I was raw emotionally today.

Ella had an “ok” night, but started having tummy/gas pains at 5am during her continuous feed. This was not something that I had seen before.

As of Friday night at her 6pm feed, they switched her food to Pregestimal. During the weekend, she was exhibiting lots of tummy/gas pain so they prescribed simethicone up to 4x per day. Up to this point, she had not required any type of gas medicine. Even with the simethicone, she was having lots of tummy trouble. I kept thinking that it was definitely due to the formula switch and also watching to see if she was stooling.

Surprisingly, she started stooling on a normal basis so her system was processing the food okay, but her episodes became more frequent and she started to become inconsolable. I was having to increase her oxygen each time because it was hurting her so much and making her so upset.

The last feed was this morning at 9am and it did not go without incident. Much of the same stuff over the weekend, but just intensified. She also started retching real bad. This was a new thing at this stage of the game.

At the same time, they came to tell me that the PICU was in need of beds and since Ella had stabilized on 500ccs of oxygen, it was time to move her back downstairs to the Intermediate Pediatric floor (which is where we were admitted last Wednesday). As you might imagine, I was not thrilled.

When I came downstairs to the new room, I was ready to feed Ella at 12 noon. As soon as I tried and let a small amount of food into her belly, she started crying hard and would not stop, so she pushed all the food back from her tube. I really think the food was giving her a tummy ache. I tried with that same feeding 4 times, at different rates, and every time she would retch and cry so hard that I had to increase her oxygen. So, she missed her feeding at 12 noon.

It was tough because I felt completely alone in the hospital. We went from the NICU where we felt like there were lots of staff that truly cared about our girl to this situation where we feel like we have little support.

Dr. Kays is the only one that makes decisions on her care. That is a blessing and a curse. It is a blessing because he is a talented surgeon and he saved her life. It is a curse because he is the chief of pediatric surgery – – he is VERY busy. And as such, when there are things that are wrong with our girl (like she can’t eat at 12 noon), no one is available to help us except Dr. Kays and he could not come around till 6pm or so.

It is understandable that he cannot come himself – – honestly, I don’t expect him to. His time is precious. But I would expect that someone on his team would be “responsible” to come up with a plan and run it past him. This way, they learn from him too.

In the NICU, he made the decisions for her care too, but you had a team of a doctor and nurse practitioner watching her clinically that were coming up with a strategy every day and passing it along to Dr. Kays for approval. On the pediatric side, you simply have the pediatric surgery team. If you think about it, Ella is not in need of surgery. Most of their patients have been admitted for a surgery and they are doing the follow-up and care for them. Ella is past her surgery needs for now.

All of this to explain that the experience is very different. The pediatric surgery team rounds at 6am and make a plan for the day and meet again the following morning. So when I have a problem with Ella during the day, they are not available to address my concerns. They are in surgery, for example. This is reasonable and I understand it, but it does not work well for a chronic baby like Ella that is complicated and needs ongoing attention. This is why the NICU with 24/7 care worked well for us.

Thank God for the NICU staff, or should I say the friends that happen to work in the NICU that have come to know and love Ella. Their support by stopping by and visiting Ella at the bedside has been awesome. A familiar face in the midst of feeling like there is no one that cares about us or Ella, is a great reminder that there are people in Gainesville that do care about us.

I cried several times today. This is so tough. My baby girl was in so much pain from the weekend and then starting early this morning, and there was no one available to address my concerns. Aside from her episodes, this new food was causing so much grief. This was discovered at 12 noon, when she would not accept the food at all. So from that time until 8:30pm, my baby did not eat. How is that possible when I am sitting in the hospital? Even throughout the day, she would have episodes and I was turning up the oxygen myself rather than waiting for a nurse. I just felt alone to deal with Ella and all her discomforts.

Dr. Kays admitted that she continues to be a mystery and doesn’t know why she is behaving fine one minute and having horrible pain the next minute. He came up with a plan:

• He ordered an xray of her abdomen to make sure there is no bowel obstruction (although I really don’t think she has that since she is not exhibiting any symptoms).
• There is a soft spot on her head which is normal for babies but feels like it has more fluid than normal, so he is having a consult with neurology.
• He wants a set of labs drawn up in the morning, so he can determine if her levels are correct and if she is dry enough.
• Based on her aversion to Pregestimal, he ordered for her to switch to Alimentum. She took her first feed at 9pm well (she wouldn’t take the Pregestimal earlier), so we are hoping that this is a good sign and that her system will tolerate this better.
• Ella’s g-tube is broken (the valve is broken and remains open all the time). This makes it tough to feed and he is going to replace it tomorrow.

 
Please pray for a restful night’s sleep for all of us, Ella to tolerate her new food without issue, her labs to show that she has dried out, and her g-tube replacement to not be too painful (it will hurt her, Dr. Kays was honest about that fact).

Also, please pray for Dr. Kays. He got frustrated at me this evening when I explained my day and how unhappy I was with the system in place for her care. Please pray for him with everything he has going on (personally and professionally) plus discernment and wisdom for how to treat Ella.

We are hoping that we will be discharged from the hospital, but it would be nice to also make sure she is doing okay before we make that move. It could be 1 day or several. Right now, all of it is a blur.

Thanks for your love and support at this time.