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 :)

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.

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.

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.

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.

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.

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.

CFPS Appointment and Surgery Details

We met with Avery's CFPS (Dr Cohen) this week to discuss surgery. He is going to open Avery's head up in the same zig-zag incision from her first surgery. He will also try his hardest to not have to shave too much hair along the incision line. He will then remove the front of the skull/browline. He will implant some bone grafts in the top corner of her right orbit to try and round it out and make it match the left better (trying to reduce the harlequin effect of her right orbit from being born with a closure of her right coronal suture). He will also work to even out the forehead/brow bone and improve the gap on her right side where the bone graft didn't vascularize from her first surgery. This time, unlike last, she will have a drainage tube placed in her head and left there for a couple days after surgery to help reduce swelling. So hopefully she doesn't swell as bad as she did from her first.

Date: April 17th, 2012

Time: 7:30 AM

Duration: Up to 4 hours

Hospital Stay: Approximately 4 days

Location: Rady Children's Hospital San Diego

Surgeons: Dr Steven Cohen (Craniofacial Plastic Surgeon) & Dr. Hal Meltzer (Pediatric Neurosurgeon)

Avery will have a Cardiological Anesthesiologist to closely monitor her heart while she is under anesthesia.

Blood Transusion: Jason (Avery's Dad) will be directly donating his 0- blood for surgery for a blood transfusion.

Surgery Facebook Event: http://www.facebook.com/events/415147161833883/

Avery has been taking her heart medication (Fecainide) great. She will wear another Holter Monitor on Thursday to see if the SVT has been completely controlled. When we were discharged from the hospital, she was still having a few very quick and small SVTs. She will also have another EKG the day before her surgery.

Her Heart & Her Head.....Her Journey Continues.....

It is with great sadness that I am starting to update Avery’s blog again to keep everyone posted on what is happening with regards to Avery’s heart (SVT) and head (Craniosynostosis). As many of you know, Avery has been admitted to Rady Children’s Hospital for as they put her on a new drug to stabilize her heart rate called: Flecainide. She will also be having another major Cranio surgery in April. To explain how we got to this point, I must give you all some background on what has happened over the last few months.

Background & Avery’s Heart

On Christmas night 2011, Avery vomited one time. She seemed a little off, but didn’t throw up again. The next day, she wasn’t eating much and being a little quieter and calmer than normal. The following morning, when she woke up, something was obviously wrong. She was dazed and staring into space. She was extremely lethargic, was not communicating and couldn’t bear the weight of her limbs. I took her into see her Pediatrician. When the Pediatrician saw her, she was immediately alarmed. She did the normal physical trying to determine what was causing this. She found nothing. She decided to do a finger prick and get her glucose level. Her level was 40; this is considered extremely hypoglycemic. If it got much lower, she could have seizures or even fall into a coma. They gave her juice, which she drank, and slowly she started ‘coming back to life’. They monitored for about 30 minutes and then decided to send us to the ER for closer monitoring.

When we got to the ER at Rady Children’s Hospital, we were assessed in triage. As soon as the nurse listened to her heart, she hit a button on the wall, a red light went on and I started hearing Dr’s being paged. I knew this was not good and that her SVT (Supraventricular Tachycardia) was detected. We were whisked away to another room and were swarmed with Doctors and Nurses. They were all very busy doing stuff, talking to each other, and before I knew it, Avery had all her clothes removed (and I was holding her and didn’t even realize this was happening). It was all very surreal. Before I knew it, she had 20 heart monitoring leads attached to her and they were trying to get an EKG done. Obviously, Avery was frantic and crying (and you need to be calm/quiet/still to get the EKG). I started singing to her and one of the nurses had the presence of mind to turn down the lights and guide everyone out of the room so they could get the EKG done. It worked. Her heart rate was over 200. Minutes later an x-ray technician came in and told us she was going to take an x-ray of her chest. We were then taken to a bed and they began the pain-staking process of getting an IV in her. Avery has had many IVs in her days, and it is very hard to get it into her little veins. They tried 3 times as she screamed! I told them that the foot was always a successful spot. But, because they may need to get her intravenous medicine for her heart, they needed the IV as close to her chest as possible. Finally, they got one in and started her on fluids. Her heart went in and our of SVT a few times. The first time it happened, a bunch of nurses ran in and applied an ice-pack over her face. This is protocol to trying to treat SVT, but Avery freaked out and her heart rate got even higher. I talked them into letting me hold her to calm her. It worked. From then on, when it happened, I held her as the nurse watched over me holding a bag of ice ready to shove it in Avery’s face. Luckily, mama’s love did the trick. Finally, about 2 hours since we arrived, it was calm and we were in a bed waiting for her Cardiologist to finish a surgery he was doing to asses Avery. Avery feel asleep.

They decided that Avery needed to be put back on Porpranolol (she was also on this from 4 mo - 10 mo). This medication is given 3x a day and they said she will likely be on it until the end of the year. We were then discharged with instructions to follow up with our Cardiologist, Dr Perry.

A week later, we meet with Dr Perry and Avery had an EKG. He let me know that she will wear a Holter Monitor after 2 weeks being on the medication to see if it was working. She wore the Holter for 24 hours and tolerated it great! She called the leads her stickers and the device her purse. We then mailed the Holter back and waited for results. Unfortunately, it showed SVT. So, we increased her medicine, waited 2 weeks and wore the Holter again. This time while she wore the Holter, she got the stomach flu. She vomited every 15-20 minutes for 6 hours. When we sent the Holter in that time, the Cardiologist called to let us know that it is obvious that her SVT is triggered when she is not feeling well. So, we increased her medication, again. Two weeks later, she wore another Holter. This time it still showed SVT. They were small and rare occurrences, but there nonetheless.

So, that is why were are admitted now. She is being given a stronger medicine called Fecainide. This medicine can have serious side effects, so the patient must be hospitalized for 3 days to ensure they don’t have the side effects. She will have bedside telemetry and be monitored 24/7, and have an EKG done daily. If all goes well, we will keep her on the medicine for an undetermined amount of time. The Cardiologist now doesn’t talk about her outgrowing her SVT, rather keeping her heart stable until she is big enough (20 kilos/45 lbs) for surgery on her heart (catheter ablation).

We still don’t know why Avery became Hypoglycemic or what caused it. Shortly after it happened, we did a fasting-hypoglycemia test. Luckily, she passed. Not sure if we will ever know why it happened. We just are hoping it doesn’t happen again and I tend to let her eat whatever she wants now. Lucky girl :)

Avery’s Head, CT Scan & Surgery

During this time while we were working on her heart, we met with Avery’s Craniofacial Plastic Surgeon (CFPS). We have always known that Avery would need some more surgery, but were waiting until she was closer to 4. Well, Dr. Cohen (CFPS) said that with the missing bone graft, deformity in her orbit, and the obvious increase in her forehead bossing, that he recommended another full CVR/FOA (Cranial Vault Reconstruction/Frontal Orbital Advancement) sooner rather than later. I am saddened to have to go through this now, but she is likely young enough to where she won’t remember it. As long as everything is cleared with her heart this week, then we will be ready for her next surgery. It is currently slotted for April 17th. Her Neurosurgeon, Dr. Meltzer, is ordering a special Cardiological Anesthesiologist for her surgery and will be sending her to PICU (Pediatric Intensive Care Unit) following her surgery to be sure to keep a close eye on her heart during this major surgery.

Avery went in for her CT Scan a few weeks ago. She was sedated and when she woke up she was as happy as could be. When she saw me for the first time, she said, “I did good”. She is my little trooper. I will post pictures of her CT after I have a chance to discuss them with her CFPS next week.

I want to Thank all of you who have been there supporting us during this. All the notes, texts, emails, gifts, meals, cards, etc certainly keep our spirits up! We know that Avery will be just fine in the end, the road is just a little bumpy for her right now. She greatly appreciates all the gifts and all the love!

Cranio Angel Network

We changed the name of our charity to Cranio Angel Network (CAN).

Website: www.cranioangelnetwork.com

Facebook: www.facebook.com/cranioangelnetwork

Email: cranioangelnetwork@gmail.com

Together we CAN increase CRANIOSYNOSTOSIS awareness!!!!