Liturgy of the Home

12/03/2024

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06/21/2024

Update on Jamie --- June 21, 2024

 I come to you once again to request your continued prayers for Jamie. As I mentioned before his left cornea has been deteriorating over the past few months and is thinning due to the nerve damage. He does not have the 'blink' reflex and the eye is drying out. There is a obvious clouding over the cornea because of the abrasions and the deterioration... It is quite serious and though we have been doing all that we can to help slow the progression, it seems he will need another surgery to save his eye.

He will be having the surgery this coming Tuesday (June 25th) in the early hours of the morning - 5:30 in the morning! There are two procedures they want to do to protect his cornea from continuing to deteriorate. The first is an amniotic membrane transplant (AMT)... This is a procedure that involves applying a piece of preserved human amniotic membrane (AM) to the surface of the eye to promote healing. After this they will do what is called a Tarsorrhaphy which is a procedure that will involve them closing the eye about 40% by joining the upper and lower eyelids together with stitches.  The hope is that the nerves will eventually come back and then he can have a follow-up surgery to reopen the eyelid.

Though this is a relatively small surgery he still has to be put under anesthesia in the surgery room at OU children's hospital because of the potential complications with his trach. We appreciate all the prayers and support while we continue to navigate how to best care for Jamie.

Thank you! 
+
Michaela

PS : Jamie can't speak but he often folds his hands when we are praying

03/02/2024

We are so grateful that offered to set up a fundraiser for our family during this long trial of recovery for our little Jamie from his brain tumor!
https://www.givesendgo.com/TheHarrisons

The doctors expect we could be in this rehab facility for several months and we are very much missing our other children. With the funds we plan to get an RV so our children can be with us again!

It will be our living space both at the rehab facility here and possibly as well in Tulsa while we are doing a lot of outpatient therapy. Our hope is very much to be able to return home! But we will need to wait till Jamie is stable and hopefully the nerves that were damaged will heal and regain their function. We are very much are looking forward to the possibility of him being able to cough and swallow again!

Thank you so much to everyone who has already contributed! We are very humbled by the outpouring of generosity ❤️

02/07/2024

We had a lovely visit today from one the dear monks of the Abbey as well as a few friends. He brought a relic (several hairs) of our spiritual father Dom Guéranger that came all the way from a monastery in the Netherlands. It was such a comfort to have them visit and to have that special honor of having the relic come to visit Jamie. One of the visitors prepared a lovely picnic lunch that we were able to enjoy together while we talked and visited. Now we can rest in the knowledge of this special visitation. If God wishes a miracle there can be certainty of its origin, but if He wishes to be glorified in our continued sufferings, we have been strengthened by receiving a great honor and grace in the presence of this relic.

02/03/2024

February 3rd general update : After multiple attempts to remove Jamie from the breathing tube it was decided that he needed both a trach and a g-tube. His lungs work fine but he could not keep his airway clear of the secretions. We hope these are temporary measures until the nerves that control cough and swallow regain their function. The tumor and surgery were both in the region where these nerves are located and so it is not entirely unexpected that these should take a hit and take a while to come back online.

Yesterday, February 2nd he went into surgery for both the trach and the g-tube and they will give him about 5 more days of sedation to heal. After that, he should begin to wake up again little by little and we will see more fully which other functions may need help and therapy.

The plan is to be transferred to the Bethany house rehab center where we will most likely be for a minimum of 4 more weeks. There we will learn how to manage his trach and his G-tube while he is getting intensive therapy time.

Though we are only about halfway through our time, hopefully the worst and scariest time is behind us and the remaining will be reconnecting with Jamie on the other side of brain surgery. He has been under sedation for nearly 3 weeks, and we miss seeing him very much. It will be a joy to be able to hold him and cuddle!

We will continue to keep you all updated on his progress as we go through rehab and recovery. We are so grateful to all of you not only for your prayers but for all the sweet messages that you have been sending us.

The children back at home are feeling much better and I am doing better as well -- Deo Gratias!

01/25/2024

Who is Dom Guéranger? Why did we choose specifically to ask for his intercession for Jamie?

For the last several years I have read heavily Guéranger's greatest work, The Liturgical Year.  It is the basis for the inspiration and content of our illustrated liturgical calendars. 

He is also very much a father figure for us. We live a mile from Our Lady of the Annunciation of Clear Creek Abbey which is a granddaughter house of Solesmes, the Abbey founded by Dom Guéranger himself. Jeremiah and I are both oblates, and this connects us even more closely with this spiritual family.

Jamie, our fifth child is especially connected with our calendar project -- we call him our 'calendar baby'.  When I found out I was pregnant with him, and life was already so full, that's when I said we must find a publisher! It was only a few days later that we were approached by Sophia and the rest is history.

I was working on the calendars all during my pregnancy with Jamie, and all while on bed rest I continued to work on this project.  Little Jamie has been with us all along the way.

So it seemed fitting that in this great crisis we should turn to our spiritual father, Dom Guéranger. Especially since he had just recently, on November 8th, 2023 been voted by the French bishops to have his cause for his canonization opened.

So we have been asking his intercession, asking for a miracle if it be God's will. But, if God will be more glorified in us bearing longer the sufferings according to the natural order then we pray for complete resignation to His will while Jamie, God willing, makes his long, slow road to recovery

I hope this explanation helps inspire more people to learn about this great and holy man, as well as become more familiar with his beautiful writings. I have wept many tears at the sheer beauty of the divine liturgy as he explains it in his commentary.

Dom Guéranger, ora pro nobis!

01/22/2024

Another hurdle... Another trial.

As many of you know from yesterday, after 24 hours of constant holding, patting, watching, and hoping we all agreed that Jamie needed to be reintubated.

A few hours after the surgery a week ago we had the code blue scare where he choked on his phlegm and began to turn blue. They did an emergency intubation and he stayed on that for several days. It seemed like all his markers were doing well and so they extubated him on Saturday...

During that time with the breathing tube out the ENT folks put a little scope down his throat to look at his voice box. They could see that the left side was paralyzed and so the opening to his lungs could not fully close shut. This began allowing his upper respiratory secretions to run down into his lungs and with his inability to produce a good cough he was growing weaker and more lethargic as time progressed without his breathing tube. Also, we were having to suction him out too often and this was causing him irritation.

As we look back over the past 6 months or so, we see even more indicators that we were unaware of.
We had noticed that his cough didn't sound normal like our other children but never would have thought to connect that with a brain tumor!

They are feeding him through a tube going into his stomach and he is getting a lot more nutrition that way than he has gotten in a long time. As the tumor was growing and he was having a more difficult time with swallowing and gagging and so he was eating and drinking less and less. Nursing was the only thing that was reliable for him and so he turned to it more and more frequently. But, as good as breast milk is, it's not meant to sustain the needs of a 2-year-old and so he was growing more thin as time went on.

Those 24 hoursof him being extubated were very sobering for both Jeremiah and I ... lots of tears as we are learning to pace ourselves during this emotional roller coaster with so many ups and downs. We are surrounded by people in this hospital who have undergone these and so many more trials. We're learning to rejoice in all the wins and accept the disappointments as best we can.

Forever grateful for your prayers ❤

01/18/2024

We have a few new hurdles to have to overcome with little Jamie...

When we had the scare event the other night, he aspirated some of the phlegm into his lung and so he has the precursors of pneumonia. They are keeping a close watch over it and doing percussion work on him every 4 hours to keep things moving. They have a special way to suction up phlegm from the top part of his lung. As long as he keeps it moving, and we keep on top of sucking it out, hopefully he will get through it soon. They want to wait till the phlegm clears out before we try to take out his air tube, because of the possibility of him having another setback and they want him to be in a more ready state.

His fever keeps coming back but they said this is not completely unusual. They ran blood tests and it does not seem to be from any virus or bacteria from what they can tell so far. We do have him on broad spectrum antibiotics as a precaution. We are sure going to have to do a lot of probiotics when we get out of this!

His head is covered with monitor probes to watch his brain activity. They wrapped all the pros in gauze so it looks like a white hat on his head. That should come off tomorrow.

Overall, they say he is going in a good direction but these are a few of the setbacks we have to work through. The hardest thing for me right now is watching him gag and struggle to get his breath when the phlegm accumulates before they suction it out. They can tell his oxygen levels and so this is something they can manage ... But it is very hard to watch.

Because of being intubated he can't make any noises but I can tell when he's sad or crying because of his eyebrows and his tears. I comfort him as best I can by kissing his forehead and talking to him and making him feel as close as I can. He asks to nurse by pulling on my shirt but unfortunately I don't know when we will be able to satisfy this desire for comfort.

We continue to draw strength from all your prayers and from the intercession of our much beloved Dom Gueranger.

01/17/2024

Today has been a mostly quiet day thankfully. He's been very sedated and is all hooked up with oxygen, IVs, a PICC line, and a feeding tube to a stomach. He's running a bit of a fever and so they are watching that very closely. His eyes are not tracking yet but they said that is not uncommon.

We are praying for a peaceful night and that he can stabilize. The inflammation will hopefully continue to go down and we're really praying that he can come through this to the point of being able to cough and swallow ... The tumor was surrounding and pressing on those nerves that control these and other similar functions.

Jeremiah and I feel like we are being put through the wine press... So many parents have to go through this suffering and now we are joining alongside them.

God give us the strength to persevere! And help bring Jamie to a full recovery!

Dom Gueranger please continue to intercede for us!

01/16/2024

Last night was the hardest we have had to undergo so far... They brought Jamie back to the PICU after his surgery and after a period of time the phlegman in his throat started gurgling, it got it stuck and he stopped breathing --- that's when they called a code blue on him. Absolutely the scariest moment in my life! They were able thankfully to dislodge the phlegm and get him stabilized. They brought him downstairs for a CT Scan and the bleeding on the brain looks normal. The issue is that he needs to be able to cough for himself (to protect his airways) and since he's not showing that ability yet they are keeping him intubated and keeping the airways clear until he is stable. After that they will try again. It has been such an emotional roller coaster for both Jeremiah and I. Lots of tears and prayers. Prayers for his healing, but also for peace with whatever happens.
Everyone's prayers have been the greatest of our comforts. We can lean into it and know that whatever happens is truly God's will. There are so many people far and wide praying for him all over the world.
We continue to ask Dom Gueranger for his intercession!

01/16/2024

We are back up in our room and getting situated for the night. He's still very groggy... He said he's doing very good. They will check on his swallowing and speech tomorrow.

01/15/2024

Jamie made it through the surgery and is now doing a follow-up MRI. We're waiting for the call to go down and meet him. He'll probably be very drowsy and in a lot of pain tonight and tomorrow. I won't be able to nurse him until he can pass the swallow test. I'm pumping and they can feed him through the feeding tube if necessary. We spoke with the surgeon and he said everything went as well as he expected. The tumor came out mostly clean except along the edges that were adhered to his brainstem and around several nerves ... He had to leave some of the tumor tissue there. We will be waiting and watching with Jamie and see what the next few days have in store for us.