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:



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