Recovery Detours

Since last week, Emma is continuing to recover brilliantly from her 3D splint airway surgery which occurred on December 27th. We have not had anything big happen regarding respiratory and we say thank you prayers every morning that we didn't get a bad phone call in the middle of the nights from a nurse or doctor. She is continuing her streak of not passing out- today is Day 24 since her ventilator pressure was turned up which helped her airway stay open, and of course now the splints are doing that for her. With that said, we have encountered "detours" in the recovery process as other issues have jumped in the way here and there. 

She was kept mostly paralyzed and sedated from the 27th to the 30th to help her heal faster and safer without moving around. On the morning of the 28th she peaked an eye open and gave a quick smile before falling back asleep. We were told that her heart rate needed to stay around 125-130 beats per minute because if it went higher that was an indicator that she was trying to wake up while still being paralyzed. That was never an issue though. It has actually been more around 109-115 this week. They put a sticker on her arm with little metal shocks that they could attach tiny alligator clamps to (like jumper cables) in order to gently shock the muscle and see how much more or less paralytics she needed throughout each day. One of the respiratory therapists told me that on her ventilator monitor, which had mostly red and blue waveforms, when there is a yellow wave it means something is triggering the vent to give a breath. They couldn't be sure if it was always Emma triggering it, which would also mean she was waking up under the paralytics, but any time during those four days when there were a few yellow waves, they would do the shock test. 

One of the "detours" was the lack of urine output Emma had, totaling only 2ml or less per hour. She also got puffier and was retaining a lot of IV fluid and post-surgery body fluid in her face and arms. At one point her hand was so puffy that she couldn't close her hand or curl her fingers at all even when she did start waking up. They gave her Lasix and other medicine to help her pee. On days that she had very little output, they used a bladder scanner to make sure that she was not full. It took more than 24 hours to see results from the Lasix, but when her urine was back to good output levels, she stopped pooping. It was more complicated to get her to poop since at that point they had stopped her formula feeds, so they had to give suppositories and an enema instead of regular medicine. Two days later that problem was resolved. 

The second detour involved the arterial line they had placed in her left thigh the evening after the surgery. They needed to place this so they could monitor her blood pressure, but they were able to remove it 48 hours later. It wasn't until they took it out that I saw they had stitched the tube to her leg to stay in. I assumed they could have just used a lot of surgical tape. :(  On December 30th the nurse noticed that Emma's left foot was getting cold and had a purple tint to it so they did an ultrasound of her left thigh where the line had been and found a blood clot. Dang it. They began giving her a Lovenox (mild blood thinner) shot twice a day for that. Next week they will do another ultrasound in her leg to see if the clot has dissolved or if she needs to keep getting the shots. One thing I thought was funny was that the ultrasound tech needed to get a different angle of her leg and asked me if I could bend her leg "froggy style". I replied with a quick, "Nope!" Then explained that her knees only bend backward due to her Genu Recurvatum. Also, because she has been given what was a necessary amount of Lasix, her kidneys have had to work too hard and are now considered "injured". They test her creatinine levels daily and did say they have elevated (from 0.2 when we got to Michigan to 0.8 this morning and 0.7 tonight) which is higher according to her muscle mass. So not ideal, but nowhere near the level of needing dialysis. Unfortunately two of the medicines that Emma is on (Zosyn and Vancomycin) can have an adverse affect on the kidneys, but we were just told by the kidney doctor that they have switched the order of Zosyn to Ceftriaxone starting tonight and her Vancomycin is continuing to be weaned down. 

The third detour has to do with her abdomen distention. We aren't sure if it got distended further when her face and arms got really puffy, but we didn't notice until her face and arms went back to their normal size. According to one of Emma's Orlando nurses, her girth was around 38cm at the beginning of December. Over the past few days it has been between 48-50cm. When she does not have her diaper on for changes, she looks like a pregnant baby. 48cm is the length of her whole little body! They have done a lot of tests and scans and sent cultures to see what could be the cause of why so much fluid is in her abdomen (it's called Ascites). It's not in her stomach or intestines so they can't just give her more Lasix to pee it out. Some days her abdomen has felt harder, which is more concerning, and we can tell that it is stretching her skin because it gets plastic looking, but today it felt pretty squishy at 49cm and she wasn't crying when we pressed on her. We have been told that they are considering doing "a tap" which involves putting a needle in to test the fluid as well as removing some of it. They don't want to have to do this because any foreign object entering the body increases the risk of infection. Plus, it is possible that they could remove some of the fluid, but the body thinks it is supposed to be there and it makes more fluid. 

On Wednesday during rounds they told us that Emma's double lumin PICC line in her right arm had started migrating up towards her neck, which is not what they want since it is supposed to be aimed at the heart. So they had to take it out and place a new one in her left arm. They couldn't take the old one out until all of her medicines had been switched to new IV lines and attached to the lines in her left arm. That night I helped the nurse and the Nurse Practitioner remove the old PICC line. My job was to hold Emma's hand and keep her arm straight and down against the blankets. I also had to wear a mask to cover my nose and mouth. She had her head turned away from me, but I could tell she was crying even though, with her trach, her cries don't really make sound- just mousey squeaks sometimes. I kept thinking, "This is not anything I ever thought I would have to do when I was in the first two trimesters of my pregnancy." But here we are, and all we can do is keep going! This night that her new PICC line was placed we noticed that she had developed a splotchy, goosebumpy rash that covered her cheek, ear, neck, and chest area. Yesterday it also was around her eye and she kept scratching it. One of the Infectious Disease doctors came to examine her and confirmed that he simply thinks it is an allergy rash, but we aren't sure what it is from. Unless they used a different kind of ..something?.. during this PICC line procedure, we don't know what else could have caused it since she has been on the same medicines and didn't have any problems before that. She has also spiked a fever (100-103) about five times over the past few days, so they have sent more cultures, but they keep coming back negative. That is good, but confuses the doctors and nurses to why the fever keeps coming back. They give her antibiotics and/or Tylenol (and Benedryl for the rash when it is more noticeable and itchy at night), and then her temperature goes back to normal later in the day. Overall they are not too concerned because, aside from feeling warm, she is not showing any feverish side affects.

On New Years Eve they took Emma off the paralytics and began weaning her sedation. She began waking up so we were able to do more stimulating things such as holding her hand, talking to her, playing with her hair, and giving her kisses. (I took the Baby New Year pictures before the surgery because I correctly assumed she wouldn't be looking too hot for a midnight photoshoot.) She would be awake for a few minutes, then sleep for an hour, repeating that pattern for the next five days. Today has been her most alert day since before the surgery. Today she was awake for about half of the day, taking naps intermittently. She was able to have Speech Therapy come by, but was asleep when Music Therapy came in. 

They have been doing chest X-rays every morning since the surgery and noticed that the rib fractures that Emma had in September finally finished healing, so they were able to begin percussions on her. This involves taking a foam cup instrument and hitting her on the chest with it. It sounds loud, but the respiratory therapist hit me with it on the arm a few times and I was surprised how light it felt. I'm not sure how such a soft tool helps bring up secretions from the bronchi and lungs, but it works well and they suction her trach after a minute or two of percussions. Emma actually seems to like it a lot and does not make sad faces during those treatments. Sometimes she will even sleep through it. Her PEEP (ventilator pressure) has been turned down from 18 to 16 so far. On Monday Emma has another surgery scheduled for a tracheostomy revision, so they will keep her PEEP at 16 until after that. Dr. Green is hoping we can eventually get it weaned down to 8 or 10.