hospitalization #7
It’s midnight and I’m writing here sitting on an old hospital chair watching Maliyah sleep. You would think that the exhaustion from the last few days events would have taken over but I just can’t turn my mind off.
Tuesday 4, 2020
It all started Tuesday night. Maliyah’s two year old molars have been popping through and she had been pretty cranky all day. That night Maliyah fell asleep at at a decent hour but woke up around 10:30. I noticed that she felt warm to the touch and took her temperature right away. She was 99.4 F. I hoped that it was just a low grade fever because her molars were coming through. I continued to check her temp about every hour through out the night. It continued to hang around in the 99’s. You see, the reason I was so vigilant is because of her PICC line. We were instructed by the doctor to go straight to the ER if her fever went above 100.4 F. Apparently 100.4 F is the magic number that crosses you over from “no big deal” to “it could be life threatening”. Children with central lines especially can get a line infection easily and can go into septic shock very quickly if it isn’t caught soon enough. According to a medical journal from the NIH “Severe sepsis is a leading cause of death for critically ill children treated in a pediatric intensive care unit. Across the United States, 7,000 children die from sepsis every year, and infections account for OVER HALF the pediatric deaths worldwide.” So as you can see this is not something I take lightly. In healthy children, a fever from teething or the flu can usually be waited out, with Maliyah, even if it is the flu you can’t take that chance that it may be something more serious.
Wednesday, August 5, 2020
Around 3 pm Maliyah’s temp climbed to 100.4. I bundled her up along with a “go” bag and headed to the ER. Once there, they proceeded to do the usual work up - blood cultures x2, uriinalysis, urine culture, and chest X-ray.The doctor came back and said that it looked like it’s a UTI. We’ll give her one dose of antibiotics and then you can go home and to follow up with your PCP in the morning. I was bummed that Maliyah had another infection, but relieved that it wasn’t a line infection.
Thursday, August 6, 2020
The next morning she woke up pretty happy and alert. After eating a light breakfast I loaded her up in the car to go see our pediatrician. Once there, the doctor informed me that one of the blood cultures came back positive. My heart sank…this meant that she had another blood infection and that we most likely would need to fly to Oahu for care. Dr. Galiza said that she would call me back to let me know what the Infectious disease doctor recommended.
An hour later, I got a call from Dr. Galiza and she told me that the results of the second blood culture came back and it was also positive. This meant that her infection was systemic and that we had to get to the hospital fairly quickly to be life flighted to Oahu. Once we were back at the ER they proceeded to get more lab work and to give her a very strong antibiotic call vancomycin. We then waited for the flight crew to pick us up.
In the mean time, Adam hurriedly rolled up the work site at our new home and then drove all the way back to our place on the North Shore to pick up our “go” bags. He would catch a flight and meet us there.
The flight crew finally arrived and we took an ambulance to the airport and then boarded the flight for life airplane. Thankfully, Maliyah’s vital signs were stable and she actually was loving the ambulance ride and the prospect of flying on another airplane. The crew said that she was the cutest patient that they had every had!
Once we landed, an ambulance met us at the airport and took us to the hospital. Her admitting temperature was 101.4. This surprised us as she still looked quite alert and happy. As we arrived on the floor we were greeted by all the friendly staff that have come to know us over the last 5 months. This is our 4th admission since March. We’ve been so impressed with the doctors, nurses, aides, and everyone we have interacted with at Kapiolani. They are great with Maliyah and really make an effect to have us be part of the decision making process of Maliyah’s care.
Tonight the infectious disease doctor and the attending hospitalist came into our room and told us some disheartening news. Maliyah has a large blood clot that starts in her subclavian vein and ends in her bicep. They said that this is likely where the infection was coming from. They didn’t want to remove the PICC line until they had dissolved the clot so that they didn’t run the risk of dislodging it. This meant that she would have to start lovenox injections and would have to be on these injections for 3 MONTHS! This made me break down and cry. This poor little girl has been through so much and here ww are going to have to add more pain to her days.
So the best case scenario is that we are able to remove the PICC line on Monday if the ultrasound shows that the clot is smaller. Then after a week of antibiotics and thrombolytics we will hopefully be able to place a more permanent line in her chest called a broviac. We were hoping that by this point Maliyah would have been able to wean off of TPN but alas that has not been the case.
This is a time that we are holding on to God for His strength and peace. He truly has been there for us every step of the way. Thank you for your prayers, love and support. We have come across so many amazing people and it has all made this journey that much easier.
