Here We Are Again…

Well, we didn’t get to stay away from the hospital for as long as we were hoping. We thought after Addi got her g-tube, we would get a nice reprieve from spending all our free time at Akron Children’s. But, the universe had other plans. I had some lovely respiratory issues last week (cough, tightness, congestion, fever). It took me about a week to get over it and I have been worried sick ever since that the girls were going to get it. (Can you say self fulfilling prophecy?). Addison was coughing a little bit on Monday and Tuesday, but nothing major and was otherwise acting fine. Wednesday, she started to go downhill. She was very congested, she was coughing a lot, and she was sleeping a lot. When she was awake, she was fussy (very unlike herself). Her temperature ran low all morning; she never runs very high, but it was low even for her. She looked pale and sounded like she was having a hard time breathing. So we decided to take her to the ER to get checked out. And it is a good thing we did. She was a little bit wheezy when we first got to the ER, but it seemed like the longer we were there, the worse her breathing was getting. Her oxygen levels started to drop a little bit, so they put her on regular oxygen. That didn’t really seem to help, so they decided to use vapotherm, which lets them control the flow and concentration of oxygen (right now she’s on 40% oxygen and 10 liters; I know that will mean something to some of you). They did a chest x-ray, blood and urine cultures, and swabbed her poor little nose for every respiratory virus in the books. Since she required so much oxygen she got to be admitted to the ICU instead of a regular floor. She had her whole ER team worried for a little while.
The chest x-ray suggested that she might be in the very early stages of pneumonia. Her flu and RSV swabs were negative. Her urine looked good. They think she probably just has some type of viral infection. With all her chronic problems, she doesn’t have a lot of reserve left over to fight it off. So, we are basically just doing supportive care to help her through it. She’s on IV fluids, an antibiotic, a steroid, and an albuterol inhaler. They are not feeding her right now. At this point, it is kind of a wait and see what happens situation. The doctor said it is possible that this will be the worst she gets and it is also possible that she will get worse before she gets better. He said these viral illnesses tend to peak around day 4, and we are just now going into day 2. Hopefully, she doesn’t get much worse. I would hate to see her on the ventilator again. This vapotherm is causing enough flashbacks to our time in the NICU as it is. She had a fairly quiet night and was able to get some rest. Her breathing was up and down through the night. She will have a few minutes where it is normal, and then it will go back to rapid and labored again. At least she was able to rest, and she seems to be holding her own so far. We will see what today brings. I definitely see lots of coffee in my future. Thank you all for all the thoughts, prayers, and positive energy being sent our way. I’ll let you know how things are going later today.

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cmathes10

Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.

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