As a Mom, I try to do the best I can. And as a Mom of a kid with special needs, it means always questioning if it's enough, if the choices I make are the right ones. Then I have one of those days when a few of the people around me seem to be judging the choices I'm making. Today was one of those days. And it just wasn't a good time for it. Usually I can buck up and deal but I'm tired. My husband had been gone for just over a week and, with the kids being sick and taking turns not sleeping through the night, it was just about too much for me.
I guess it began the other day when I was chastised once again from Dr. Woo for Ian being overweight. I know she's trying to make sure he is healthy and doesn't end up with a weight problem but I just don't see it. To me he seems like a healthy weight baby with a bit of chub. And then she found he has an ear infection. Which means another round of antibiotics, which we really try to avoid.
He's been on so many in his short lifetime I'm just afraid they will stop working the day he really needs them. It's scary what's going on in the world with the resistance to these. From the time he was born, they had him on every one possible to help kill whatever sickness almost killed him. And then every time he was admitted, and I mean every time, they put him on at least 2 "just in case" before they even knew what he had, which most often turned out viral. But what are my options? Of course there's trying to fight it naturally via our nutritionist's suggested supplements, which leads me to another issue that I ran into today.
The first person to see us at our appt today was Dr. P's main nurse. We don't often connect in the best way, maybe a communication thing, but it's sometimes tough. I had faxed over the recent list of supplements the kids are on just so they know all of what I'm giving him. She proceeds to tell me that one of them could actually be very bad for the lungs. That if started and stopped, it could collapse his lungs! And the other's are just not really suggested for children. But she's Chinese. And she said her Grandmother used to give her herbs when she was sick as a child. She was actually being a bit understanding but basically told me we need to look at it from another angle. But she'd have to see the ingredients in Chinese to tell me if any of them were similar.
After that one of the pulmonary lab's nutritionists actually opened the door on accident but said hi and wanted to see how things were. I asked her if she was the one who made the notes Sheila had given me about the supplements. She was quite defensive and basically made me feel irresponsible and then made me defensive. I explained I just needed to understand her notes because some she commented on some she didn't. And I wasn't trying to combat her suggestions, just trying to understand them. She calmed down a bit and began to explain. I won't go into the whole conversation but she basically felt there were a couple that we shouldn't be giving him, at least long term. And that many were the same as going to my local butcher and getting organ meats.
Then Dr. Platzker came in. At least he was happy! Even though Ian is sick, he said his lungs sounded good. He said if he wasn't sick he'd try to lower or take off his oxygen in the clinic to see how he did. But we would just wait for the sleep study. We discussed the weaning plan for meds and O2. This made me super happy of course!
He couldn't really see the problem with his ear but because Ian reacted to his scope he felt it must be the right one. But there was one strange thing. We have had Ian on Ipratium Bromide along with Xopenex either twice a day or every 4 when he's sick, and Budesonide twice a day and I wanted to confirm we should continue with that. He said he's not a fan of IB and we shouldn't have him on it. But he put us on it in February. And when I asked his nurse if we should discontinue it after Ian finally got over that bout, she said to continue until June after cold season is over! So confusing! But at least there's another 30-60 minutes of our day back so I didn't complain ;-)
When he was done I had forgotten to get prescription refills so another nurse was getting them for me. If I ask for them when I need them they seem to take a week. And at the same time I asked her about how we are doing his treatments. For some reason I always forget to check in about that. I've just been doing them pretty much the same since day one, blow-by, just as they had done in the hospital. But actually over the last few months, and more lately, I've been trying to integrate a mask because I know we are going to have to go to that as soon as we can. He's just too mobile to chase around with the thing.
She said we should definitely not be doing blow-by! He has to have a mask. So I explain what I've been doing and that I'm trying to get him used to it because when they tried to strap it to him in the hospital last year, he had a seizure while they where trying to keep it on him. She got the package of what to use. The mask we are using (holding it to his face to prep him for eventually having it strapped on) was the one the medical supply company gave me a while ago and it is actually a fish face to make it fun for the kids. She says I definitely should not use that for Budesonide. It has vents that blow into his face/eyes and it could harm his eyes! This whole time I've been doing his treatments and they've been harming his already messed up eyes! So frustrating! I actually asked the eye doc about this and he said you've got to take the pros and cons and weigh them and that now his lungs are more important. But I didn't know my method was harming him!
So she proceeded to show me how to give his treatment. She brings out a mask with a canister attached, with no straps and a very short tube so the prescription bottle sized canister is basically being held in his face. She says, you sit him in a chair like this (stroller) and cup your hands around the mask and hold it to his face. I'm looking at her perplexed. These treatments take 28 minutes for one set and 10 for the other, which I mentioned. And she looks at me like, and? Like of course he'll let me have my hands hold this thing to around his face for that amount of time. Then she has the odacity to say, "You need to be stronger than him". Really?!
You mean like when I'm holding him down to suction his nose with a horrible machine (which Dr. Woo says I should be doing all day long when he's sick), or when he's getting his blood drawn, or when I put an eye drop in his eye, or when I brush his teeth, or when I try to place the mask with the inhaler on his face (to get him Xopenex every 4 when I'm out of the house), or when he's gotten one of fifty or so IV's? Do you mean like that? The way she was looking at my felt as if she was insinuating that I don't do things to him because I'm not strong enough or because I don't want to deal with it. I could have just screamed at her! But I didn't. I kept my cool, as I always do, and said I would do what I could do and left it at that.
I go from this and head down the hall and Ian starts to loose it. I headed to the McDonald's in the hospital to get him an oatmeal and a milk. While I'm waiting he's completely loosing it and even the iPhone doesn't work to distract him. Then I look at the time and realize the blood lab is probably going to close and we unfortunately need a draw. So I grab the food and head there. It's 5:25 and they close at 5:30. The guy was not happy with me coming in but he said they would see us. There's no food in that area so I had to wait for my number while Ian was still loosing it. We go out to the hallway so I can feed him and of course they call our number. I did get some bites in so he was at least settled. But then comes another debacle.
This woman was obviously not a regular here. She brought us into a room with a huge chair and asked where we should do it. I said we usually have the room with the table so she took us in there. She was barely holding him when she poked and while I was trying to hold most of him, I figured she maybe was just that good that she could get in and out quick. I was wrong! She kept pulling out and digging in. It was killing me! Then she finally got it going and wasn't holding it so it popped out. All the while she was saying how strong he was. I felt like I was at UCLA! She suggested a heel stick and I said no way! So we went to to the other arm. Of course the poor little guy was completely loosing it at this point. I held him completely down and she asked me to hold the hand she was sticking! Not sure how but I was able to do it and she got it finally. But what a traumatic experience.
By the time we left, I was ready to loose it! We had been there 2 hours. Mike called and I just broke down. Going over all of what just happened. We agreed that he would grab some food and we would meet at the house where Lona was with Lila. I calmed down a bit but obviously not enough. Pulling out of the parking spot is when I smashed my door.
The other thing that's going on is that his PT and OT whom have pretty much been with him since coming home from the hospital might now be not an option. We had a PT sub the other day, who turns out happens to be part owner of the company. She explained that our insurance had changed what they were reimbursing and they can only offer 30 minute sessions instead of an hour. Or I could have 4-30 minute sessions of each per week, meaning 8 appts! We barely can work it out to coordinate the 4 we already have. But I really feel that 30 min is not enough. That's just when they are getting started.
So I've been dealing with insurance and the regional center to try to understand it all. And then I called another company that a couple of other Mom's have been going to, just to see if all the companies are in the same situation. The director there kind of knew what I was talking about but she assured me that they take my insurance and it wouldn't be a problem. Of course we would have to go to them, where we've been so fortunate to have the therapists come to us. Although I knew it was about time to move out of house. It's just too easy for him to break free from the therapist to bust a move to his other toys or books. He's ready for a purpose built space but of course that comes with germ possibilities.
On top of all this, we still don't know where Lila will go to school in the fall. And we are dealing with a few other kind of heavy things with her.
It's all just too much. But as a friend of mine always says, this too shall pass. Just not quickly enough ;-)
i can associate with so much of this. i got a speeding ticket going from therapy at napa to a neuro appt. at chla last week. . .only to learn that my neuro appt had been canceled. oy. . .not the same as smashing the door. . .but kind of.
ReplyDeletewe are doing a breathing treatment as i write. fortunately, emmy is asleep and i was able to lay the little fish mask on her face and she hasn't woken up. that's always nice for her and nice for me! i am so tired of breathing treatments!
we also had a sleep study two weeks ago and shockingly she was able to sleep with all of that stuff all over her face, head and body. i'm not even sure i could fall asleep with all of that! although she needed oxygen at night, she wasn't having any obstructions and her CO2 was good. so 2 out of 3 isn't bad, i guess.
sorry you are having issues with the PT stuff. i know it's tough to change. honestly, our napa therapy has been way more beneficial than any of the therapies we get at our home. we travel almost an hour there and hour home twice a week it's so good! so maybe this change will turn out to be beneficial! and at least it's not far from you. sending you a hug.