Well, the past 72 hours have NOT been what I imagined my week to be. My calendar was full of meetings at work, financial planning launches, #CHDAwareness nights at Drury University’s Men’s and Women’s Basketball games, and an appointment with the pediatric gastroenterologist in Springfield.
Our pediatric gastroenterology appointment was on Tuesday (2/3) at 1:30pm. During the evaluation, it was decided that we needed a scope of her esophogus, stomach and the first bend in her intestines. The doctor was going to visit with the pulmonologist we saw in December of 2014 and discuss trying to find a date where they could both go in to scope Reiss so they could see both the gastro-intestinal tract, as well as the lungs, and only have to put Reiss under anesthesia once. We left thinking she would call us later in the week to schedule this appointment. Fate had a different idea, though. Upon leaving the parking lot, Reiss coughed up blood all over her new, white Elsa shirt. We immediately turned around and went back into the GI doctor’s office. She then expedited the process and gave us a date of Friday to be ready to go to the OR for a GI and pulmonary scope. However, if she were to cough up blood again, we were to go to the ER.
At 11:30pm that night, Reiss was coughing in her bed, covering her white sheets with red blood. So, we took our time, packed out bags with clothes, toys and blankets and made our way to the ER. We knew this would be a long couple of days.
Flashback to November of 2014. Reiss puked blood in the same fashion. We went to the ER and were discharged after 2 days with the diagnosis of an upper GI tear. The doctors came up with this diagnosis only off of historical knowledge of other bloody pukes and did not follow this up with any type of scope procedure. She went on a liquid diet and the blood went away. The doctors took this information as confirmation of their diagnosis and sent us home. We know now that this diagnosis was completely wrong.
Here are some of my posts of our Pray for Reiss Facebook page throughout the process.
Wednesday, Feb 4:
Reiss was puking blood last night, landing us a stay in the hospital. We are waiting on anesthesia and the GI doctor right now for a scope procedure to check out 1) why we are bleeding and 2) why we have a chronic cough. Please pray for the anesthesia doctors as they start the procedure, the GI doctor as she directs the scope, Reiss as she goes through the procedure like such a big girl! And mommy and daddy as we once again put Reiss in the hands of the doctors.
Wednesday, Feb 4 – 12:50pm
Well. We have some good news and bad news. The pictures below show her stomach and intestines. According to the GI doctor, her stomach and intestines are pristine. She only saw dried blood – like Reiss was swallowing some as she spit up. Hooray!
Bad news – when they turned her over to take her off of anesthesia and take the air tube out, a lot of blood came out. So, the bleed is coming from the airway some how. Our pulmonologist is in Joplin today, so the ear nose throat doctor came in to scope her lungs. They put her back under sedation and are currently looking at the lungs.
Wednesday, Feb 4 – 1:41pm
Talked to the doctor. She had a grouping of vessels – looked like a little nub protruding into her airway. He took a laser to it and removed it. Now we are just waiting for them to let us into recovery as she wakes up.
Wednesday, Feb 4 – 2:59pm
We are in the PICU now and she is cuddling with her mama – yes, Reiss chose her over mom.
She woke up upset from anesthesia but we were able to get her to rest and go back to sleep after they took some x-rays and some more blood for tests.
Apparently, the amount of blood she lost as they tried to take out the breathing tube the first time was huge. Huge enough that according to the ear nose and throat doctor – “they all were scared back there. They thought she was going to die.” What a scary thing to hear right after he tells us all is well. We were worried more between talking to him and waiting to see her in the PICU after hearing this.
Hopefully this grouping of vessels he lasered off (see before and after photos attached) will help correct not only the blood we have been vomiting the past 24 hours, but also her chronic cough. We will not know that for a while, though, as she continues to heal.
Thank you for the prayers – as they have most definitely been at work through routine-turned-scary procedure.
Wednesday, Feb 4 – 7:10pm
Reiss is recovering well. Unfortunately, she had a small spell of spitting up blood. Since then, however, she has been spitting up clear fluid.
We talked to the doctor on call in the PICU and she said we would most likely ride out the night here and then take a transport to St. Louis Children’s Hospital tomorrow. She believes Reiss needs specialist care in all areas that she cannot get here.
Please pray for an easy night and transport to stl tomorrow – especially with the weather.
Thursday, Feb 5 – 11:24a
We are on our way to St Louis Children’s Hospital right now. Reiss is more awake today but she still doesn’t feel well.
We will be admitted directly into the PICU at children’s and start the process of figuring out what is wrong – both with the chronic cough and also the bleeding this week.
We hope for a safe and easy drive up there. I am in the front of the ambulance while Reiss watches Frozen in the back. So far, she hasn’t had a major melt down with the separation. She does have 3 people to talk to back there.
Roy and other family member will be driving separate today.
In St. Louis Now
We arrived at the St. Louis Children’s Hospital (SLCH) at 2:30pm today (2/5). They opted to take us to the CICU instead of the PICU due to Reiss’s heart issues. When we arrived, the Attending doctor, the Fellow on call, and the nurse assigned to our case were all ready and waiting. Each person asked questions about our recent issues, but knew vividly Reiss’s history – some even recognized us as we came in! This was 200% better than what we saw in Springfield where communication and knowledge of the patient were lacking. St. Louis Children’s excels at specialized care for children. After the scare in the OR in Springfield, we can guarantee you that any type of procedure that has any type of risk will only be done at SLCH.
We have spoken to:
- The CICU Attending and Fellow
- The Ear Nose and Throat team
- The Chaplin
- The Cardiologist on call
We have had the following tests/procedures:
- Blood work
- Removal of her IV/Addition of new IV
The plan for now is:
- Make sure all looks well heart-wise on her echo
- Watch her over night to see if she coughs up more blood
- If she does cough up more blood, there is an option to go back in with a scope to see if there is another bleed in her airway and/or lungs.
- If she does not cough up any more blood, we may just schedule a follow up appointment and/or scope at a different date.
- Reiss is on a clear liquid diet until they know for sure they will not need to go in and scope again.
- Tomorrow they will discuss the results of her echo and bloodwork.
- It was mentioned that they would watch us through the weekend.
We feel at ease here. It’s been over a year since we have been here, but it feels like just yesterday since our last visit. Reiss is busy playing with MomMom, building with her legos and playing with Minnie Mouse. She is being a little shy with the doctors, but I think she is warming up to them the longer we are here. Reiss has been so strong through this process. She is so smart and understands most of what we are talking about. The only issue we are having with her currently is with taking her medicine. We had to have a group “cheers” in order to get her to take her amoxicillin (ear infection diagnosis on Monday). This made me giggle because it looked like we were all doing apple juice shots together.
Thank you for everyone’s thoughts and prayers!