This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

August 9, 2007

Thursday, May 6, 2010

So, you are wondering what happened to us? No doubt. Sorry about the delay. We thought the silence would be for a few days only, but hospital life has all kinds of unexpected surprises.

For example, last Friday, Megan arrived at the NICU to see Michael and found out that he was being discharged to the pediatric ward. Needless to say, we didn’t know this was even an option, and we thought we were staying in the NICU until we went home. So Friday afternoon, Michael and Megan both moved into room 543 in Pediatric South and met a whole bunch of new doctors. One of the blessings of the pediatric ward is that Michael has a room of his own, and parents can stay all day and all night with them. Visitation was generous in the NICU (any time but during shift change and when a procedure was being performed on a nearby patient), but parents couldn’t sleep in with their kids. Here, there is a sort of chair bed and bench. So, both Megan and Adam spent the weekend with Michael – our first time together where we could care for Michael as if he our child, and not one we borrowed from the nurses for a few hours. (Please understand – we love our NICU nurses, and Michael missed them very much when he went “upstairs,” but it was a long awaited day where Michael's daily routine and care was in the hands of his parents first and the nurses second. It is the other way around in the NICU, as it should be.)

I could go on and on about life over the next week, but I’m only allowed a limited number of characters per entry. [Author's note - the original Care Page had a 1000 character limit initially. This limit was later changed.]

Well, we were supposed to go home Monday/Tuesday-ish, if Mom and Dad could check off all the “training boxes” on the discharge worksheet, which we did. But, the home nursing care Michael requires didn’t come through. At first, the insurance company wouldn’t approve it, but they finally approved 5 days worth. Then, the in-network nursing providers could not provide sufficient staffing, and that is where we are. It’s Thursday evening, and we don’t have any idea when we can go home. We can go when the nursing agency can provide a sufficient number of nursing hours to satisfy the hospital, and not a minute sooner. (“Sufficient” is supposed to be 24 hours/day for 5 days, but the doctors will allow some gaps if they aren’t too big.)

So, here we wait. One perk is that Michael no longer needs to be hooked up to the leads. As soon as they are detached, Alex will be free! (Sort of.) What will be left is a pulse-ox monitor (measures oxygen saturation) during the night and/or when they come in to take his vitals. (It isn’t clear to Mom at the time of writing whether they will use the nighttime hookup all night or just at vitals. It’s a bit long to explain why.) Also, Michael has to wear the “blue hose” at night and in alternating 3 hour blocks during the day. So, there will be whole three hour periods during the day when Michael is unencumbered by wires and tubing. What a difference that will be!

Well, we’re out of space. More when we can.

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