We finally had a good couple milestones under our belts! Lillian's swelling had gone down, she was off ECMO, and her chest was finally closed. But we weren't ready to leave the CICU yet, she still was on a ventilator, as well as medicines like Milrinone that can only be given in the CICU.
Our next step after closing her chest was to trial taking her off Lasix so we could remove the clogged PICC line in her arm before it caused any significant damage to her blood vessels. Lillian was also suffering from intermittent arrhythmia, a relatively minor issue, but just another thing that we had to deal with. Her medical team suspected that it might be an electrolyte issue, so we began labs on that to see. In the mean time, Lillian was more and more awake, in part realizing what was going on around her. She was on a ton of pain killers and intubated, but she was still awake enough to scream, but couldn't do it out loud because of the ventilator. Seeing her silent screaming was more difficult than seeing her immediately after surgery, but an extra dose of Morphine helped her feel better quickly.
By midday on the 12th, Lillian's arrhythmia was gone, but was back by midnight. One of the nurses suggested that the cause might be one of the central PICC lines being in too far and actually sticking into the walls of her ventricle, irritating it, which would certainly cause arrhythmia. My impression of PICC lines so far is that they go to the heart, not actually in it, but this line may have been different. On top of the central line possibly being in to far, the arm line was now completely blocked and leaking, so it needed to be pulled. Ultimately, the planned MRI on the 13th to reassess her brain bleeding had to be postponed due to the arrhythmia and low blood pressure; and we instead went to look at getting a new line in to replace the clogged PICC line. Here is where there can be a major difference, as the first nurse could not get one in in 30 minutes, but another one got it in in less than 5 minutes.
|Only 15 tubes left!|
An added benefit of removing the clotted line was that we could also remove her central drainage tube, which you can see gone with the white bandage above. She still had the side drainage tube for the pneumothorax, but the chest one was the main drainage tube, meaning that most of her chest bleeding had gone down. We could also restart the Lasix through the new line and lower 2 of the medicines keeping her in the CICU. And the best news of the day (still the 13th for the record) was that her fevers were down, indicating that she likely either did not have an infection or had already fought it off.
On the 14th, the cultures confirmed that there really was not an infection, so the fever and white blood cell counts were likely just an immune response to the procedures they were doing after the surgery. We were revealed to find that out as we had been fearing a bad infection. We were also able to turn down her Dopamine and the ventilator, ultimately putting her on pressure support (to keep her lungs from collapsing, but not actually breathing for her) with the latter early on the 15th. This went well, as the trial off on the 15th went well enough for us to extubate her and take her off the ventilator.
On the 16th, Lillian's recovery was really becoming apparent; not only did we take out the last drainage tube, but we were able to turn down the Milrinone again and hold her at long last. This meant that we could move to a less intense section of the ICU, and was also the day that I returned to work. Kathryn had the chance that day to take what is still one of my favorite pictures of Lillian:
We also turned off the Milrinone that night, which she tolerated well. This was the last thing keeping us in the ICU, so we were now able to go to the floor when there were spots available. Since there weren't though, they left in her arterial line, as that allowed us to continuously monitor her blood pressure. Even though this posed a slightly higher risk of infection, we were alright with leaving it in considering how recent the Milrinone shutoff was. We also took her from 8 IV pumps to 3, containing only flushes and foods (lipids/TPN). With this switch, all medicines were now oral instead of over IV pumps.
Alas, our move to the floor on the 18th appeared to not be happening again. We did decide to take out the arterial line at this point, which was dramatic as something wasn't properly closed before removing it and blood began shooting everywhere until the nurse was able to clamp the line. With it out successfully, we also started her on Captopril, a drug which lowers blood pressure to help her heart be more efficient; and doubled her food intake. We also finally had a bed open up on the floor, finally taking us out of the ICU around 9 on August 18th. We had been there since July 23rd. Here's a last little collection of pictures from the CICU.
Our time in the ICU was very stressful, but it was made so much easier by the never ending support of tons of friends and family members. We especially want to single out the staff at Children's NICU and CICU, who have been nothing short of wonderful, giving us hope and pep talks when we needed it (Julie specifically), always ready to sit and answer all of my stupid questions, and doing a phenomenal job of caring, treating, and fixing Lillian. We would not have survived without you!