Catch Up

This blog has sadly been neglected. We know that a lot of you out there still check this blog and we wish we were better about keeping it up to date, but in a way it was a little easier when Lyla was in the hospital because we had more down time sitting in there with her while she slept.  I'm going to try and do recaps of the last 3 months.  This might get pretty lengthy, but I really do want to have a record of all this craziness to look back on.

May:
  After almost 2 months at home post OHS discharge, Lyla got really sick. She had been getting a lot of runny noses and fevers and combined with spitting up and not gaining any weight, we were asked by her doctor to bring her in to the ER. Both Trevor and I were optimistic that this wouldn't be a long stay, but I don't think we realized how sick she was. We were luckily admitted to the PICU. I say "luckily" because that is the 10th floor and that is where Lyla has spent all of her time at UCD. At first it was with the general doctors, and not ICU/cardiac doctors, but in less than 24 hours we switched over to the cardiac doctors. This was a good change because they know Lyla more, but scary since it meant she was sicker than we thought. She had human metapneumovirus amd diagnosed with bronchiolitis and pneumonia. This stay was 10 days long and we went home just in time for mother's day. The rest of the month was filled with Dr. appts. Ophthalmology, cardiology, pediatrician, and a blood draw.

June:
  June was going to be all about fixing Lyla's eyes. First with a nasolacrimal duct surgery, to help with the drainage in her eyes. And then cataract surgery

 

to remove cataracts in both eyes and hopefully give Lyla some vision. But unfortunately, we had to cancel and reschedule appts due to fevers. We had an appt with ENT (ear, nose, throat) for a swallow study. This was really neat to see in x-ray, Lyla drinking and swallowing. I wish I took a video! Anyway, she passed! So we have officially been ok'd to bottle feed. Unfortunately, Lyla gets sick so frequently that we haven't been able to get a good consistent feeding schedule. She is still being fed continuously through the gtube and takes water and formula occasionally from the bottle. 
She's also been getting really good at lifting her head! It's been amazing to see the change. 








July:
  As a result of Lyla's frequent fevers and spitting up, she wasnt gaining weight like she should have been so her cardiologist scheduled for us to be admitted on July 1st. The plan was to have her checked out by GI, ID (infectious disease) to check immunity deficiency, and get some blood drawn. We were there for 4 days and I was ready to leave after the first night! It seemed like a pointless admission. ID didn't feel it was necesary to check Lyla out, and GI didnt have much input since the issue of her "button" leaking resolves when she's not wretching and spitting up. There wasn't anything the hospital stay was doing that we couldn't do at home. Very frustrating. We brought Mabel and Parker to the hospital to watch the fireworks at Cal Expo from the 7th floor. It was amazing how many different firework shows we could see. The Kids got bored however. One good thing was that they could do test runs of Lyla off oxygen and closely watch her sats. She was pretty consistant around 90- mid 90s so they advised us to keep her on oxygen at night while she sleeps and as needed during the day. So wonderful!!! I can't believe how much easier it is to leave the house without the oxygen tank. We had been carting that thing around since April.  We went home on July 5th.

  After discharge Lyla was able to have the eye duct surgery on July 8th. The picture to the right is how the Dr. checks if the eyes are draining correctly. The right eye drained really well and the left eye was way better than pre surgery so we could prepare for cataract surgery.









 We had to wait until the end of July to have the cataract surgery because the Dr went out of town! picture on the left is what Lyla had to wear for 28 hours!









 Picture on the right is what Lyla is currently wearing for 3 weeks. Plus 2 different kinds of eye drops 1 drop in each eye 4 times a day. She's surprisingly been so good about the eye shields and hasn't tried to rip them off. Below is what Lyla's leg looked like after the nurse flushed her IV (wrong) for about 4 days. It still is really purple right at the IV site on her ankle. I'm hoping that starts to clear up soon.

 We had the normal appts between cardiology, pediatrician, and ophthalmology. and cardiologist requested for us to be seen from ID. So Lyla got her blood drawn. The ID Dr's were pretty confident (still) that these frequent fevers/illnesses were due to her age, cardiac condition, and Down syndrome. But the tests were borderline, so more blood was drawn for more specific diseases and now we wait.

  We did take a nice trip to Lake Tahoe in between surgeries and it was really nice. (aside from the mile hike down to the beach) Lyla slept most of the time on a blanket on the sand. I think the sound of the waves lulled her to sleep. Parker and Mabel had a great time too. Mabel wanted to be buried in the sand and Parker wanted to swim out and explore the Lake with Daddy. It was something that we really needed as a family.