A Quick Update

Thursday, 9 - 8 - 11
Day 2 Post Op

Well I will give a quick fast forward to you. Back on Tuesday of last week we were scheduled to admit Cayleigh into UCSF for a sleep study test. This would be a test, along with a bronchoscopy, that the doctors would do to see what issues she had with her airways. The night before, Cayleigh started having tons of snot coming out of her right nostril, retracting *pulling really hard in the ribs to breath* and having short, fast breaths. We made it through the night, putting her on 1.5 liters of Oxygen through her tanks and we got up to the hospital.

Long story short - we kept telling them something wasn't right with her, they took an xray and swabs for viruses and finally figured out we were right, and the same day she was admitted to the ICU for pneumonia. Later that day she spiked fevers of 103, contained with Tylenol. First round of virus tests came back negative. Xray came back with a spot of pneumonia in the bottom right lung. They started her on antibiotics. Wednesday came along, she had a fever of 102 again just in the morning around 6 am, they did a full panel for viruswa which is more extensive and took another xray. This time she had a really dense patch in the top right lung which was deflating the lung. Started her on bipap every 2 hours to reinflate, along with the extensive amounts of breathing treatments they did.

Friday came along, Pulmonary said they got her on the schedule for a bronchoscopy. They would have to sedate her for the procedure and it'd take about 30 minutes. Got ot the preop room and were present for the anesthesia doctor to argue and question the Pulmonary docs as to whether it was safe for her to have this procedure, and to be put under, with pneumonia and having only had a fever less than 24 hours prior. Uncomfortable. Very.

They proceeded with procedure, found that she has severe pharengeal malaysia (collapsed upper airway) and felt a trach would be the very best possible thing to do to allow her to breath. Back to the ICU, they thought they'd be moving her to the floor because she had been doing to well repsonding to treatments, etc before surgery (which they said would be about 2 weeks out). Well, that never happened and they kept her in the ICU.

Fast forward: Tuesday we got a phone call at the buttcrack of dawn from ENT surgeon. They were going to be doing the trach that morning. We got up to the hospital and finally got in to the surgery area around mid day. Again, had to see if it was ok with anesthesia to put her under. Benefits outweighed the risks. Surgery was then done and she was back in ICU. She was pretty out of it, on a ventilator and had stitches in her neck and attached to her chest from the trach. We ended up leaving that night to get back to the hotel late in the day with her resting comfortably.
Found out we'd got in at the Ronald McDonald house again before we left. PTL!

Next morning we woke up and went to the hotel we were at to ask about our shuttle to the hospital. The woman (*biting lip*) said the shuttle was over at 10 (it was 9:15). We said ok, she said no, there was no more shuttle for the day until 5:45 pm. the driver was gone. they had no driver. Much chaos later, we then had to pack 8 bags, and a 4 year old, walk 3 big San Fran blocks and partially uphillish to a bus station, board a bus, walk through a building, across the street and wait for a cab which then took us to our present location that is much closer and more accomodating than the hotel (I wont name but was horrible) that we were at. At least, however, we were able to get moved quickly and up to the hospital.

We got up to the hospital Wednesday to find out that our "friend" (I guess you say friend, well we talked to her several times, she kept eyes out on Cayleigh for us when we werent there because she stayed all the time and gave us friendly tips navagating the hospital ins and outs) Chris, who had a son that had Down Syndrome and had been having pneumonia, respiritory distress and was on a ventilator, but had battled a fever that wouldn't break (reached 107) had finally gone to be with the Lord just a few hours before we'd arrived. They'd moved Cayleigh into bed 2, instead of the bed 10 she'd been in next to Chris' son, and it was like..that was it. Everything was calm, the ICU was quiet (unlike the day before when we had to wade our way through the crash carts and equipments on standby outside our rooms in case Chris had problems just so we could wheel Cayleigh down to surgery) and there was the cleaning lady, mopping an empty room. Beds 9 and 10s monitors were off. It was very, very sad. Please lift her in your prayers tonight.

Cayleigh did pretty great secretion wise 1 day post op, (*yesterday), but today she had alot of gurgly sounds and secretions she was coughing up which requires suctioning. She's still getting pain meds... I hate leaving her there. We both do. It's hard having your heart in so many places. My older two children are with my mom and dad while they are in school this week. Juliette is with us and she is clearly having difficulties with the whole thing. Its just hard on everyone.

The hospital has BINGO for the kids and siblings every Thursday. We were lifted from precautions today so JUliette was allowed to go to the playroom just in time to play bingo. She sat down at a table originally across from a little boy with an IV Pole. Mind you, these IV poles have bags of medicines, some have urine or blood bags too, and machines, and feeding stuff. They are tall and take up room and are a little scary looking. But she sat and smiled at him. Then, two other childfren came in who, too, had IV poles. The one little boy had an open gown and something on his chest. I looked at her little face and whispered to her that I'd go sit with her in another area, and so she came with me. It's funny, you know, how these kids handle it. The kids who are sick and their siblings. We think its hard for parents, but its hard on them too. Some might say to shield them from it, that a hospital is no place for kids. I disagree. I think our children will be better from it. That they will appreciate their lives just a little bit more, that they will learn that other people are different than them, and that you can be friends with someone even if they are sick. It's amazing how the Child Life gal came in and talked to JUliette pre-surgery. She showed her a baby doll who had a trach. Juliette picked it up and just loved on it, wanted to keep it. As we were talking, i glanced over and saw Juliette blowing air into the trach on the baby. I smiled because she'd just been told thats how the baby breathes. Then they showed her a picture of a little boy who had a trach wit hthe tubing. It wasn't scary, so I ok'd it. What was Juliettes reaction? "Hey, thats Elmo! and a Zebra!" she saw the toys. Quick reaction, not even hesitating. I asked if that is normal. She simply say "sure it is, they see what they can familiarize themselves with first". That makes sense.

And so, with my baby with stitches, a tube in her throat and wires and breathing machines and all this crap - I just try to take Juliettes approach and just see Cayleigh. After all, she's what I can familiarize myself with... everything else is just stuff.