I’m still trying to process this month. The whole entire month. I have spent more days away from home this month than I have at home.
I know I have been absent but there has been a lot going on and several things that I probably won’t share for quite awhile.
Emmie went in on August 13th for her halo procedure. Surgery went smoothly with no complications. After she went to recovery, they sent her to PICU. She had to go there because of the sedation meds they kept her on while she was in traction. We were told to go to PICU waiting room and that we could see her once she was ready. Mark said we waited ten minutes but it felt like an eternity because we could hear her crying (okay, screaming) while they were getting her settled in. The charge nurse came out to reassure us and let us know we could cuddle with her in bed. That soothed my worries about not being able to hold her for three to four days (which actually turned in to more than that).
Once we got to see her, I climbed in to bed with her and grabbed her hands. She calmed down immediately. And that’s where Mark or I stayed for the next six days.
Traction days were long and hard. I had her during the day and Mark stayed with her at night. That way, we were able to also divide up time with the other kids. The time in the hospital was mainly spent soothing her, finding things to entertain her, and scooting her down the bed.
She was on sedation and pain meds. The sedation meds were mainly to keep her calm not put her to sleep. The pain meds helped tremendously when she would get another weight (five pounds in the end) added to her traction.
Whenever she was awake, we would get about ten minutes before we would have to call a nurse to hold the weights as we scooted her down the bed. The weight from the traction and her wiggly self always seemed to find a way to the top of the bed.
By the second day, the nurses and I had decided that the white ceiling was not entertaining enough for a child who was stuck on her back. We quickly dug through my hospital bag and grabbed the gel clings I had. While the nurses spotted me, I stuck them up on the light over her bed. That helped a bit. By day four, my arms were sore from holding up the Kindle Fire we had brought. Child Life Specialists came to the rescue with an iPad on a stand that flipped down for her viewing. That thing saved all of us and for once, I cared not about how much screen time my kid was getting. We passed the rest of the time with puppet shows, stuffed animal kisses, and bubbles. If you’re really curious, Emmie’s go to videos on the iPad were videos about dogs with music included. I think we watched ten hours of 20 Dog Breeds.
She couldn’t eat while in traction because of the meds and her position but she got lipids and tpn that helped fill in empty calories.
Her PICC line was not successful in going in which meant daily blood draws were done quite painfully and often with two sticks before a good draw was done.
Our most memorable events included the iv. Her PICC iv was actually used as a peripheral iv. That just means that it was only used for meds. It was basically a deep line iv. I think on Saturday (days ran together), the iv connections snapped. This was outside her body and caused her no health issues, but it did wake me up and cause a major mess. Meds leaked all over her and the hospital bed. It’s not particularly easy to change the sheets of a baby who has three pounds of weight attached to her head. Our nurses worked for about thirty minutes to figure out exactly what needed to be done. It took four nurses and me to get the sheets changed. We also had a bit of help from the valium. The nurses wanted her to be as comfortable as possible so she got a tad bit of valium to calm her while she was suspended above the bed. One nurse held the weights. One held Emmie’s head while another held her body. That left two of us to quickly take the sheets off the bed and put new ones on. Teamwork. Important.
The other most heartbreaking and painful thing included her iv in her foot. She had two ivs the PIV and then a standard one. This helped her get all of her meds and calories from the tpn and lipids. She started out with the regular iv in her arm but that one came out on Saturday. So, they had to place one in her foot. That iv was for her pain and sedation meds. It worked great. Until Monday. As our nurse was finishing up her vitals and heading out, she happened to look at her iv site. She had already checked it when she came in. But, thankfully, she looked at it before leaving. Emmie’s ankle was red, angry looking, swollen. The iv had come out of her vein. And gone in to her muscle. That meant the sedation meds which were on a continuous drip, had gotten in to her muscles. This could, potentially, cause a pretty serious infection. Thankfully, after a lot of calls to the pharmacist and doctor, it was determined her sedation meds could also be given intramuscular. We stopped worrying about a muscular infection, but, unfortunately, her ankle was deeply bruised and sore. A week later, and she is finally not flinching and screaming when we barely touch it. I think seeing her poor foot swollen and so hot to the touch was harder than the vest. By the time this had happened, we knew the halo wasn’t hurting. We were so grateful, though, for a very attentive nurse.
Emmie did great getting her halo on that Thursday afternoon. She laughed, smiled, and pinched noses through the whole thing. There were lots of loud noises and things going on that she couldn’t see. We were so proud of how brave she was being. She was helped a long quite a bit by a little bit of ativan. It definitely calmed her nerves. After the vest got on, we were working our way out of the PICU and down to a regular room and then out the doors to home.
Nothing made our girl light up like watching her brothers and sisters on skype. She truly loves her sidekicks and the feeling was definitely mutual.
I’ll share a bit more on her hospitalization over the next few days…what the plan is now, and a few pictures and thoughts on the whole thing.