Baby Hayden and the Countdown to the Bone Marrow Transplant
Today we went to Texas Children’s Hospital in order to to receive the official schedule for the bone marrow transplant today. The morning started off like normal, with regular blood pressure, and an increase in .5 kg from our last visit. Kolt’s respiration rate was a little higher than normal, and there was a weird finding with his pulse oxygen levels. The low pulse O2 level in an indication of hypoxia, or an inability to deliver adequate levels of oxygen to his various tissues. Since he was not in distress, without a fever, and as playful as ever, the nurses retested the O2 levels about 12 times, and on various machines in order to get an accurate reading.
Unfortunately, the O2 levels continued to register around 80% saturation, with normal levels being above 97% (as part of the nurses trying to see if the machines were working right, they checked my pulse O2 and it was 99%, indicating that the machine was working). When the admitting nurses were unable to establish a good oxygen level, they started calling for reinforcements to come see if they were doing something wrong. Normally when the O2 levels are low in kids, there are signs of infection, discomfort, or distress. Since Kolt was not demonstrating any of these adverse symptoms, everyone in the hospital was pretty confused.
We have a stethoscope and digital pulse oximiter (thing that checks O2 in the fingers) at home, and we routinely check Kolt our for possible issues. On Tuesday, Stephanie was getting readings in the 82-85% range with O2, so we started listening for weird lung sounds, coughs, etc. Kolt had a very mild, dry cough, that only seemed to happen when he got excited, or was feeding, and his lungs always sounded clear so we did not think too much about it, but wrote it down in our “things to discuss on our next appointment” log. Since the next appointment was only 2 days away, we were not overly concerned.
The primary contact from the bone marrow team confirmed that the lungs sounded clear, but wanted to consult with a few other doctors regarding the low O2 since that can be a sign of Pneumocystis Pneumonia (PCP), a common inflammatory condition in immuno-compromised individuals. We were escorted to the emergency department in order to expedite the testing process, and a slew of immune tests were ordered looking for possible infections. At the time of this writing (10:00 pm February 15, 2018) the only test results that we had back were for the flu (influenza) and Respiratory Syncytial Virus (RSV). Both were negative. Chest xrays show some inflammation on the lungs, but the ER, bome marrow, and immunology doctors all commented that the lungs sounded pretty clear.
The current plan is to identify the infection, so that the appropriate intervention can be taken in order to prepare Kolt for the bone marrow transplant. At this time, they are anticipating postponing the transplant (which would have been scheduled for March 13th pending good vitals), but at this time we do not know. There are two potential viruses that could really put a damper in transplant, causing us to push it a few months out. There are a few others that could lead to a brief postponement, while others still may not affect the date at all. It is all pending the rest results, and if we are able to get the inflammation out of his lungs so that the oxygen levels can go back to normal.
As mentioned previously, Kolt is in good spirits, and is not appearing to have any issues with the process. The biggest thing that seems to bother him is the nasal oxygen cannula that he loves to pull out of his nose to chew on. Since everyone loves pictures, I made sure to take plenty, so the rest of the post will include some photo documentation of the day. If you are new to the story and are interested in reading about everything that has gone on so far with Baby Hayden, and wondering why we use the office website to share about our personal family experience, feel free to check out these posts: Blog Post #1, Post 2, Post 3, Post 4, Post 5, Post 6, Post 7, Post 8, Post 9, Blog 10.
