23 February 2010
When Liam was in the hospital recovering from the tube placement, he laid in bed and talked. And talked. And talked. He literally did not quit talking for 7 hours! I know that's a long time and it doesn't sound plausible, but Rylie can attest to it. Once, we left to go to lunch and while walking out the door he was talking and when we came back twenty minutes later and opened the door, he was still holding that toy and he was still talking. Evidently, morphine agrees with him.
And I'm sorry for the quality. It was from my cell phone.
22 February 2010
As they say here in the south, 'Bless her heart', but our aid today was just not fit for the job.
She was a very nice lady.
But she couldn't even get up and down off of the floor very well at all.
In fact, she only got on the floor one time with Liam during the entire 5 hours she was here.
Granted, she was new and this was a different experience for her since her expertise is with more mature patients. So, I thought maybe I should give her some time.
But, I just didn't feel it was right. I didn't see her being the right fit here. And I have to advocate for Liam because he can't do it for himself. And although I hate to complain, I didn't want to waste time and wait for it to get better.
I hope the next one is a better match.
20 February 2010
I had my appointment with the coordinator who will oversee the aid who comes into the house to help out with Liam. I explained to her that I won't need an aid that many hours of the week but the main coordinator wants to keep it as it stands. This week I'm too busy anyway so she will only be able to come for two days. I was told I could have her come in the afternoon if I wanted, but why would I have her here during nap time? She even asked me if I wanted her to help out with laundry or cleaning. Um, I thought she was a CNA, not a maid?
She will be showing up at 8 am on Monday morning. She is a level 1 nursing assistant. So, that means that she can't even participate in anything that involves Liam's g-tube. But, that's ok. I don't need her doing that for me anyway.
But the best part? Her experience is all from geriatrics.
16 February 2010
I was warned last year when I originally applied for the medicaid waiver that the program here in NC requires you have an in-home aid. If you don't want the aid, you can't be in the program. I know it is set up that way to detour a lot of families from getting into the program. It is also set up that way in order to make sure that only those who really need it qualify.
I knew from the outset that if Liam got the approval we would get an in-home aid. But, I was told that since Liam's health issues are for therapy that I would only need the aid for a couple of hours a week in order to keep us in the program.
Imagine my shock when I was told yesterday that we will have an aid for 5 hours a day.
Every day of the working week.
Evidently, the lady who originally denied my application for Liam decided that since I homeschool my children, I could use the extra help around here with Liam.
It is ridiculous the way federal money gets wasted in this country.
15 February 2010
I mentioned a while ago about how I had applied to receive a medicaid waiver for Liam and he didn't qualify. We received a letter from the state saying that Liam wasn't disabled enough to qualify and that the medicaid waiver program in NC was for medically fragile kids and kids who would be institutionalized if not for the waiver. According to their criteria, Liam wasn't qualified for their program and that was fine by me. I knew he didn't need to be institutionalized! They have standards and Liam didn't meet those so that was that.
It has been frustrating though to talk to moms in other states who receive medicaid and support through programs that our state doesn't offer. I've felt that Liam has lacked in his needs being met but there was nothing I could do. There are many things I would love to do with him but those services just aren't here in our area.
Anyway, when I mentioned to Liam's therapists that he did not qualify for our medicaid program, they were quite surprised. According to them, Liam has needs greater than some of their other clients who receive the waiver. I was shocked and decided to see about appealing the decision for Liam.
When I contacted the CAP program they reiterated their stance on their judgment but said that if I wanted I could have an evaluation done of Liam. But, if Liam still didn't qualify I would have to pay the $300 for the eval. I said I wanted it, thinking that they would surely qualify him once they actually saw him and the fee wouldn't need to be paid.
Right before we were due to get the eval, I was contacted by the person who would do it. They told me on the phone that I needed to be aware that I had to pay for the eval and that Liam still wouldn't qualify. I asked him what he meant and he said that because the state had already decided no, they would almost assuredly decide no as well. So then, why would I pay for them to tell me no again? I then backed out of the eval thinking that was the end of it.
Fast forward a few months and I was talking to Liam's coordinator for his early intervention services. We were talking again about his denial for medicaid and she said the way I was treated was horrible. She couldn't believe he was denied before getting an evaluation. For the CDSA, it is against the law for them to deny a kid services without even evaluating them. They have to see them and put their hands on them to know whether a child qualifies. She told me that I should probably call the attorney generals office and complain about how we were treated.
I just never got around to doing it. October passed to November and I was gone the whole month for oxygen treatments. Then came Christmas and we were into January before I knew it. I finally decided to get serious and call the attorney general.
I found a number online and called it.
I got transferred to another number. I left a message.
They called back and gave me a different number.
I called this number and again left a message.
Someone from there called me and left a message for me.
I called back and let a message.
Finally, she calls me back and I'm home and she's the person I needed to talk to. I told her what had happened with trying to get Liam evaluated, how we were treated and what we needed. She apologized and said she would get me an evaluation right away. And that was it.
She did exactly what she said she would do and I had someone from the CAP office calling me that very next week. The sweet lady on the phone said she didn't understand how Liam didn't get approved the first time around. I just had to go back down to the department of social services first and apply for CAP again.
After having to reapply for Medicaid, Liam finally got his evaluation.
And yesterday he was finally approved.
11 February 2010
Liam had a small ring of dark blood the other day around his g-tube. I thought it very odd but when I looked at the site it all looked well and there were no tears or bleeding anywhere. The next day when I checked it out and was cleaning the site, I noticed what I can only describe as a large loose flap of skin under the top side of the tube. I racked my brain training to figure out how that had happened and the only thing I could think of was that somehow while he had been in his car seat he had hurt it (I know, I'm new to this g-tube thing). Anyway, I kept an eye through the week and the flap wouldn't adhere or heal to the rest of his tummy.
I figured if it was still bad next week I would take him in.
Liam had PT today and I had Cathy take a look at it. She said it looked like granulation tissue.
I called the ped, took him in and yup...it's granulation tissue.
Good thing I know what I'm doing, right?
This was one of my biggest concerns with this tube. I had heard horror stories and I have had numerous people reassure me that it's not a big deal and many people who have never had that problem. But here we are 3 weeks in and he is getting granulation tissue already.
Dr. Kid said that granulation tissue isn't worrisome unless it starts to look wet. Liam's was saturated.
She took some silver nitrate, assured me it doesn't bother Liam, and applied some to the area.
Any and all advice is welcomed on what to do to keep this from becoming a problem.
I have two tips so far- use the 2x2 pads and use Eucalyptus oil to clean it.
Anything else I should know?
10 February 2010
Here was the itemized bill. Let's see if you guessed it correctly. Let me just say, before you read the list, that ya'll clearly are not doing enough to recycle your plastics. Ahem.
- Zevex feeding pump with alarm $150.00
- IV Pole $ 30.00
- Enteral Supply kit, pump bags $450.00
- Enteral Formula $222.00
- Gastrostomy right angle tube $ 40.00
- Gastrostomy low profile kit $201.59
Yes, that's right folks.
The bags that hold the milk on the pole while the pump feeds Liam costs twice as much as the formula. Every morning I throw $15 worth of plastic into the trash can to never be used again.
There is something seriously wrong there.
04 February 2010
Liam got his first order of medical supplies last week. Now that Liam gets fed through his g-tube, viola!.... insurance pays for formula. It's a nice little caveat considering I didn't want the darn thing in the first place. At least we get to lighten our pocketbook, right?
Anyway, I digress.
We were delivered:
- Zevex enteral pump w/alarm
- IV pole
- 30 Enteral supply kit pump bags
- 123 cartons of enteral formula
- 1 gastrostomy tube
- 1 gastrostomy tube kit
What would you guess is the most expensive item in that list?
*eta: This item was $450.00
03 February 2010
I had to brag on Liam just the other week and comment about how he no longer bites himself. He had only done it a few times before and it was always his arm, wrist or thumb because he would place them in his mouth while on the floor and then bite as he explored his body. Then the bites would turn into the tonic bite reflex and he would clamp down and not release. It is an abnormal jaw reflex:
Well, after speaking into the universe the fact that he didn't ever do that anymore, he decided to one up me and do it not once, but THREE times in the last week. And all of them on the same thumb!
Liam's a righty and he is always playing and exploring with his right hand now. He brings it to his face, puts the fingers in his mouth and will suck and munch away. But this past week he decided to further the cause of cannibalism and try to take off his own thumb.
The first two times he broke the skin and all was okay after a short while. But this third time has done his sweet little phalange in. I truly think he might lose his fingernail.
Yesterday as I was making dinner, he was contentedly laying on the floor. After a short time of my absence, Rylie screamed for me and I came running into the living room to see Liam clamped down on his own thumb. When he let go the nail was white and he had broken the skin at the nail bed in two spots. He then cried non stop for a half an hour. Normally, he is over the bites in no time at all. I knew this one was bad.
Fast forward to this morning.
Liam spit up just a bit and I was wiping off his hand and cleaning it up when he started to whimper and complain. I didn't think anything of his finger and when it hit me that cleaning his hand was hurting him, I turned his thumb over and saw this:
You can see the bite marks down on the base of his thumb from a few days ago. All the marks on the nail are from yesterday along with the subsequent discoloration of the nail. And it is hard to tell in this photo but his right thumb is twice the size of his left thumb.
Why is that when you mention something not happening anymore, it then happens? I guess I should have knocked on wood? Isn't that what you are supposed to do to keep a good thing going?
02 February 2010
Liam is doing so much better now. The sites where the sutures were have scabbed over well and other than some drainage around the site, he seems to be healing pretty well. He still isn't too fond of tummy time yet, which is a bummer because not only does he need the time for strengthening, it's his favorite position to fall asleep in. I have adjusted him a bit while he lays on my chest so he can still fall asleep that way, but I haven't been able to put him down in that position for sleeping since the surgery.
I hate to admit how easy feedings have been. Ok. I will. It's so flippin' easy and I love that. It's wonderful to not have to lay him on the floor and then make him drink 7 ounces of milk from a syringe. I still hate the tube, but I am grateful for the chance this allows us in showing Liam how to eat right and enjoy eating. It's going to be a long road, I'm sure of that. But at least the pressure is off to get the calories in.
Liam is taking close to 15 ounces while he sleeps at night. We have a pump that continually feeds him while he's snoozing. We won't always pump this much at night. We are only doing it that way right now because the Dr. wanted him not to have any large amounts of food so his stomach doesn't get distended and tear the stitches (on the inside adhering his stomach to his abdomen). Once we get the go ahead, we will then bolus feed Liam the large amounts of milk he is used to taking in at one time and what ever we don't get in calorie wise during the day we will finish up with at night. But it won't be a continual all night drip of food.
Other than the outside stitches being such a big issue, the other issue we've encountered with the g-tube has been very frustrating. Liam isn't sleeping through the night anymore. He quit doing that the day he got it placed. He has always been a wonderful sleeper and rarely woke up. Now, he is waking numerous times a night and crying. I can't figure out the cry because it isn't his normal one. Honestly, Liam hardly ever fusses so I can't read his cries that well to begin with. I definitely know his sad cry and his pain cry but the ones at night are different.
I am hoping that this unfortunate phase will pass quickly...along with not swallowing his spit. Cuz to be honest, they are both driving me nuts. The spit more than anything.