Sunday, November 29, 2009
They did a chest x-ray that showed no pneumonia, took some blood, checked her oxygen saturation, and decided she had croup. She was given a different breathing treatment and a steroid to help with the swelling in her throat and then observed for several hours. We were finally sent home with instructions to come back if her symptoms got worse.
She felt better last night and actually gave us a few smiles but woke up this morning feeling and sounding pretty bad again. She’s thrown-up twice today and keeps arching her back trying to breath. We’ll follow-up with the pediatrician tomorrow but there isn’t a treatment for croup so we just have to wait it out. Sometimes, if it’s not one thing, it’s 50.
Kaili was doing a great job taking care of her sick sister today. She wanted to hold her and give her toys to play with.
So we called Apria, the company that supplies it, at 11:00 at night and explained the situation. After getting several calls from different people, the branch manager called at about 2:00 in the morning to ask me why we hadn’t called sooner and to tell us that the driver couldn’t come to our house, even though he lives in the same area as us, and we would have to drive an hour to meet her at the office.
Knowing we’d fall asleep at the wheel, we told her that Averi would have to go all night without food and we would come meet her in the morning. The next morning, she called when Dan was 5 minutes late and told us she was just going to leave the cord on the door. I know the problem was my fault but it’s her job to deal with it, without being so rude.
Later in the week, on Thanksgiving, we were over at our friends’ house when her pump stopped working. I called again and we realized that the pump was stripping the tubing so that it couldn’t push the milk through. I felt bad making someone come out on Thanksgiving so we waited until we got home, put a new bag in the pump, and someone brought us a new pump the next day. Unfortunately, the new pump doesn’t have a timer on it like the old one did, so we keep having to prime air out of the tubing. Hey, at least it’s working and they brought it to our house. :)
She kept using the significant word and then told me that she wanted to try taking Averi off of breast milk again and putting her on a prescription formula with absolutely no allergens for three weeks. In the mean time I am to continue not eating dairy and soy and just freeze all my milk. I was devastated! The doctor then told me that she would put us in contact with the social worker because the formula is really expensive and insurance won’t cover it at all, and you know when a doctor says it’s expensive, it’s expensive.
Elecare then walked into our lives at $50 out-of-pocket for a can that will last 3 days.
The doctor then explained to me that sometimes with the kind of surgery they did the heart can get a weak spot or another little whole. He said he didn’t hear anything but that he wants Averi to come back in 6 months for a sedated echo to make sure that everything is working exactly how it is supposed to (the sedation is just so that she will hold still so they can get a really good picture).
A few days later we went to ENT to follow-up on her laryngeal cleft repair. He said she looked fine and that her throat should be pretty much healed up by now. He will get back to us after her swallow study to let us know if she can start trying to eat again.
Monday, November 23, 2009
I’m not one of those mom’s that can’t handle watching her child get shots, which is a good thing because Averi has had her fair share of needles being stuck in her. However, there is one immunization that has to be taken orally. Averi has had it twice before and done fine with it, but that was before she had her throat operated on and was told she couldn’t eat for 6-8 weeks.
When I asked him if it was okay for Averi to take it, the doctor said that it couldn’t be given through her J-tube and that it was a small amount of medicine that was really important to get, so the nurse gave it to her. We then spent the next 20 minutes trying to get her to swallow 1 milliliter of liquid.
As she screamed, coughed, choked, gagged, and tried to swallow, the nurse lost all composure. She left to get the doctor twice, repeatedly said “God bless us,” and kept looking to me for comfort. She even told me that in the 22 years she had worked there that had never happened to her before. Had I not been used to Averi behaving that way, although not quite that bad, I would have been in tears by the time I left that office.
Question for self: Isn’t the nurse supposed to tell ME that everything is going to be okay and not to worry?
The biggest thing was when I was told that the weaning process was over and Averi was officially done with the apnea monitor. I have to admit that it’s nice having one less thing to lug around and I love being able to put lotion all over Averi without worrying about getting it where her electrodes go. I think I had to write that in hopes of convincing myself that I don’t occasionally worry about her and miss the monitor. =P
In less controversial news, Averi is now a whopping 12 pounds 9 ounces, about the 40th percentile on the DS growth chart (yes, they have their own growth charts). She started at about the 20th percentile so she is chunking up quite nicely. The dietician said she should be growing at a rate of about 15 grams per day and she is currently chubbing at 23 grams per day. That being said, she finally lengthened the time between upping Averi’s feeds for the first time ever.
The nurse practitioner showed some concern that Averi hasn’t had a PT evaluation yet so I will have to ask her Early Intervention Specialist (the free one that comes to the home) about getting one. Finally, Averi got her H1N1 shot.
We’re always there for a long time and I’m so grateful that Kaili is finally 3 so I can drop her off at the Sibling Clubhouse for free and she can play to her hearts content.
Thursday, November 12, 2009
Wednesday, November 4, 2009
We arrived at the hospital yesterday, dressed our little (if you can describe someone with chub as little) baby in a hospital gown and matching pants, and once again said goodbye at the OR door.
The GI doctor was the first to come talk to us. She said the endoscopy went well and that she didn’t see anything that looked out of place or damaged more than would be expected on a baby with a G-tube. She also took several biopsies which would cause some small amounts of blood in Averi’s stomach for several hours.
Next, the audiologist called us. Averi’s ears were cleaned really well and tested for fluid. No fluid was found and they performed another hearing test. As we already knew, her left ear is completely fine. Averi’s right ear, however, didn’t respond to the stimulation at all. Her hearing loss is so bad in that ear that hearing aids won’t help. The ENT told us later that we can do a scan in a couple of years and have the option of using a very unique hearing aid that amplifies the left ear’s hearing to the right side. He also explained that unilateral hearing isn’t going to slow her speech development, she’ll probably sleep on her good ear to drown out noise (she already does), and we won’t really notice it in everyday activities, just when trying to whisper or talk in a loud environment.
Her breathing sounded bad when she first got out so they gave her a breathing treatment.