife died from cancer, and his father just died last week.
Tony was released this morning. He drove to his father’s house and killed himself.
Please, Jesus, You have a most merciful heart. We pray, that in those briefest of moments before his death, Tony in his agony turned towards You.
August 18, 2019
We cannot thank you enough for your kind words of encouragement and more importantly, for your prayers.
We have good news today.
After 5 surgeries, and ever since late last Thursday, the Feast of the Assumption, Paul has steadily been getting better. His heart rate and breathing are normal. He hasn’t vomited. He hasn’t had any seizures. His head does not hurt very much. He sat up, and he smiled. He ate and is gaining weight. He even went for a little walk around the ICU.
And he lost a tooth.
A good friend of ours drove 8 hours to bring Paul’s two brothers to see him yesterday. This was a great boost to his morale, which had been waning after 3 and a half weeks in the hospital.
If he continues to feel well, the doctors will remove the tubing in his spine, and he may get to come home sometime later this week. We certainly hope this will be the case.
Again, we cannot thank you enough for praying for him and for our family. This has been the most difficult trial we’ve ever experienced.
Nevertheless we feel God’s love, and we thank Him.
September 17, 2019
I am sorry to have such depressing news lately, but it cannot be helped. We need your prayers once again for Paul.
Last week he began having prolonged headaches again, and we knew something was up. On Sunday I drove through the night, back to Rochester. It was an excruciating drive, as he was vomiting, and during intense periods of head pain, his body tightened into a ball, and he slurred his speech, unable to control even his facial muscles.
I prayed that Mary would fly us to the hospital.
Paul prayed for Ex-Cardinal McCarrick, that he might come to his senses, and for my brother, who is suffering from a terrible year of farming.
Well, we made it, and spent a few sleepless hours in the ER. Yesterday Paul had surgery to revise his shunt once again, which, due to the incredibly small space within which the catheter must go, keeps getting blocked.
Tomorrow he’ll undergo a second surgery to place another shunt in his spine, in hopes of alleviating the pressure in his brain.
Today, Paul is feeling much better. I am sorry I don’t have a picture to show it. I am incapable of figuring out how to sync photos from my phone to the laptop. My Web Master* will hopefully attach a photo later this evening, for those of you who might be interested. So be sure to check back.
In any case, we pray that this next surgery will be successful, but if not, we pray for the strength and courage to continue suffering this battle. And if you think of it, would you kindly say a prayer for us too?
* Compliments of the Web Master:
October 3, 2019
Paul is unexpectedly back in the hospital. (For those of you who are new, click HERE for more details and pictures.)
We are choked with grief, as we watch him suffer. He’s been vomiting for two days now, as the doctors are deciding what to do. As it is, they are going to tap his spinal shunt, to see if fluid will come out. If no fluid comes out, then Paul will have another shunt revision surgery. If fluid does come out, then that means the shunt system is “working,” but it’s not helping him. In this case, he’ll have a cranial reconstruction surgery on Monday or Tuesday. This is where they cut and peel back his skin from ear to ear, take apart his skull, and put it back together, allowing for more space. (St. Jude, pray for us.)
In the meantime, his doctors will do everything they can to get him through the weekend. They can go in, open up his cyst, and drain fluid to release pressure, but again, they won’t do the cranial reconstruction surgery until Monday or Tuesday because it requires more doctors and planning. It is a complex surgery, to say the least.
We should know later tonight which surgery to expect.
This is very painful for all of us. It’s heart-rending.
Just now, we’ve booked a house within walking distance of the hospital, and the children and I are leaving tomorrow morning to join my husband and Paul. Our whole family will be together.
Please remember us in your prayers.
P.S. A friend sent this to me. I feel it in my heart. Thank you, dear friend.
October 7, 2019
I want to begin by soberly thanking every one of you who has offered a prayer or a sacrifice for Paul and our family. Again we are deeply thankful for all the kind words, meals, money, and most especially, the prayers and sacrifices. God works in mysterious ways, and please know that we feel His love through you all.
Unfortunately after another shunt revision surgery last Friday, Paul is still hurting. His head is aching, in an ebb and flow manner, and he isn’t eating well.
Because we were able to secure a house within walking distance of the hospital, however, Paul was allowed to join us. This has been a great blessing for our family. It cheers him to be around all his brothers and sisters.
Yesterday we took the whole family and attended a Latin Mass at the shrine in La Crosse, WI, dedicated to Our Lady of Guadalupe. During his brief homily the priest paused and said quietly, “One of two things happen, when one begins to pray the rosary every day. He either quits sinning, or he quits praying the rosary.”
Put so starkly, those words gave me great hope.
Incidentally, we were able to make this pilgrimage to the Shrine through the generosity of some friends. But also, on a practical level, we were able to take Paul because the Shrine offers rides on a golf cart to those individuals who are unable to make the ten minute hike up the wooded hill to the church. Our Lady was surely interceding for us!
We prayed for Paul, but also for a friend of ours suffering from cancer and for the Amazon Synod. We lit a candle in this small chapel on the hillside:
It was a beautiful day, even if our hearts were aching for our son.
Tomorrow Paul has more appointments, to determine what should or should not be done. Every day we live in uncertainty as to whether he’ll get better or not. It is agonizing. But we continue to trust in God. We want to be loyal to His will, no matter the cost.
Tomorrow is also Paul’s 11th birthday, which he of course shares with his twin brother, Michael. (I wrote about their birth HERE.)
But today…today we thank God for his most lovely and fair mother. Our Lady of the Rosary, pray for us!