Two Reports

Report #1 Nuerosurgeon follow up last week - Dr Alden thought Cameron looked good and we couldn't agree more. Normally we have an ultrasound before all appts but for some reason not this one, so we had to do that after our appt which turned into a 3 hour ordeal. But the good news is that Dr Alden says the shunt is not "overdraining" and the ventricles look like they might be even a little bit smaller. So we are not going to change the setting on his shunt right now - which by the way they do with magnets. Amazing. When we asked if we need to be concerned about Cameron being around magnets the Dr suggested we just not let him play with a box of magnets - it's nice when they can break the tension with a good sense of humor. So anyone out there who was thinking a box of magnets would make a great gift - think again :). So although shunt is not the best looking device, it's working and that is what matters most. We continue to cross our fingers for no malfunctions or infections.

Report #2 - Fashion Police: (Cameron's perspective)
So the number of comments my parents received relative to my outfit in the blue chair - specifically the jean shorts - really got us talking. First of all, my parents did not dress me in some acid wash denim cut offs people - take it easy!! These jean shorts they put me in were rather adorable if you ask me. There was a cute little dog and firetruck on them, maybe you all didn't notice it was an outfit that matched my adorable top with the same dog and firetruck. I'll admit there are some questionable outfits mom and dad wear at times, but not me!!

In other news we are still waiting to get our first physical therapy appointment set, and Mom is really hoping it's soon. We head off to the pediatrician again next week and are hoping for a good weight gain report. Overall it's been a good week, as this was our first week ever since birth that we have not had to head off to children's or the pediatrician for a dr appt! What a milestone. Cameron is really chatting alot and he smiles a lot, one thing mom has noticed is that he always get very smiley right before a big spit up - which is a nice warning for mom!

Have a safe and enjoyable holiday weekend!
xoxo mom and dad

Another busy week

Cameron was busy once he got home from the hospital - a visit to the Pediatrician where he received another shot and apparently our little piglet is not piggy enough! He is not gaining the weight they'd like to see. For now we are chalking it up to post surgery, and we'll see where he is after labor day. He is 9lbs 8oz now - earlier in the week he was 9lbs 12oz - but I think we'd all lose weight if someone let us starve all day!
We met with the Early Intervention developmental assessment group on Friday in our home. They are going to get Cameron started on some Physical Therapy in the next 2-3 weeks - I am hoping sooner rather than later. He did well on parts of the assessment but does need some work in areas.
In other news Cameron has finally graduated from sleeping on Mom's chest at night to his crib - this was a very happy moment for all involved!!! Now let's just hope it stays that way!
xoxo Mom and Dad

The Longest Day...to coming back home

Cameron is back where he belongs - Home! After a two night stay at the hospital we are so happy to have him back. Friday was the worst day ever, with no food for Cameron all day and no clear answer on when we would get him into surgery - just lots of waiting. All we knew was there was a child that needed surgery before Cameron, so you really couldn't get too upset as it meant that someone else's child needed the Dr's more than we did.
We watched them take Cameron into surgery at 9:30pm on Friday and met back up with him in recovery at midnight, it was a relief to see our sweet little boy, but he was not looking good. Pale as a ghost and coming off of the anesthesia, tears overtook us. Seeing the shunt in place was something I could never have prepared myself for. The device is embedded under his scalp and the tubing runs all the way down to his belly. With time we have gotten more used to it, and he will grow into it, and eventually his hair will cover it up. But the initial shock was very hard; our hearts were breaking for Cameron and hoping he was not in too much pain. After a CT scan we got him up to his room at about 2am, Dad headed home and Mom slept at Cameron's bedside. Cameron was in the constant care Neurosurgery ward – along with 6 other post-op children.
We later learned the reason our surgery was pushed back - a little boy, Zach, who also has Hydrocephalus needed a shunt revision following a seizure earlier that day. I had to wonder was this our future. We met him and his mother who could not have been a sweeter family. We met another child at Children’s, Max, who was there for the 101.9 Mix 36 Hour Radiothon to support Children’s. He is 12 and has only had one revision is whole life. So you just don’t know what will happen. We can only hope for the best. Max was so sweet and came up to meet Cameron, his advice was to not let him play football. He really was just so cute.
I have to say being at Children’s during the radiothon just broke our hearts; we would occasionally go down to the lobby for a break and hear the stories of many children, some who did not make it and others who still struggle. In fact, if you tuned in really early on Saturday morning you might have caught mom on the radio telling Cameron’s story.
All in all this was by far the most difficult weekend for us, I believe in many ways we were blissfully ignorant to Cameron’s health struggles and now that you can see something is wrong with him he brings it to life I guess. There are times I have wondered if we will make it through all of this, but Cameron just started to smile at us late last week and that alone will keep us going for years to come.
I just want to say to everyone that you can’t take life for granted, treasure every moment you have with your family and friends and most of all if you have children hold them tight, tell them you love them daily, you are blessed to have healthy children – there were too many sad stories this weekend and no one should have to deal with such struggles, much less children.

Our next step is to see Dr. Alden next week for a follow up. We are aware of all the malfunction and infection signs to watch out for and are trying to keep it all in check. Thanks to all of you who sent us emails, text messages and voicemails it is so important during this time of crisis to hear from the people who love us.

Xoxo mom and dad

Surgery is scheduled

Cameron will go in for surgery at 1pm tonorrow. He can't eat after 8am tomorrow morning and will go to Children's at 11am for pre-op testing. This no eating thing should make an already difficult moning far worse. We'll update again after surgery. thanks to all for the prayers. xo

Bad News Bears...

As if last week was not hard enough we have just returned from the Neurosurgeon and Cameron will require another brain surgery. The ventricles continue to grow and fluid continues to build up. This is not at all what we were expecting as his fontanel seemed ok, nor wanted to hear. We always knew this was a possibility but I guess were hoping we'd get lucky.
Surgery will either be this Friday the 11th or next Thursday. Dr. Alden needs to consult with Dr. Reynolds regarding the diaphragm as that could pose an issue during surgery.
Depending on how things look when they go in they may try the same procedure again, but more than likley he will get a shunt. With the shunt the fluid drains into the abdomen , thus the need for consult with Dr. Reynolds as this fluid could also push "things" up in the diaphragm area which would exacerbate that issue. I have a feeling Cameron will ultimately end up with a shunt - which is just not what we want at all. We know that this his how most cases of Hydrocephalus are treated, but with the man made object being placed in his head it increases the risk for infection and could mean multiple surgeries in the future to repair malfunctions. You hear stories about children who have no shunt revisions and those that have 20 in a month. So it's such an crap shoot.
As we were in the waiting area prior to the ultrasound and young girl probably 7 years old was oohing and ahhing over Cameron and how cute and little he was, she was just in awe of him. He then began to cry so I had to take him out of his seat and when I picked him up and held him she said "his head is so big"..."I can't believe you can see all the veins in his head" ...her mother quickly said "you were like that too"... to make me feel better and ushered her away. In many ways I felt I had gotten the diagnosis that things were not good right then and there. Children are truly the most honest and perceptive people sometimes. She's right, he does have a big head - in fact the size of a 4month old and gestationally he's not even 4 weeks yet. And the veins being more prominent is quite commonem in children with Hydro.

So we will wait to hear tomorrow about the surgery date. One good note we did meet with the Dr from Kidney Diseases yesterday and he does have some mild swelling but not something they are overly concerned about. So long as he does not get an infection we will see them again at 1 year of age. Obviously when he spikes a fever we need to be extra cautious and he can't play contact sports but other than that it was an optimistic visit.
xoxo mom and dad

Cameron survives more testing

My heart breaks every time we go to children's for so many reasons, between the other patients going in for bone scans, chemo and the like you just want to cry. And then I have to watch them torture my sweet little boy. Tuesday was a Chest X Ray where they put Cameron in a torture like chair device, his hands strapped up behind him and his head basically in a noose. I was allowed to stay with him during the X Ray which was good and after some intial screams he settled down and almost fell asleep - I couldn't believe it. We then met with Dr. Reynolds, the pediatric surgeon, to discuss the X Ray and next steps. As she suspected the diaphragm continues to rise and therefore will require surgery to suture the diaphragm down. If it is not repaired it will impeded the development of his right lung, which of course is not good. At this point it does not appear to be bothering Cameron, and given the many other issues he is battling the Dr would rather wait till it shows itself to be an issue for him. The later in life we do this surgery the better for many reasons - it will reduce the time he would be on breathing machine, time spent in the hospital following surgery and allow us to get some of the other issues under control. Once Cameron stops thriving (eating and gaining weight) it will be a sign that this elevation of the diaphragm is causing him an issue - increased coughing, wheezing and difficulty breathing are also signs. So we are keeping a close watch on Cameron - right now he continues to eat well and is up to 9lbs. He does experience the occassional coughing episodes so we will track them.
While we were visiting with Dr. Reynolds she mentioned his fontanel seemed to be bulging a bit, I was suprised as I thought it was still feeling ok - after a moment of feeling like a horrible mother for not noticing this she did mention that she is not the expert. Couple this with a projectile vomiting incident the night before and Mom and Dad were very worried. So she paged Dr. Alden's (the neurosurgeon)nurse, she later came down to meet with us and checked Cameron out giving him the ok - thank god! We meet with Dr. Alden again next week so we can do a full evaluation, including Ultrasound and an MRI.
So that was Tuesday's 4 hour visit to Children's! On Wednesday I packed little Cameron back up for another round of tests - little did we both know that Tuesday would be a breeze compared to Wednesday. We headed over to radiology again, waited for our number to be called. We went up to Nuclear Imagaing for a renalgram - I had no idea what all was involved with this test - the IV team was called to get his IV going, I can't imagine all day going around the hospital and putting IV's in, but this is what they do! So there we were Cameron on this awful cold hard machine screaming his head off as they got the IV in and then it was followed by putting a catheter in which of course was awful to watch and I am sure even worse to experience. So after about an hour of prep work they were ready for the test. This involded takeing a picture every 20 seconds for 20 minutes to watch how the liquid flows through his Kidney while Cameron screamed...fun stuff.
It appeared to be functioning normally and then looked as though it was refluxing further into the test - which is odd as we were told it did not reflux when he had the VCUG in the hospital. So we'll need to get some more details on this situation. And then he needed one last picture which was quite a challenge as he has to lay completely straight and on his back (which Cameron does not like,he's more of a sideways kind of guy!) We got that done and waited and waited for the ok to leave - finally we got it, they removed the IV and Cath (almost worse coming out!) and headed home after 5 hours. I felt so bad for Cameron, he was so tired out he barely even ate when we got home, so we took a nap together and he seemed to be feeling a little better after that.
It's been a rough week to say the least. We will hold out hope for good news next week when we meet with the the Kidney Diseases doctor for the results of the testing and Dr Alden for the status of Cameron's head.
One good thing - at least it's cooling off for a few days around here!
xoxo mom and dad