He came home with oxygen and instructions to go anywhere from 1/4 liter to 2 liters to keep his sats at 92. He was on 1/4 for the first few days, but we have since had to bump him up to 2 liters to keep him comfortable.
He had his post-discharge follow up with Dr Russell on Tuesday, and she welled up with tears asking if we felt she had missed something when she saw him the week before his most recent admission. I assured her she DID NOT miss anything with the bald kid she knows so well, he went crappy so fast and it all happened after our visit with her.
In listening to him, she confirmed what we already knew-his lungs were beginning to sound crackly again, and he was showing a little increased work of breathing. But he was pretty feisty with her too, and she was happy to see that! A balancing act she called it. When she said she wasn't sure he was to going to be able to stay out of the hospital before his cath, or even before seeing Dr Kaine next week, the bald kid began emphatically shaking his head NO! She hugged him and rubbed his head and I was able to snap a pic of the two of them. We just love her!
He is really beginning to struggle with his feeds, and we may have to revisit going back to jejunal feeds to avoid an aspiration. He tolerates his first two feeds of the day ok, but by the third one, he's panting and sweaty, and retching, so we've slowed the rate way down and broken each feed up into two separate feeds so as not to wear him out. He's sleeping 12-14 hours at night and taking naps during the day. But when he does feel good, he's kicking and doing crunches and bridges until he wears himself out! To say Ethan doesn't tolerate pulmonary insufficiency very well is putting it mildly I would say.
If we can't keep him comfortable at home, we may be going back in. At least Dr Kaine is on service this month!
I worry about him being well enough for anesthesia for a cath. But I worry waiting that day won't come, and he will only get sicker.
I worry about whether Dr O'Brien has agreed to do the Hybrid version of the Melody Valve placement Dr Kaine and I talked about. And I worry if he doesn't, what is our other option. Dr Russell said we can still get him to another facility if someone else has a solution, but Ethan cannot travel by commercial air at this point and he would need to go by fixed wing medical transport. Argh! The worrying is worrying me. I think I'm holding it all together right now pretty well. Brian and I have had some serious talks in the last week about stuff you never want to have to discuss in regard to your children, but necessary.
I know I am silently hoping and waiting that seeing Dr Kaine next Tuesday will bring me some more definitive answers and a bit of relief from the worry.
Expect and prepare for the worst, and it won't happen.
At least that's what I keep telling myself.
While an in-patient, Ethan is still followed by the PACC Team, or Pediatric Advanced Comfort Care Team. Linda is our contact person that comes in and chats with Brian and I during his stays. This woman is amazing and I just love her, and what her team provides for families. She also confided something to me this last stay that just sealed our bond.
She gave me a book to read that I just finished.
"Shelter from the Storm; Caring for a child with a Life-Threatening Condition".
It is an excellent book, and for parents like us, I highly recommend it. I couldn't read it start to finish, had to put it down for a couple of days and then pick it back up when I had time to re-group. It's not stories about these types of situations, it's written from the perspective of a pediatric oncologist and another pediatric physician with the input from families they treated. It's about being able to process and accept and arrange a peaceful death for a child. It was very validating to me, and drove home some of the things Brian and I have already been discussing. If you are the parent, care-giver, grandparent, aunt, uncle, cousin, or friend to the parents of a child with a life-threatening condition, I suggest you read it, and I am happy to loan you my copy. Not all parts or chapters will apply to each case, but I guarantee it will help if ever faced with this situation.
In the meantime, life goes on. Hailey started volleyball camp this week and conditioning sessions at 6am!! Parker started freshman football camp, complete with weight and conditioning sessions from 6am-noon Tuesday-Fridays all summer. And on top of that, he is going to basketball camp immediately following football from noon-2! He was plum tired the first day he came home. He took a shower and went and laid down and was asleep before his head hit the pillow I'm sure. We had to wake him up and make him eat dinner before climbing back in bed!
Both kids are going to be busy this summer, which helps take their minds off of Ethan.
Ethan's PCA, Denise, was at the house today so I could sleep before work, and he's been missing social interaction so much, that after she left he cried for 20 minutes. It was very sweet to see how attached he's gotten to her. We are also interviewing a CNA tomorrow for help while Brian and I are both working on the weekends, and the Monday evenings I will be working. Otherwise we aren't comfortable leaving him alone with the kids right now. We feel like that's too much pressure and don't want to do that to them.
We are hoping to watch the Gunther boys play some ball this weekend, as it may be Kellen's pitching debut. But my work schedule change occurs this weekend, and we may not have enough oxygen tanks to keep the little bald guy where he needs to be! We'll just have to wait and see.
One day at a time is how we are taking things right now. One day at a time.
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