Friday, March 24, 2017

Surgery Update


Let me start with the most important news: WE ARE HOME!!! June was discharged yesterday afternoon - a month after she was first admitted. This was the longest stay we have had since back in the NICU days and triple the travel time. Whew!

Time to backtrack to the day of her surgery and everything that has happened since we've had little time to post much of an update. June's surgery was scheduled for Thursday, March 9. She was put on the schedule for 12:45 (the last scheduled surgery for the day) so our surgeon would have plenty of time to address what needed to be done, especially since this was the first time June's surgeon had operated on her GI tract. We also had no idea how long the surgery would be since they didn't know if they would be cutting her open and performing the surgery laparoscopically. June had a fun morning playing on the 12th floor in the Family Life Center and walking the halls. She started getting hungry, and unfortunately, she started pointing the the cabinet (where she knew we kept the pretzels) and signing for "more food please". At 12:30, we went down to wait in one of the surgery prep rooms. We met with the anesthesiologist and surgeon to answer last-minute questions. They took June back at 1:30. They gave her of dose of "happy juice" so she wouldn't get upset when they took her back. We would get a call from our surgeon's nurse when they made the first cut and then every hour with an update. There was a still a lot of unknown with this surgery, so the update calls were a welcomed relief. At 2:30, the nurse called to say that they had just made the first incision. This incision was at her belly button to insert a camera so that the surgeon could look at her insides. The last hour had been surgery prep and positioning. At 3:30, I got the call that they ended up needing to cut June open instead of performing the surgery laparoscopically (by camera). The incision would run from her naval to her sternum. At 5:00, I got a call that they were starting to close June up, which would take about 45 minutes to an hour.

Waiting to go into surgery

The surgeon came out to meet with me at 6:15 pm. Everything had gone well. June's stomach was on the smaller side but not the smallest stomach she had seen. She was able to pull the stomach up around her esophagus to tighten the opening so that it would be harder for June to vomit. Imagine taking a towel and using your forearms to wrap it up around your shoulders. She also moved the interior placement of June's gastrostomy (G) tube. The button on the surface of June's stomach stayed in the same location, but the balloon inside June's stomach that holds the tube in place was pushing on her pylorus (connection between her stomach and intestine). June had an atresia (blockage) at her pylorus that was repaired in the NICU. The surgeon decided that the balloon pushing on the repair was putting unnecessary pressure on it, and the balloon might be blocking the stomach's ability to drain properly. We also discussed what the future would hold for June. It will be important for June to learn to take small bites (no hot dogs - ever) and wash down the food with sips of liquid. June will need lots of time to eat meals in slow, small bites.

I got back to see a snoozing June at 7:00 pm. We got her back up to the room and settled in her bed. Since they were able to remove the breathing tube, she did not need to go to the Pediatric Intensive Care Unit and could go back to the room we had been staying in. They did, however, give her a nasal cannula because they wanted to make sure she took deep enough breaths and didn't stop breathing because of the pain from cutting into her abdomen. The first night was very rough for June. She was in a lot of pain - anytime she moved or her bed was bumped, she screamed and shook. There were some hours that she screamed out in pain every couple minutes. She was on a continuous morphine drip and had a pain button that I could push for her every eight minutes. Some hours she was able to tolerate the pain with just the continuous drip, but there were several hours where I had to stay up to push the button every eight minutes. June was also very congested, and she started vomiting thick secretions that she would gag and choke on because she couldn't swallow them with the swelling in her stomach or throw them up because she was in too much pain to wretch.


In the morning, our day nurse helped tremendously with getting June more comfortable. She got her pain medication switched to a different narcotic that made a difference in less than an hour. She also contacted the doctors regarding June's respiratory problems. They prescribed breathing treatments every six hours to thin the secretions so June could breath and have an easier time of geting them out of her body. Once June's pain was under control, we got her out of bed and into my lap so we could cuddle for seven hours. The next night was rough for June too. She spent most of the night gagging and vomiting. She had a desaturation of her oxygen levels after one session, so they increased her oxygen and took a chest X-ray.

Each day, we started seeing more and more of our little girl's lively personality coming back. She still struggled with the thick secretions that were lodged in her throat. She ended up with the nasal cannula being put on at night because that is when she struggled the most with breathing. After 48 hours (Sunday), they tried giving her Pedialyte in her G tube. Two bags were connected to her G tube with a splitter - one held the Pedialyte and the other was where excess Pedialyte, gas, and air could escape. All of the Pedialyte ended up in the excess bag, so they stopped feeds. The next day (Monday), they tried again to give her Pedialyte. The same thing happened again; however, after they gave her erythromycin (the medication we give June four times a day so her stomach nerves are stimulated and work properly), her stomach started processing the Pedialyte. On Tuesday, they switch her to Pedisure and started working the rate up slowly. June was also cleared to eat soft foods, such as yogurt, applesauce, mashed potatoes, and smoothies. June didn't eat much but would have a few bites three times a day. We hit 35 milliliters an hour by Friday, and that is where the problems arose. June started having breathing issues and was vomiting again. On Sunday, she was vomiting Pedisure, which she shouldn't be doing because the Nissen was suppose to prevent vomiting. We had been set to be discharged on Monday (March 20), but with the new developments, June's discharge date was pushed back. June's surgeon switched her feeds to her J tube. Since June was expressing interest in eating, her doctor didn't want to suppress that interest if she continued vomiting. The goal is to get her enough calories to continue to grow while taking pressure off the stomach. We also started draining her stomach 24-7.

On Wednesday, we met with June's surgeon. She felt that June was getting close to being ready for discharge. They were planning to keep her one more day (which would be two weeks out from surgery) but were willing to let her go that day if we were comfortable with the plan. We were more than excited and willing to bring our baby home that day. To give you an idea of where June should be, our surgeon said that typically by two weeks out from an abdominal surgery, kids are cleared to eat regular food. June is still on a very limited soft food diet because her stomach cannot handle the stretching at this point. She will also never end up getting continuous feeds in her stomach because the surgeon doesn't think with her stomach size that she will be able to handle it. June receives feeds 20 hours a day to get the calories she needs and can eat foods (yogurt, applesauce, baby food) for breakfast, lunch, and dinner. Her stomach is also drained 24-7. To make matters a little easier (since the last time we were on continuous feeds June was just taking her first steps and now she is running wild with her brother), June now carries around a backpack with her food and drained stomach contents. She actually does really well with the bag and doesn't notice that is on most of the time. We have a long road and a lot of work ahead of us, but the moments that have followed since we brought June home on Wednesday, March 22 is more than worth it.

June loves her new flamingo hat - it is perfect to hide from the nurses:


 Home At Last!


She's ready to roll:



Wednesday, March 8, 2017

January/February Update

As you can tell by some photo posts, June Bug landed back in the hospital. Despite all our efforts, hand sanitizer, baths, changing clothes, and Clorax wipes, the nasty winter bugs got to June. With June's ongoing struggle to keep food in her system, she lost too much weight and our surgeon decided it was best to hospitalize her until she was well enough for surgery. But I am skipping several moments along our rollercoaster of a medical journey, so I will go back and share updates on what these last two months first. The first week of January was busy as we started learning about what medicines and medical supplies wouldn't be covered by insurance. To me, that aspect of this journey has been the most frustrating. While, I hope that the doctors will figure
out how to help our daughter have a somewhat normal life when it comes to eating, I am really tired of calling to schedule a medical supply delivery or going to pick up a prescription (both which are necessary for June to live under her current treatment plan), only to find out that insurance is no longer covering something we have been using for the last 18 months. We end up spending a great deal of time on the phone with doctor's offices and the insurance company trying to align June's medical needs and what our insurance will cover.

The first week of January was June's annual cardiology appointment. At her last appointment the doctor didn't hear a mumur or see any holes. He thought that he would likely be discharging her in a year. However, this year he did hear a slight heart murmur when listening to her and could identify three holes still in her heart from her echocardiogram. To be on the safe side, he told us to bring her back when she is four for another echocardiogram and exam. He is hopeful by that age he will have a more clear picture of how to proceed with treatment. June was not a huge fan of the appointment, but things started looking up when the nursing staff brought out goldfish. Sawyer also enjoyed the goldfish and loved the crayons, coloring book and stickers he scored out of the visit.
The rest of January was uneventful. She had weekly weight checks, but we didn't see much gain - she would lose a couple ounces one week, gain some more the next, only to lose it all again the week after. We still had daily vomit sessions during the night. We typically set a 3 a.m. alarm to try to set her upright or draw fluids out of her stomach to prevent the throwing up, but we didn't always make it in time. If June is awake enough, she knows to roll over and get up on her hands and knees so she doesn't get anything in her pretty curls. The J tube seemed to be causing issues - we had reached a point where after three hours of J tube feeds at 12 milliliters (2.5 teaspoons) an hour, June was getting sick. Our surgeon decided to try having her drink Pedisure to promote calorie intake and retention. We also experimented with it in the G tube, but her reflux was too strong to continue any type of tube feeds overnight. Through phone discussions we came to the conclusion with our surgeon that surgery was becoming a must. Our surgeon was hoping to get her to late spring or summer to decrease the chance of her catching an infection.

In the middle of February, June wasn't keeping anything down at night. She had a slight fever and had developed a barky cough going into one of her weight checks. She had lost over a pound in a week. They tested her for RSV, but the test came back negative. However, she did walk out with a 10-day oral steroid to treat her double ear infection. June showed signs of recovery from her infection, but the next week she ended up getting sick after every meal. We were headed in for a weight check where she had lost more weight, so the doctor tested her for the flu. He went ahead and prescribed Tamiflu to be on the safe side. We desperately needed to get more calories in her body, but tube feeds had become impossible without vomiting. We were concerned that the vomiting was only going to cost her more calories. 

Over Presidents' Day weekend, I went on a trip with some amazing women ;-). June seemed sleepy but also showed signs of recovering from her bug. (The flu test had come back negative as well.)  When I came back on Monday, she was very cuddly, but mom's wishful thinking convinced me that she had just really missed me. Tuesday our sitter reported that she was very tired and just wanted to sit and cuddle. By Tuesday night, the only movement she would make was to blink her eyes. Something was very wrong. Tuesday night she got sick around 4 a.m., but she barely reacted. Usually, June cries until her clothes and bed are changed and she is cleaned up. This time she just blankly watched me clean her up. I ended up calling the on-call doctor because she had me so worried, and I was home alone. The doctor was concerned with June's complex medical history that our local ER wouldn't know what to do with her. I was better off getting her in to see Dr. Traeger later that day. When the office opened up, I called and made an appointment. 

In the meantime, our surgeon's PA called to check in on June Wednesday afternoon. We had an appointment on Friday to get her tubes changed and discuss surgery options. They had been getting the weekly weight checks and were very concerned when I explained how June was acting. Our surgeon wanted to admit her that day but wanted us to go to the pediatric appointment first. After our appointment, we were told we could try waiting until Friday when she headed to Chicago for her appointment but to expect to stay. Since Jason has Wednesday and Thursday nights off, we decided we might as well get a jump on the hospitalization without costing us both too many sick days. The hospital was crowded, but they were able to get a bed for June. She checked into Lurie's at 9 p.m. on Wednesday, February 22. 
The next morning, they scheduled her for a short procedure to have a central line placed in a vein in her arm that leads to her heart. Through the central line, they give her TPN and lipids (essentially formulas that deliver calories and fats straight into the blood stream when the gastrointestinal track needs to be avoided). June was on TPN for the first 12 weeks of life and again during one of her hospital stays, so we are very familiar with this process. That evening she was allowed to eat, but ended up getting sick at night so they stopped oral feeds the next day. Our surgeon stopped by to discuss game plan. Initially, the thought was to keep her for a week to get some weight back and return at the end of March (mommy's spring break) to have the re-do surgery for her nissen fundoplication. The Nissen procedure will wrap part of June's stomach around her esophagus to treat her severe Gastroesophageal reflux disease (GERD). She has had this done once before but the stitches came out so there is an increased risk with a re-do surgery.

Unfortunately, the doctor felt that it was going to take June two weeks to hit the goal weight before surgery could be done. She wanted to keep June until she reached 20 pounds (essentially got back on the growth curve at the third percentile) and then operate instead of sending her home and risking more infections. June was again allowed to eat, but has been vomiting most nights. As you can see in the picture to the left, June has this hospital gig down - she even manages her machines, feeds, and medicines herself.

Last week, June had a swallow study and esophagram. Every time June drinks water or milk, she coughs and sputters. There was concern she might be getting the liquids in her lungs. Through the swallow study, they found that while the liquid isn't going into her lungs, it is dripping across her vocal cords. After surgery, we will work with speech to determine if she needs her liquids thickened and the best approach to giving her liquids. The esophagram showed that June's esophagus isn't constricting properly. After surgery, we will attempt to train the esophagus to properly constrict in order to push food through. However, there is a chance (worst case) that June will need to have her esophagus replaced if it cannot be retrained.

We are nearing the end of week two-with several trips back and forth to Chicago as mommy, daddy, grandparents rotate to keep June company 24-7 while trying to maintain some sort of routine for Sawyer. Although June hasn't hit 20 pounds (she has plateaued at 19 pounds 10 ounces), she will have surgery tomorrow (Thursday, March 9). The surgeon is planning on doing June's procedure last so that she has plenty of time to determine what will be best for June. Right now, they don't even have a prediction on timing because of not knowing what they are going to find. I do know that they will start by putting a camera through June's bellybutton to look an her internally. They will then determine what exactly they need to do and if they can do it laparoscopic (through small incisions in her bellybutton using a camera) or if they will need to cut her open. Since this is a re-do surgery and because of the number of surgeries June has already had on her abdomen area, there are some more risks when it comes to infection, inadvertently injuring something internally, or negative reaction to the surgeons working on a already sensitive area. Future post on her surgery and post-opt to come, but for now, just enjoy the pics: