It's been forever since I've updated on Lila. We have had a tough year. It started off pretty good and Lila had made so much progress! She was sitting pretty much on her own and talking a lot more. She was catching up developmentally and hadn't had a uti in months!! We had her 2nd bday party all planned and all our Sesame Street decorations bought. And then a few weeks before her bday Lila got RSV. She was admitted to Cardinal Glennon for some breathing issues thought to be related to the RSV and some possible seizure activity. She bounced back quickly and was still acting a little sick but still kicking SB butt : ). Then she took a crazy turn for the worse. On Feb. 24th Daniel called me at work and said Lila was having some issues breathing and that he was going to take her to E.R. I got a sub and was able to leave school and go to the E.R. When I go there Lila was smiling and said "mama" when I walked in. Daniel said they thought it might be pneumonia and that they suctioned her out and she was breathing better. The doctor came in and said that they were going to send us by ambulance to Cardinal Glennon just to be safe. So Daniel went and back the bags and took off and I rode with Lila to St. Louis.
Once we got to Cardinal Glennon they got us in a room and settled in. Lila was totally out of it at this point and had been sleeping since we left Mt. Carmel. We chalked it up to the pneumonia and settled in to bed. About 30 min later Lila starts this awful breathing sound. She was struggling to breathe and gasping. I called the nurse in and she called the on call doctor. She came in to check it out and listen to Lila. Lila's breathing is more and more labored and the doctor was baffled because her air way sounded clear. Suddenly Lila stops breathing.....the next 24 hours were the longest in my life. The doctor called a code blue and suddenly 20 people are in the room. The end up bagging her and eventually intubating her. They then rush her to a CT scan and then to the pediatric intensive care unit. When they finally stabilized her they let Daniel and I go back to see her. The PICU doctor comes in and gives us the result of the CT Scan......shunt failure and increased inter-cranial pressure caused Lila to stop breathing. My heart dropped.....how did we miss the signs? She had been vomiting but Daniel and I had had the stomach flu so we thought thats what she had too and our pediatrician agreed. She had been more tired but she had had RSV and the doctors told us that was the cause of the fatigue. No one had thought to check the shunt and I hadn't questioned.
Seeing her in the PICU was the hardest thing I've had to do. We were only back there with her 20 min before Neurosurgery came to do a External Ventricular Drain. They explained that since Lila had a UTI (i forgot to mention that earlier...she had gotten the uti a few days before this happened.) they could not do surgery to fix the blockage of the shunt and that the external drain was needed. Lila spent her 2 bday in the PICU. So to shorten the story we had to wait a week for the UTI to clear up and then Lila had surgery on Saturday March 3rd. The surgery went great and we were confident that Lila would come off the ventilator with no issues....but that did not happen. When they first tried to take her off she was off it an hour and then they had to reintubate her. Her airway was so swollen from being intubated that long that in the process of getting the vent back in they knocked her two front teeth out :( my poor baby looked rough....she had no hair (we asked them to shave it all during surgery because it was patchy) and no front teeth.....And we had a new issue...Lila wasn't waking up. She was no longer sedated and was not her self. She couldn't track things with her eyes anymore. She wasn't trying to pull the vent out. She actually wouldn't move at all. One doctor told us she was probably had severe brain damage and that she would never improve. We were heartbroken....they tried again to extubate her and she did better! Her breathing wasn't 100 percent and she had to be positioned carefully but was not needing oxygen or the vent. The neurosurgeon wanted an MRI but she would need to be sedated for it and her breathing was not stable enough to risk it without a venilator. So they reintabated her. At this point the PICU doctors were trying to talk us into getting Lila a trach but I was not having it yet. I knew there was something else going on and our neurosurgeon agreed. Dr. Elbaba (neurosurgeon) suggested decompression surgery to see if that would help her breathing and some of the issues that she was having. So on Monday March 12th Lila had decompression surgery. It went well and it helped some of the issues.
The MRI showed no stroke or brain damage!! We were blown away!! Lila was showing some signs of a stroke (only using muscles on one side of her face) but she was still not back to baseline. The MRI did show that Lila had a tethered cord and several cysts and two sphincters on her spine. Her spinal cord is not able to grow with her at this point and she will need detethering surgery this summer (boo). After a month in the PICU Lila was moved to a transitional care unit. And after 37 days we finally brought her home : ) We have had a battle with some pneumonia but she is doing great!
Lila on Easter :)
She is still not back to herself. The last time I've heard her talk it when she said "mama" when I walked in the E.R. in Feb : ( it breaks my heart to see how much she struggles to gain her strength back. She is like an infant again. Everyday gets a little better and she still is having some issues. Our neurosurgeon assures me that she will be better after the tethered cord surgery. On a bright note her kidney's look fantastic!!!! And her hair is growing back darker and thicker!! God has truly blessed our family and answered our prayers. I know that his hand was on my little Lila and that He never left us. I want to thank everyone for their prayers and support. We have been truly blessed by all our friends and family!
I promise to update more this summer!!
Love,
Alyssa, Daniel, and Lila
