Thursday, June 14, 2012

The point of understanding

There comes a point where we knew that Alvin would start to understand that he was different. Before the hydrocephalus surgeries his differences were harder to point out. He spoke a little differently and had different social interactions. His motor skills were choppy but for the most part it was hard for others, especially kids his age to tell what was going on. Most kids just thought he was funny or odd, but it never was really a factor.

Lately all that has changed. It occured to me during this hospital stay that Alvin  is starting to understand that he is different and that the hospital is now going to be part of his life.

This all started when we were in the playroom. There was a doctor's table with commonly used items such as a thermometer, pulse oxygen monitor, and stethoscope. While we were in the play room Alvin had a lot of fun showing me how these were all used telling me things about them. While I was impressed with his understanding it was also hard to take.

During the stay last week, from the first clinic visit all the way through discharge Alvin showed me that he does understand what is going on. He knows something is wrong with his head. He knows that the doctors are there to help but they do things that hurt sometimes and it can be scary.

When we got home I basically forgot about some of it until Sunday when we went to a local playground to get some much needed outside time.During our time there I noticed something very specific. When Alvin was playing with the other kids and his baseball cap was on covering his incision he was treated as normal as ever. He at one point took his hat off and went back to playing. The same kids that were just playing with him saw his head and made comments and ran away. These exact same kids started treating him like there was something wrong with him. Alvin noticed this and once again did something that I admire. He calmly came to me and said he wanted to go home so I got Elliot and we headed home.

Once again that was a kick in the gut. I see him deal with it so well, but later the emotional meltdown came out. He asked to be held and carried. He asked me to not let go.

Alvin knows that he is different now not just because of his mannerisms but because of the large "C' on his head. He knows at home he is treated just like Elliot, but for some reason the other kids don't see him the same way. They see him as odd or gross and avoid him which is so different because at home Elliot seeks him out and could care less that he acts weird or has stuff on his head.

We are struggling with this as a whole. So far the only thing we can do right now is tell him that some kids are just mean and don't understand. His family understands him and right now that's all that matters. Right now all we can do is just work through it with him. He really is handling it all very well for his age and we have been so proud of him. He is starting to better understand his conditions though which at times can be heartbreaking. We had hoped he could stay blissfully less aware for a while longer but the day has come and now all we can do is support him through it.

Thursday, June 7, 2012

The infection update

So the last time I did a full update was Tuesday night after surgery. Wednesday morning we had a visit from the surgical team and his incision looked good. It was still red and swollen which was to be expected but otherwise fine. He was still lethargic and had no want to do with taking any sips of a clear liquid. He basica;;y slept most of the morning until W and Elliot got there. I then took Elliot to go pick up my laptop charger at work and get us lunch while he stayed with Alvin. When I got back we had lunch and even though Alvin asked for a bite, when you actually offered him a drink he said no.

We found out that due to the large amount of antibiotics and fluids he was on that they were decreasing his appetite and keeping him pretty lethargic.

Then things got interesting. We met with a doctor from the infectious disease. They said nothing had started growing in the cultures but they just weren't sure it was even bacteria.So after some more questions I showed him the pictures of what it had looked like the days before we brought him into the clinic and then in the clinic when they started cleaning it off. He was actually pretty amazed that I took them and asked for them to be emailed to him so he could study what things looked like before they cleaned it out in the OR. Later that night the team from Children's as well as the doctor we spoke with from UW came back to go over things further. This is where things got interesting. They told us they now suspected that the infection was not viral but in fact fungal! They were going to talk to the neurosurgeon to get a better idea of what they saw in the operating room. The surgery team (yes now it is more than just his surgeon and her resident) stopped by later and discuss what they saw. They weren't convinced it was bacteria but said it was ultimately up to the infectious disease team to decide the final treatment plan for the antibiotics.

Luckily that night he slept well and on Thursday morning was starting to feel a little better. The nursing staff suggested turning down his IV and seeing if that would help him want to eat and drink a little. Well it certainly worked and before long he was eating jello and starting to drink very slowly. The surgeon even came in during rounds and said they could just disconnet the IV entirely since he hadn't thrown up again. The rest of the day he slowly started eating and drinking and driving us nuts as his energy returned.

Later that night he was feeling so good we even made a trip to the larger playroom to help release some of his energy. By the time we spent about an hour and a half there we also met with his infectious disease doctor and his surgeon one more time. His surgeon wants him to go home tomorrow and thinks his head looks really good. She does want the nursing staff or a nurse practicioner to give it a good saline wash just to get all the dried blood off and one last good cleaning. His infectious disease doctor believes that the infection was actually a combination of a fungal and bacterial infection. Luckily it was all superficial so just a course of oral antibiotics is probably all that we will have to do at home. Well that and a followup incision check in 2 weeks, but that was to be expected.

As long as the infectious disease stuff comes back fine we are out of here tomorrow and I'm not sure who is happier, us or Alvin!

In some ways its like starting all over. After 7 weeks we are going to be sent home with the same care instructions and he will have the same physical restrictions. While it is really frustrating at least we have it under control now. We now know that he has an issue with the super glue they use. He no longer has any hardware in his head and it will not be replaced. He is as back to normal as he was 7 weeks ago and now maybe we can avoid any more emergency trips to the hospital for at least a few more months!!

Tuesday, June 5, 2012

Back in the hopital

So first off please forgive me if this all seems like a mess. Once again we have had another urgent operation.This time it was for an infection that was starting to set into his head.

This past weekend we noticed that he had a funky smell coming from his head when you got up really close to it. It was seeping a little blood but Alvin had been acting fine and not running a fever or seeming otherwise painful so we didn't worry about it. We just did our best to keep it clean and dry and things seemed fine.

I decided to call the neurosurgery clinic on Monday just to be sure but continued to think that I was just paranoid. I received no call back Monday and figured it was because my personal cell phone doesn't get reception in the office I called back Tuesday morning and left my work cell phone number. The nurse practitioner called me back and said they wanted to go ahead and see him at 3pm today just to be sure we were ok.

I left work around 1:30 saying that things were fine and I would be back tomorrow.

When I got home W told me that the smell had gotten much worse and that part of his scab had turned green. So off to the hospital we went.

The nurse practitioner took a look at it and cleaned it the best as well as she could and remove some of the caked on glue but soon realized she needed a surgeon to look at him.

The surgeon came in and gave us 2 options. One was to use a topical antibiotic ointment and oral antibiotics and see if that worked. The other option was to take him to the OR and clean it   out and do a full debridement of the area. I told him just to do what was best. He took a couple of pictures and went to show the attending surgeon Dr. Lee who also did his ETV surgery. She came in and said she just thought it was best he go to the OR and get this taken care of once and for all.

Calls then went out to family and W arrived with Elliot. We got him back to the OR and went to grab a bite to eat. After about 45 min we were paged to go wait for him in another room and were told he was waking up. W and Elliot then had to leave and I went back to stay with him.

Waking up was really hard again. He was in a lot of pain and really disoriented. Once the pain was under control we moved to the surgical unit where he will stay.

From what his surgeon told us it smelled worse than it was. He will be kept in the hospital for a few days while they culture what was found and give him heavy doses of antibiotics. She is confident this is just a minor setback for him.

So now we wait. I'll post more as all this continues but right now we are doing well. Once we know more about what is going on I'll send out another update but for the moment we are once again glad to have Seattle Children's Hospital close by and a neurosurgical team that is so good with him.