In His Hands: First days in CICU (Feb 4-7)

Tuesday, February 4, 2014 - post surgery

Beau was very sedated as he came out of surgery and will be for the coming 24+ hours. He is on many medications for heart function, sedation, and pain relief. Andrew and I went home in the evening to rest and catch up on some sleep after an exhausting day.

When I called for an update at 10:30 that evening, I was informed Beau had a few drops in his blood pressure. They began to adjust his medications accordingly - off some and on others. They did an echo which showed there was less blood on the left side of the heart. The right side was not squeezing and showed the blood backing up a bit in the right ventricle. They started to give him Nitric oxide through his nasal cannula to get blood moving through the lungs and epinephrine to stimulate heart function.

Here is the set up of Beau's area in our pod.

These cute balloons for Congenital Heart Disease Awareness Month are up at the hospital!

Wednesday, February 5, 2014

I called this morning for another update at 6:30am. Overnight, Beau had two more drops in his blood pressure. His chest x-ray looked good but he seemed to be retaining extra fluid - his urine output had been lower than expected. They did some more medication adjustments. They began giving him calcium to raise blood pressure and another with a high protein content to move fluids to the vessels for elimination. They also started him on Lasix (a diuretic) to help with his fluid retention. The Lasix was not compatible with some of the other medications he was receiving so they had to put in another IV in his left arm.

Beau had an x-ray before we arrived at the hospital and the nurse showed us the photos after. It was fun to see the metal sutures in his chest holding his breast bone back together. If you look closely you can also see the chest tube, the right atrial line, and his pacing wires.

He started trying to feed for the first time at 10am with 25mL and took it awesome. That was increased to 40mL at 1pm and up to 60mL by 5pm. He spiked a little bit of a temperature today to 101 degrees but with some tylenol that went down quickly. At noon he was taken off his sedation medications but his Lasix was increased due to continued low urine output. Throughout the afternoon hours he was taken off his another medication and is now receiving pain medications intermittently or as needed.

We were at the hospital a little later today so we stuck close by the hotel for dinner tonight.

He opened his eyes for us a little bit today but still very medicated.

Thursday, February 6, 2014

I called for an update at 2:30am today and Beau's night nurse told us his stats were very stable. He took 80mL (almost 3 ounces) from a bottle at 10:30pm and 2oz at 2am. The doctors called for another diuretic because his urine output still wasn't where they wanted.

By 7am, Beau still hadn't stooled since surgery so he is now getting stool softeners to see if they help. Even the glycerine suppository last night at 8pm didn't do the trick. This is very common for kids after surgery due to all the medications and sedation.

Early today, he began getting Oxicodon and Tylenol for pain instead of the morphine. The catheter and rectal temperature probe were removed today. Doctors called for an increased dose of the Lasix as his urine output it still low. They began doing physiotherapy, "beating" on Beau's chest and back with a soft rubber "block" in hopes to loosen some of the fluid buildup. This sounds really scary but he actually really likes it and relaxes.

At 2pm they removed the bandage over Beau's chest incision. It was cool to see how clean it looks and amazing what skin glue can do!

Then they did an echo and we got to see Beau's custom made heart! It was amazing to see the four separate chambers with two pumping valves!!! I was blown away and amazed!

In late afternoon around 5pm, they removed the arterial line in his arm as it was causing some bruising and also the IV in his right leg as it was no longer flushing.

He is still bottle feeding awesome and is consistently taking 3 or 4 ounces every 4 hours. He was much more awake and looking around today than in the days prior.

He had 138mL of drainage from his chest tube today. The limits should be below 100 before the tube gets removed. A child can absorb between 50-100mL a day so the tube needs to stay in for at least another day due to these levels.

At 10pm he receives a medication by mouth to help him poop! Well he vomited this right up and then was retching for quite a while during his feed. :/ not sure what this might indicate but the nurses will watch it.

Thursday night we finally got poop! Yes, we're happy about this!!

Friday, February 7, 2014

Yesterday's echo came back looking very good. There are three small leaks in his VSD patch (between bottom two ventricles) but nothing of concern or needing additional repair. The right side of his heart still has some thickening as well. He is still on one medication to help with his heart function.

Today they are weaning him off his Nirtic Oxide over the next several hours so by the time I called at midnight, he was off of it.

They want to get the RA line out of his heart so they plan to put in a PICC line (a longer lasting type of IV that goes almost directly to the heart.) He had two or three of these during his hospital stay after birth so we're familiar with them. He will have to be sedated for this prodecure on Monday.

At 6:30pm he took 85mL of his bottle but vomited it up. :/ And again at 10:30 he received that medication again to help him poop and he vomited again. He retched for over an hour.

His chest tube had only 33mL of drainage today which was awesome! They want to keep it in a little while longer because sometimes when the RA line is taken out of the heart, it can cause some bleeding. So in case that were to happen, they want the chest tube in to help eliminate that blood. They will another x-ray on Sunday morning to check and see how things look.