Ginger wrote up the complete story of what’s been going on with Ian this week…
On Saturday Ian wanted to be held more than usual, so we thought he might be coming down with something. Sunday he started having a high fever and was very sleepy. I was worried that he had a urinary tract infection since the Monday prior he had had a urology procedure at CHLA and had no cough or runny nose.
The next day, Monday morning, it seemed his fever was broken and he was acting better, but we still got an appointment with our pediatrician. At the pediatrician’s office, he started acting tired again, and when the doctor listened to him, she heard crackling and wheezing in his lungs. She took his blood oxygen and it was 88%. They gave him an albuterol treatment and after that his blood oxygen went to 92%. Our pediatrician (who just last month sent Ian to CHLA in an ambulance from her office with pneumonia) said that we needed to go to the ER because with his chronic lung disease she wanted to make sure he didn’t get any worse.
Grammy Wren met us at the pediatrician’s office to take Caid and Henry, and Ian and I went to the CHLA ER. In the ER, doctors didn’t hear any wheezing or crackling, they took a chest x-ray, which didn’t look to have any pneumonia. We stayed in the ER for most of the day on a blood oxygen monitor which showed him to be saturating at 97-99% the whole time without any oxygen, so they sent us home on breathing treatments with a plan to follow up with our pediatrician. He had wanted to sleep most of the day that day in the ER, but the doctors thought it was likely due to fever and a virus.
Tuesday he continued to have a fever and seemed to progressively look like he was feeling worse and was still very sleepy and wanting to be held, so we brought him back to the ER at CHLA. While in the ER, he developed a rash on his trunk and back, and petichiae on the inside of his elbows, and he continued to act more lethargic, although he was saturating well without oxygen help. The doctors quickly decided they would admit him, started an IV and two kinds of broad spectrum antibiotics, did a repeat chest x-ray and blood work showed low platelet counts.
Once we were transferred to the oncology floor he started desaturating and needed oxygen.
They continued to do blood draws as hematologists ordered HLH specific labs, coagulation studies, and repeat CBCs to watch platelets (which continued to drop). By morning he was requiring higher oxygen support and as the day progressed, he was working harder to breathe, not opening his eyes as much and I was fearing septic shock (he looked and acted like Gwen did right before she went into septic shock). I shared my fears with the doctors and they were monitoring his blood pressures closely, which started dropping – and they started giving fluids to try to maintain his blood pressure.
I requested that they have PICU doctors consult right away instead of waiting and as those doctors arrived, his blood pressure continued to drop and he started coughing and it sounded very wet. They decided to transfer him and he went into shock. They sedated and intubated him, and Ian came through it okay. They continued to draw labs which showed his platelets continuing to drop, so they transfused him with platelets. They placed a central line which developed a bleed around it (from low platelets) and could not get an arterial line because of him being in shock and bleeding. They decided to hold off on the arterial line and he was stable for a few hours.
Late evening as they were suctioning him (something normally done when on a ventilator) he crashed – his heart rate, blood pressure and oxygen all went down and they called a code. They gave him rescue meds and hand bagged him (meaning they took him off the ventilator and had a respiratory therapist ventilate him by squeezing air through an apparatus to ventilate him) Once his numbers were better, they decided to place an arterial line with a cut-down (minor surgical procedure). After the arterial line was placed, they switched him to an oscillating ventilator and gave him nitric oxide to help with pulmonary hypertension. He responded well to those and they were able to stabilize him.
The rest of the night was fairly quiet and Joey and I were able to sleep for a stretch.
lamby
Today Ian has been improving, his blood work looks better, they have been able to wean the settings on the ventilator, and they have identified the virus they think caused him to get so sick. He tested positive for metapneumovirus, which is a virus that many people get and have viral cold symptoms with, but since Ian recently had a transplant and has chronic lung disease, he is more prone to developing serious complications.
They performed the bone marrow aspirate and it looked good, they feel confident that it is not a reactivation of HLH. Goal is to try to get him back on the regular ventilator tonight if he will tolerate it.
supporttheadams 