Last Wednesday when Evee saw Dr. G, he finally called it. He felt that there was so much to gain and not much to loose by getting a G-tube. The question became whether to get a Nissen as well.
A Nissen is a surgical procedure when the stomach gets tied off a little bit to prevent reflux.
Evelyn has severe reflux, even though Todd does not like me saying it that way. He said that whenever he hears parents use the word "severe" he ignores it and feels that it is not appropriately used. Evelyn's doctors (through pH impedance tests, medication trials, etc) have said that she has "Grossly Abnormal reflux", but who likes to use those words when you're talking about your child?
Dr. G has been back and forth on his recommendation on the nissen. The surgeon was supportive either way, stating that there is a case both ways.
Todd and I did our own research and decided that we should go through with the nissen. When a child gets a g-tube they most likely have more reflux. With Evee having such severe reflux, it is very likely that she will have more reflux. She is already on the highest dosages of two medications. I don't want Evee to have more problems, and I would hate to have the surgery done then have Evee be in pain until we can get into surgery again to get the nissen.
Originally I thought that maybe Dr. G was a little too overboard going with the G-tube. I thought that he was just looking at numbers and not at how happy and smiley my girl is. I would try to remind myself that the reason we have these specialist is so they can look at the case objectively and come up with a recommendation without getting their emotions (and desire to live in denial) in the way. I was trying to be more open about getting a g-tube. Plus, after having brain surgery, a g-tube surgery is nothing, very minimal. And my PICU nurse friend did say how easy and convenient they can be.
Starting Saturday, I didn't need to try convincing myself anymore.
Evee hadn't seemed to have much desire to eat. Usually, she may not act like she wants to eat, but she will eat regardless. Starting around Saturday, she wouldn't eat much that was presented to her. She would not suck productively and was leaking a lot of milk out of her mouth. Sunday and Monday were the same. Dr. G said that the minimum amount of food Evee could get a day was 24 oz. I guestimate that starting Saturday she was getting around 16 oz a day.
What worried me the most was how Evee was acting. Of course, true to Evee, she was still happy and would smile, was patient with us. But she was sluggish, seemed fatigued, just....different.
I began to really realize that Dr. G was giving legitimate recommendations and orders. As much as I wanted to think that my baby was fine, I started to see that she was needing extra nutrients.
At night I was terribly anxious (nights are always a bad time with Evee, not that she is always worse, but as a parent I start getting nervous that something is going to happen while I'm sleeping...plus being tired makes emotions go haywire).
Tuesday morning I gave Evee her 6 AM meds, which require food at the same time. I went to feed her and she hardly ate anything and quickly went back to sleep. She ended up sleeping until 9:15, which I even had to wake her up then. By 1:30 PM she had only eaten at most 6 oz that day and was showing no signs of wanting to eat.
I knew that this was not okay. I was nervous.
While my stomach was in knots, I served my boys lunch. Mealtimes have always been a social event in our home, but I couldn't be "present". My mind was on Evee. I put my head into my hands as I tried to figure out what to do. I felt so helpless. We had gotten an appointment with the surgeon to evaluate her in one week. But what if she needed to get the extra nutrients now. What if her little body couldn't wait? I didn't know what else I could do. I found myself facing the same question I have asked myself so many times during Evee's short life, "When do I call it?" When do I say that this point is the point where she needs medical intervention, now?
Dr. G has been incredible with Evee's care. He had given me his cell phone number and wanted me to text him with any updates or concerns. I decided to send him a message, just letting him know that I was concerned about her, that her intake had not been great. A few minutes later he called me back.
Dr. G wanted Evee to get admitted into the hospital and have an ng tube (a tube that feeds through the nose) put in to give her some nutrients until we can get the g-tube surgery. He added that this would allow us to meet with the surgeon in a more timely manner.
Normally I don't prefer to go to the hospital, but now it did seem appropriate. I felt very relieved and unsurprised with Dr. G's decision.
I got things packed up and arrangements made while I waited for the nurse to call me back with the details.
Todd was at work, and not living by any family, one would think that it would be next to impossible to get someone to help with the boys. Not so. All I can say is that I have amazing friends and support.
On the drive downtown I was starting to feel a lot better.
Evee was brought through the ER for the admission. It was weird seeing the ER and to know that my husband works in one, that it is his "other life" away from us, his normal, yet I felt very different there. At the center "desk" there were a lot of nurses and doctor's working away on their computers. Todd does complain about how much documentation his job requires, but as an onlooker, it almost appears as though everyone is just playing, working on their social media rather than actually doing some work.
While we were brought into a room, I tried to feed Evelyn a bottle. Of course she took it beautifully. It was like she knew what she was doing and I was tattling on her for her behavior before hand. It was going to be a case of he said/she said.
We were brought up to Evelyn's room. I was surprised to find that her room was on the Immunocompromised floor. At first I thought maybe we were there because there weren't anymore rooms available, but my PIKU nurse friend pointed out that that was strategically planned, especially with it being cold, flu, and RSV season. She even asked how the doctor's were able to pull that one off.
As we walked through the hallway to our room, I saw a couple of bald kids. This is where the cancer patients are.
Upon getting into the hospital, I was hit with my normal hospital feelings. Once we are in a hospital, I feel that we're being overly dramatic, that Evee is not "sick" enough to be in a hospital, yet while at home I am in tears, wishing she was getting help in the hospital, unsure that I am doing enough and that she may need medical intervention.
Having a special needs baby has been tough in many aspects. One aspect has been the "drama". I am not a dramatic person, I do not enjoy nor prefer to be the center of attention. Having so many health issues is dramatic no matter how much I don't like it or try to play it down. Going to the hospital always feels dramatic for me, yet there are so many reasons people are admitted into the hospital that are not dramatic.
As I saw these sweet bald kids, I felt even more that I had nothing to complain about. That maybe I was being overly dramatic. But who knows. When you have a child with a medical problem, you see other kids with medical problems and are thankful that your child doesn't have that problem. I wonder if the other parents would think that if they saw my child's problems.
Our room was a double room. The patient/neighbor on the other side of the 1/2 wall, 1/2 curtain was a 5 year-old girl, William's age and size, that has had problems eating. She loved Evee, and of course Evee loved her.
Funny thing about our neighbors. The mother, who is very nice, is a manager at the movie theatre. The move theater that we got kicked out of! When we found out about this Todd and I looked at each other. She wanted to know what that look meant. So I just mentioned that we got kicked out of there. She had heard about the story and could not believe that it was us. She said that the manager that did it felt so badly that he had to do it. Funny/weird connection. Don't like being "famous".
The doctors, hospital staff, therapists, etc that have taken care of Evee have been amazing. I am so full of gratitude. I really feel as though everyone has been super attentive and caring about Evee and her health. I am constantly amazed at the care that they give, the concern they show, the love they beam at Evelyn.
When Evelyn was getting her shunt, I got a text from Dr. G (GI), emails from Dr. P (Genetics), Dr. N (Neurology), Miss Amanda (PT), and a call from Dr. K's office (pediatrician). Dr. P (the oncologist/hematologist) stopped by today for she saw that Evee was here. Dr. P has so many patients and works so many hours, yet finds the time and energy to check on Evee and to call me with any lab results. The GI team that we've been working with here have been very attentive to Evelyn and have worked hard to get her the best care.
Today a resident came in and remembered meeting Evelyn while she was in the NICU, and only met her that once. I told the resident that I was sure that this would not be her last time seeing Evelyn. I am really coming to terms that Evelyn is going to require much more medical care and attention than I normally would have any child obtain. I am starting to learn and accept that I may spend a lot of time at and in the hospital with my special girl.
During this stay, we have gone down to x-rays several times, one time during the late evening. While down there, I felt as though I was a kid in their school building after hours. I know the area, know the tile patterns on the floor. I have visited or seen a lot of the rooms, even if just through the doorway while walking by. I felt that the "teachers" or staff may not all know me, nor I them, but there is some recognizing going on. I felt like I was "home" in some stretch. Something I would never had imagined. I have a friend that has to frequently take her son to Rainbows and I use to marvel at how she was able to do that. It seemed too daunting to me. Well, unfortunately and fortunately, not anymore.
Supposedly we are going home tomorrow. I hope so, I miss my boys so much.
Saint Dorothy has been taking care of them. Of course I don't know if I should trust her with them for she may need her head checked. She kept thanking me for allowing her to watch them. It is amazing that woman still lives on this earth. Someday I will become like her.
It's looking like Evee will get the g-tube and nissen surgery on the 29th, and until then we will go home with an ng tube (lovely, I know). I am trying to remain objective and not push to go home too soon. I know how it feels to be home and wondering if you should be at the hospital. I just do dislike being here. I obviously need to change my attitude.
No comments:
Post a Comment