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!