From the PICU to the Floor to Home

Caleb's story continues today. It will be a bit longer than previous posts because I would like to finish up our hospital stay today. It also has a lot of pictures, because there was just so many good ones taken during this time.

"Jesus and his disciples saw a blind beggar," I read from Caleb's beginner Bible as he laid in his bed. "He had been blind since he was born. The disciples asked Jesus, 'Teacher, did this man sin? Or did his parents sin? Is that why he is blind?' 'No one sinned,' said Jesus. 'This happened so that God's work could be shown in his life."

I paused and looked at Caleb.

"Just like in your life," I told him.

This was just one of the many Bible stories that I read to him while he was in the PICU. I felt reading to him was important, and now, since he was off the ventilator and awake, he could hear me.

That Friday, the same day he was taken off the ventilator, the doctors started him on his low protein diet, and we had a scare. His ammonia shot up again causing seizure-like episodes, but the Lord is good. Caleb was able to regulate the ammonia on his own.

That day also marked another milestone, we began trying to bottle feed Caleb. Due to the trauma of the ventilator, Caleb would not take to the bottle. A speech therapist came to work with him and give us tips to use through the weekend.

That weekend went smoothly. Caleb stayed in stable condition, with his ammonia levels in check. We had to put the bottle feeding on hold though because Caleb was gagging on the nipple. It made us a little nervous, so we decided to wait until Monday when we would see speech therapy again.

Monday, May 6, was a very exciting day for us. When we go to the hospital that morning, the doctor told us we would be moving out of the ICU and onto the floor. It was another step closer to going home!

With the move to the hospital floor, we decided it was best if one of us stayed with Caleb at all times. In the PICU, there was a nurse assigned to Caleb and maybe one other patient, but on the floor one nurse had several patients. This meant that if we weren't there, no one would constantly be there to check on him.

First day on the floor

I stayed the first night with Caleb. After just two nights, John decided to move to the hospital with us. We stayed as a family in that small hospital room for the rest of our duration. It was exciting because we were actually able to be a family. The nurses only came by every 3-4 hours, unless called, so we were Caleb's primary caretakers, as it should be.

We were on the floor for 10 days. During that time, we had a lot to endure.

Mom's favorite pic :)

Caleb underwent an MRI on May 8. It was hard for us because Caleb had to be sedated for it. It also came back a little abnormal. The doctor believed Caleb had suffered some brain damage to the high ammonia, seizures and comma. He told us there was really no way of knowing how much, if any, damage he had suffered. We would have to wait and see how he developed.
**Update** Caleb had an EEG on December 17. The results came back normal! This was exciting news because his first EEG (the one he had in the PICU) was a bit abnormal. The neurologist said that because the EEG looked good and Caleb looks amazing, she is not concerned with those results and will not repeat the MRI.

We also decided to get a G Tube for Caleb. His bottle feeding
progress was very slow. He would barely drink a third of the bottle. The doctors could not let us leave until he was able to take all his food and medications by mouth. We knew it would be a while before he achieved that, so we felt that a G Tube was the best decision. He underwent that procedure May 14. It went smoothly.

That Thursday, May 16, the doctors told us that we would be leaving the next day. Those words were music to our ears!

Friday, May 17, we left the hospital around 3pm. We got home around 8:30pm to my mom and our dogs. It was such a relief to be home! Unfortunately, it would be a relatively short stay.

We waited until we were home before cutting off the bands from Caleb's birth. We said we would wear them until he was discharged. It felt so good to cut them off!

Psalm 28:6-7
Praise be to the Lord, for he has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in him, and I am helped.

To Transplant Or Not To Transplant

I am taking another break in Caleb's story because of a recent decision that we faced.

The day we got Caleb's diagnosis, the doctor told us a liver transplant was an option that would allow Caleb to eat a normal diet without medication. He told us the transplant has a success rate of 90%.

We immediately said that we didn't want to even consider it for Caleb. 

Recently, we have heard from most of Caleb's doctors that he looks so normal. We finally asked why doctors seemed so shocked to see how he is doing. Apparently, a large number of kids with metabolic disorders suffer some type of brain damage before they reach adulthood. 

Armed with this knowledge, we started to really consider a liver transplant.

Today, we met with the liver doctor and a transplant coordinator. We have decided to move forward with the transplant. We still have time to change our minds, but I doubt we will.

There is a lot to do before he can get a transplant. The biggest obstacle is finding a live donor. It is highly probably that John or I will be the donor, but it is not a guarantee we will be a match for Caleb.

After speaking with the doctors, the success rate for Caleb's surgery is 95%. The donor's surgery has more risks involved, but most of then can be handled.

This was a big decision, and it wasn't made lightly. We need God's strength and peace more than ever, as well as your prayers. Pray for our peace and that we will find a good donor, whether it is John, me or a complete stranger.

I will continue to update you on our progress with the transplant.

Isaiah 41:13

For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.

Turning the Corner

It looks like it should only take a few more posts to finish Caleb's story. I'm excited to get caught up, so I can do more blogs about what's going on with us now. The story continues from my journal.

The afternoon after Caleb's dialysis, my father-in-law arrived. He didn't tell us he was coming, and it was so nice to have someone there for support. For the rest of the day, we just sat in Caleb's room, monitoring him. After his ammonia levels dropped, he became a bit more stable, but the doctors kept a close watch on him.

That evening, we went out to eat at a pizza place a few blocks away. My Uncle John called before we sat down to eat. It was so great to hear from him. He was very comforting and encouraging. His son had been in the NICU when he was born, and it felt good to talk to someone who had experienced what we were experiencing.

"Kids are resilient," he said.

He told me that Caleb would "turn the corner," and when he did, he would improve by leaps and bounds. Kids are strong that way.

The next day, May 1, was another day of waiting and watching. My mother-in-law came in to town.

Caleb was still on the ventilator, several medications, monitors and had the central line. We had not held him since Monday. Although it had only been a few days, it had felt like an eternity. I just wanted to hold my baby.

I found comfort in the book of Job during this time. In the final chapters, a dragon-like animal is described, emphasizing it's power and greatness. God was telling me that He had made Caleb strong, just like he had that great beast.

The next day, just like Uncle John said, things began to move in a great direction. The doctors took out the central line and stopped some of the medications. They decided to start continuous feeds through a tube and limit the IV fluids. This was amazing news because Caleb had gotten so puffy from all of the fluids. We also found out his diagnosis: citrullinemia type 1 (after I finish his story, I will post information on his disorder). Finally, it felt as though we had turned the corner in his recovery!

That Friday, when Caleb was one week old, he was taken off the ventilator. This was such an exciting day for us! Caleb was breathing on his own! Not only that, but we were going to be able to hold him. Of course, we had to have a nurse help us get situated due to all of the wires still connected to him, but at least we could hold him close. He was also taken off the rest of the IV fluids and put on a limited protein diet.

Today's passage is going to be long because I want to share from Job, chapters 41 and 42.

Job 41:12 through 42:2
I will not fail to speak of his limbs, his strength and his graceful form. Who can strip off his outer coat? Who would approach him with a bridle? Who dares open the doors of his mouth, ringed about with fearsome teeth? His back has rows of shields, tightly sealed together; each is so close to the next that no air can pass between. They are joined fast to one another; they cling together and cannot be parted. His snorting throws out flashes of light; his eyes are like the rays of dawn. Firebrands stream from his mouth; sparks of fire shoot out. Smoke pours from his nostrils as from a boiling pot over a fire of reeds. His breath sets coals ablaze, and flames dart from his mouth. Strength resides in his neck; dismay goes before him. The folds of his flesh are tightly joined; they are firm and immovable. His chest is hard as rock, hard as a lower millstone. When he rises up, the mighty are terrified; they retreat before his thrashing. The sword that reaches him has no effect, nor does the spear or the dart or the javelin. Iron he treats like straw and bronze like rotten wood. Arrows do not make him flee; sling-stones are like chaff to him. A club seems to him but a piece of straw; he laughs at the rattling of the lance. His undersides are jagged potsherds, leaving a trail in the mud like a threshing sledge. He makes the depths churn like a boiling caldron and stirs up the sea like a pot of ointment. Behind him he leaves a glistening wake; one would think the deep had white hair. Nothing on earth is his equal-a creature without fear. He looks down on all that are haughty; he is king over all that are proud. Then Job replied to the Lord: "I know that you can do all things; no plan of yours can be thwarted."

He Could Still Die

Continuing from my journal.

I'll never forget that Tuesday morning. We got to the hospital around 10. I was so anxious walking back into the hospital. What did this day hold? Would Caleb improve or worsen? How would we get through another day?

We walked into his room. His nurse was there. We asked the typical questions. Had he made any improvements? What was the plan for the day? Those types of questions. The nurse, obviously, couldn't answer, but the doctor would be by shortly for the morning rounds.

He weighed under 7lbs but was puffy from all the IV fluids. I lovingly called him jabba the hut. :)

It wasn't long before the doctors came. They went over his situation with each other. John and I sat listening as the doctors spoke to each other in, what was to us, a foreign dialogue filled with acronyms and drug names. We had no idea what they were saying to each other. The message to us, however, was loud and clear.

The doctor told us what we already knew, the dialysis in the early morning hours had not gone well. I guess we looked hopeful or something, because the doctor felt the need to bring us to reality.

"He could still die," she said.

Those four words rocked our world. This was not something we didn't know. It was just something we didn't say.

At 11am, the second round of dialysis started. We left the room but would be allowed back when the procedure had stabilized.

During the time we were waiting, a pastor friend of my father-in-law came to pray with us. It was very calming to have him pray for and with us.

Although we didn't know it at the time, a small prayer circle had gathered to pray for Caleb. They met at the exact time his dialysis was happening. God is truly amazing! We were so blessed to have people that cared to get together and pray for our son.

Around noon, the doctor came and told us we could sit in the room for the rest of the procedure. The dialysis was going much smoother this time. I was hesitant to go and unsure if I could handle seeing it, but John wanted to be in the room.

Surprisingly, it wasn't hard to see. While we waited, we talked with the doctor. Dr. Evie was amazing. She talked to Caleb like he was awake, telling him he was strong and would get through this. I was so happy to have her by his side.

The doctors would check his ammonia levels, looking for a normal report.

Finally, the report came back that his ammonia had dropped to 52. Normal! It was time to celebrate. While this was a great report, and an answer to our prayers, Caleb still had a ways to go before he would be out of the woods.


Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Today's verse is my favorite. It got me through this hard time. I love it and turn to it often.

Alone I Am Weak

I have to take a break from telling Caleb's story because I need to vent.

I am not strong. People tell me that I am, but I am not. God is strong, and he makes me strong, sometimes. In telling Caleb's story, I remember how I felt because I had total and complete faith in God. For the first time, I truly gave my situation completely to God. I wasn't trying to control things or fix things because there was nothing I could do.

In my every day living, I don't give my situation to God. I try to take control, try to do it on my own. People think I'm strong because I don't let them see the days when I am so unbelievably weak. I hide those days when I struggle to accept our situation. Why would I want anyone to see those times?


Today is one of those days. That HAS to change. Now.

When I dwell on the negatives, the things I can't control or change, it takes away from the positives. We have so much for which to be thankful. Our son is alive and thriving. In fact, his (many) doctors are always surprised at how well he is doing. They tell us that it is a surprise that he looks so healthy and is doing so well because many kids with metabolic disorders do not do this well. We are blessed.

Today, I am giving my situation back to God, the only one with any control. I have to refocus my efforts on trusting him instead of trying to handle the situation on my own. The past few days have been rough for me because I have tried to shoulder the load by myself. It is through God, and him alone, that I have strength and peace with the things I cannot change.

I am not strong. God is strong.

Psalm 18: 1-3, 30-36
I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold. I call to the Lord, who is worthy of praise, and I am saved from my enemies.
As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him. For who is God besides the Lord? And who is the Rock except our God? It is God who arms me with strength and makes my way perfect. He makes my feet like the feet of a deer; he enables me to stand on the heights. He trains my hands for battle; my arms can bend a bow of bronze. You give me your shield of victory, and your right hand sustains me; you stoop down to make me great. You broaden the path beneath me, so that my ankles do not turn.

NOLA Bound

Our story continues after Caleb left for New Orleans.

We left shortly after Caleb, around 10pm. It was a three hour drive for us, one of the longest of our lives. John drove, and, somehow, I was in and out of sleep.There wasn't much conversation between us. I don't know if we were just scared to voice our thoughts, or if we were just too tired to talk. Most likely, we were both too busy praying for Caleb's life to talk to each other.

We hadn't been on the road long when I got a call from the transport nurse. They had arrived safely. Caleb was with the doctors now. Just knowing he was there with them made me feel a little better.

Around 11:30pm,  I got a call from the doctor. She needed my consent to run dialysis on Caleb. She said they couldn't wait for us to get there because she wasn't sure he would make it. I gave my consent for a central line, blood transfusion and dialysis.

The rest of the drive was excruciatingly long. We had no way of knowing how things were going with Caleb. There was only one thing for us to do, regardless of our location, pray.

It was 1:15am when we arrived. Caleb had been put in the pediatric ICU because the NICU didn't facilitate dialysis. I will never forget the way we felt as we looked for the PICU.  It felt as though I was in a terrible, terrible dream. I never imagined that we would face something like this. It was so surreal.

The PICU was on the sixth floor. I have no idea how we found it. We walked through the doors and were immediately met by doctors. They hadn't been able to start dialysis yet. They were still working on putting in the central line, which is a line put directly into the heart.

They told us it would be a couple of hours before they would be able to do the dialysis. The doctors walked us to his room. When we turned a corner, we saw his tiny body laying in such a big bed with a team of doctors and nurses surrounding him. He was a small baby, just under 7 pounds, but he looked exceptionally small in this setting.

I didn't want to watch the procedure. We decided to head to the hotel that my father-in-law booked for us. I was able to take a shower. I wanted to sleep, but John wanted to be at the hospital. It was after 2am when we headed back.

Once we got there, we settled into the waiting room to do just that, wait. Nurses brought us some sheets, pillows and blankets. We tried to make a comfortable area on the floor but had little success. We laid there praying and trying to sleep.

I'm not sure of the time, but I think it was around 4:15am when we finally decided to check on Caleb. When we got back to his room, we didn't get good news. The dialysis had not gone well. They had to stop it because his blood pressure kept dipping dangerously low. They would have to try again when and if he was more stable. They gave him some epinephrin to help.

After looking in on him, we could do nothing else but go back to the hotel to try to sleep. We only slept for a couple of hours. It was Tuesday, April 30, and Caleb was 5 days old.


Nahum 1:7
The Lord is good, a refuge in times of trouble. He cares for those who trust in him.