A Whirlwind of a Week

Wow! What a whirlwind it has been since my last post. Faith had an appointment last Tuesday with her GI doctor. The doctor was very concerned with Faith’s extreme agitation during her appointment. She sent us to get an x-ray and ultrasound to rule out intussusception. 

The x-ray and ultrasound looked fine so that was ruled out. Faith was still so agitated that I wanted to make sure we had ruled out all possible causes of agitation so I scheduled an appointment with her pediatrician last Wednesday.

On Wednesday morning, Faith went to the pediatrician. Ears, mouth, urine, etc. all were fine. Still no real explanation for the extreme agitation. We had Faith’s appointment with the movement disorder specialist Wednesday afternoon. The doctor was concerned about how agitated Faith was as well. We did lots of brainstorming and discussed possible medications that may help. We were still assuming that there was a neurological cause to Faith’s agitation. We had a plan to start her on a new sleep medication that evening. The doctor thought that maybe if we address the sleep issue first that Faith may be less agitated. Faith’s body really needed some rest after minimal sleep for the past 3 weeks. Before we headed home, we visited x-ray once again. The doctor wanted to rule out that Faith didn’t have some sort of fracture that could be causing pain so she ordered a skeletal study. The study looked fine besides a varus deformity with her right foot which should not be a cause of pain.  Finally, we headed home.

Faith struggled greatly every time we had to get her in the car seat that day. It felt so miserable to see her so miserable. We could barely buckle her in. She just screamed and cried. It was awful! We just knew something was not right and had known this for quite awhile now.

When we got home, I took Faith out of her car seat. She felt like she was on fire! I immediately took her temperature and it was 103.5 degrees F. They checked her temperature earlier at the doctor today and it was around 99-100 degrees F. We didn’t think much of it because Faith was so worked up and agitated that we just thought her body temperature was elevated. Regardless, the high fever came on very quickly. We headed back to the hospital to the ER. Not long after being there, the doctors that were coming in had many concerns. They told us that we would not be going home any time soon.

While in the ER, an IV was put in and they started blood work. They put oxygen on Faith as she was struggling more with her breathing and started retracting. Her agitation levels just seemed to be getting worse. Before long, we were told that Faith was being sent up to the Pediatric Intensive Care Unit (PICU).

Faith was so agitated that she starting biting and clenching her mouth shut. Her mouth was covered in blood and there was nothing we could really do to get her to stop. Once we arrived in the PICU, the team of doctors, nurses, and  respiratory therapists were ready for Faith and on her immediately. This is when things started getting really scary. Faith’s respiration rate was over 90. Her heart rate was over 200 bpm. She was hyperventilating. The critical care doctor came in with the same concerned face that almost everyone else had in the entire room. He started telling us the plan. They were going to sedate her and get her hooked up to the bipap machine immediately. They were preparing to intubate her if needed. The anesthesiologist was checking Faith out and asking us questions. Things were happening so fast and Faith was in very bad shape. I looked at the critical care doctor and asked him if she was going to be ok. He said, ” We will do everything we can.” Those words alone told me how serious and life-threatening things had gotten.

Thankfully, they were able to get Faith sedated and the bipap machine helped Faith to breath so she didn’t have to do all the work. Her exhausted body finally got a break. She did not have to be intubated.

Faith remained sedated all of Thursday and Friday. She was able to come off of the bipap machine on Thursday and did very well. Friday evening she was stable enough to leave the PICU and move to the neurology floor at the hospital. Faith was slowly showing signs of progress. The concerning issue was that when she was awake, she was still agitated. On Saturday, the sedation medication was stopped. She was given the sleep medication during the day instead when she started getting agitated. I was not a big fan of this but we addressed that concern so it wouldn’t be an ongoing issue. However, at that point Faith really did need the extra sleep and a chance for her body to rest and recover. By Saturday, we were able to get her tube feeding going again and she tolerated it very well. On Sunday, we increased the rate of her tube feeding and again she tolerated it well. She was able to come off of the pulse ox machine on Sunday but did have to go back on it overnight. By Sunday, we started seeing positive signs of our Faith returning. Faith was much less agitated and starting to smile more. She had a really good day on Sunday! Faith continued to do very well on Monday as well. We just loved seeing all of her smiles! We missed them so much! Faith just needed to continue to prove that she could tolerate the increased rate of her tube feeding and then she would be ready to go home.

Faith didn’t have the greatest night Monday night. We figured that she was most likely  just getting back to her typical night behavior and that we probably increased the rate of her tube feedings a bit faster than we should have. Nevertheless, Faith was still very stable and ready to go home. We felt comfortable managing all the remaining concerns on an outpatient basis. We had a care conference with several of Faith’s doctors yesterday(Tuesday) morning and then she was discharged from the hospital in the afternoon afternoon.

Tuesday morning before she was discharged, Faith was more irritable than she had been the previous two days but again it didn’t seem too concerning. By the time we left the hospital, Faith became very agitated once again. I had to pull over on the way home the screaming was so bad. I called back to the hospital and talked with her neurologist. She recommended that we continue the plan to go home and to call her back today if she was still struggling. The rest of yesterday Faith struggled. Last night, she barely slept again despite being on a very potent sleep medication. She just cried and screamed and appeared to be in pain the majority of the night. I feel like this is all a bad dream. What happened to our happy little girl that just made a miraculous recovery and was doing so well?

The first big question that still remains is- what happened last week? None of the blood cultures showed any growth so bacterial infections were ruled out. The only virus that showed up on the nose swab was rhinovirus. Faith has had rhinovirus before and has never been affected to this extent. Also, she didn’t have any typical virus symptoms or specifically the cold symptoms that you would expect with the rhinovirus. We still don’t have any real answers to what happened and why things got as bad as they did.

My initial thoughts were that Faith was exhausted from the sleep deprivation and extreme agitation that was occurring for the 3-4 weeks prior to being exposed to the virus. The fever probably also added some additional stress to her body. Faith has cortisol deficiency which means her body doesn’t handle stress very well to begin with. We can also assume that Faith’s neurological issues played a role in this. The second big question now is- why was she doing do much better and now she is back to being extremely agitated again? The unknowns are the scariest part of all of this. Every day that passes just makes me more and more concerned for Faith. We have no real answers.

It was truly amazing the progress Faith made from when she was admitted to the PICU last Wednesday night up until Monday night. She displayed incredible strength and resilience. The outcome could have been devastating; we are so grateful to all be back home but now we wonder how long it will last. We are following up with Faith’s doctors once again and still trying to piece this puzzle together. We are hoping that we can manage her care at home but time will tell.

Thank you all for your support, love, prayers, and support during Faith’s hospitalization. Prayers were answered and a miracle did happen! Faith proves to be our little miracle once again!

I ask for your continued prayers for Faith to maintain her strength as she continues to struggle and for wisdom and knowledge for the doctors trying to figure out what is going on with Faith.

Keeping the faith,

Bridget