The Waiting Game

Many of you have asked for updates on Adam's condition. "Did the surgery work?" The reason I have been silent for a week is because we just don't know yet. The surgeon told us it might take a couple weeks after the surgery to see improvement in his skin coloring and bilirubin levels. I have two doctor's appointments next week, one with the surgeon and one with Adam's pediatrician. Hopefully those appointments will give us some answers, and Lord willing, they will be answers that we want to hear.

In the meantime, Adam has been recuperating well from the surgery. He is definitely fussier than normal, but he is still sleeping solidly at night, usually four hours at a stretch (a huge blessing for me!).

In the picture above you can see the gamut of medications he is on: oxycodone and ibuprofen for pain management; simethicone to help with gas distention; prednisone (the big bottle), a steroid to prevent inflammation; omeprazole, to reduce the heartburn created by the steroid; an antibiotic, the proper name of which I am not even going to try to spell; and last but not least, a multivitamin to make up for deficiencies caused by the jaundice.  

As you can imagine, getting him to take all those meds is no picnic either for him or for me. The only one that he seems to actually like ingesting is the oxycodone--which is also the only one that he'll stop taking in the near future. Our mornings are spent with lots of crying, pinched cheeks, forced swallowing, and attempts to avoid vomiting everything that made it from the syringe into the stomach.

In the midst of this severe trial, it's still a joy to watch both the boys growing older. Oliver just moved up to 3-6 month clothing this week and Adam will be soon to follow. They've both been enjoying their new dangling toys, courtesy of cousin Phinehas, and David's MacGyver mobile made of foil has also been a big hit.

We've also been completely overwhelmed by the kindness of our church family with all the visits, meals, love, and prayers. Thank you, thank you, thank you from the bottom of our hearts. Please continue to pray for Adam, and I will be sure to give an update next week when we find out more information.

Adam placidly plays with the new toys.

Oliver attacks the new toys.

Hospital Happenings

It's day four at the hospital for Adam (or day eight if you count last week's stay at Doernbecher). Things are looking up, and we are looking at the possibility of going home tomorrow. Maybe. You never can say for sure with these things.

Yesterday Adam had the tube taken out of his nose. Today he got his epidural taken out and his urine catheter. He started drinking clear liquids again last night and has had four feedings of formula today. Our nurse said that he's healing up much faster than the previous two Kasai patients she attended.

The big topic of conversation after a surgery like this is--of course--poop. Adam pooped. Several times. It was green and dark brown. This is good. It means that the bile is starting to flow from his liver into his small intestine. Our surgeon took a picture of it as a teaching tool for the residents. I did not take a picture of it, so you will just have to imagine what it looks like.

It's much too soon to say if the operation has been successful but the early signs are good. When Adam goes home he'll be on steroids and antibiotics for a long time, a year or more. His condition needs to be monitored regularly, and we will have dozens of follow-up appointments with different specialists. I'm pretty sure that "going to the doctor" will be a large part of Adam's life for the next several years, but scads of medical appointments are a small price to pay for the gift of being alive.

Praise God from whom all blessings flow!

Adam, a lot happier now than he was after the operation on Monday.

Adam, enjoying his dose of morphine.

Meanwhile, Oliver enjoys his vacation at the Hayes home...

...and successfully convinces Aunt Amy to let him pose for some pictures.

Doernbecher Take Two

Today was Adam's second surgery at Doernbecher Children's Hospital. This time the surgeon did the full Kasai procedure to correct his biliary artresia. The surgery went well, but we won't know for a couple weeks whether Adam's liver will cooperate and start draining bile into the loop of small intestine that is now directly attached to his liver. In the meantime, we will probably be in the hospital for about a week. Adam is still on an epidural to handle his pain and on antibiotics and steroids to keep down the inflammation and to help the liver accept the new state of affairs. They say that the steroids will make him swell up like a balloon, so now our twins might start looking more identical.

On the way to the hospital this morning we saw a vivid rainbow above the city of Portland. It was a beautiful reminder of God's covenant with us and how He fulfills his promises to His people. "All things work together for good for those who love God, for those who are the called according to His purpose." (Romans 8:28)

Oliver and Adam play on their blankets while we pack our bags for the hospital.

Aunties take care of the boys in the surgery waiting room.

Adam getting a last minute hug before going down the hall to the operating room.

Oliver conks out on Auntie Jessica as we wait.

The Lortz family likes to play games, even in hospital waiting rooms.

Our little boy fresh out of the operating room, with breathing tube, heart monitor, and a wicked new scar.

At least he's too doped up to feel much right now.

Still cute, even after five hours on the operating table.

 Sleep tight!

Vicissitudes

The latest news on Adam is that we checked out of the hospital last night and will be checking back into it on Monday.

Yesterday afternoon I spoke with the surgeon. He has been working on Adam's case all week. When he did the cholangiogram during Adam's surgery on Tuesday (inserting contrast to show where the bile ducts are in the liver), he said that he thought he maybe saw some small ducts connecting the liver and the intestines. He also saw very few bile ducts inside the liver (typical of the Alagille Syndrome). This led him to doubt whether Adam had biliary artresia and so he decided not to proceed with the Kasai (connecting a loop of the intestine directly to the liver).

The GI doctor agreed that perhaps Adam's jaundice is a result of the Alagille Syndrome instead of biliary artresia. Over the last few days they have been running scads of tests to determine whether this is the case: liver tests, heart tests, eye tests, skeletal tests. The surgeon got the pathologist to speed up his examination of the liver biopsy, and yesterday the results were in. It is most probably NOT the Alagille Syndrome and it most probably IS biliary artresia, the original diagnosis.

Although the biliary artresia diagnosis is not 100% positive, the surgeon has decided that he now needs to do the Kasai procedure since the only other option is a liver transplant. This procedure has a much greater chance of succeeding in patients who are less than three months old, so time is of the essence. We are scheduled to check in for surgery at Doernbecher at noon on Monday and the surgery is supposed to start at 1:30pm.

It is more than a little disheartening to be back to square one. Please pray for Adam to stay healthy for the surgery and not suffer too much when he has to go back on his clear liquid diet for 24 hours before the surgery. Please pray for me to be able to take care of both twins and handle the emotional stress well. Please pray for David to be able to juggle work, school, and family during this difficult time. And most of all, pray that the surgery would be successful!

Operation Answered Prayer

Sleep has been short and so this post will of necessity be short as well. Thank you all for your prayers for Adam over the past week. God has answered them abundantly.

We asked that Adam would tolerate his pre-op preparations well. I was astounded at how patiently he endured the constant visits to the lab, giving the maximum amount of blood nearly every day in the week before the surgery so that various tests could be run. Twenty-four hours before our scheduled time for surgery, he had to go off formula and only drink clear liquids. I was afraid that he would cry for hours, but in fact, it was his twin Oliver who was the biggest fussbudget on the night before the operation.

We asked that the surgeon would only have to perform the laproscopic surgery and that he would discover ducts leading from the liver into the small intestine. The surgeon did indeed find the ducts, showing that Adam does not have biliary artresia as was at first feared. Although he had to make a small incision, it was tiny compared to the large one that the Kasai procedure would have required.

It is a great blessing that Adam does not have biliary artresia; however, this means that we still don't know what is causing his jaundice. The surgeon took a biopsy of his liver and the pathologist should have the results back from this within a week. After that we will meet with a liver specialist and have more blood drawn and more tests.

We're still unsure how long Adam needs to stay in the hospital. We could get out today. It could be one or two more days. David and I are spending the nights here at the hospital while baby Oliver is with Grandma Janet at the Hayes home.

New prayer requests for Adam are: (1) that he would experience relief from the pain of the incision and the build up of gas in his bowels, and (2) that the liver specialist would be able to easily diagnose and treat the cause of his jaundice.

Thank you all for your continued prayer! It has been a tremendous support to us to know that the community of believers is lifting us up for intercession before the throne of Grace.

Blood Work and Boxes

A guest post by the David Spears so a mother can get some rest before the big day. 

Due to the great swell of support and prayers we have received for Adam, we thought it best to keep those praying updated. The support has become a great anchor for us in these very rough seas. It is an even greater comfort knowing that the anchor firmly rests on the Rock of Christ.  

There is no mistaking the seas are raging with all the uncertainty life can bring. The house that could become our greatest economical advantage, the house that will be my sons’ home, finally cleared its last hurdles. It was a close thing; the closing came down to a two hour window where the whole deal could have collapsed. I turned in so many “one last thing(s)” that I began to think people forgot what the word “last” meant. I also had to pay $1200 dollars extra due to “oops” in the paper work. In fact, not a single date/timeline was achieved in the whole process until time ran out. Fully expecting to miss the last deadline as well, we registered the title with half an hour left by my watch. It was a close thing.

The support I mentioned has been more than just prayers. By my guess about twenty or thirty people showed up to move my family to our new home last Saturday. It was very humbling and amazing. We had only one day to move due to my school term starting today and Adam’s surgery starting tomorrow. Saturday was the only day to move, and what a move it was. There was almost too much help. The Lord answered our prayers not abstractly but with a strong vibrant church that came out to help us when we needed it the most. To those who know who they are, thanks.  

As important as this home is for my family’s future, it is just a material thing. It is wood and concrete. It pales in comparison to the importance and value of my son Adam. It is an afterthought when I think of the uncertainty Adam faces. Just this week Rose took Adam to three different hospitals in one day to search for answers.  Adam, just his name reminds me of how familiar death is to me. Death and I are definitely no strangers and I cannot pretend “everything will be fine” when I know it is not always so.  The seas are definitely raging and the storm is all around.  Adam has started his liquid diet and soon will be off even that to prepare for his surgery. It is a hard thing to starve a little baby in order to do what is best for him. Yet this is what Christ did for us, He died so we can live. Death, while familiar, is not something I fear anymore. Christ has Adam's future in His care just as much as he did the very first Adam. The Lord can use the surgeons to answer our prayers just as easily as He provided so many helping hands to move us into our new house. My family rests firmly on the Rock that is Christ and we thank you all for your prayers. 

As of right now Adam is scheduled for a 10:30 am surgery tomorrow morning.    

    

The Cords of Death

Today has been very bittersweet for us. The house we have been trying to buy for five months finally closed and, Lord willing, we will be moving into it on Saturday. We also got the results back from a bunch of tests that our son Adam is undergoing and things look rather grim. He is now scheduled to have surgery at Doernbecher Children's Hospital on Tuesday.
 

On New Year's Eve we had taken him in to Urgent Care because he was looking jaundiced. They gave him a blood test and discovered that his bilirubin levels were high (even though at eight weeks of age, he is too old to have the normal newborn jaundice). On New Year's Day he had an ultrasound which revealed that he is probably missing his gall bladder. On Monday morning of this week the doctor called us saying they were worried he might have a condition called biliary atresia. Basically, this is a condition where the ducts which carry bile between the liver and the small intestine have not developed (usually accompanied by the absence of a gall bladder). On Tuesday and Wednesday Adam underwent a nuclear test at OHSU where they introduced a small amount of radiation into his blood stream, waited for the liver to filter it out, then watched to see if it entered his intestines. Since the radiation stayed in his liver, this is evidence that the ducts connecting his liver and small intestine are either too small to work or are absent altogether.

When Adam goes to Doernbecher on Tuesday, they will begin with a laparoscopic surgery to see if the ducts are there, but just too tiny to work. If they find them, then the surgery will be over; we will wait for his ducts to develop, and a gastroenterologist will find a way to deal with the bilirubin in the meantime. If they do not find any ducts, then they will do a Kasai procedure where they connect a loop of his small intestine directly to the liver so that the bile can be transferred. This surgery succeeds a third of the time. Another third of the time the procedure works for a while but then eventually stops working. Another third of the time it does not work at all. In cases where the procedure stops working or does not work at all, the patient then needs a liver transplant.

We would especially like your prayers that (1) Adam would tolerate all of his blood work and pre-op well over the next few days; (2) the laparoscopic surgery would be all that is necessary and that he would have small ducts present; and (3) that if this is not the case, the Kasai procedure would be effective and no liver transplant would be necessary.

In times like these, there is a song that runs through my head, a metrification of Psalm 116 by William Kuipers.

I love the LORD, the fount of life and grace;

He heard my voice, my cry and supplication,

Inclined His ear, gave strength and consolation;

In life, in death, my heart will seek His face.

The cords of death held me in deep despair;

The terrors of the grave caused me to languish;

I suffered untold grief and bitter anguish;

In my distress I turned to God in prayer.

I cried to Him, "Oh, I beseech Thee, LORD,

Preserve my life and prove Thyself my Savior!"

The LORD is just and He shows grace and favor;

In boundless mercy He fulfills His word.

The LORD preserves the helpless graciously;

For, when brought low, in Him I found salvation.

Come, O my soul, relieved from tribulation,

Turn to your rest; the LORD has favored me.

O righteous LORD, Thou in Thy sovereign grace

Hast saved my soul from death and woe appalling,

Dried all my tears and kept my feet from falling,

That I may live and walk before Thy face.

I have believed and therefore did I speak

When I was made to suffer tribulation;

I said in haste and bitter consternation

All men are false, and guileful ways they seek.

What shall I render to my Savior now

For all the riches of His consolation?

With joy I'll take the cup of His salvation,

And call upon His Name with thankful vow.

In all His people's presence I will pay

My vows to Him, the LORD so good and gracious.

To God the death of all His saints is precious;

In times of grief He is their help and stay.

I am, O LORD, Thy servant, bound yet free,

Thy handmaid's son, whose shackles Thou hast broken.

Redeemed by grace, I'll render as a token

Of gratitude my constant praise to Thee.

Jerusalem! Within your courts I'll praise

The LORD's great Name, and with a spirit lowly

Pay all my vows. O Zion, fair and holy,

Come join with me and bless Him all your days!