On 12/4 we saw pulmonology to discuss Lydia and her needing oxygen. We went into the appointment with data from PT that points to her needing oxygen because her pulse ox drops when walking (the same thing that Jilli does), she has stopped growing for months (she has only gained 2lb in a year) and she is resting more as her gross motor skills develop. The doctor seemed hesitant to do the test saying maybe we should hold off a few months until we are positive she will fail the test and I disagreed stating that if she needs oxygen now lets not be stupid in waiting until she is worse, that is a poor plan. The doctor agreed to a 12 hour awake pulse ox study. The goal was to do it that Wednesday however the pulse ox place that does the test was playing games so it didn't end up coming until Friday and we did the test on Saturday. Saturday was a very long day because most of the day the machine showed full green bars for getting a good read but didn't have any numbers on the screen. We are not new to pulse ox, Jilli has one on every night and for 3 months this year wore one 24/7. We contacted the pulse ox company and they didn't know why that was happening. That Sunday I put it on her again and got a few hours of good data. They were supposed to pick it up that Monday but I sat at home and they never showed up. Brent called and they said they were going to send us a new pulse ox on Wednesday in case they didn't have enough data from the first one. So that Tuesday I figured I would put it on her again and try for a few more hours of data. I know the numbers we have for Jilli, our guidelines and at what point we put her on oxygen, and I watched the numbers on this pulse ox and listened to it beeping for hours, and Lydia is well within the zone of when we started Jilli on oxygen. That Wednesday they never showed up with a new pulse ox nor did they pick the other one up. On Thursday Brent drove the pulse ox to them because they were not returning our calls and I could not sit home waiting for them all day because I had an appointment.
On 12/19 I called pulmonology to see if they have the test yet and the person who called me back seemed very confused but said they would call the pulse ox place and then call me back. I never heard back from that person. Yesterday I sent a mychart message to the doctor to see if they got the test in yet and first I got a message that they would send it to the doctors administrative assistant, and then I got a message from that person that they don't have the data yet from the pulse ox place. So Brent called the pulse ox place to see where the data was and they say they emailed the data last Thursday to puloonology to the email address on the script. So then I messaged pulm back and said that the pulse ox place says it was sent. This morning I got a message from the doctor herself that the test has not come across her desk but once it does someone will call me. AHHHHH!!!!
All at the same time we are noticing more resting and more of a struggle from her. She had PT yesterday which she is sitting more and more each week and having less energy. She went from 3mo ago being able to do PT for 35min to being able to do PT for 5min and then needing a break. She is 18mo old!!!! Jilli's OT even commented on how much Lydia has changed over this short amount of time and how she is worried. Lydia only had enough energy to play in the water park for about 5min at a time this weekend and then would need us to hold her like a baby. This isn't typical 18mo old behavior, let alone typical Lydia behavior a few months ago
I feel stuck. The pulse ox place says they sent the data, the pulmonologist says they don't have it. Neither party seems interested in figuring out the issue, both would like to just sit there until it is magically fixed but I don't know how to magically fix this without either of them picking up the phone and calling the other one.
This is also another reason why I think its crap that our hospital outsources pulse ox testing. Because we end up with situations like this where they wipe their hands of it but at the cost of the patient.
Its not that I am looking forward to Lydia being on oxygen. I doubt she is going to like having it on. Jilli was older when she ended up on oxygen and I could reason with her, there is little reasoning that happens with an 18mo old. This is going to be hard. Let alone the logistics of two kids on oxygen. I am not asking for this for my convince. Right now it is convenient for me that my 18mo old will sit on the couch for an hour resting her body after playing for a few min, but its not good for her. Its not good for her brain development to be resting so much, play is learning. Its not good for her body to not be getting the oxygen she needs. This isn't fair to her to know she is not getting enough oxygen and not be doing something about it. I just want to help my baby!
On top of it this week we got a denial for Lydia's speech therapy from our primary insurance. Apparently our insurance only pays for speech if you had a stroke, have cancer or autism. This is another thing that pisses me off, because its no where near the first time where I have gotten a letter that said that they would cover the services if she had cancer or autism but because she doesn't services are not covered which is crap. Cancer and autism are not the only things that need speech or the other things that have been denied on those grounds. I am not saying that people with cancer or autism shouldn't be able to have speech as well, as I think they should, I just don't think everyone else should be excluded. But it happens a lot, cancer and autism have more research funding, more celebrities fighting for them, more fundraising and name recognition... and I am not saying that it is a bad thing that they have research funding or any of the other stuff, but what I am saying is that there are millions of other things too, millions of things that have equal prognosis, millions of things that do not have a treatment, millions of parents who get told like I have "at least your kid doesn't have cancer" in a way that is meant to say that everything going on with your kid is nothing (this has been said to a friends of mine who have lost kids to genetic disorders at a young age), that it is a punch in the gut to get another letter saying that our plan excludes something unless you have one of those two things. Again I am not saying people with cancer or autism should get less then they do, nor am I saying either of those things are easy, I am not downplaying them at all, I am just saying that they are not the only things in the medical world and that other things often require the same needed services. Lydia deserves to be able to communicate, that is a basic human function, and she needs speech to help her with that because she has a muscle disorder. Thankfully we have medicaid which will pay for her first 35 visits and then we will have to ask for more every 6mo. But with everything going on in Washington I am really worried about what is going to happen with funding for medicaid (if you don't think cuts are happening then you are drinking some strong kool-aid)
Also this week we got to play the fun of our pharmacy and our GI office have some glitch in the computers talking to each other. Both girls were out of refills for their one acid reflux med, this med is very important for both girls as it helps to prevent stomach acid from being refluxed into their lungs, so the pharmacy faxed the doctors office for refills but it came back to the pharmacy saying doctor denied dose, but when I called the doctors office they never got the fax, and didn't deny anything. The doctor was able to send a script directly but we need to figure out why this keeps happening because it is not the first time. The hard thing is the med is hand compounded by the pharmacy and we only get one extra day therefor with this all happening I have to run to the pharmacy this morning before I can give morning meds because I just got the message that the meds are ready, which is really good because we don't have enough for this morning.
But I don't want to leave this all on a sour note. Jilli did have an awesome birthday at Great Wolf Lodge, even with the fire that happened there Sunday morning (no one was hurt but a hotel first at 6am makes for an interesting way to start the day). We had a great night last night with Jaime and Jason and Emerson to celebrate Christmas and will have Christmas celebrations with people for the next several days. I am excited that tomorrow we are celebrating Christmas the 4 of us and this is always one of the favorite days of the year. I am excited that Jilli's chair was funding in 24hours of the registry going up and that we are currently only $50 away from being able to get the tray for it as well. I am blown away by the kindness both in messages we have gotten from people and in the money raised. I have cried in aww multiple times. Jilli's friend Caroline also came over to play this week as they are in the area right now so the girls got to play playmobil together which they loved and Stacy and I got to talk which was nice.
Its been a hard few weeks with medical stuff but I am thankful that the holiday season is here and that we can focus our eyes on baby Jesus (as Jilli will tell you, Santa and gifts are nice but Jesus is what is most important) and see friends and family. I am hoping today is a day of resolutions for the medical battles we are in right now!
