Back to ICU

I haven't had the opportunity to post since Teryn's Nissen revision surgery and now there is quite a bit to update. So, first things first...
The Nissen revision surgery went well. They were not able to do it laproscopically so they had to do an open incision on her abdomen. The surgery took quite a while because 1) it took an hour to get iv access even in the OR. They ended up getting an ej in her neck and also a backup on her scalp. 2) She had a lot of scarring on her stomach from her previous surgeries. However, it went well with no complications during the procedure.
The surgery took place on Friday and she was given the weekend to let her body rest and recuperate. Sunday evening James had to return home because he couldn't miss anymore work. Monday morning we began feeds with pedialyte at a rate of 10 mls per hour and a goal of eventually 40 mls an hour. She seemed to be tolerating well and by bedtime we were up to the goal of 40mls an hour of pedialyte. That evening she did retch once but never vomitted and all in all seemed to be doing okay other than some leakage around her tube site. We had the on call surgeon come in and I told her I thought the tube was a little loose and did not have enough water in the balloon that holds it in her stomach. We checked it and that was definitely the case so we put a little more in. Tuesday morning we were given the go ahead to switch from the pedialyte to her formula at the rate of 40 and if all went well then we could be discharged Wednesday morning and could gradually resume to her regular feeding schedule at home. I was a little apprehensive about the formula going at 40 since that is the highest continuous rate she has ever had even pre-surgery and her formula is thicker than pedialyte and will make her feel fuller. (The rate of 40 comes from he nutritionist guideline based on her weight.) By Tuesday late morning she was starting to show a little discomfort but was not vomitting. I was venting her tube to let out any excess air and each time would get quite a large amount of gastric fluid. She would whine and roll side to side in the crib like she was uncomfortable but within seconds of me venting she was calm and resting. Tuesday morning during one of these uncomfortable episodes she had her feeding tube wrapped around her foot and as she was kicking she pulled it out. We put it back in but not before mostly all of her stomach contents had leaked out. Throughout the remainder of the day he seemed to be more and more uncomfortable and her tube site was leaking profusely. If she was laying or sitting in the wrong position she would be soaked withing minutes. Basically most of her fluids were either leaking out or were having to be vented.
She continued this pattern of more and more discomfort and a higher rate of fluid having to be vented from her tube. Neither one of us got much sleep Tuesday night, maybe an hour total. Around 1am we paged the on call surgeon. She was still so uncomfortable and moaning costantly. The last time I had vented her I got almost 100 mls of gastric fluid. (At this point we were only putting in 20 an hour.) Her bowels were not moving anything through. We stopped feeds all together but she continued to feel worse and worse. She just had a grimace on her face, whining, and would not move. She did not even want to be moved. I tried holding her for a bit but she even got upset if I coughed or took a deep breath. her tummy seemed to be causing her a lot of pain.
When the surgeons came for rounds at 6am I told them about the night. When they turned on the light and saw how badly she looked they immediately called her main surgeon ( Dr. K) who normally doesn't do the rounds. I had been crying all night at the sight of her. She was pale, gray lips, and gray circles under her eyes. She was lethargic and non responsive to any stimuli around her other than if someone tried to move her or touch her belly. I was even more terrified as I looked around the room at the faces on each of the surgeons. It was obvious they were just as concerned as I was. If they were worried, then I was even more worried. I have seen her in a lot of pain and go through many things but this was by far the absolute worst she has ever looked and probably ever felt.
They had tried to get an iv (to no avail and against my better jusdgement.) It was obvious that she was dehydrated and needed fluids immediately. Dr. K wanted her moved to ICU immediately and a central line started. If they would not let her go up that minute then he was going to start the line right there. He was that concerned. They accepted her right away so I grabbed the one bag I needed and we all headed up. Dr. K insisted on going and making all of the decisions and placing the line himself. Because this is a sterile procedure I was not allowed to stay in the room. So I headed down to gather the rest of my things.
All morning I had been trying to resist breaking down in tears. For some reason I am compelled to appear strong in front of these medical professionals because I want them to value my opinion and not take me as just an emotional mommy. There is no easy balance there. I wanted to call my mommy and receive comfort for myself but I couldn't compose myself for that just yet. I knew if I called right then I wouldn't be able to get any words out. I headed back down to our room on the peds floor and the sweet PCA was already packing all of my stuff for me. She had been in already several times that morning to give me a hug and check on me. When we got up to the ICU floor they were still working on getting her line in so I had to wait outside the unit. I figured now would be the time to call my parents since I couldn't get James while he was at work. Sure enough, as soon as my mom answered the phone I lost all composure again. I wanted my mommy as much as I wanted to be with Teryn and give her comfort. Eventually I was able to relay the information in a discernable manner. Mom was insistent that she was going to receive a good report from me later in the day.
A few minutes later the social worker came out to sit with me since she found out I was alone. Eventually they let me come back. Teryn had received a central line in her groin, a catheter, and a foley vent for all of the excess fluid in her stomach. She also had to receive an IO which is where they infuse fluid into to bone marrow. They were concered that she needed fluid immediatley and could not wait the half hour or so until the central line was complete. Her blood pressure was low so they had epinephrine in an iv ready to go if needed. Once things settled I went downstairs to get lunch. When I returned they were still concerned about her blood pressure and her fever and wanted to start an arterial line. This ones goes in the artery instead of a vein and her blood pressure and temp can be monitored by the second. Another sterile procedure so I was kicked out again.
When they were finished and I returned the surgery team was back. Dr. K was very concerned. He sat next to me and just thought silently for about 5 minutes rubbing his face and head thinkingly. Then he began full disclosure of his concerns. If she did not show some relief from her stomach distension and improvement in her vitals then he sees it as necessary to do exploratory surgery in the morning and figure out what in the world is going on. He headed off to another surgery to return after for a check-in.
When he returned and he was checking her belly she was still tender but he noticed she had a bowel movement. That along with her continuous venting made him comfortable enough to go with another day of observation and surgery put on the back burner.
So how is Teryn now? Her color has improved. She is finally peeing a little. She seems a little more comfortable and a little more aware of her surroundings. She still does not want to move and is still very tender in her tummy but it has become a little softer. She has not had to receive any blood pressure meds. She is about to receive some morphine to help her get a little more comfortable and get to sleep for the night.
How is Crystal? I am better. Not great but better. I have had a crazy headache from the lack of sleep, stress, and crying. But...better.
Please continue praying for us but mostly for Teryn. God is going to completely heal her little body and get her back to tip top shape.