Logan had a few episodes last night again. He didn't need to be bagged for breaths, but did need stimulation to come back up. He was even on the Bi-pap machine with the annoying nasal prongs he had last time. I came in today and saw his red nose being poked by the prongs. I was able to feed him 2 oz of formula just now as he was wide awake when I came in. He just fell asleep and I would be watching him and the monitor like a hawk now.
Action Plan for now:
1. pH probe scheduled for Monday - continue to stop all drugs.
2. consult from Patient Care Coordinator - I expressed concerns that insurance doesn't cover an oxygen monitor and I am worried he might have more episodes at home. We might not be so lucky that every time he has an episode, i am there to help him. The apnea monitors don't work, so we need something to check his oxygen saturation at home.
3. Physical Therapy consult - to teach me how to position him or play with him, so as to build his muscle strength.
4. Ped will check in with pulmonologist to see if he needs the bi-pap machine still.
5. Ped is waiting for the Hearing Center to call back regarding the hearing test for Logan.
I asked the ped and the neurologist whether these episodes are going to cause damage to the brain. They both assured me that because his episodes are short and all lasted less than 1 minute, it should be fine.
So a social worker came in just now to ask me about the oxygen monitor and if Logan has filled out paperwork for SSI or Medi-cal. I told her we haven't done any of that. She is calling the California Children's Services to see if Logan qualifies for Medi-cal since he has a chronic condition, and Medi-cal might help with the oxygen monitor.
11:05 a.m.- Had an episode. I knew it's coming. It always comes after he feeds and then goes to sleep. I saw those wiggly wavelengths and the color of his lips slowly change. Didn't need to be bagged and came back himself. Episode lasted less than a minute.
11:30 a.m. - Social Worker came back and said she talked to the CCS coordinator and we don't qualify for Medi-Cal because we make too much money (over $40k). Doh! We probably have to pay out-of-pocket for the oximeter. Oh well, just $500 Ha! Well, whatever it takes to make sure he's ok.
12:15 p.m. - Pulmonologist stopped by to see how he's doing. Told her the Action Plan and updates. She suggested keeping the bi-pap for another day to see since he's on antibiotics and it takes him a while to get used to it. I showed her the oximeter that was recommended to me by my cousin and she said it looks like what they have at the clinic. Seems like a good one.
1:00 p.m. - came back from lunch and nurse said the tech came to do the ultrasound of his kidney just now. Don't know results yet. Occupational therapist stopped by while I was feeding Logan. Suggested another nipple for him but it seems like what we've been using is more suitable and he's familiar with it.
2:15 p.m. - Chaplain stopped by. Chatted a little and said a prayer for little Logan.
2:18 p.m. - Logan is asleep now and I am on the watch for any episodes. He seems to always have those when he falls asleep after feeds.
2:55 p.m. - almost had two episodes within the last 15 mins. I saw the wavelengths of his respiration and was able to tap him a little on the chest for him to let out a breath. Whew! Didn't turn dusty this time. But it's just because I so happened to be looking at the monitor.
3:15 p.m. - Had an episode and this time it was a longer one and he needed to be bagged. Now he's sleeping like a baby again. One thing good is the new nurses taking over the new shift got to witnessed his episode and to see how his face changed. Oh, and he pooped after the episode. Everyone saw "it" coming out!
4:15 p.m. - started feeding Logan since he's awake. I want to be able to feed him before I leave because I know I can get him to eat. It's pretty hard to feed Logan.
5:00 p.m. - Leaving to pick up Aidan. Let's hope Logan will be fine.
3 comments:
Seems like feeding triggers the episodes or somewhat related to it. Have you ever consider having a "Swallowing Study" done on Logan? Sometimes the milk being a thin liquid with a fast flow rate happens to enter in the airway,it's almost like drowning in the ocean. My son has the swallowing study done when he was in the hospital. The food ingested in the study was a liquid with some form of radioactive dye. The swallowing process was captured on video tape therefore they can review the swallowing process. It may be done by Radiology.Please keep this in mind just in case it may be helpful.
By now you probably realized you're the central point of contact. Believe it or not, you became the CASE MANAGER of Logan. Nurses and doctors get day off and change shift. Mom does not. Mom is always on the alert. You talked to every specialists, you keep all the update in your head. You are the voice of Little Logan. You advocate for him and fight for his benefit. There is nothing in the world that prepare you for this. But you're doing what you're called for; to care for your sick baby boy. Virginia....You're marvelous. I want you to know you're not alone on this. Everyone who reads your blog is behind you and pray for you and your family. Hang in there.
Peggy, thanks so much for all of your encouragement. This is so hard, and seriously, I don't think any mother is prepared for this. I'm hanging in there and definitely advocating for Logan and updating everyone involved. He had a GI study done when he was in the NICU. I am not sure if that's the same one you're talking about. He drank some dye and then got an X-ray of his GI tract. Everything was normal and the doctors didn't think it's necessary to do it again. Actually, his episodes happened even when he's on IV. It's hard to predict.
Hi Virginai:
The swallowing study that Peggy has mentioned is not the same as the GI study. The later is check the reflux. The former is using a different dye compare with the GI study. In case he has the dye swallo into the brochio, this dye would not hurt the lung. Her suggestion is a good idea.
CC
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