The biopsy

On a cold Tuesday morning I was wrestling the boys into their car seats to try and get myself to bible study on time when I missed the call. So once we were all strapped into the car, with the heat running, I listened to the voice mail from the liver specialist. She was brief but stated that we needed to go ahead with the liver biopsy and she would try to call me back. This was a breaking point for me. I had been praying against this so hard. I did not want to go through with the liver biopsy and I only had this short voice mail and no more information about why we need to go ahead with biopsy. I just started to cry, why God, I do not want this! My little one year old can not have surgery! I tried to call Tim, about 5 times, but he was in a meeting and couldn't talk. Once I got to church I dried myself up, took the kids to childcare, snuck into bible study and squeezed into the table my friends were at. It only took about 2 minutes before they all asked if I was ok. I cried and explain that I just got a short voice mail and was just overwhelmed with the idea of a biopsy. The table of women immediately stopped and prayed for me and my family. It was just what I needed in the moment.

Later in the afternoon I got in touch with the doctor and she explained that the blood work came back and ruled out a couple of disease but she needed to get the biopsy to confirm her hunch. This was the first I had heard Glycogen Storage Disease mentioned. It was a huge relief to actually hear a possible diagnosis. It was a relief to know that they knew what they were looking for and that all the blood draws and tests were not unnecessary. She explained again what the biopsy would entail and said they would call to schedule with me. We were told he would be under anesthesia for 10-15 minutes. It is a minimally invasive procedure, only a needle, but due to the tissue of the liver there is a risk of internal bleeding. He would need to have blood work done several times after the procedure and would be closely monitored. It would most likely be an over night stay at the hospital due to his age. I was feeling much better about everything but was still nervous about the biopsy, but I was able to start mentally preparing myself. 

I had my first ultrasound the afternoon we heard we needed the biopsy.
This is how we announced baby to family.

It took what felt like forever to get the biopsy scheduled. I was waiting for them to call for 2 weeks and they never called. We had our trip to NY planned and I was getting nervous the procedure would interfere with our trip or just be delayed until after which would be close to Christmas. So once I called I found there was a problem in communication or the computer system and the scheduler did not have the order in the system so I called the nurse, the nurse called the scheduler, the scheduler called me back, it was stressful. But it was scheduled for about 2 weeks out, just a few days before we were to fly to NY.

My friend, Jen, was able to come spend the whole day of the biopsy at our house with Ben and her son. She was actually excited for them to be able to spend that time together before they moved. She was a huge blessing because I did not have to worry about Ben at all during everything. The whole day was so overwhelming it is hard to look back and remember everything. I had to wake Micah up early and be out the door, so Tim left after us and met us there. Micah had to fast for the procedure so he had some apple juice when he first woke up and then nothing all day, which was a huge concern for me but he did surprisingly well with it. From here, I'm just going to paste in the email I sent to family the day after the biopsy.

Yesterday went, probably, as smooth as possible. I could tell that God was carrying Micah (and us). There were a few very small things that came up as potential problems but never were. From the moment we stepped into the operating room I have been focusing on these two verses. "I will restore you to health and heal all of your wounds" Jeremiah 30:17 and "The Lord is my strength and shield. I trust in Him with all of my heart." Psalm 28:7

Micah did well all morning up until about an hour before the procedure when we went into the pre-op room. He just kind of lost it, he was hungry and tired and there were people in and out and talking and he was done. They still needed to do a quick ultrasound before the procedure so they did it as fast as possible while he just cried. We were able to walk him back to the operating room and hold his hands while they gave him the mask for anesthesia. Once he was asleep we got to give him a kiss and then we went to the waiting room. The doctor came out about 20 minutes later and told us he did great and was in recovery. We had to wait a little longer before we were taken back to see him. It was pretty sad to see him all groggy and unhappy and with tons of wires coming off of him. But the nurse had me sit in a rocker and hold him. I got him to calm down take a nap before we were moved up to a hospital room. He did have an IV, I was curious how they would pull that off. They took a washcloth, folded it in half, wrapped it around his whole arm and then taped it on tight. It looked like he had a cast on with his little fingers sticking out. Once we got in the room Micah was doing much better. He guzzled a whole cup of juice and wanted more. He was very mellow all day and we just took turns holding him in the recliner. He took a small nap. Once he was allowed to eat, he did great eating and continued to drink a ton. He had his blood checked three times through a finger prick where they collected quite a bit of blood. He also had his blood sugar levels checked a few times. So he had about 5 band aids on his extremities. But he handled the pricks pretty well, probably because he was on pain medication from the procedure. After we got the results from the last blood check I went home to be with Ben and Tim stayed the night with Micah. Micah fell asleep shortly after I left and Tim was able to put him in the crib where he slept all night. Tim said he was able to sleep. By morning Micah seems to be back to normal. He had a good breakfast. I was able to be on speaker phone with the nurse and the doctor this morning to hear discharge instructions. So he is technically discharged but is not home yet because Tim is waiting to get a glucose meter.

Our next step is, for the next few days, we need to check Micah's blood sugar levels before every meal, especially when he first wakes up in the morning. I'm not sure what a normal range is, but if it is ever below 50 I am to call the liver specialist. She will be calling us this week with initial results and to talk about the blood sugar levels. Depending on the results she gets from the biopsy she might need to send some out to another lab for further testing for a diagnosis. As of right now we are not changing anything about his diet but depending on how things go we are looking at changing his feeding schedule and possibly diet. Which all in all is not bad!

  

Leaving Micah at the hospital with Tim was super hard, but being about 11 weeks pregnant, I needed to sleep in my bed and I think Micah slept better with Tim there too. That day after, we got both the boys in bed and sat down on the couch and I just needed to shed a few tears. It was an emotional couple days and I held it together the whole time. I needed to let it out and breath, we had survived the biopsy day. We were blessed that some friends had dropped off dinner for us. I did not realize how draining and tiring it would be and we would probably not have had a good dinner if it weren't for them.

We continued to check Micah's blood sugar level in the mornings and left for NY 4 days later. The doctor called while we were in NY and confirmed that Micah does have Glycogen Storage Disease and said that she was now referring us to a metabolic specialist and dietitian. Since we were in NY we had to put off our appointment with them until December.