Saturday, August 8, 2015

Suck, Swallow, Breathe, Repeat : Back to Working From the Home Office

I am so grateful to be home washing bottles in my own sink and not in the bathroom sink at the hospital!
Having a 39 day old baby in the hospital was humbling. When you have an army of medical professionals administering medicine, making decisions, monitoring behavior, ordering tests, and checking up on every skin irritation, diaper, and bottle your baby has or touches you start to lose your confidence in your ability to successfully handle your baby on your own.
They did blood work, and a nasal and throat swab. All the common respiratory viruses that they tested for including pertussis (which several doctors said her cough sounded like before the test results) came back negative. The CF specific sputum culture that we were waiting on to see if pseudomonas was growing came back with “no growth indicated” after 3 days of growth time. The official reason Ruby was in the hospital was labeled a “CF exacerbation.” The doctors assumed that the baby would grow pseudomonas because Maelee grew that in her July throat culture and is treating it now. Ruby was protected from it though at this point. With lots of prayers from friends and family her cough was able to be significantly reduced to scant and mainly centered around when she eats.
Before we left there was more talk of potentially the whole problem being started from aspiration. Potentially Ruby’s “suck, swallow, breath” reflex got switched around and she got some fluid in the lungs which manifested as the spasmy cough which induced the vomiting. A swallow study to see if that is the case will be done soon. It is common for babies to have swallowing problems and is not related to the CF, but adding it onto the complications of needing enzymes with all food and her thick mucus it becomes another layer of complication for her to work through each day. It may of also been just a virus so time will tell.
In the mean time we continue to think about the things we learned from the hospital stay, and the blessings we received.
We are extremely thankful that my Mom was able to be with the other 3 kids while I stayed with the baby and while Frank worked. It would have been very difficult to leave Ruby in the hospital alone.  
Despite all my best efforts the 3 days before the hospitalization were awful in regards to Ruby’s feedings. I would try every feeding position I could think of to help her not start to cough and vomit when she ate, but without success. I ended up doing something I never had to do with the other babies. I bought fancy bottles. {I wasn’t able to nurse Ruby for very long. She was struggling from the beginning to nurse and be satisfied. It was different from the other 3 kids before her and very exhausting. I began to pump everything but didn’t last long doing that. So she had been on bottles for a couple of weeks.} I had been using generic bottles, but I was so worried about her I was ready to try anything to see if I could make eating easier.
The day before she was admitted to the hospital I discovered Dr. Brown’s bottles worked really well for her, like significantly better than anything else she had used. What a blessing they were to have them with us in the hospital.
Our pulmonologist said to be at PCH after 2pm on Thursday and our room would be ready and we could bypass the ER. That was a huge blessing.
We had excellent nurses who showed tenderness and expertise as they cared for Ruby. I especially appreciated the kindness of the respiratory therapists that came into Ruby’s room twice a day for her chest percussion therapy and breathing treatments. They all lovingly pounded on her chest and back and sucked the snot out of her, fawning over her the whole time. They all happily answered the questions I peppered at them about pediatric respiratory care, “shop talk.” One night I had turned out all the lights and was trying to get Ruby to sleep before her 10pm IV antibiotic would be given. There was a knock and in the doorway this seemingly massive man stepped in, all gowned up. Everyone who came into our room (they even wanted my Mom to do it when she came to visit) was on dropulet precautions requiring paper gowns, gloves, and masks due to the CF. So this man’s height and size seemed extra precarious due to the mask, gown, and gloves – plus it was 9:30 at night and I was dozing.
It turns out he wasn’t the boogie man, but was with respiratory. I had forgotten that they hadn’t come yet for the evening. Since all the past RT had been women I was curious as to how this burly guy would handle working with a baby. Before he was through Ruby had his finger in her hand and was singing to him. He was cooing right back at her. It was very sweet.     
I have to admit I was extremely insistent on coming home as soon as I possibly could, and made that very clear to all the doctors that came in to see Ruby. A squeaky wheel, very. Her cough had significantly improved and she had gotten 8 doses of IV antibiotics. So with all those favorable test results they sent us home with no antibiotics.
We are very aware of Heavenly Father’s hand in our lives. We are also very grateful for the prayers offered on Ruby and our families behalf. We of course did not expect this hospital stay for Ruby, but being able to be there with her while she needed to be, and knowing that because of the fundraiser in April and support from our community, friends, and family we would not have the worry of the money it would cost was great comfort.   

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