Two weeks ago, 8/27, Caroline walked out of church and said her head hurt. A lot. We took notice because she does not get headaches very often. That day, the headache continued and when she showered that evening, I checked for ticks since she had been in the country at a sleepover the day before. No ticks. By Monday she had a severe headache and vomiting with it. That night she spiked a fever, but only 99.9°. Tuesday the headache continued, the vomiting continued, and she spiked a fever of 104.4°. We did a covid test to see if that was the issue. It came back negative. She sat in a tub of water and her temperature came down. Wednesday she had all the same symptoms, so we headed to the Texas Children's Hospital Urgent Care which shares a wall with the actual hospital Emergency Room. We were not at Urgent Care long when they sent us over the the ER because they thought it was appendicitis due to her tender belly. Her fever was 103° and her heart rate was elevated (174). They did a flu test. Negative.
And then we waited. So many hours were spent in the waiting room. She was brought back for an ultrasound of her appendix. They spent a long time looking at her bowels and appendix. That proved to be negative. They had no rooms available at that time, so we were sent back out into the main waiting room. It took 7 hours (from the start) to get a room. They did another ultrasound on her kidneys and a third on her ovaries (apparently they can get twisted and cause some of the symptoms she was experiencing). All proved negative. They tested her urine, did their own covid test. All negative. Liver function came back fine. Strep, negative. They checked her blood - a CBC and cultures. Her neck was starting to hurt at this point. She was in a lot of pain from her headache and all the throwing up for the past several days. They mentioned meningitis and encephalitis, but wanted to rule out everything else before doing a lumbar puncture on her. The neck pain appeared to be muscular, but the doctor checked it often. They gave her an IV and pumped her full of fluids as well as Tramadol for the pain. She finally slept. To get discharged, they needed her heart rate to go down. It was in the 120 range for a long time, but when it finally got down to 105 at 4:00 a.m. the next morning, they let us go.
Caroline spent seven hours at home before the hospital called us back. The cultures came back positive. Staph. We were to immediately bring her back in for IV antibiotics. I was at CC with the boys, so Todd brought her in. When I got there, they were in a room getting ready to do a lumbar puncture. Her PCT number was 3.37. It should be less than 0.5. She definitely had an infection. LP came back negative. First praise! We were told by the PA at this time that they will assume meningitis until the cultures prove otherwise. There was no difference between staph and meningitis in treatment - the same drugs are given, but with meningitis, they are just given more frequently. I filed that tidbit of information away. She was admitted to the hospital and put in the PICU only because that was the only bed they had available, not because she required PICU level care. That was Thursday night. She did not sleep that night.
Then came Friday. The cultures continued to grow. The staph was in her bloodstream. Caroline was on IV fluids, antinausea meds, Tylenol, two antibiotics, and Toradol. She said her forehead brain hurt. That wasn't good. Her eyes were hurting. She became very mumbly and non-communicative. They did an ultrasound of her heart because sometimes bacteria can settle on the heart valves. It was really important to them to find the source of the infection. So many questions were asked. She got a chest x-ray. Infectious Disease doctors were called in. They wanted an MRI of the brain and neck. But there was a problem. Caroline could not lay flat to do the MRI. She had not laid flat all week. They tried to get her in the supine position, but that hurt her head so much that it was very concerning. It was also at this time that they upped her antibiotics from every 6 hours to every 4 hours. I knew what that meant even if they wouldn't say it yet. We were at the Texas Children's West campus. This particular hospital does not have neurosurgery on staff. If they needed to go in and do surgery or drain the head area, they needed neurosurgery. So that's when they called to transfer us to TCH Downtown Houston.
The "kangaroo crew" ICU ambulance transport loaded her up and brought us to the PICU downtown. This time we were intended to be in the PICU. Everything hinged on the MRI and what it showed. It also hinged on ENT giving their opinion. So we were incredibly frustrated when ENT was not weighing in and the MRI did not happen on Friday or Saturday. She did have a CT Scan which showed 'thickening'. It also showed blood clots in her jugular. The doctor said that could happen because the blood gets sluggish because of the infection. It was more important to get the infection down first. Saturday was filled with consultations - Infectious Disease, neurology, ophthalmology (they checked her eyes because of the eye pain, but they were fine), plus the regular PICU team. It was also filled with nausea, throwing up, severe headache, and neck pain. Hospital Room #2
My friend came to the hospital and brought food for me and company for Caroline.
The next day these same friends checked on the boys for us. We are so grateful for these friends! They didn't just drop off lunch, but sat and hung out with them. The boys were very concerned for their sister as well. Josiah was constantly texting for updates on Caroline. Always asking how she was doing. Always saying he loved her. Both boys have been great.
Sunday things happened.
5:15 a.m. the ENT finally showed up. She talked about surgery almost immediately.
7:15 a.m. neurology came in and said the chances for surgery were high.
7:20 a.m. ENT came back and finally explained the infection - her spheroid sinuses were infected. The left was so full it was bulging into the right side which was also full. These sinuses are very close to the optic nerve, the carotid artery, and the brain, which was the reason neuro was necessary. She had a CT Scan at 7:30 a.m. which gave the ENTs a roadmap for the surgery.
Finally, finally, she had her MRI at 11:30 a.m. She was sedated so that should could lie flat They did brain and neck both with and without contrast. It took 2 hours. In the meantime, Hematology came by and said she'd be put on Heparin as soon as surgery was done.
5:20 p.m. ENT came in and said she has meningitis and a skull base infection. They intended to go in and drain her spheroid sinuses through their natural channels. They do nothing with the base of the skull because that part is so integral to the support of the brain, that they do not want to mess with it. She would need IV antibiotics for a 'while'.
Infectious Disease came in - she'll be in the hospital for a 'while'. Her symptoms will gradually decrease, but nothing will be quick. Everything will be a gradual decrease.
5:30 p.m. She went into surgery.
At 8p.m., the ENT surgeon came out and said they did what they wanted to do. They drained 3 teaspoons of pus out of her left sinus. That was a lot of pus. They left dissolvable packing in her upper nose/sinus to help prevent scarring and because she would be on Heparin.
After being NPO for so long, she was finally able to take a sip water again. She had eaten only a few times that past week and didn't keep any of it down. The same went for liquids. She was so incredibly happy to have a sip of water after surgery.
Late that night, the boys did a video chat with her to make sure she was alright. She was groggy and still not feeling well, but she noticed they were sitting in front of the open dining room window. "Close the blinds." she told them. She still had it.
Monday, 9/4 started her recovery. This was Day One post-op. This was when we were finally told she would be in the hospital for a minimum of four weeks receiving IV antibiotics. She would also be on blood thinners that entire time as well. She would eventually go home with both of these medications. The MRI showed blood clots in her brain as well. Neurology came by and said the lining of the brain near the infection was inflamed. But all the right medicines were already being given. Nafcillin is her powerhouse antibiotic.
Caroline was not keen on me taking pictures during any of this, but some day she'll see what a cute patient she was and be glad for them. For a number of photos, I was told to blur her out.
Monday was a great day. She was recovering, but she finally ate. Todd brought her Chick-fil-a minis for breakfast and, although it took hours, she ate them. And she kept them down. Huge praise! Todd stayed with her on Monday, so I could run home and shower. It had been four days and that was about all anyone's nose could handle. Before heading back to the hospital, the boys made me four peanut butter and jelly sandwiches to make it through. Right before I left, Caroline requested a quesadilla made only by Henry. He made her two. That evening, she nibbled on them and said he cooked them just right. She even called him and said, "I'd like to talk to the complaints department." but then told him how good they were. Now, anytime Todd comes up to the hospital, he has to bring some of Henry's quesadillas. She's loving them. We also discovered that Texas Children's Hospital has some good food. Everything we've ordered for her meals has been really good.
The view from the PICU was sweet. (Labor Day weekend, so there was significantly less traffic. Football stadium just beyond the big buildings is Rice University.)
Tuesday, Aunt Claire came to help us out. We needed it. Caroline was not feeling well. She could not keep anything down. She was frustrated. She was only taking cat-naps instead of real sleep. She was nauseous. Her head wasn't hurting, but her nose hurt quite a bit.
When Aunt Claire came that evening, Caroline played kinetic sand with her, but then fell asleep after a couple of hours of play.
That night, the throwing-up continued and the headache returned.
Wednesday 9/6 Caroline's symptoms all came back and got worse. Her headache became intense. Her nose was hurting a lot. Mid-morning they took her to get a PICC line placed. But when the symptoms kept getting worse, they sent her down for another MRI/MRV. We didn't hear anything right away, but I was also told they read them as they're being done, so if it is anything serious we'll know immediately. The next day they said it showed nothing new developing. Praise!
The nurses in the PICU allowed Caroline to do a lot of self-care. She unhooked a lot of her cords when she needed to use the restroom, she flushed her own IV lines, she did all the nasal rinses herself. It was good for her to be involved.
Caroline's biggest frustration all week has been her stuffy nose. The ENTs said she would have stuffiness for 1-2 weeks. She does nasal rinses several times a day to get the dried blood out. The unfortunate thing that happens is that the sinuses, as well as the back of the nose, drain into her stomach. The old blood collects in her stomach, irritates it, and she proceeds to throw it up. So, while she can eat, the throwing up still occurs until the nasal passages are open. Big praise that today (Saturday) her right nostril finally opened. She was so excited.
Caroline participated in the hospital's Football Bingo game using their hospital TV station. She won the third round and after her MRI/MRV she had a gift bag waiting.
Claire helped with taking Josiah to his orthodontist appointment. They finally said something other than "you're near the finish line." He told Josiah that if all goes well, they'll take molds of his teeth next visit and take his braces off the visit after that. Big praise!
Thursday, Claire took Todd in for another kidney stone procedure. He's done with kidney stones. He told the doctor to do everything he had to do because he's tired of these procedures.
The boys were also able to make it to CC this week because our friends took them. The Challenge kids signed a card for Caroline which made her happy.
Thursday brought more changes as well. They stopped her IV Heparin and wanted to switch her to an oral medicine. The Heparin was the only thing keeping her in the PICU. Once that was turned off, they quickly transferred her to a step-down unit. When we arrived at the new digs, we were a little sad. The PICU was the Ritz Carlton of hospital rooms. The new room was a lot smaller and the view was not nearly as pretty. But we've gotten used to it these past few days and the new room offers things the other one didn't. She now only has to be hooked up to the IV when she's receiving her antibiotics. Otherwise, she has full freedom. She can walk the hallways at anytime. She can go anywhere - up to the playroom on a different floor, or downstairs to the cafeteria. The 3rd floor has the connecting bridge that connects four different buildings. She can walk the bridge. They've really given her a ton of freedom. They want her up and moving. Her first night in the new room was pretty bad. She got a severe headache again. But she's petered out and by Saturday she was pretty much back to the same Caroline. She was eating, drinking, chatty, energetic. It was amazing and so wonderful to see. Huge praise! Third hospital room:
Now she has another 3 weeks at least to get through. She'll be happy to know I brought her school work along, just waiting for the time that she was feeling better.
She has been incredibly blessed by our homeschool community. They have sent activity books and art supplies, new pjs and a plush robe. They've sent snacks and meals, balloons and cards. We have been overwhelmed by kindness.
The boys have been troopers through it all, too. They have had to do more things on their own and will continue to have to. I was able to come home this weekend for another shower and laundry run. Henry has been into playing rummy lately, so we played a few games. It became best out of three when he won two games in a row.
That was our crazy two weeks. We are so thankful for the Lord getting her and all of us through it. And one last praise - she sleeps through the night now. All night.
