Home Again, Home Again!

We are home! Thank you everyone for your thoughts and prayers-your support was wonderful during our disappointment of being admitted again. And your prayers helped bring us home!

June acquired croup at the end of last week, which was disappointing since we have been saying no to visitors, washing our hands until our skin falls off, and changing clothes three times a day. Thursday night she had a barking cough and did not sleep well so Jason took her to the doctor Friday. We were given five doses of a steroid but told we should only need one. After four doses over the weekend, we called our pediatrician again on Tuesday. Since June should have been better, he wanted us to check in with surgery to make sure there was not a problem at her surgery site, for example, a constriction. We were able to get an appointment that afternoon, so I drove her over to Peoria.

We met with June's primary surgeon and the two nurse practitioners we have worked with often. June loved all the attention and praise she got about eating, but as we were talking about what was going on, her labored breathing was getting worse. She was working so hard, you could see the muscles around her ribs contracting, and she was getting very pale and turning purple around her feet. When they put pressure on her skin, the color (indication of blood coming back into the area) was returning very slowly - this is called blanching. 

They decided to admit her, and her doctor wanted to go ahead and do a swallow study to check out her repair sites to make sure she hadn't developed another fistula (obstruction) since June has proven to produce the unexpected.

Throughout being admitted and giving a rundown of June's history, they decided to give her some fluids to make sure she wasn't dehydrated since she hadn't produced a wet diaper. After a bolus of fluid, she still had a dry diaper so she continued to get more fluids throughout the night to rehydrate her. She was very dehydrated, but by mid-morning she started catching up. They checked her for MRSA since she had an infection while in the NICU. They also did a deeper swab of her nostrils to check for other respiratory infections, which came back positive for rhinovirus.

Rhinoviruses are the most common viral infections that are the causes of the common cold. Not typically something a child is hospitalized for, but in June's case, with her complicated medical history and trouble breathing, they wanted to keep her overnight. It also means isolation (and I had just been telling one of our NICU nurses it was nice to not worry about isolation when our nurse came in to tell us-mental head slap.)

June had her upper GI this morning to check how liquid flowed through her GI track. The good news is her esophagus is wide open so we do not have to worry about a dilation procedure for now. It is something they will continue to keep an eye on as she grows and starts to eat solid foods.

Jason and I learned how to replace the G and J tube in case her's ever gets ripped out. I never thought I would be learning to pull tubes in and out of holes in my daughter's stomach and small intestines. When we pulled the G tube out to replace it, stomach contents went shooting everywhere since she had just eaten. ( Needless to say, we now know I jump and cry out when fire alarms go off or stomach contents go shooting!) 

In order to go home, June needed to eat successfully. Her first feeding did not go well. She aspirated (breathed the milk into her airways) three times and had to stop nursing because she was choking and gasping for air. Luckily, the afternoon feeding went much better. They asked if we felt comfortable taking her home, and we were more sure! We were sent home with a nebulizer to give June breathing treatments to break up the congestion in her lungs.

We got excellent care-it's just different because they don't know all of June's quirks. In the NICU we were comfortable going home to shower, sleep and see Sawyer because everyone knew her (June made sure of that). But no one knew her history upstairs. Our NICU nurses would be proud of the thick, beautiful (that is quickly filling up) binder I brought with a copy of her medical history ready to go ;-). I now know God blessed us with June because he knew I had the OCD organization skills to handle her medical needs! 

Thank you again to everyone who reached out or prayed for us. Now that we are home, we definitely want to stay there!