Avery Alexandra was born on October 14, 2009. She has had many health issues to battle in her short life and this blog is for our family and friends to stay updated on her progress. We also want to document this process for other families to view who may be going through the same experience. We thank you all for your continued love & support..♥♥

Monday, April 23, 2012

5-Days Post-Op

This picture was taken yesterday, only 5-days post-op! She is doing really well. She hasn't needed Tylenol in days, and is sleeping and eating normally. The swelling is still subsiding, but she is looking amazing! Just thought you all might want the update :)

Friday, April 20, 2012

We are HOME!

Here is the video I tried to post on Avery's Facebook Event page, but was unable to. It is right after we told her we get to go home and she was so excited. She was eating french fries at the time and asked if her french fries where coming home too. Then she says, "Avery going home too". I said, "are you excited to go home"? She shook her head "no" (she was trying to be silly).

We got home from Rady's yesterday. Unbelievable that we were able to go home just 48 hours after a major Craniotomy. Last night she slept through the night and woke up as happy as can be. I have been giving her Tylenol, but not even sure if she needs it. We washed her hair and the incision last night, and it didn't even bother her. She is doing remarkably well and recovery seems so much easier this time compared to her first surgery. (Although, recovery in the hospital was much harder than her first, because she kept saying she wanted to go home). Now that we are home, she is back to her happy old self :)

It is really hard to even see the incision and stitches because of her hair. She is still pretty swollen, but both eyes have been open the entire time. There is some bruising, but not much. I will upload pictures to my Facebook page soon.

Wednesday, April 18, 2012

Some SVT and Day #2 Update

Yesterday afternoon, Avery had a run of SVT. The Cardiologist was paged and he thinks that was due to the fact that she threw up her morning dose of meds. They gave her some Propranolol every 6 hours to try to control it and it seems to be working. If she has any more runs of SVT, we will have to move to Intensive Care - which we really don't want to do. Last night she woke multiple times in the night being uncomfortable and for the nurses to do a million things to her - blood draws, give her medicine and fix all her chords. She has a drainage tube in her head, a catheter for urine (which was removed this morning), 5 heart monitoring cords, and 2 IVs. She is on Tylenol with Codeine, Morphine (as needed), Zantac, an anti-swelling med, Flecainide, and Propranolol. She isn't eating much, but is drinking well. She doesn't seem to be in too much pain, just uncomfortable at times. The swelling isn't too bad, and will likely peak tomorrow. She keeps saying she wants to go home. Just now she sat up and wanted to color. So happy to see her playing again. Looking forward to seeing her dimples again.

Tuesday, April 17, 2012

She is out of surgery

Avery is out of surgery and we are now waiting for her to wake up so we can see her. I just spoke with Dr Cohen (CFPS) and he said that she did great! Her vitals continued to be good throughout surgery. He said that the there was an abnormal, large, oblong bone on her right orbit. He broke the bone and overlapped it. He removed the roof of her orbit and implanted some cadaver bone to the roof in order to round it out more. He also slightly shifted the alignment of her forehead to make it straighter. He did say that most babies' bones fuse together well after the initial surgery, but hers oddly were not. He said that it isn't a big concern, just an oddity. Since there were gaps all the way around the right side where the forehead was removed during the first surgery, and were not healing on their own, he implanted cadaver bone to fuse the bones together. He did say that she may likely need another surgery in a few years to work on some more gaps, however this will be a touch-up, much less invasive surgery done endoscopically. He placed a drainage tube in her head and he said that it will likely be removed in two days. We are so grateful for a successful surgery and are looking forward to seeing her. Hopefully recovery goes smoothly, and I will try to update when I can, but will likely be busy loving on my little lady. Once again, I want to thank you all for your love and support.

Update from the Neurosurgeon

The Neurosurgeon, Dr. Hal Meltzer just updated us on Avery's progress. Her vitals have been stable the entire time and they were able to go along the same incision without having to shave any of her hair. They removed her forehead and saw a very large oblong bone on the side of her right orbit. In order to fix this, they are going to break the bone and rebuild it with dissolvable plastics. The swelling will be quite significant on her right side and he said that since this is her 2nd surgery, the work that needs to be done will be greater than her first (there is a lot of scar tissue to deal with). They will, however, put a drainage tube in her head and that will help to alleviate some of the swelling. I imagine that she will have a very large black eye that will swell shut, similar to her first surgery. The Craniofacial Plastic Surgeon, Dr. Steven Cohen, still has over an hour of work to do. Please keep the love, support, prayers and notes coming - they are helping tremendously.

She is in Surgery

It's been a very hard morning. We woke Avery at 4:30 to give her medication. Shortly after she vomited. Her demeanor seemed good so they advised us to still come in. Her plastic surgeon, neurosurgeon and anesthesiologist all assured me she was ok for surgery and they spoke with her cardiologist about her vomiting her meds. They said the can give her more Flecainide while she is under sedation if they see her heart to into svt. She doesn't have a fever and has no signs of respitory illness so they said to go ahead. They just took her away. It was heartbreaking and she screamed for me. It is so much harder now that she is older :(. I know she is in good hands and that she has a world of people praying for her. Thank you all again.

Monday, April 16, 2012

Surgery is ON for Tomorrow

After 7 hours at Rady Children's Hospital and meeting with her Cardiologist for an EKG, her Pediatrician and getting her lab work done, Avery has been officially cleared for surgery tomorrow. Her heart was perfect today and Avery was eating better today and her stomach virus seems to be done. All of her Doctors and surgeons assured me that she is cleared for surgery. While she is under anesthesia, they will put a catheter in to get a urine sample for some of the testing they will be doing for her hypoglycemia. She also had lab work today for her pre-0p and for her extra tests checking for various conditions that may be causing the hypoglycemia (the results will take a few weeks). While she is there, she will be on IVs and be getting all the nutrients she needs so her glucose levels shouldn't be an issue.

We had a VERY long day today and we are now preparing for tomorrow. I can't believe I just started packing for this! I have been completely overwhelmed by all the messages, posts, texts, prayers, and love from you all and I want you all to know how much it means to me and our family. I will try my best to keep the blog updated as we go through this process again. Looking forward to the other side.

Saturday, April 14, 2012

Hypoglycemia and Surgery Postponment

When Avery woke up this morning, it was obvious that she was hypoglycemic again. She didn't eat much yesterday and woke up numerous times in the night crying. When we got her up in the morning, she wouldn't stand in her crib and was lethargic, zoning out and wouldn't move. This was the exact type of behavior she had the last time she was hypoglycemic (in Dec). We gave her juice, which helped. We brought her to the pediatrician and by the time we got there she ate a little more and her blood sugars were stabilized. The Pediatrician advised that she shouldn't have her Cranio surgery on Tuesday until they can figure out what is causing her to become hypoglycemic. Avery will have numerous blood tests and urine tests done on Monday and the results will take about a week. In the meantime, we need to ensure she is eating often and we will be checking her glucose level at home. If she becomes hypoglycemic again, or isn't eating well, we will need to bring her to the ER for IVs. We are bummed we have to postpone her surgery, but we don't want to take any chances and ensure she is in optimal health beforehand. She will also meet with Cardiology on Monday to get another EKG.

*The picture above is from a photo shoot and video shoot we took at Rady Children's Hospital on Wednesday. They have asked her to be one of the four Honorary Patients at the Shamu & You Family Walk on October 6. She certainly has earned it.

Friday, April 6, 2012

Avery's Holter Results and New Combination of Heart Medication

Last week Avery wore another Holter monitor. Apparently, she is metabolizing the Flecainide too fast and the effects are wearing off a couple hours before her next dosage. During this time she is having a significant amount of SVT, but none are sustained for longer than 20 seconds (which is a good thing). Her overall heart rate is good. Since she has maxed out her dosage of Flecainide, they have decided to add her Propranolol back in to hopefully control the SVT. Her Cardiologist said that some kids have SVT that is difficult to control and Avery is that kid (of course). Hopefully, the combination of the two drugs will keep her heart rate stable. Luckily, he said this shouldn't delay her Cranio surgery and they will likely put her in a Holter while we she is recovering for 4 days at Rady's.