Shunt Failure

I know, I know you're probably getting sick of me saying I don't have a computer so updating is a near impossible task lol So this might be a little on the long side. On June first, Lilah had her first shunt failure, something I was somewhat expecting since it's basically just a matter of time. Although it is something you expect, I would say you can never fully prepare yourself for it, or know what it's going to be like until it happens. In the days leading up to our ER visit, Lilah hadn't been feeling well. She had been uncharacteristically fussy. She was throwing up after every meal. The first day or so I didn't really pay much mind to it because there had been a stomach bug going around, my son had had it. I thought Lilah may have caught it. The second day she was sleepy and really had no energy. Again I thought this may be because she had a virus. I decided that if she wasn't better in the morning I would call her doc. I noticed that night that she kept waking in the middle of the night crying and hitting herself in the side of the head. That really worried me, needless to say, I didn't get much sleep that night. The next morning I was going to get my kids on the bus and off to school, then call Dr. Landes. When I got up I tried to wake Lilah, she was pretty much non responsive. She would open her eyes for about two seconds then fall back asleep. She was a very pale color also. I made a decision right there to bring her straight to the ER. The unresponsiveness was so worrisome that I was debating on calling an ambulance. My sister said we should just get her there as fast as possible. When we arrived 15 minutes later at the ER, they took her in right away. The ER doc looked her over and said, I think we're looking at a very sick girl, if it's not her shunt then she probably has some nasty virus. At this point I was in a way hoping it was her shunt. While it would require surgery, at least I knew what to expect, that it was a pretty common, simple surgery. With some unknown virus, I would have to worry about them finding what it was, and hopefully giving her the right antibiotics to treat it. I was thinking to myself if it is a virus, and is making her this ill, then it must be a real bad one, one that could potentially kill her. I know I was probably being paranoid, but when you're a mom the worst case scenario always enters your mind. They decided that they would try to get an IV in her because she was most likely dehydrated, then get her in for a MRI. That was pretty much the first priority before anything including blood work. The nurse came in and tried getting an IV going, and tried, and tried, and tried. Her veins were extremely hard to find because of the dehydration. They decided to get a certain nurse that was known for sticking impossible veins. The doc, which by the way looked like an abercrombie model, said that they would try this last time and if we couldn't get it we would hold off so we could get her MRI over and done with. The nurse was able to find a good vein, and stuck her perfectly on the first try. Now mind you, the whole time this was going on with the IV'S Lilah barely even flinched. She let out a couple little whines and that was it. They finally came in to grab her for her MRI, I went up with her, and again Lilah did not even move she slept through the whole thing. I guess in a way this was good, they were able to get a good picture in a short amount of time. We went back to the triage room, and waited for Doc Abercrombie to come in and give us the results. He came in a short time later, about 15 minutes and I knew right away what he was going to say. Her shunt had indeed failed and she would need to have emergency surgery as soon as possible. I was a little relieved that we knew what was going on and that she would be fixed up and better in no time, at least that's what the doc promised me lol He did inform me that Dr. Wilson, the neurosurgeon that Lilah sees was not available to do the surgery, but that his colleague Dr. Ecker would be performing it. Dr. Wilson is a pediatric neurosurgeon, and Dr. Ecker is not, but they reassured me he was just as qualified (good to know). I would just have to wait for them to schedule the surgery. In the meantime we waited in the ER Triage room for an opening. The whole time I was growing more and more concerned. She still was knocked out cold, nothing would wake her. Her vitals stayed strong, but I was still a nervous wreck. I just kept thinking what if the pressure causes more brain damage? She had been doing so well, and we were lucky that she was developing at a somewhat good rate considering what she had been through, and the severity of her hydrocephalus. I just was praying this wouldn't set her back. It was taking so long for them to take her in for surgery, and with each passing hour, the anxiety was becoming unbearable. Finally, after what seemed like a lifetime, Dr. Ecker, another ridiculously good looking doctor came in and said they could take her in about 7:00 pm. They would just have to get her prepped and ready for surgery. So 12 hours after we had arrived there, they finally took her in. I was able to stay with her in the surgery pre-op room until they were ready for her. They wheeled my poor baby in for the second surgery in her short little life. We were able to stay in the waiting room, which had a neat monitor that had the names of the patients and the time the surgery started and when the patient was brought into post op recovery. The wait seemed like forever when in all actuality it was around an hour and a half. I was so nervous I kept pacing back and forth. I felt like I was going to throw up. I knew it was a pretty uncomplicated surgery, but any surgery can go wrong, no matter how straight forward it is. I knew she was done before Dr. Ecker even came in because I saw that she had been admitted to post op on the monitor they provide in the waiting room. He walked in about five minutes after I had read it on the screen with a big smile on his face, so I knew everything had gone smoothly. He let us know it couldn't have been more textbook perfect, and that the reservoir was clogged so he replaced that, and also shortened the tubing a bit that was in her stomach. Dr. Ecker said that we just needed to giver a couple minutes and then we could go be with her in recovery, and they would get her into a room as soon as one became available.
A short while later, we were led by a nurse down the hall to recovery and there she was sleeping, quietly sucking her thumb. Her beautiful hair was shaved, thankfully she has so much of it that a comb over would do just fine ( : The nurse taking care of her was a tall good looking man who was the nicest guy. I swear I used to make fun of doc shows that have all these good looking doctors, saying it was unrealistic, but honestly this hospital reminded me of that. I never seen so many good looking doctors and nurses lol Anyways, Josh got to talking to him about sealcoating and paving and home improvement, (what else) lol and the time we had to wait for her to get a room went by quickly since we had such a good conversation with him. We did have to wait about two hours because they had to get a room ready for her.
When we finally were able to get in a room, I was nothing short of impressed. This part of the hospital is fairly new. Remember we live in Maine, and the Bush family owns a house in Kennebunkport, so the Barbara Bush Foundation built and funded this huge children's ward at Maine Med. It has beautiful multiple play rooms, family rooms with computers and toys. Private rooms where the kids stay, with a crib, a bed for the parents, and pull out sofa, and two flat screen tv's with DVD players. Each room has its own private bathroom with stand up shower. There were spectacular views of the city of Portland from a giant picture window in each room. Overall, a comfortable and warm environment to stay in when you're going though an uncomfortable and awful time.
The rest of the night she slept well only waking a couple times during the night. I changed her diaper and had the nurse bring in some juice in case she was thristy. Her lips and mouth seemed so dry, so one of the times she woke up I sat her up and gave her a cup of juice with a straw. I have never in my life seen someone suck up a drink so fast. It was almost comical. The next morning she was put on a jello and broth diet, but didn't eat much, although she drank enough liquids for 10 people it seemed. She was much more alert and active, she did not want to sit in the crib, she wanted to move! The pediatric doctor came in in the morning and said as long as she was doing well all morning she could go home that afternoon. They were a little concerned about her weight which was at 17 pounds, small for someone her age. I told her she was almost up to 20 pounds a week prior, but I reminded her that she had been throwing up for 2 days straight. She said when she was released I could follow up with HomeHealth Visiting Nurses and have them come in and do a weight check and incision check. I let her know that I had used Michelle from that agency in the past and would get a hold of her to see if she could come in and check her out. The doc gave me a list of discharge instruction and follow up appointments along with some prescriptions. We were discharged at around 3:30, not even 24 hours from the time of her surgery. She's a trouper! So that was our experience with her first shunt failure. Not as upsetting, nerve wracking, and stressful as I pictured it, but still hard just the same. As Dr. Ecker pointed out, at least I know what to look for. Most people who have shunt failures experience the same symptoms the next time around, I know the signs, and should be able to distinguish it from an illness next time (hopefully there isn't a next time). I have many more wonderful updates that I will be sharing in my next couple posts, I just wanted to get this up and let you know about our experience. Thanks for taking the time to read this!