Maybe?

So it seems like Spencer might get to come home the second week of June. Discharge Services came to talk to me. They told me that the hospital's service comes to deliver everything. They will deliver his oxygen, and the supplies that go with it and then anything he might need for his g-tube care...except the cleaning supplies like q-tips. If Spencer does come home on oxygen, we will get a portable tank, tanks for around the house, and a refill system. The portable tank is super tiny and in a backpack. Pretty awesome. We will also be able to go visit my husband's parents since the tanks for the weekend are small enough to fit in my VW Beetle.
His sleep study is on June 4th. We'll know the results most likely on Monday, and then we can probably get him home that week. We're trying to not get our hopes up, but it seems like he'll get to come home. His breathing is so much better. He is such a happier kid too. He has been sleeping so good! I think they will do a test to see how long he can tolerate room air, so then we will know about how much oxygen he needs and such at home.
If he doesn't improve in sleep study, then he'll most likely be getting a jaw distraction. We're really hoping it won't come to it. He wouldn't tolerate it well. He has been cranky for two days because he got his shots. I don't think he would be able to use his binky for a while, which is his crutch.

Is all government departments so useless?

Seems like the supraglottoplasty went well. He is so quiet. He had a bit of a cough yesterday, but nothing to be concerned about. His nurse said that he had been a little congested.

I've decided that g-tubes are the nastiest thing ever. Today, he was leaking pretty good out of it, and there was slimy goo everywhere. Super gross. They have him on feeds over an hour because he hasn't been tolerating feeds well since the surgery. They hope to get him back to 80ml tomorrow and we'll go from there. He was at 85 before the surgery.

Today I got the runaround from Medicade. I'm trying to get Spencer's medical coverage through the state backdated. His medical card coverage started on May 1st, which a month and a half after he was admitted. He got the medical card because we got approved for SSI! It's bitter-sweet because we never thought he would be considered disabled, but the extra insurance will help a lot. Medicade will pay anything our insurance doesn't pay. Anyhow, apparently to get our medicade backdated, we have to have a case worker. To have a case worker you have to apply for medicade. Getting it through SSI doesn't count as applying for medicade even though we have it...doesn't make sense. I went to the office to apply for medicade and I've decided that nearly all the people that work there are idiots. I clearly explained the situation and that it was for my son. They thought I was applying for myself. Sheesh. Anyhow, I have an appointment in nearly a month from now to probably get laughed at because they set me up for the wrong meeting. I called my financial officer at the hospital to see if she knew of anything to do.

And now I rant. It seems strange to me that when I need a service of the government, I can't get help. However, if I had a bunch of kids and no job, I would have no problem getting the services my son needs. This is maddening. Even if I wasn't married to my husband, I could have gotten medicade while pregnant and we wouldn't be in this mess. If one person took five minutes to come to the hospital, view our situation and look at our bank statement, they would know we were legit. I know there is protocol for a reason, but it seems useless anyhow because the system is taken advantage of anyway. I know there are good people who have medicade and welfare, which is good. I'm all for those people getting my tax dollars. But the people that annoy me are the ones that bust out five kids, don't attempt to work, and treat their kids like crap.

End of rant.

My husband and I were talking about everything last night. It was a bad mommy night last night. I was having a hard time and was pretty mopey. I realized that having a sick kid has made us better parents. We appreciate him so much, and we know how precious he is, in spite of his flaws. We have become stronger people, although having a sick kid makes you strong, but vulnerable. I am an absolute rock now unless it's about my kid. I can't even think about him without getting tears in my eyes sometimes. I think of all the lost time, but then realize that the parents of normal situations must feel the same way when they are at work. And we didn't lose that time, I realize as well, it just passed by, which is what time does.

Long day

Spencer had a MLMB scope and a supraglottoplasty done yesterday morning. They removed some extra tissue from his floppy airway, and things look a lot better. His tongue is still an issue in blocking his airway, but if the surgery yesterday worked, he won't have to get a jaw distraction- at least not yet. If he shows improvement on a sleep study in two weeks, they will just recommend oxygen therapy and reevaluate in six months. I also got pictures of his insides, which I figure he can take to show and tell when he starts school.
Tonight he had an episode of tachycardia and was up in the 225s. They are testing his potassium and electrolytes and as long as he doesn't have a repeat episode. I think he just worked himself up. He hates being inhibated, and will be until the morning in case of swelling. The creepiest part about it is that he doesn't make any noise. I can see him crying, but not hear him. It's heartbreaking.

supraglottoplasty..say that three times fast

On Tuesday Spencer is getting an MLMB done and a supraglottoplasty to relieve some of the swelling on his laraynx. If this works, he won't have to have a jaw distraction and he will hopefully get to come home. We're not too optimistic, because often these procedures have to be repeated and don't always solve the problem- but we are hopeful. The "surgery" is being done on his 2 month birthday, which sucks, but at least it's not as invasive as his g-tube placement.
Otherwise, he's doing pretty good. They finally switched his formula to soy, and he just got bumped up to 85ml a feed. He is a tad over nine pounds now. He is on 22 calorie formula instead of the normal of 20, so he'll get bigger. His breathing is getting better and he seems to be resting better too.
We are waiting on an orth consult to figure out what the plan is about his feet and hands.

Meeting

We had a meeting with outpatient services, an LPN, one of Spencer's docs and our speech path today. They have a meeting with parents every once in a while to address concerns that may be left unanswered from rounds and such.
We should be getting another orthopedics consult and a urology consult. They are also going to alter his formula so he starts gaining more weight.
We told worst case scenario is a trach or distraction or other surgery, which would keep him in another six weeks or so. Best case is they just let him grow.

Grande Finale

SO the end to a rotten day included going to the hospital and getting there right after Spencer popped out his g-tube for the first time. The nurse was doing his assessment and he was crying pretty hard. She said it popped right out. We had gotten there right in time to see stomach goo coming out the hole. Super gross.
The surgeon came up and inserted the tube and filled it with a little more water than last time. He didn't seem to mind getting it put back in. The area is really red, remaining from the surgery and from the popping. He went down to xray and had one done with contrast to make sure it was placed properly, and fell right to sleep when he came back up.

Update

We thought Spencer was going to get to come home early this week. He is not. Of course I am devastated. His sleep study didn't go so well, so now they are exploring other options. If it is fact his chin we have two horrific options, both resulting in a prolonged hospital stay. One is expanding his jaw bone, and the other is a traceotomy.

Figures he would still be in the hospital for my first mother's day.


They are planning on scoping him again. Currently I'm pissed off at the world. I'm pissed off at his LPN for getting my hopes up (they were preparing us for the likelihood of him coming home), the surgeons who will want to do surgery, God, fate, myself for various reasons, my drug addicted family that seems to have perfect children- pretty much everything. This sucks.