Roller Coaster Ride

We have definitely been on a roller coaster lately and right now we're on a loop that goes upside down or perhaps one of those corkscrew parts that go around a few times. Also since last Monday I have been making a lot of beautiful scrapbook cards and pages, mostly featuring pictures of Emma. It's been a great way to pass the time in the hospital, but also a good distraction on sadder days.

At the beginning of last week things were going really well and we had begun the process of getting Emma flown back to Winnie Palmer Hospital in Orlando. However, on Thursday when they did another bronchoscopy and CT scan they saw that she had a 3-4mm hole (or rip or tear) in her trachea/ windpipe tissue, which is so thin already, only estimated to be 1mm! Dr. Green told us that the best hope would that the hole would heal on its own, but if she got a really bad infection in her chest called mediastinitis then they might have to open her back up and possibly take out the 3D splint that is sutured around her trachea. The word "unsurvivable" was used and I began crying. The nurse, Sara, even looked like she was getting teary-eyed from the thought of us losing Emma. They thought the hole was possibly caused by the cuff (tiny balloon at the end of the 41mm trach piece) rubbing against the tissue and slowly creating a hole.

Since they decided on Thursday that the hole should be fine to heal on its own -but probably taking about two months- Michael flew home to Florida on Saturday so he could go back to work on Monday. However, on Sunday they saw on an X-ray that Emma was getting more air in her chest (she just had a few tiny air bubbles before that they were not too concerned about). Dr. Green and his team thought they might have to do that big, possibly unsurvivable surgery the next morning (he has never had to take out one of the 3D splints before), so he suggested that Michael fly back up to Michigan because he knew Michael wanted to be at the hospital for that. He got back in the room with us around 11am on Monday morning. Thankfully by then they had come up with a less evasive plan and were able to put in a tiny pericardial drain in her chest (what I refer to as an air tube). I was thrilled with an easy, helpful solution. It didn't sound like a big deal until one of the doctors asked permission to give Emma chest compressions if needed. We said yes, but she did great and did not have any issues during the procedure.

The plan after getting the air tube yesterday was to just wait and see how she did. They would keep checking to see if she was getting more or less air in her chest. Part of the issue is "how do we prevent the air tube suction from bringing in the same amount of air in from her ventilator?" They turned her PEEP (ventilator pressure amount that keeps her lungs open) down from 13 to 12 in hopes that it would help the trachea relax and then scar tissue would eventually fuse the hole. But that could take a while to work, so they are going to keep checking on it every day.

Emma has been on an antibiotic called Merapenum for most of the past four weeks, but over the weekend her while blood cell count was almost double what it should be, meaning her body was working really had to fight off an infection. The normal amount for her to have is 12,000 and she had 23,000! The Merapenum fights a lot of different bacteria, but not everything, so they added Vancomycin back on and that helped a lot because the next day her white blood cell count was back down to 13,600. Yay!!

Last night we went to sleep peacefully, but were woken up at 4:30am when my phone rang. We had been so happy every morning without receiving a phone call in the middle of the night, but this morning I specifically remember saying "Uh oh" before answering. They said the scheduled X-ray showed that her right lung had collapsed. I guess it was not super unexpected since they did tell us that having too much air in the chest can compress the heart and lungs and cause issues, hence putting the air tube in yesterday. They quickly put in a chest tube (inserted on her right side, close to under her armpit) to help keep that lung open. She has always had more problems with the right lung, which is why she does not do well laying on that side. Before Christmas Dr. Green even talked about maybe removing the top portion of the right lung during her 3D splint surgery, but did not end up needing to do that. I wonder if he will want to remove it now?

When Emma gets crabby anytime she is "bothered" either by the nurses needing to draw blood, or give her the blood clot shot, or her own body issues such as having a dirty diaper, or a lot of gas coming out of her G-tube prolapse, being sweaty, etc. she cries and gets High Peak pressures in her ventilator. The doctors want as less pressure as possible (33 or less is preferable- it often gets up to 70 when she cries), so they are going to keep her sedated today and maybe even for the next few days, as well as adding a low dose of paralytics if needed. Keeping her calm puts less pressure on her trachea and lungs, which should help the hole heal faster.

Those are all of the big updates for now. They put an NG tube in her stomach through her nose over the weekend to help release pressure and gastric fluid so her stomach isn't as distended and pushing against her lungs. I think this was a great idea because that means more fluid and gas is slowly coming out of the tube instead of her often "farting" through the G-tube prolapse, which almost always causes her pain. They have continued to slowly wean the medicines when they can- not every day- but usually give her Tylenol and Versed as needed, which she responds really well to. 

The roller coaster of medical issues translates into a roller coaster of emotional issues. Luckily somehow Michael and I are usually either both viewing things positively or at least one of us is positive. I'm the positive one right now, while Michael is feeling sad about the constant new issues, and we both agree that the more issues that pop up, the harder it is to stay positive. But I absolutely love when people tell us how strong we are and how great of a marriage we have. (Words of Affirmation is my Love Language.) I cried on Thursday night thinking about going the next two months without Michael in Michigan, so I'm glad to have him back here, even though it is on less than desirable circumstances. We make each other laugh a lot, which I think has been so helpful. One night a couple weeks ago when I was in a "blah" mood, he told me to stand next to Emma's crib with him, he put his arm around me and which we were watching our daughter sleep, he said, "This right here is everything you need. On the count of three we are going to laugh." My fake laugh quickly turned into a real laugh and he asked me if I felt better. I did. I actually read something that said your body doesn't know if you think something is really funny or not, but the act of laughing still releases the same endorphins. Michael and I also thank and compliment each other often, and tell the other our favorite things about their personality on a daily basis. I recently wrote two lists about what makes Michael the best husband. One being more current (52 reasons), and one with a list of why I first fell in love with him (20 reasons). I know the list will keep growing too and I look forward to it! 

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.

Our PICU Christmas

   Emma's first Christmas was such a good one considering it was spent in the PICU. It was our third week in Michigan at Mott Children's Hospital, and was the first white Christmas Michael and I had ever experienced which made it extra special. We have been staying at the Ronald McDonald House and two times we were able to visit Santa's Workshop there and pick out and wrap one toy for Emma each time. There was another Workshop inside the hospital (who knew Santa had so many locations?!) and there we got to pick out one pillowcase, one blanket, and three toys!!

   On Christmas Eve I felt like Emma's room was too boring and did not have enough festive spirit, while some of the other kids' rooms were decorated. There is a baby who is in one of the small beds that Emma was in when she was born before she was in a crib (Michael found that it is called a Giraffe OmniBed) with a heat lamp over it. The lamp had big string lights around it that looked pretty in the dark room and jelly window clings that said "Merry and Bright". Another boy had several big paper 3D stars hung along his window. Emma's nurse, Gracie, brought us a handful of construction paper, paint, scissors, and two wooden blocks in the shape of a Christmas tree and a reindeer. Michael put a Christmas music variety on his phone which I later switched to all Glee versions. He cut out the tree and painted bobbles on it. I cut a smaller tree and painted white snow on the branches. Two weeks prior, one of the night nurses (Bridget, our favorite who recently signed on to be one of Emma's primary nurses) cut out five snowflakes and strung them up on the window with ribbon. We pained the wooden pieces and I set out the cards that we had received in the mail by my friends and family. We were ready for Christmas! That night we set out milk and almond cookies for Santa. Maybe next year Emma can help us, but this year she fell asleep pretty early.

   On Christmas morning we were surprised to find a big bag of goodies at our bedroom door in the Ronald McDonald House. We got things like a blanket, winter hats, an airplane neck pillow, and gift card to Target. Michael was thrilled to find a relaxing coloring book and colored pencils in the bag since he had talked about wanting to get that to keep himself busy during Emma's big surgery. When we got to the hospital, we took pictures of Emma's presents under the "tree". The milk and cookies were gone and Emma was still asleep when we came in her room at 9am. We were surprised that we also got more presents from the hospital. They were big girl presents including a board game, her first Barbie, and a gift card to Meijer (it's like Walmart). Nurse Gracie was working again and helped Michael get Emma's red Christmas dress on for pictures. Aside from that day she has not worn any clothes while we have been in Michigan. She has more tubes and wires here, so it's easier not to bother with it. One of her favorite toys was a plush deer that Michael made tickle and kiss her that morning. She really loved that and we got a bunch of super cute pictures and videos before eating breakfast. She would not stop looking at the deer most of the time even when it wasn't laying next to her in bed. We had to wait for the respiratory therapist to be available before we could move Emma into Michael's lap for pictures while opening presents. Emma seemed tired by then and wasn't smiling anymore, but she stayed awake for 30 minutes until we were done and then fell asleep in his arms.

   The gifts from Santa included the deer, plus several learning toys that she might not be able to use until she is a little older, but we still take her hand so she can feel the shapes of the blocks and see the different colors or press the different parts of the turtle shell so it plays various songs. She got a couple more stuffed animals and clothes from a couple of my friends, as well as a few gifts for ourselves from Michael's relatives. Michael and I did not exchange gifts, since we are just using our money for food and groceries, and sometimes splurging on warmer clothes. Now we just have to figure out the cheapest way to get all of her toys back home to Orlando in February since we all flew up here.

   In the afternoon we went outside in the snow for a few minutes. Michael wanted to go for a walk, but it was way too cold for that. When we got back to Emma's room (where we stay for most of 12 hours every day except to get food or coffee from the cafe, unless it's warm enough to run errands) the nurse made us hot chocolate! I held Emma later in the evening while we watched a movie and she took another nap. I kept wondering what we would have done differently to celebrate Christmas if we had still been in the NICU in Orlando, but I'm so glad that we got the opportunity to celebrate in Ann Arbor this year!

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Edit -later in the year (adding more pictures!)