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.
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.
I just recently miscarried our 8th child. I had only been pregnant 5 weeks, which is to say, that I had only known I was pregnant for about a week before the baby died.
Backing Up a Bit
Now let me back up a bit. In case you’re new here, you may not know that our family has had one wild year, with the most stressful thing being the health of Paul. In particular, we have spent the last few weeks making multiple trips to Mayo in Rochester, resulting in two surgeries.
In the midst of this, I became pregnant. Now I know some of you will think this is irresponsible. Some of you will shrug your shoulders and scoff at the effectiveness of NFP. Some of you will think we’re just downright crazy.
And so we are. For we knew what we were doing. It was not a reckless choice; rather, it was a decision of love.
Because I do chart according to the Creighton Model, I knew I was pregnant before I took the test. And truthfully, in spite of it all, I was struggling with feelings of doubt, of stress, and of, well, craziness.
In fact, I spent an hour with Jesus in Adoration, discussing these very things. After I poured my heart out to Him, I opened my Bible to read my passage for the day, which happened to be Isaiah 61. Knowing my passage was coming from Isaiah, I fully expected to read something about fire and brimstone and years of exile. Instead, I got this:
“The Spirit of the Lord God is upon me…to bring good tidings to the afflicted; he has sent me to bind up the brokenhearted...to proclaim the year of the Lord’s favor…to give them a garland instead of ashes, the oil of gladness instead of mourning, the mantle of praise instead of a faint spirit; that they may be called the oaks of righteousness…”
A Year of the Lord’s Favor
I read and reread that passage. A year of the Lord’s favor…garlands, oils, mantles of praise… I let it wash over me, and I left Adoration feeling light and full of hope. This was going to be a year of the Lord’s favor. I mean, that’s awesome! Who know what’s in store for me? Whatever it is, it’ll be great.
A few days later, a pregnancy test confirmed my suspicions. I’d be lying, however, if I said that I was all jumping jacks and high fives. No, I was worried. My pregnancies are never easy after all, and how was I going to handle this?
Then I thought of all the things I’d have to say “no” to. No to a silent retreat. (I’d be too sick.) No to running and biking and even walking later on. No to fitting into my clothes again. No to wine and lemon martinis. No to sleeping ever again. No, no…no.
Thankfully, however, I have great friends who reminded me of my silliness and then, I also remembered Isaiah 61–a year of the Lord’s favor. After I hyperventilated for one more minute, I stopped and laughed out loud. A year of favor from the Lord!
Yes, suffering and pregnancies and children are great blessings from the Lord. All one needs to do is read Psalms 127 and 128 to know that. In fact the Bible is replete with passages about children being a blessing.
As a couple of days went by, my husband and I began to be excited. 8 kids! Under the age of 13! Wow, we’re so blessed!
St. John Marie Vianney’s Heart
During this time, the heart of St. John Marie Vianney happened to be at the Cathedral for two days of public veneration, so I loaded the children up and braced myself for long lines.
When we walked into the church, however, almost nobody was there. I held the baby, grabbed the hand of the 3-year-old, and led the children straight to the kneelers, which were placed directly in front of St. Vianney’s heart. We knelt and prayed. We touched our scapulars to the glass of the reliquary. Then I handed the baby off to The Eldest and prayed some more.
I prayed that my guardian angel would somehow take the heart of St. Vianney and touch my heart with it. I prayed that he’d touch the heart of my cousin, who suffers from alcoholism. I prayed that he’d touch the heart of a certain priest I know. I prayed that he’d touch the heart of my husband, my children, and lastly, the little baby growing inside of me.
My heart swelled with emotion, as I knelt there with all 8 of my children surrounding me. God is so good, so good.
Afterwards, we stopped by a friend’s house, and I mentioned my pregnancy and the Isaiah passage about a “year of favor from the Lord.” She said, “You know, that reminds me of the Annunciation, when the Angel Gabriel greeted Mary with, ‘Hail, Favored One.'”
How beautiful! To connect a year of “favor” and pregnancy to Mary, Full of Grace, and certainly favored. My heart was full.
My Heart Breaks
Two hours later I began bleeding. At first I couldn’t believe it. Maybe the baby would still be ok? I called my doctor, but I couldn’t get in to see him until the next day.
And that night the baby died, as I bled and bled.
In the morning, my husband and I stood before the icon of the Sacred Heart of Jesus, and my soul cried, My little baby! I will never hold you in this life! Did I tell you how much I love you?
My husband held me. We prayed Morning Prayer and knew that the baby needed a name. As I had mentioned Isaiah 61 and the Annunciation to him earlier, we named the baby Gabriel Marie. We thanked God for his life, and we commended him to Jesus and Mary.
We told the children too, as they joined us for Morning Prayer, and we answered their innocent, concerned questions as best as we could.
Then my husband had to go to work, and I had to take care of the children. It was an emotional day.
My Heart Grows
Life must go on.
A few days later I was in Adoration again, and I was overcome with a spirit of doubt–doubt about my feelings, doubt about naming the baby, doubt about the existence of the baby himself. Maybe I was just being ridiculous? Overreacting?
I soon realized, however, that these agitating thoughts were not from Jesus, and I cast them aside. But still, in a place of fear, I begged Jesus, Please will you give me a sign about little Gabriel? Jesus, I am weak. If my Gabriel was real, let me come across someone named Gabriel today. But not my will, only Your will be done.
I left Adoration feeling a little down and drove to the grocery store. As I pushed the cart around, I forgot all about my prayer and moved to a checkout lane. I zipped by an empty one, because I was looking for a particular clerk that I always go to. But she wasn’t there, so I backed up and entered the empty lane and began unloading my groceries.
When I glanced up, I noticed a new clerk, someone I had never seen before. His name was Gabriel.
I was stunned. Could this be a coincidence? No, for there is no such thing for those who believe in God. Oh, how my heart swelled again! How weak and fickle I am, but Jesus is so good to his little ones. I felt His love in that moment and knew that my Gabriel would be ok.
I continued unloading my groceries, and I smiled at Gabriel the clerk.
When I got home, these greeted me:
While I was away, someone had anonymously sent me these beautiful flowers with a quotation from the Bible which reads,
“Behold, I am with you always, even to the end of the age, alleluia.”
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.
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.
I write this morning asking for prayers. 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.