Bathtime

I think bath time is Carly and Burke's favorite time of day.

They always have a blast playing in the tub!

 Burke thinks it's fun to pour water on his head.

I think it's fun to laugh at his funny faces!

 After bath I always blow dry Carly's hair and put it up so it doesn't get as matted as she sleeps.

Tonight while blow drying Carly's hair she started to doze off.

I quickly finished and started to pull her hair up. I guess I wasn't quick enough!

 So I took this opportunity to cut her finger and toe nails since she fights me every time I sit down to do this task. Then I decided that she needed her nails painted.

 And her toes!

 Then I let her peacefully sleep.

Carly the dancer

Sleep and donuts

 Someone has been a bit tired lately.

Carly loves donuts for breakfast!

Carly started dance class today. 

They had a halloween party and got to dress up.

I think she looked so cute.

She loved the class and I can't wait for her recital in June.

(please excuse the quality of pictures, I only had my cell phone)

Carly went for a little drive disguised in her purple wig!

Surgery day

I never got to finish updating yesterday. I never found the time to. Dr. Moss came to the waiting room at 6:20PM to let us know that Carly was out of surgery and that it went well. He replaced the shunt and tubing completely and placed a new programmable shunt with a siphon control valve. The shunt was partially obstructed to it was very good that we went ahead with the surgery. Before the surgery he said that if it was his granddaughter or daughter that he would not do the surgery right now. I still had a feeling that something wasn't right and we decided to go ahead with it. I asked him after if my instinct was right and he said yes, definitely. See, mom's know best!!! We went to go see her and let me just say that she looked so much better than her first surgery. She was OUT! She didn't actually wake up until almost 9 and when she did she was not happy. She was trying to pull out her tubes and IV. We got her calmed down and gave her a sippy then she threw it all up. Daddy had to go home to the other two kids so I stayed the night with her. It was pretty uneventful. She actually slept pretty well and I got a little rest. At 5AM they came and got us for CT. We went back to sleep after CT and after being cleared to leave we headed home at 3:30PM. It is so great to be back home although she has been little miss cranky pants. Its time to get back to life as usual and hope that things improve for Carly. We have been truly blessed by the amount of love and concern that our family, friends and complete strangers have shown for us and Carly. Carly's life is nothing short of a miracle and we feel blessed to be her parents. 

 Waiting patiently...

Now not so patiently..."I'm HUNGRY!!!"

 Knocked out with versed heading to surgery

Finally seeing Carly after surgery

Splotchy red face
************************************************************************

5:20PM
She was finally taken into surgery at 4:45PM, 4 hours late! Surgery got a bit backed up today. They are doing a complete shunt replacement and should be back for 2 hours.

11:20AM

We are at the hospital now waiting for Carly to go into surgery. Please keep my little girl in your prayers. I will update later on today.

Rheumatology

Carly had her rheumatology appointment today. Her doctor was very nice.

We talked about Carly's fevers and he looked at her blood work.

Based on what he knows he thinks she has Marshall's Syndrome, also called

 PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis) syndrome.

I have some more lab work that needs to be done so I'll wait for a couple of weeks after surgery and get it done.

We see her doc in 2 months and during that time I have to keep a log of all fevers.

At least this gives us an idea of what is going on. Seems right and fits her symptoms.

While we were waiting for the doctor, Carly and I had some fun taking pictures.

I sure love this cute girl!

Torture

We were back in the ER today. Carly woke up this morning crying. I went into her room and she was laying in throw up and had a fever. I felt horrible. I have a monitor in my room but I never heard her crying through the night. I've been so exhausted lately that if she was crying I didn't hear her. I hope she hadn't slept in it all night. Her temp was 103. I decided to not give her anything for it since I feel like nobody believes how high it gets. Her neurosurgeon is at Cardon Children's but because the hospital is so new that there aren't very many specialties there yet. Her pediatrician wanted us to go to PCH so we could have further testing. So off to PCH we went. By the time we got there her fever was 104.8. They checked her blood, urine, ears and chest x-ray. Everything was normal so once again we were sent home. This time instead of saying it was a viral infection they just said it was a fever of unknown cause. Well that was helpful. She see's rheumatology on friday. Hopefully they can shed some new light on what may be causing her fevers. This is just so hard. I hate taking her to the hospital and feeling like I'm torturing her. I hate watching her be so scared. I hate holding her down while she is kicking and screaming. I hate this! I don't think I can handle much more of it. Hopefully this wont stall her revision scheduled for next wednesday. We'll find out what neuro thinks tomorrow. Fingers crossed! Although I didn't get any answers, I made a new friend who's daughter has hydro and that in itself is considered an answer to my prayers. She also introduced me...ok, friend suggested me, to her friend who also has a daughter with hydro. I finally have someone to talk to! So, Carly is in bed finally. I let her watch tv in my bed and she fell asleep. Let's hope that tonight and tomorrow are better than today!

(ok, so hopefully the ranting will end soon...no promises but it has to get better sometime, right?)

My angel

I went out of town for a week with my sisters. These are some pictures that my mom took of Carly while I was gone. Isn't she CUTE!!!

Carly woke up with a fever again today. I called neuro and they said to take her to her pediatrician. I got her an appointment and we headed in. They couldn't find a reason for her fevers too. But her pediatrician started throwing around new ideas and new specialists to see. She wants Carly to see a Rheumatologist. She said something about periodic fever syndrome. She wants us to get back into genetics to see if fevers have anything to do with chromosome 15 duplication syndrome. Maybe something is wrong with her hypothalmus? Maybe she has a immunodeficiency disorder? I'm going crazy. I'm seriously going crazy! Oh wait, I think I've already gone crazy!!! So here I am, wondering what to do. Any ideas?

ER again

Carly was in the ER today. She woke up at 4AM with a high temperature. After not sleeping we finally decided that she needed to go to the hospital to get checked out. I took Cayson to school and dropped Burke off at the sitter and headed to Cardon's. We went over her history and symptoms. This is her 2nd high fever in 3 weeks. The ER pediatrician agreed that a 2 1/2 year old should not have as many fevers and as frequently as she has. Blood, urine, x-ray, CT...all normal and was pawned off as another viral infection. I don't buy it though. Everything was normal. No elevations in anything. How can she have a viral infection? Her neurosurgeon was sent in and I talked to him for a while. We talked more about the ETV. Her vents have not increased in size and are still fairly small. The ETV is still an option for her but there would be more to it than previously discussed. Because visibility is less with thicker and smaller vents, he would have to expand her vents first. He would remove the tube from her belly and attach it to a bag of fluid and use gravity to expand her vents as far as they will go. Since they are making her hydrocephalic she will have all the symptoms...(loss of appetite, vomiting, headaches, sunset eyes)...NOT FUN! Then he couldn't guarantee that her vents would expand enough to greatly improve visibility. Less visibility means higher risk. Those risks include damage to pituitary gland (hormones), tissue damage (memory loss), optic nerve damage or femoral artery damage (which he stated, "she wouldn't leave the OR alive.") So after talking about it we decided that we can't handle those risks. We are going to go ahead with a revision and if that doesn't work then replacing her shunt. So that's where we are. Surgery is scheduled for Oct. 13th at 12:30. I'm nervous. She's going to be okay. Please tell me she is going to be okay.

Sometimes being a mom sucks

I took Carly to see Dr. Moss in April...he is her new neurosurgeon. Our old NS was good and I really liked him but we never saw him after Carly had her shunt placed. We always saw his NP, Katie and I didn't like her. So now we have Dr. Moss who I like! Back in April we talked about Carly having slit ventricles, waking up at night with headaches and headaches throughout the day. He looked at all of Carly's MRI's, CT's and X-ray's. He didn't really like the shunt location or where the catheter was placed inside her brain. He said that it could cause shunt obstruction, especially with slit ventricles. (slit ventricles are due to over drainage) We talked about the possibility of placing a new anti-siphon shunt one day. We talked about doing an Endoscopic Third Ventriculostomy (ETV) at some point but her ventricles were too small to consider doing one then. So we left with the plan to watch Carly and see if her headaches got any better with increasing the pressure on her shunt.

Fast forward 5 months. Carly is still waking up at night with what we think are headaches. We saw Dr. Moss today to discuss changes. He recommended replacing her shunt with a new anti-siphon shunt. He thinks that the catheter is becoming obstructed with choroid plexus tissue. He looked at her new CT and compared it with her MRI from March. Her ventricles have increased in size and she is now a candidate for ETV. He left us with three options; A- leaving the shunt alone and waiting for an emergency to replace it. B- placing an anti-siphon shunt. C- ETV. Let me explain what the ETV will entail for Carly. First the surgery to do the ETV. Then he will remove the tube from her stomach and attach it to a bag for her shunt to drain into. This is an exterior shunt. The only reason to leave the shunt in is to verify that the ETV worked and the CSF is draining properly. If no fluid is present, the second part of the surgery will be completed. Her shunt will then be removed completely. Let me repeat that. NO MORE SHUNT!!! But let me make one thing clear. ETV is in no way a cure for hydrocephalus. After 5-7 days in the hospital she will be good as new and living without a shunt.

How do I make this decision? I don't know what to do. Instinct says go for the ETV. Wouldn't that be great for her not to have a shunt anymore! No more worrying about infection or fevers or hitting her head. She would still have yearly MRI's but no worrying about shunt revisions or emergency surgery. But there are risks. The morbidity rate is quite low but it is there. Damage to certain soft tissues of the brain could cause hemorrhage, brain injury or memory loss. The mom in me now instinctively says "NOOOOO!" What would it do to me if something happened in surgery and all I know is "I chose this surgery. This is my fault." What would it do to me if I waited and there was an emergency with her shunt and something happened and all I know is "I was given the option to try the ETV and I chose not to." I'm in a loose/loose situation here. I don't know what the right thing to do is. I'm trying to get rid of the headaches. I'm trying to help her. I'm trying to eliminate the struggle of having a shunt all her life. I'm trying to eliminate complications. And now given the option, I don't know what to do. WHAT DO I DO!???! What would you do?

I'm nervous. I'm scared. I'm confused. I'm lost. I'm terrified. What if I choose surgery? What if something happens to her? I'm to blame. What if I don't do it? What if something happens to her? I'm to blame. Am I getting my point across? I want to fix this for her but I'm afraid. I think that EVT is the best treatment for her but I'm scared. If we do this it will be around the 1st week in October. I'm scared to loose my little girl. I'm scared that I'm going to get bad news. I'm scared to see her after surgery. I'm elated that she could be shunt free! But I'm scared.

Any thoughts?

New neurosurgeon and genetics

I got a call in the beginning of April from the geneticist that saw Carly when she was first born. They did a full genetic screen on Carly and since I never heard back from then I never gave it a second thought. Well they called to let me know that her chart had gotten misplaced and that they found a mutation with her genes. They said she has Chromosome 15 Duplication Syndrome and that Thad and I needed to be tested to find out if it was inherited or a mutation during development. With C15DS children can development Thad and I were tested and it turns out that it is a mutation. So now we just follow her and they try to find another child like her.

MRI in April

After Carly's MRI in March we saw her neurosurgeon's NP. The MRI and recovery took longer than planned and we were late for her appointment. The NP wasn't happy and was rude but she still saw us. Her Chiari hasn't gotten any better or worse but her shunt is over draining and she has slit vents. The NP said that we could put an anti-siphon valve in and let her body do most of the work. She said some other stuff and I can't really remember what it was but after leaving I did not feel satisfied. After telling Thad about what happened we decided to get a second opinion. We saw the Dr that we tried to see when I was pregnant. He was amazing! He decided that we would watch her and see how things go. He increased her pressures and told us to keep a log of headaches and night wakings. So now here we are, waiting to see what happens. Hydrocephalus is a waiting game. A CRUMMY waiting game.

Little gymnast

We started Carly at The Little Gym once a week to do a gym class. She LOVES it and it has helped her coordination so much. The interaction with other kids has been great for her too. We are working a lot on gaining strength, especially in her legs hoping that it will help out with her ankles. Her speech is even improving. She loves singing at the end of class and going to get her stamp. I am so happy with the progress that she is making.

Hydrocephalus Walk

We went to our first Hydrocephalus Walk. It was an amazing experience to meet other hydrocephalus kids and their families. We had a great time and had a lot of support from our family.

It is an honor to be a part of such a friendly and supportive community.