Okay, so Katie had just been released from the PICU after 10 days, and moved to a regular floor. A regular floor FULL of RSV babies. Ahhh! This is when my obsessive compulsive disorder love affair with Purell kicked in and continues today.
The day after we left the ICU Katie started to show some signs of “waking up”. She started to give us some little cries when the nurses came to do vitals. After the first time she cried (and I cried) her nurse gave a little sigh of relief. When I asked her what that was all about, she told us that when a baby has a lot of brain damage they often have a very high pitched cry/squeal. Katie was definitely a tenor, if not a bass...think Aretha Franklin after seeing pictures from the inauguration. (Just the hat people…don’t be so mean)
Anyway, shortly after we settled into our new room, the little guy in the other bed started to cry. It was one of the saddest things I have ever heard. I would never have thought twice about it, had our nurse not told us about this phenomenon. Needless to say his cry was extremely high pitched and my heart went out to him and his family.
It’s hard being in the hospital with your baby for more than the obvious reasons. It is very difficult seeing all of the other babies who are sick. Thankfully, the majority of the kids on the regular floor would be just fine and had short-lived or minor issues.
It is also almost impossible hold back thoughts like “at least my baby is not THAT bad” or ”wow, see it could be worse” when looking at a child who is more severely ill than yours. In a way (sounds awful, I know) it made me feel a little bit better about Katie’s situation. I felt really bad thinking this way, I would NEVER, ever wish any baby to be sick, but they just happened when I was grasping for the smallest amount of hope.
Another thing that brought out not-nice-Kristine was seeing babies who were in the hospital for minor things. They would pop in for a day or two with ear infections, bladder infections, just for observation, etc. and then their parents would come in with big smiles and millions of balloons to pack them up to go home. They were always very loud and would say things like “I just knew it wasn’t serious”, or “I knew she’d be fine”. I felt like going over and popping all their balloons with a big syringe (hello metaphor) telling them...”no, NO, it CAN all change in a few seconds...don’t assume they’re fine”, “I thought it would all be fine too…and now look. LOOK what happened to my baby!” I noticed that a lot of the parents in the ward with seriously sick kids would look away or paste on one of those all-teeth-clenched smiles when the “happy parents” were around. It was hard.
During the first few days in our new room Katie started to become a little more alert. She started opening her eyes for periods of time and crying at all the poking and prodding. Her eyes were no longer deviating but she was still not really focusing on anything. Just kind of staring and sleepy looking. On the second day, my hubby was rocking her and noticed that her hand was opening and closing rhythmically. He called for the doctor, who confirmed that it was another seizure. They, once again, treated her with
Ativan and it stopped after a minute or so. That was on January 23rd, 2007 and she has not had a seizure since!!
We know that seizures are extremely common for anyone with brain trauma and consider Katie very, very blessed to be seizure free right now. We have learned that she is still at a high risk for seizures, particularly around the ages of 2, 10 and again during puberty. These are the “danger zones” for the onset of new seizures. Her brain will begin using new areas, which were previously dormant, during these periods of growth. Brain activity in new areas is always a touchy time for children with brain injuries.
Now that Katie was no longer critical, we gave up the little room by the PICU where we had been sleeping every night. My Dad made all the arrangements for us to move to a little hotel on the hospital grounds. It is similar to Ronald Macdonald House, but sponsored by another group.
I was so grateful to be so close to the hospital (even though a housekeeper accidently threw out all my toiletries and medication one day, forcing me to climb in a dumpster in the parking lot. At 1:00am. In -25 degree weather. Celsius.). It’s funny now.
We would stay with Katie for the mornings and then our awesome family and friends would take shifts for the afternoon, giving us a break to run home, shower, pick-up clothes, etc. We’d return to the hospital for the evening and often stay until midnight or so. We were exhausted. I was still having some complications from the c-section (for a few days we thought that I may need another surgery) and it was hard to be on my feet so much. But, we loved being with Katie. We would end up doing this for another a month.
Most of our days were spent just loving on Katie and starting to slowly take care of her regular baby needs again. Changing diapers and giving her little sponge baths.
The first week in the ward was a long one. There was very little change in her awareness, but towards the end it started to change.
On the 5th or 6th day Katie had her first visit with the head Occupational Therapist for a feeding study. Unfortunately this was not a good experience on all levels. She treated Katie like a number, held her in a most uncomfortable positions and talked to us with disdain. She tried to give Katie her first bottle in 2 weeks. She tried for about 2-3 minutes and when Katie couldn’t latch, she shook her head in frustration and left after telling us that she would be back in a day or so. When we saw her again, it was 4 days later with the same results.
I was so sad and disappointed. She gave me the impression that she thought Katie couldn’t eat on her own and never would. I asked her to try another feeding position, one that Katie liked before she got sick, and she told me that it had to be done “her way”. She really was a nasty person, telling us that her profession was “far more complex” than most people thought and that “there is an important process”. I have no patience when people, especially important medical people for babies, can’t think out of the box, AT ALL. She really should change careers. Anyway, I ended up questioning the lack of free thinking and she assigned another OT. It was the best thing she could have done. Her new OT was kind, patient and resourceful. She tried a few new things and in the first visit had Katie latching lightly and taking 15cc’s of formula. We could see a little light at the end of the tunnel. She could eat. Maybe not much yet, but she could EAT!
To be continued…
Katie has some pretty awesome people praying for the miracles to continue, both family, friends and amazing strangers.
We feel incredibly lucky to have so many people following Katie's journey. If you're new, I always check out your profile and blogs and have really enjoyed getting to know some of you well.
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