I have been slacking on the Blog writing! Here is part V of Katie's story. Finally!
So, at this point in Katie’s battle for her life, we knew 2 things. We knew (fairly certain) that she would survive the Meningitis AND we knew that she had sustained a fairly serious injury to her brain. We were trying to come to terms with what this might mean for Katie over the course of her life.
Chris and I were both devastated at this news. However, I was just so overwhelmingly happy that it looked like Katie would make it and come out of this ALIVE, that I was able to accept the “disabilities” prognoses. Chris was very angry that any of Katie’s potential had been stolen away from her. For those of you who don’t know him personally, Chris is a do’er. I knew that he would do whatever he needed to do in whatever lay ahead, but it was one of the most difficult times for him. From reading many other blogs by parents of sick kiddies, I have learned that this initial response is pretty common for Dads and my reaction was typical for moms. I think this serves a purpose in these circumstances. Chris was able to be the stronger one during Katie’s critical battle and I was able to do the same once we were over that hump and were facing longer term needs. I think it was also because I was prepared for the possibility. Mostly from reading about other babies who went through the same illness and from that haunting article in the hallway. Anyway, I did well and stayed pretty strong until we were faced with going home from the hospital and I freaked out…but that’s for later in the story.
The next week was still spent in the PICU. They had to do several things before Katie was moved to a regular floor.
They needed to make sure that her seizures were under control. In the end she had about 5-6 small seizures, two of which happened once we were out of ICU.
They also needed to wean her off of the vent. I was worried, as the doctors informed us that they sometimes need to re-intubate immediately. They did breathing trials and slowly weaned the vent settings down. Katie started breathe a little bit on her own which was so exciting. She continued to improve and they were ready to extubate. I asked what they did exactly because we were not allowed in the room during extubation. I was told that a number of doctors and the respiratory tech are in the room along with a defibrillator, which was scary. Katie was successfully extubated and was only on a nasal cannula (your standard 2 pronged tube) for concentrated oxygen. She had a few episodes where her saturations dropped after the oxygen levels were lowered for a breathing trial, but she recovered quickly once the levels were turned back up. They weaned her a bit more slowly and after a few days, she was off altogether.
At the same time they were starting to wean her other meds. Katie gradually stopped receiving some of the heavy duty seizure medications and was only left taking Phenobarbitol.
They tried to discontinue her Morphine WAY too quickly (over 24 hours) that her vitals were becoming unstable. They told me afterwards that they pretty much knew that it was too fast and that babies very quickly develop an addiction to the drug. I asked them “why on earth did you do it that fast then” and got a “well we thought we’d just try it” response. I wasn’t happy. Our favorite nurse, Suzanne, told the doctors about Katie’s difficulties and insisted that they slow it down. Suzanne was fantastic and always advocated for Katie. In the end Katie had an especially hard time ditching her drug habit and it wasn’t until the day before we went home, one month later, that she had her last dose of Clonidine (a drug that reduces symptoms from morphine withdrawal).
She also started to successfully shed some of the fluid that her little body was holding onto with the help of Lasix, which is a diuretic. Slowly she was starting to look like herself again, instead of the Pillsbury dough boy. Poor puffy girl.
There were at least 6 other medications that I no longer recall that were also stopped.
One ongoing issue was with her IV’s. Her tiny veins kept collapsing and the IV’s kept falling out. Her central line also fell out, which gave the nurse a bit of a scare. Because she still needed another few weeks of heavy duty IV antibiotics they had to have a good stable line to use. One doctor tried 3 times unsuccessfully to insert a PICC line. We were then told that the only option was surgery to insert a Broviac line, which involves 2 incisions and a line into the superior vena cava. We were approached by a doctor who recently came to this hospital saying that he would like to re-try the PICC insertion using a fluoroscope. I had such a bad feeling about it but we were trying to avoid surgery. He was the most arrogant doctor I have EVER met. When I asked him a few questions about the procedure he responded with a list of his credentials and a snippy childish attitude. He hated the fact that I asked him how many times he had done the procedure. Especially since his answer was twice. Needless to say, it didn’t work and Katie came back to us all bruised and poked.
She was scheduled for a Broviac insertion which went well, except for the fact that they found a blood clot in her jugular vein. This meant a new course of medication (Enoxaparin) that could only be administered by injections twice daily. Katie ended up coming home on this drug and we had to learn how to give her shots. Chris ended up giving her shots for 2 months. Okay, I gave her two, but hated it!
They kept checking her pupils several times a day because they were pretty unresponsive and one was deviating to the right. This is a sign of brain injury and it was pretty sad to hear day in and day out that they were not improving. On the 9th day in the ICU they finally got a response to light and by the 10th day her pupil was no longer deviating. It was an improvement that they rarely saw in Meningitis babies. We were thrilled!
It was day 10 in the ICU, our final day and Katie had still not really shown much awareness or response since coming out of her drug induced coma. This was very discouraging and the doctors wondered if she would forever remain like this.
We found out that Katie was being moved to the regular floor. We were both happy and scared. Happy that she was no longer considered critical, but afraid to let go of the one-to-one nursing that we had in the ICU. But, off we went to the floor. It was nice to be in a quieter environment. There was much less tension than in the ICU, obviously, which was also a welcome change. We were put into a room with a baby boy who also had “brain issues”, however his were from a malformation during gestation. We had one nurse for the two babies, which really helped to put us at ease. We ended up becoming friends with the other baby’s family and rode a rollercoaster with them for the next month.
Thanks so much for reading about Katie and for all your support in her journey!
