Feb 25, 2008

Still Swollen

Some of you knew we had a scope scheduled for Ainsley the Monday she was discharged from Children’s for RSV. It was rescheduled for last Friday and we went. Unfortunately the swelling was only ever so slightly better, and cobblestoning was still present on her epiglottis. It was disappointing but not really surprising. So that confirms we will be traveling to Cincinnati 4/6-4/11 to get a second opinion with the world’s best otolaryngologist. Here’s his bio: http://www.cincinnatichildrens.org/svc/find-professional/c/robin-cotton.htm Please pray (or send positive vibes) that she doesn’t get sick and can’t go and that this doctor will have some ideas on how to get that swelling to go away so we can get this trach out.

Feb 12, 2008

That's What I Get For Bragging - RSV

Lately I’ve been bragging about how remarkable it is that Ainsley has been so healthy. Kids with trachs are more likely to get sick and far more likely to end up in the hospital than “regular” kids when they do get sick. Even her doctors were surprised she had never been hospitalized other than for a surgery. So of course I was tempting the gods. Adrian brought home what seemed to be a cold and passed it to Steve, passed it to me, passed it to Ainsley. Only Evie was spared. It seemed fairly mild until Thursday when she developed a fever of 103. It still seemed she was going to be okay. The fever would come down some with Tylenol and she was still oxygenating at 97-98% or so which is still really good even though it’s a little low for her.

Then Friday evening I took her into the bath to give her a chance to move her legs with some support in the water (our newest form of physical therapy). When she was laying on the bath mat I saw that her chest was retracting (caving in with each breath in the sternum area) slightly when she breathed. Later we gave her a feeding and layed her down on her tummy to sleep like always. About 9:00 she started to cough a lot and her oximeter started to beep, she started to throw up as I was turning her over to suction her. I could see that her lips were blue as well as her feet. We tried suctioning several more times and things got worse, and her oxygen levels started to drop into the 80’s then 70’s. After a few minutes we tried giving her some breaths with the resuscitation bag (that was the first time I’d ever had to do that) and giving her oxygen. The oxygen helped bring her oxygen levels up some but when I went to put her in the crib her eyes sort of rolled back and she became non-responsive even though her eyes were open. I was afraid she was having a seizure so I asked Steve to call 911.

Earlier that night some person parked on the wrong side of the street and the road ended up getting blocked off because another idiot parked next to that car. All night long people were driving down the road and getting stuck right in front of our house and honking their horns. So of course this would be the one night we’d have a medical emergency. So I’m watched for the aid car, hear the sirens approaching as they then drive PAST our house because they can’t park normally because of this car. The lady came out about then as the ambulance is pulled up behind her car, waiting for her to get in and pull out. Aaarrrggghh. Once they get in the house we go over her medical history and give her some time to see if things would turn around. We decided it would be best to take her to the hospital since she was requiring oxygen and was not really responding.

They did a chest x-ray and saw something they thought perhaps was bacterial pneumonia caused by aspiration of vomit. She had a high number of new white blood cells which tends to indicate the body is fighting off a bacterial infection. They also took a sample of her trach secretions to do testing so we were waiting for those results. We had to wait to get a room because the hospital was full and were finally admitted at 3:30am. Steve stayed home with Evie and Adrian and I called to give him updates.

Evie and Adrian were a little frightened while Ainsley was desatting and while waiting for the ambulance but once it got here they were excited to get to go in it. The two ladies driving the aid-car were really nice and reassuring. They got a little scared again when they drove Ainsley away but it helped that Steve stayed behind and they went to bed like normal. Evie, being her usual artistic self during this time made me a good night note and stuck it in my pocket as well as drew me a whole 8 ½”x 11” picture of us hugging to take with me to the hospital.

It turned out that the secretions tested positive for RSV and after another x-ray they were able to conclude that she did NOT also have bacterial pneumonia nor viral pneumonia. We really don’t know if she had a seizure. She does not have a history of seizures. I think the whole thing was just a bit much for her and she was kind of stunned.

We took her off the oxygen Sunday night and watched her. Monday she still had the chest retractions because she’s having to work harder to breath but she was oxygenating in the 90’s so we were able to leave the hospital and we got home at 8:00pm last night.

Here’s a little info about RSV that I copied from the tracheostomy.com website:

What is RSV?
RSV stands for respiratory syncytial virus, the most frequent cause of serious respiratory tract infections in infants and young children. This is such a common virus that virtually all children have been infected by RSV by the age of 3. In most children and adults, RSV results in a respiratory infection that is not distinguishable from a common cold. However, for infants and children with underlying conditions, such as prematurity, lung, heart and immune deficiency diseases, RSV can be a very serious respiratory illness requiring hospitalization.
Avoid crowded places and avoid contact with people who have cold symptoms. When a family member is sick, extra precautions must be taken by washing hands often and preventing the spread of infectious secretions on tissues and objects.

Today she’s tired and still working harder to breath than normal but is oxygenating at 98% without oxygen so I think in a few days she’ll be much better. I’ve got it too and am hoping to get some rest now that we’re home.

Even with RSV the girl is happy!

Feb 9, 2008

Had To Call 911

Hey all, I just wanted to give you a quick update that we had to call 911 last night (~9:00 pm) because Ainsley was having trouble breathing. She had a bad fever and we could not keep her sats up without giving her oxygen. She looked very blue and was very lethargic. The medics (ambulance and fire) arrived on the scene and it was determined after about 20 minutes that she seemed stable but should go to Children’s, so we got her loaded up in the ambulance and they transported her. I stayed home with Evie and Adrian and Susan followed in the van.

Ainsley is doing a bit better today but they believe she has a bacterial infection in her lungs. It’s possible one of the recent times she threw up (a frequent occurrence) might have got down her trach and into her lungs. They want to keep her for probably two more days and currently they have her in isolation, which is actually a good thing since you get a private room that way. J However, it also means she can’t have any visitors including Evie and Adrian.

Were going to make a trip over there this afternoon so I can deliver some clothes but most likely she won’t be back home until sometime Monday. Other than that, all is well and everyone is doing fine.