To pick up where I left off…
Katie had just spent almost 2 weeks in the PICU and another month on a regular floor of our children’s hospital. We knew that the Meningitis was completely gone now and we needed to get to the bigger, longer term picture.
Until this point I had held it together pretty well considering, but along comes BIG SCARY GO HOME DISCUSSION. I know it sounds crazy...”don’t you want to go home?” you’re saying. NO! At that exact point all I wanted to do was to send a truck home to pick up our things and move into the boiler room, cafeteria, MRI suite, anywhere IN the hospital. I wanted to be close to her doctors, close to resuscitation machines, close to respiratory therapists, close to the ER! Heck, I was ready to move to the houses across the street and spend my days loitering by the ER doors with Katie in case something happened.
She still had an NG feeding tube and was using it for at least some of her feeds. BUT the issue that scared me the most was the high likelihood of seizures. Chris and I both had to attend a seizure response training session at the hospital about 1 week before Katie came home, complete with videos of children having every kind of seizure possible. And let me tell you...NOT fun! It’s bad enough anticipating a scary Grand Mal (which they renamed tonic-clonic BTW) but we now knew that even small things like a head drop or staring off for a few seconds could be seizure activity. We couldn’t even tell some of the kids in the video were having one. We were told repeatedly that Katie was at an extremely high risk for a seizure disorder. It could be anything from Infantile Spasms (catastrophic) to regular seizures (I don’t know what’s regular about seizures) to “they really have NO idea what it is” seizures. I saw a woman have one, when I was 14, in a line at a drug store once and it scared me half to death. We also learned that children can stop breathing or have permanent brain damage from a seizure. They are not always benign.
So, I completely freaked out! We were staying in a hotel across the street from the hospital to be closer (we lived about 15 minutes away) to Katie. There was about a day and a half where I couldn’t even get out of bed for the first time in my life. I pulled the drapes closed and stayed in bed crying for what felt like a very long time. I told Chris that I couldn’t stay home with Katie by myself. I was too scared that she was going to die in front of me. It was not fun. We were both so worried, so sleep deprived, so shocked at our “new” life that we didn’t know what to do. My parents gave me the option that I needed to hear, at least for a little while. They would find a live-in nanny and I wouldn’t have to be alone if something happened. I felt a tremendous sense of relief. Looking back, I think I just needed some more time to adjust to things. We never did get a nanny, I changed my mind once we were home. (I always knew I would put my career on hold and stay home if we had kids. We are very blessed to have this luxury!)
I believe it was a Tuesday and they told us that she would go home on Thursday. She still had a Broviac line which would have to be surgically removed as well as some final weaning from narcotics. We also had to learn how to give her injections of blood thinner medication to treat a clot in her jugular vein left over from a central line she had in the PICU.
By the time Thursday morning rolled around (and I was kinda over my freak out) we were slated to leave, but none of her medical equipment had arrived. We needed a feeding pump, IV pole, NG tubes and lots of meds, syringes, etc.
They ended up successfully removing her Broviac on Thursday morning and delivering the supplies that afternoon. Chris took on the challenge of learning how to give her twice daily injections. A very nice nurse came to Katie’s room with one of those squishy promotional stress balls to practice on. Another daunting new task! Chris did great and gave Katie one shot while we were still in the hospital. Her poor little thighs and arms were so bruised from the shots. And unavoidable side effect of blood thinners.
They gave us the option of staying one more night because it all happened so late, but once we had a taste of going home we realized that it was all we wanted to do. They gave her, her last dose of the Morphine and off we went with 2 cars of equipment and Katie.
WOW! It was exactly what we all needed!
Katie started taking ALL of her feeds by bottle and after a week we removed the NG tube for good. I was a VERY happy mom that day! That tube was a nightmare. I was so worried that I’d accidentally yank it out. We still have some major eating and reflux issues to work out, but I’ll tell you about that next time.
She handled the injections pretty well. Chris would give them to her while I held her arm/leg and tried to distract her with crazy dancing and flying toys.
We had to keep her on a powerful anti-seizure medication for 6 months and then we weaned her off very slowly. NO seizures to date!! NONE!
She started giggling exactly 5 days after she got home, which was music to our ears. She batted at toys when I put her on her baby mats. Tummy time took a little more adjustment, but over time she came to love it. She has consistently done something new just about every day since coming home.
I received a comment on my blog a while ago asking... ”I was just wondering if in one of your posts you could tell us at this point what is "wrong" with Katie as far as her possible brain damage from the Meningitis.”
I wanted to take a minute to answer the question for her. Right now I am thrilled beyond belief to say that there is nothing “wrong” with Katie! After Katie had her MRI, while still on life support in the PICU, we were called into conference with her Neurologists. They read the MRI and gave us the devastating news that Katie has severe, diffuse damage to her brain caused by massive bleeding and stokes from the Meningitis. There are very few areas of her brain that were untouched. We were told that she would be profoundly mentally and physically disabled and likely deaf and blind. Since that time, Katie had a CAT Scan which confirmed the original prognosis. THAT’S the scientific side of things. The REALITY is that Katie can see, hear and is doing amazingly well. As I mentioned she is a little behind in walking and speech, but we have NOTHING to complain about! Katie may still have some major challenges in new areas as she develops, but we are just overwhelmingly thankful and astonished beyond our wildest dreams. In every follow-up appointment we have with a hospital doctor (who saw her in the PICU) I am told…
“we can’t explain how she is doing any of the things she is doing today” and
“Katie is a miracle”
In all of their 50 years of combined experience both of our Neurologists have told me that they have never seen a child do as well as Katie after such a devastating brain injury.
If that’s not a miracle I don’t know what is. We had and have so many people praying for Katie. It is SO amazing to be able to share her story with everyone here!
Thank you so much for your sweet comments, they make my day, and for your many, many prayers.
Here are a couple photos from her first two weeks back at home.
