What Happened...

Many people have been asking what actually happened. Over the past few weeks we started with a partial story and have been piecing things together. Some of you that have talked to us on the phone many have parts of the story, but for all that are curious here is the whole story.

Shortly after Casey's first birthday we took her in for her 1 year vaccinations. One of these shots was a chicken pox vaccine. Everything seemed to be fine. Exactly 10 days later I noticed what looked like bug bites on Casey's leg and she spiked a pretty high fever. The fever triggered a seizure. Casey has tonic seizures, but this was the first seizure I had ever seen. It was not violent, just the first physical seizure she had. I calmed her down and we got through it. As soon as I could I called her neuro to let him know what had happened. The seizure medicine Casey has been on since February is called Valproic Acid. When he heard about the seizure he increased her medicine by about 30-40%. We had gotten the level checked twice since the increase and both times showed the acid to be at a therapeutic level. At the same time we found out that it is a common reaction for kids to get fevers and bumps on the shot site 10-14 days after the shot. It was unfortunate that the fever triggered a seizure, but the fever and bumps were nothing to be concerned about.

So we had been giving Casey the increased dosage since early May and everything seemed fine. We started doing regular breathing treatments around the same time. These treatments were to help strengthen and heal her lungs from the pneumonia and ARDS that Casey had in March. The treatments seemed to be doing a great job. Her baseline saturation was in the mid 90's and we never had to give her oxygen.

On June 3rd (Sunday) Casey woke up in a great mood. She was doing well and then out of no where around noon she had a really bad reflux. We suctioned as much as we could and tried to get her to calm down. Normally this takes anywhere from 10 minutes to 2 hours to get her back to a calm state. However after about an hour she was still very worked up and then we started to see blood when we suctioned her. We had seen small amounts of old dried blood before, but this was very different. We were seeing a significant amount of fresh blood. We plugged her in and she was saturating (maintaining oxygen) well, but her heart rate was very high. We spent the rest of the evening trying to get her heart rate under control and suctioning the blood. When I took her to bed her heart rate was too high to do our normal breathing treatment so instead she and I just went to bed. Around 11-12 she still had a very elevated heart rate and we were still suctioning blood. We were getting very concerned. We plugged her back in and saw that her saturation was plummeting. Anywhere from 90-100% is healthy, she was in the 40-50% range. This was pretty scary and not like her at all. We hooked up the oxygen and were able to get her saturation into the 80's overnight. Anytime we moved the oxygen she would immediately plummet again. First thing Monday morning Tim and I loaded her up and went to Children's Hospital (where her pulmonary doctor clinics). We spent all day Monday in the ER. With oxygen we were able to keep her in the 80's most of the time. The admitted us that evening and sent us to a room around 7:PM. Overnight she did pretty good. She was 80-90 most of the night. Around 5:AM things took a major turn for the worse. With all the oxygen we could give her she could not stay saturated at all. By 7:AM she was plummeting back into the 40-50 range even with oxygen. The quickly moved her to the ICU and put her on a ventilator (breathing machine). She stayed on the vent for 11 days, and for the first week on the vent she was depending 100% on the machine to breath. The doctors and nurses tried to ween some, but she was just not strong enough. Everyday they did blood work. They noticed when they moved her to the ICU that her platelets were VERY low. When she left UCLA in March she had 250 (on the low end of healthy). Her platelets had fallen to 12. The doctors gave her blood and platelets right away. Even after the transfusion her counts were very low, and falling. The doctors were not sure what was causing this, but had to find the source and fix it.

Platelets are what the body uses to clot. So when you bleed the platelets are what stops the bleeding. Sunday when we suctioned all the blood we now knew why. We didn't know why her platelets were low, but we knew why the bleeding did not stop.

After a few days of trying to figure it out the doctors finally came and said they were pretty much out of ideas, and all they came up with was a long shot. The Valproic Acid she takes for seizures has a rare, but plausible, side affect that causes bone marrow suppression. Being that platelets are created in the bone marrow they wanted to change her meds and see if it would help. If it didn't then we would be facing a long road of blood specialists, bone marrow issues, etc. So everyone was really hoping the meds would be the source. Sure enough, they were. Her platelets quickly rose, and at one point she was over 630. She has balanced out now.

The pulmonary doctor told us that due to the severity of the damage done to her lungs that he believes that she aspirated on blood. Apparently a blood aspiration is MUCH worse than food or secretions. There is a chemical reaction that causes your lungs to basically shut down when blood enters.

Once Casey's platelets came back up she started to make very quick progress. It was like one day she just decided she was tired of being sick. She amazed even the doctors with how strong she is. I have never met anyone stronger than Casey. She really is an amazing little girl.

So, long story short. Casey's chicken pox vaccine caused a fever that triggered a seizure. Then the increased seizure meds led to Casey's platelets dropping. Then when she refluxed we must have scraped her already raw (from reflux and frequent suctioning) throat and caused it to bleed. Due to the platelet issue the bleed was severe and she ultimately aspirated on the blood.

We have Casey on a new seizure med now. We will spend the next month or so working with her neuro to get the med balanced just right, or possibly change it to get her back to a stable seizure free level while maintaining a healthy platelet count. In addition we are spending the next 6 weeks continuing breathing treatments and working with pulmonary to get Casey's lungs as strong and as close to recovered as we can. After 6 weeks she will be considered for surgery. The surgery will be to have her fundo redone (the band around her sphincter that was supposed to stop reflux back when she was just 1 month).

She is so happy to be home, as are Tim and I. Tim's back surgery is scheduled for July 9th. For a while they were going to do Casey's surgery sooner. It would have been tough having her in LA at Children's with Tim here in Santa Monica. Luckily she and I will be here at home while Tim is in the hospital and things should be a little easier. Tim's mom is coming to stay at the hospital with him while my sister is coming to stay at the house with me and Casey. Shortly after Tim's recovery will be about the time we take Casey back in for her surgery. So the next few months are going to be pretty busy here. We will have to take the time now to get lots of rest.

Again, thank you to everyone for all your thoughts and prayers for our little angle. They seem to have helped as she is home and doing well.

We're Home!!!!

We are finally home. This was a really long hard stay but we are all so glad to be back home. Casey was discharged around lunch today and we just finished getting her and all of her stuff settled at the house. She seems to be feeling a lot better. She is very tired (as are we) but overall seems to be happy to be home. I just wanted to say thank you to everyone for all of your well wishes, prayers, etc. It really means a lot to us to know how much people care about and love Casey. I will post more details later, just wanted to let everyone know we are finally and happily home :)

Out of intensive care

Casey is getting much stronger, and was taken off the ventilator and moved out of the intensive care unit. Over the last couple days, she has had an upper GI test so surgery can decide what types of procedures they recommend and how urgently they should be scheduled, since another pneumonia from reflux/aspiration would be devastating. Casey also had an EEG done, as they had to switch her seizure medication while in the ICU, and she is showing some small signs indicating the phenobarbital is not working as effectively as the valproic acid. Based on the results, we may need to switch her seizure medicine again. All 3 of her leg IVs were taken out over the last few days, so she is down to just the one central line in her upper right arm.

Now that we are in a normal room, things are much more comfortable - Casey is in a big bed and we are able to lay next to her, which makes her feel better. Even the nurses have commented on how much better her stats look when Marty is next to her. We hope there are not too many more tests and we will have a plan in the next couple days. In the meantime, Casey can just focus on getting stronger.

Casey has turned the corner

After 10 days in Intensive Care, the doctors have finally used our favorite phrase "turned the corner," letting us breathe a huge sigh of relief that it's when and not if we will be bringing Casey home. Her lungs have continued to recover slowly, and even her platelets have rebounded a bit. The respiratory team is starting to slowly wean her ventilator settings so she can be extubated hopefully within the next week.

We are starting to turn our attention to surgical options to better address Casey's reflux. Most likely she will need to have her fundoplication tightened, and another tube inserted downstream from her stomach into her small intestine. This will allow us to feed larger amounts of food directly into her small intestine without risk of pneumonia from reflux/aspiration. This is typically called a j-tube, whereas currently she has a g-tube. The g-tube would still stay in place for some medicine and for gastric venting to relieve gas pressure. The j-tube care may be harder, but it will be worth it.

In order to have these types of procedures, Casey will need to have a number of GI tests after she is stable enough from her pneumonia, possibly as early as next week. With surgery and a difficult recovery after that, you can see that she will be in the hospital for quite some time.

It was one year ago today that we finally brought Casey home from UCLA Medical Center after being in the NICU for almost 2 months. We are so blessed that she is with us today and has so many people that care for her.

Casey is in critical condition at Children's Hospital

Just a quick post to let everyone who has been calling what has happened with Casey. Last Sunday she had a back reflux on which she aspirated into her lungs. We were not able to get her to recover her breathing or heart rate, and she was coughing up blood, so we took her to Children's Hospital of Los Angeles - this is where we take her for her pulmonary doctors.

After monitoring Casey and seeing that her condition was declining rapidly, they decided to intubate and put her on a ventilator. They also inserted 2 femoral (thigh) central lines for drawing blood and giving medicine.

In addition to the obvious respiratory problems, Casey's platelet count is our main concern. It has been very low the whole time, and even after getting a transfusion, it is continuing to decline. Since bone marrow produces these cells, they are trying to figure out why Casey's bone marrow is not working properly. One reason is a rare side effect of her seizure medication, but it could just be her body not being able to adjust to so much stress at once. She will most likely need another transfusion, but we can not continue that indefinitely, so they have mentioned that something similar to chemotherapy may be needed to wipe out whatever is causing this problem.

Her lungs have improved slightly over the last couple days, sounding a little better and her some subtle differences in her xrays. Unfortunately, her lungs were still quite damaged from her last pneumonia a couple months ago, so her baseline xrays were already quite bad.

They have Casey heavily sedated and comfortable - she is a little swollen from the fluids and medicine, but she has opened her eyes a lot the last couple days and shown other signs of strength, so we are hopeful that she will continue to improve and respond well to all the treatments.

Well, that's all for now - we will try to put an update here about once a week in case we don't get to talk to everyone.