Monday, June 8, 2009

The Post In Which KnittyBitch Tries to See the Bright Side

Well dear readers, as you know, my son's breathing has been an uphill issue with the hubby and I. Earlier this week, after questioning if it might be related to the fact that I have an immune system disorder (my body fails to respond when I have a simple infection, and often times does not respond to infection in the "ordinary" course), or other medical problems which have occurred on both hubby's side of the family and mine, as well as questioning what I might have done wrong (if you are or know a preterm mother, the guilt is a common, though illogical, thing), we finally received a straight answer, of sorts. My son has been diagnosed with a chronic lung disease. It is gestationally related (he is over 36 weeks and still requires a fair amount of outside help with breathing), and sadly there is nothing that anyone can do to facilitate his recovery from it. This type of lung disease does not have any hard and fast rules for what can be done to make the child breath. Some things work for some children, some things work for others. But, there is nothing that is constant with any child, beyond time. So, at this moment in time, we are looking at "at least" another 3-4 weeks in the NICU. Because of how badly he responds to low-flow (i.e. the last time they tried him on it, he was at 600 oxygen on low-flow, and destated to 49% in less than 10 minutes), they want to give him more time before trying again. This has hit the point of frustration that is well beyond having anything left to say.

So the above was actually written last weekend. On Tuesday just past, we had our family meeting with the staff neonatalogist and the nurses, as well as the NICU coordinator and social worker at the hospital. At that meeting, we were advised that we were looking at at least 6-8 weeks of Riley remaining in the hospital, before they would look at sending him home on oxygen. They decided that they weren't going to even consider trying him on the low-flow again for another week. He just didn't get it. Both of us expressed our frustration at the fact that we honestly believe that he can do these things, but that he isn't being given a chance to try in circumstances that are optimal for success (i.e. every time that he was apparently tried on low-flow, we were never there for it, despite calling in to tell them when we would be). So on Wednesday, we arrive to be told that they are putting him on one hour low-flow during breastfeeding, and will keep him on the 9 hours of high flow as well. What? What happened to the statements of "he can't handle it, so we aren't even going to try"? Apparently our nurse for the day, who was one who had been there for many years, decided she also believed he could do it, so screw it, she was trying. The RTs agreed with her. So it was done. And he did amazing! They put him at 400, and for the entire hour, WHILE BREASTFEEDING, the lowest his saturation went was 96%. This is, I should mention, much better than he ever does on the CPAP. So the nurse charted how well he did, and decided that she would tell the Drs that he could handle the hour without issue. Thursday, same thing. One hour LF...they had to turn it down to 100 just to stop him from setting off his "over saturating" alarm. All this while breastfeeding. Amazing!

That evening, they moved Riley to the annex (which is a step between NICU and Level 2). It was agreed there that they would increase his breastfeeds and his low flow, since he appeared to be doing great with it. Since they are still operating under the assumption that he can't do it, though, they only increased it to 6 hours and completely got rid of the high flow, but what can you do. So, we are now doing 6 hours of low flow and 2 sessions of breastfeeding a day. Hopefully, since the nurses in the Annex are awesome and have seen how well he is doing and read his past charts (often times asking me "um, why is he still on the CPAP? I don't want to put him back on it, he hates it"), I am hoping that on Monday they will increase his low-flow time.

I must say, though, that I hate (and I mean deep down hate) that the doctors keep telling us that our son can't do things, and that he is not able to handle these things that we know he can, and finally agreeing with us. I have stopped attending the rounds for this reason. They piss me off. I know that they "have the child's best interest" at heart, but I am sick to death of fighting them, and it doesn't amount to anything, so...

In other news, I have started the OpArt blanket for Riley. Not too far into it, but after only a few rounds, you can already see the illusionary effect of it. I have also completely finished his sweater, and several more of the aviatrix hats.

I will post with pictures later, but for the moment, check out the chunky monkey:


Keltie said...

I'm so sorry to hear about Riley's lungs. I've been wondering how things were going and this wasn't the update I expected! GOOD for you for insisting on them giving him the best chance on the low flow, though! And I don't blame him for hating the CPAP. He must be so sick of it.

I went in for rounds a few times but stopped after a while unless there was something really specific I was worried about (like her IV burn.) I often found that they made me more anxious for whatever reason, and that they didn't so much want input from me.

It sounds so much like Riley is a strong, smart little guy. And so chubby and handsome! I love that he's mirroring the dinosaur on his outfit. :)

Stephanie N said...