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I felt it appropriate to give an update on Ava on the one year anniversary of her diagnosis. It was also the day I was first introduced to this website (of which, I’m so thankful to have found). So much has changed since that day and yet the memories are still as fresh as if it were yesterday. I’m not sure they’ll ever fade entirely, but I’m hoping to continue to make new memories with my little one and look to the future rather than the past.

Since my last post, Ava’s life has been quite eventful…

We finally visited a GI doctor and – for the most part – we have controlled her acid reflux and slow motility issues.  It’s not perfect yet and she still throws up a couple times per week on average, but anything is better than 8-10 times per day!!! She currently takes generic Prilosec and erythromycin.

At the end of April we paid a visit to Ava’s geneticist and, overall, he was pleased with Ava’s development. He even thought she was proportional in size.

Shortly after that, we had a well-baby checkup. We switched pediatricians to a different partner within the same practice, so this was our first official visit with her even though we had crossed paths due to sick visits for my older daughter. It was at this visit, my concerns were starting to grow toward seizures and vaccinations. After a lengthy conversation with the doctor, we came to the conclusion to give Ava all her vaccinations on schedule despite her petite size and her strong potential to have seizures. She received 5 vaccinations that afternoon. Boy, I wish I could have taken that decision back and listened to my gut …!!!

Eleven hours later (at 2 am), I was awakened to a sound on the video monitor. As I focused my sleepy eyes, I realized Ava was getting ready to throw up (an occurrence that rarely happened in the middle of the night), so I made my way to her room to clean her up. When I finally reached her, she acted very different than what she would normally be acting like after vomiting. She didn’t fight, cry or even move. Her eyes wouldn’t focus on me but just looked to the side.  She struggled to breathe (due to aspirating on her throw up).

To make a long story short … an ambulance ride, ER visit, spinal tap, CAT scan, ventilation … we finally arrived in the PICU. Ava seized on and off for 3 hours. It was exhausting to watch. The EEG came back with the following results: Complex partial seizure, status epilepticus. Although Ava was tired and doped up with all sorts of seizure meds, she finally stabilized.

The following morning, the PICU doctors felt she was ready to have the vent tube removed. Wrong. After six hours of struggling to breathe, we came to the decision to intubate her again. There was no way they could have foreseen the trouble Ava would have breathing. The only conclusion was that her upper airway was the source of the problem. The swelling was keeping her from getting the full breaths that she needed. After 3 days of being intubated, she coughed up her own vent tube (they were planning to take it out that day anyway). But, again, Ava struggled to breathe. They tried everything … various breathing treatments and helium oxide. After two days of extreme struggle, the only option was to intubate for a third time. We were given a 50/50 chance that if she were to stay intubated for 5 days, kept sedated and given high doses of steroids then her upper airway would have time to decrease in swelling. The only other option after this would have been a tracheotomy. It was a scary situation to be in and the longest 5 days of my life! FINALLY, the day arrived to remove the tube again. And this time it worked! Praise the Lord!

They kept us in the hospital for another 4 days. Understandably, Ava was very aversive to swallowing and having anything go into her mouth which made bottle-feeding difficult. They sent her home on an NG tube. We were in the hospital for a total of 15 days.

They say babies and children rebound fast, but Ava is truly the exception! Upon returning home, I gave her a bath and brought her into the living room. She looked around and smiled for the first time in over two weeks. Such a blessed sight to see! But, even better, she started eating. It was as if she knew she was home and safe, her defenses truly melted away. Within just a couple of days she was eating normally again!

Ava is just now at the point where her strength is back to where it was before her seizure. We are still working on her neck control and back strength. She loves sucking on her hands and fingers, playing with her feet, kicking her legs and batting/grasping at toys. She’s very vocal and enjoys it when people mimic her sounds. She smiles a lot, but giggles are more challenging to get. She is currently 11 pounds, 2 ounces and 24.5 inches in length (just barely on the normal growth chart for length!).  Also, she is extremely healthy; she has never had so much as a simple cold. We can only credit God with His protection of her in this way!

Ava is on phenobarbital for seizures, but we’re weaning her off it and replacing it with Keppra. The taste of the phenobarbital makes Ava throw up immediately. So we still have her NG tube in so we can complete the weaning process which is only 2 weeks away.