To the Floor and Preparing to go Home

Happy to be down on the floor

With Lillian on the floor, most of our hospital stay was behind us. Now we just had a short period on the floor to make sure she was stable and to get us used to caring for her for the first time and getting used to her special needs. Lillian though, was clearly ready to be on her way out, as she was more alert every day.

Since she was finally stable enough to move, it was time to do the MRI that we had postponed so long to check on her brain bleeding. I was really viewing this test with apprehension, as the brain bleeding to me was almost a bigger issue than Lillian's heart. Her heart issue was serious yes, but it can be fixed and managed with relative ease. A mental issue though would be much harder to deal with, likely requiring a life time of special mental care. This MRI would tell us if Lillian would have to deal with that on top of her heart condition. A lesser worry too was that for the MRI to be useful, the patient has to be completely still for the procedure, a state that is almost impossible to get with young children. Thus, having an MRI involves being put on some sedative, and most infants are intubated on sedatives as a precaution. Since Lillian took a long time to come off the ventilator the first time, we were hoping to avoid the same thing again as a consequence of something as routine as an MRI.

Luckily for us, the radiologists happened to come at a time (on August 19th) when Lillian was dead asleep and completely still. They were able to do the procedure without having to intubate or give any sedative. The results from the MRI were also great, the bleeding had gone down and likely would not be an issue in the future. In all, exactly the results we were looking for.

 The next day on the 20th, we had to remove Lillian's PIV line due to that clogging as well. We were hoping to remove the PICC line first as that goes in farther, but we had to leave it in for a little while longer. In the mean time, we were focusing on teaching her how to eat, a reflex we had suppressed since birth. Lillian struggled with this at first, she simply wasn't used to having anything in her mouth. She continued to struggle on the 21st, but was enjoying the visitors that she had.

Annabelle was thrilled to spend time with her sister

Lillian's little cousin Robert also came to visit, but she was tired at this point.

On August 22nd, we finally took out all of the medicine and continuous drips, leaving the line in a couple more days just to be safe.  But seeing the pump rack finally leaving the room for good was a relieving sight.

Gone for good!

Lillian also had her great grandma and great aunt come to visit.

Since Lillian had done fine without any of the IV medications, it was finally time to take out the PICC line on the 23rd, leaving her feeding tube as the only tube in her, which doesn't even count since it goes through her nose. She had gone from 19 tubes (yes, I am counting all IV pump lines individually even though they consolidated before entering) to zero tubes, a massive milestone, even if it is only a mental one.

White patch is the last reminder of the lines.

We were starting to near the end of our journey at the hospital! There were only a few major milestones left, including removing Lillian's stitches and getting her back to oral feeding. The later is important, but is also something that we could do at home, so only the stitches remained. Kathryn and I thought it looked like it might need a little more time to heal, so we were surprised to hear that they were ready to be removed on the 24th, and removed they were.

Now all that was left was to make absolutely sure she was ready to go home by doing a car seat test and teach us how to place a feeding tube. We did both on the 24th. Lillian did great in her car seat test, and I did surprisingly well in my first time placing a feeding tube. If you ever find yourself in a position where you have to do this, it really isn't as bad as you would expect.

During the time since she had been on the floor, we had been trying to wean Lillian off of Morphine, which was proving difficult given that she had been on it for over half her life for this point. The day of the 25th was especially difficult, as Lillian was having a hard time with the wean and was extremely fussy. The 25th was also the first day she got to wear clothes, so you can imagine that this combination led to a less than happy child.

Finally, the time to go home had come! Lillian was stable, off all IV medicines, repaired, closed and stitched up and clothed. It was time to go home just after 4:00 PM on August 25th.