Much of my life cannot possibly be recorded in a blog. Why? Because when I’m living my life in the full on break neck speed that it seems to always be in, there’s not time to update on what’s going on. I find myself full of thoughts and reflections and ideas I’d like to capture and pass along… but alas, life is careening out of control.
So instead, I offer summaries. These are probably better for most of you anyway as the minutia of my life is probably very difficult to comprehend and is full of things probably better suited to medical analogs than to parenting blogs.
All that to say … here’s the summary.
We’ve been out of the hospital for a month now. WOW! That’s a long stretch for us. And I truly believe all the difference is the bipap. Now the story of the bipap finally has what we think is a conclusion. Remember how we couldn’t get it approved by medical insurance but they approved a vent that can run in bipap mode … turns out it’s because there is a weight minimum (66 pounds) and Manny doesn’t meet it. THAT’s the issue. So the doctor and I just have to sign a legal waiver. OR they could just give me the vent. Well the home health DME doesn’t want to do that so they want to go with the waiver but the pulmonologist doesn’t want to sign the liability waiver. SO… we still have the rental bipap. That’s right. We rented it for a MONTH and we still have it. The DME guy did bring me one. It didn’t work. For hours one night it said Manny wasn’t breathing. The pulse ox agreed. Maybe he’s sick? I thought, “What if it’s just the machine?” So I put back on his rental and voila! No beeping and not desatting. Ugh. I’d waited a month for this lemon. So the guy eventually (days later) brought a new one. It’s working so far… we still have the rental just in case but will turn it in this week if the one we have keeps working right. And apparently he’ll just have to work on the medical insurance approval. (Not my job thankfully.) This only took 6 weeks to do what should have taken hours!
Meanwhile on the nursing for nights so I don’t have to be up 24/7. We were approved to have nursing start on April 26 (our discharge date). The agency promised and promised. (Think used car salesman who doesn’t have what you want but has 100 of this other, older model.) They had the file for a MONTH and couldn’t even arrange for the initial intake meeting. I had our insurance worker doing background work to see if another agency could help. They could. We asked agency 1 if agency 2 could help in the interim and he got nasty. He fired us. Then he lied about me. It was disheartening. He’s now under Medicaid fraud investigation (NOT from me … but from the insurance worker). Well agency 2 had our file for 3 hours when they scheduled our intake meeting. We had nurses scheduled within 36 hours of getting our file. We had nurses in the home within 4 days of getting the file. WOW!
Night one … I liked the Nurse. She is a Christian and I was very thankful. Manny had the hardest time going to sleep and staying asleep. He was on full alert. Lots of changes for a little guy. But he wasn’t scared or upset, just awake. The next two nights same nurse. We decided to put him to bed in his old routine and move him. That worked great. 2 decent nights of sleep. No nurse on night 4. Night 5 a different nurse … manny adored her. He was flirting. Unfortunately, she was just filling in and is not a night nurse. In fact, it was her FIRST night shift ever and she was not a fan. She loved Manny just not nights. Nights 6-7 no nurse. So Manny slept in my room. (He did great.)
Night 8 was last night and things did NOT go well. It was back to the first nurse and lets just say I’ve NEVER seen a person Manny didn’t like. But he does NOT like her. Not sure what it is. You have to understand… Manny has met probably 100 nurses and 100 techs or more and he’s NEVER said he didn’t like one of them. He’s NEVER refused to let them do something for him. But this one? He screamed most of the night “NO look at me. NO touch me.” It was horrible. He wouldn’t go to sleep. He finally did but couldn’t stay asleep. She would go to reposition him and he pitched the worst fit EVER. At 3am I had to go rescue him. (Nurse did not approve. Whatever.) 4am he was screaming that his foot hurt (where the pulse ox is). She didn’t understand or didn’t want to help so I went back to the room and switched it from one foot to the other. She said I was spoiling him. Uh … no.
First of all … Manny is NOT spoiled. I doubt anyone who has ever met him would say he is. But the other thing is .. in 3 years of having this pulse ox, he’s NEVER once complained about it hurting him. He is the most pain tolerant kid I know. If he says it hurts, it hurts. Do something! I didn’t immediately see anything on the toe but I trusted him and switched it. He shut up. He slept. End of story.
Interestingly enough … today .. theres a HUGE blister on the bottom of his toe! Now I know what happened. I put the pulse ox on a certain way on his foot. It must have come off or something and the nurse reapplied it. She put it on upside down. The part that should go over his nail was on the back of his toe. I’m livid.
Well … the whole point of having a night nurse is to get some sleep. Last night was one of the least amounts of hours of sleep I’ve had in about 8 weeks! So really rethinking it.
As I type this, the same nurse is here again. But tonight I’ve got her in her room (I think Dan’s talking to her about church type things) and I had Kaley put Manny to sleep in her bed like old times. He was exhausted from so little sleep that he is already OUT. Not sure when I’ll move him but at some point. I hope she just doesn’t wake him up like she did last night.
All the things that bother me about her are minor and can be adjusted with time and tweaks. But if Manny continues to not like her, she’s gone. He was fine last week so we’ll give her one more shot to see if it was a change of heart or just a fluke.
Meanwhile … on other subjects …
His tonsils are still big and swollen. He keeps having ear infections. No long term solution there. No one wants to do the next steps as the next ones are HUGE and problems.
His labs came back today and they’re way off. Seems he’s got something brewing. We knew that though as he has been running low grade fevers off and on since Sunday. He spiked once but then back down so the hospitalist said we could stay home.
I truly believe that without the bipap, we’d have been in many times in the past month. It helps in so many ways.
Next, he’s gained 5 pounds all of the sudden and out of the blue. It’s really weird. I’m concerned. Something is not right but I can’t figure out what it is. I’ve got a call into the GI but I bet it’s got her stumped too. Nothing has changed in his life except the bipap. That SHOULDN’T cause weight gain. But who knows with Manny!
He’s got a weird seeping around his central line. Doesn’t do it every day but I used to be changing his dressing every 7 days and now I’m doing it 2-3 times a week. Very unusual and highly strange. Keeping an eye on it. Not sure what that’s all about.
His TPN bags are supposed to be the same. Daily he gets 1636 ccs of fluid. A pump gives it over 20 hours. It tapers up to full speed for the first hour and then runs for 18 hours at full speed and then tapers down to 0 for the last hour. Well, for the past few days, it’s running out of fluid before the hour ramp. I’m not worried about the few ccs of fluid he’s not getting. The problem is blood sugars. If you are getting 20% of dextrose and then it just suddenly stops, your blood sugars crash. But if you taper, then you should be stable for longer. (We all know how sensitive Manny is about blood sugars!) And so he’s left at the top with no taper. So I called the pharmacist today and we think we might have a solution. We’ll see tomorrow.
Not sure if there is an error in the pharmacy (she’s checking that process) or the new pumps we were given. Just last week we were required to trade in the ones we had for maintenance and I’ve had numerous problems since with them .
Meanwhile … Zoe had a birthday and a party. I’ll dedicate a whole blog to her soon. Her birthday is 5/25 and her gotcha day is 6/18 so maybe I’ll write a whole long Zoe post. But she’s having teeth troubles. Long story short … I think our dentist bill is about to be HUGE.
Our dishwasher broke over the weekend. (Not sure when/how that is going to be repaired.)
Our screens on our pool are all coming down so Dan is trying to stick them back up. He’s doing a good job on the side ones but the top ones are impossible to get without the right equipment (which we don’t have).
Rodents (likely squirrels) are tearing into our siding all over the house and making nests. (Dan is also working on that all weekend and we still have more holes. And new holes.)
We haven’t made any progress on getting Jacob situated in a room. Thankfully Mom is letting him stay over there several nights a week. He sleeps in Manny’s room on the non nurse nights and he has a cot in the boys room the other nights. But he needs a permanent solution.
So as you can see … these are just a FEW of the things going on around here. And you might have been wondering why I hadn’t called a few of you back! J
Love you all. Thanks for the prayers. We can use them all.
Love you all. Thanks for the prayers. We can use them all.