Realization

This has not been a good weekend. At 2:00 A.M. on Saturday morning Kate and I woke up to about 5 people with flashlights in Wes room who informed us that the decision was made to move Wes up to the Pediatrics Intensive Care Unit (PICU). This was done because his oxygen needs had continued to increase. When Wes came home from the hopstial on Tuesday, hes was on 0.12 liters of flow, which is roughly 21.5% oxygen (room air is 21%). He was up to 3 liters of flow on Friday night, which equates to roughly 32% oxygen. They moved him up to PICU and tried what is called high-flow nasal cannula at 5-liters of flow. That still was not enough, so Wesley was put back on CPAP. Saturday was easily the worst day of my short parenting career. Wes was just inconsolable, and that is not his normal demeanor. His is "spirited," but there is always something that is causing him discomfort, i.e. he lost his pacifier, he has a dirty diaper, etc. There was nothing that I could do to calm him. He would cry so hard he would make himself gag and cough then start crying again. At one point on Saturday, Wes was on a CPAP of 6 (CPAP pressures range from 5 to 10, 10 being the highest) and requiring 90% oxygen. There was frequent talk of him needing to be reintubated and put on a ventilator. They gave him a dose of Valium on Saturday to try and sedate him and calm him, and it worked too well. Once the drug took effect, he fell into such a deep sleep that he was hardly remembering to breathe anymore so there was 4-5 nurses and docs in the room pinching him and stimulating him into breathing.

The current diagnosis is that Wes has an upper respiratory virus. He was tested for the "known" respiratory viruses but has none of those. Later in the day on Saturday Wes was at 60% oxygen and he would be calm as long as the Valium was still working, when it wore off, inconsolable rage would ensue. The docs decided to give him a dose of Lasiks, which is a fast acting diuretic designed to rid the body of any excess water weight, hopefully including any excess fluids in the lungs. He is also on a course of steroids to help reduce the inflammation in his airway. This combination of treatments along with increased breathing treatments have helped to reduce his oxygen requirements to about 45%, but he remains at a CPAP of 6. He is still very uncomfortable, I am sure because of the tightness in his chest and the discomfort of the CPAP.

Max did not have a very good weekend either. His blood gases continue to look very good, but his oxygen requirements have been very high. His baseline following the trach surgery was about 40-45%. On Friday that number was as high as 70%, and last night he was up to 80% at times. He does not seem to be sick according to both his attitude and his blood work. The docs turned up his Nitric Oxide from 10 parts per million to the maximum dosage of 20 ppm. This seems to have had a little bit of a positive affect and his O2 needs are currently in the mid-high 60s. He had been doing very well this whole week, and was a real trooper with his brother going home and only seeing Kate or I for a few hours a day.

Around the NICU, the experience of having a child in the unit is often likened to a roller coaster. My thought it that if your NICU experience is like a roller coaster, praise God. Roller coasters are typically over very quickly. Our journey has been much more like climbing the stairs of a 100-story high rise. Progress is slow and painful and in a moments notice something can flip you over the rail and you will find yourself once again on the ground floor looking up at the task ahead.

This weekend has led to two realizations for me. The first is how fragile these kids are. Wes caught an upper respiratory virus. It could have come from Kate or I, a gentlemen we passed on the way to the car on Tuesday night, etc. I know now what it will take to protect these boys from getting sick, and it looks a lot like living in a bubble. If you are not these kids' grandparents, you will likely not meet them for quite a long time. We want nothing more than to show them off, but we simply cannot risk that. They have 9-cousins who have seen only the boys' pictures, yet have been some of Max and Wes' biggest prayer warriors, and even when the boys come home, they will not be able to meet. When an upper respiratory virus that would give you or I some tightness in our chest and a bit of discomfort lands Wes in the PICU on life support, we have no choice but to take every possible precaution. This was not RSV or the flu, either of those would almost certainly have been much worse.

The second realization I have come to is just how sick these two boys are. That may sound strange, and I know they have been in intensive care for the last 5-months, but it took Wes' trip to the PICU to really drive it home for me. Wes currently resides in the room nearest the nurses' station on the critical care floor of the children's hospital. We have seen a number of kids whose injuries or illness have required them to be brought to the hospital via AeroMed helicopter get wheeled past Wes' room. One of the respiratory therapists said on Sunday that he is happy to see Wes' O2 needs come down because he was "really really worried about this little guy." This is just more evidence of how fiercely we will have to protect these kids once they are home. And also how thankful we need to be that God has allowed us another day with our precious boys.