Odds and Ends

A big thank you to everyone for your help, knowledge and prayers. They have been greatly needed and appreciated. This little fork in the road got a bit bumpy and I'm hoping it will all go smoothly from here on out! Being three hours away from the Dr that put in the tube has me depending on my internet friends for wisdom and guidance in my mini times of crisis! =)

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Liam is a great sleeper. He normally sleeps solidly through the night and very rarely wakes up. Since his surgery, he has been waking up frequently through the night and crying in pain. After getting his stitches out yesterday, he slept great last night and only woke up once. He even comforted himself back to sleep. He has also been without pain meds since yesterday morning. And he seems to be returning to his former glory, slowly but surely. He was all smiles when he woke up today.

Iv fluids must be high in calories, eh? Because Liam gained 13 ounces in two weeks, all while having a g-tube placed and going without food for pretty much two solid days. I told him he can't keep that up unless he starts walking soon. Then he can get as chubby as he wants. And we didn't change his formula any. He is still drinking the same kind he was before the tube. Go figure. He's never gained like that before.

And, because Liam likes to be as unique as possible, he decided (following the removal of his NG tube during his hospitalization) to quit swallowing his saliva.

Yes, I'm serious!

He not only has a lot more saliva than before, he is spitting it out of his mouth and letting it drool over everything and everywhere. It is so gross. I can't figure this one out at all.

Whew.

I headed to the pediatrician today to have her check Liam out. The site is not infected but his skin must be pretty sensitive and has gone into overdrive because of the sutures. Because both of the sutures had torn over 1/4" it was leaking and causing even more irritation and wasn't healing. She said it had been long enough and she could take out the sutures. He screamed as soon as she started touching him and for the entire time it took her to take the fishing line out.

You can see the big holes where the small sutures were. It has now fully scabbed over for the first time. The redness seems to be waning and he is feeling much much better now. He actually let me touch him tummy for the first time this afternoon without crying.

Now, I just need to get his reflux back under control. It has flared up something fierce since placing the tube.

Gah- Does this look infected? I think he needs to be seen. Shoot.

I guess I'll call first thing in the morning. It's redder today than it was yesterday. Dang dang dang.

Hastened healing please.

Alright, all you g-tube mommas out there. Please tell me this gets better!

We got discharged on Sunday with no pump. It seems social workers only work the week days and if you need DME to go home, well, your just out of luck. Unless you want to stay an extra night. Which we didn't. So I gave them pure confidence in my abilities and got an ok based on my promise to get a pump once we got home.

So, I have been gravity feeding him 100 mls every 3-4 hours. The problem? Liam is not feeling the benefits of the tube yet. In fact, I'm pretty sure he's extremely ticked off by it. He's actually torn both of his sutures out some. And, for the last 4 nights he has woken up crying every two hours through the night. He's an awesome sleeper normally!! During the day, I can't move him into certain position or he locks his body and clenches down tight. I can't even put him in his car seat! It got so bad today that I called one of the NP's from Chapel Hill and I told her that Liam seemed to be in a lot of pain and I asked her if it was normal. She said he should be getting better every day. Well, um... no. He isn't. He's worse now than when we left UNC! He didn't mind his 2 hour and 45 minute car ride home on Sunday. Right now, I can't even get him into his car seat while it's sitting in the house!

She asked what we were using for pain. Um, nothing. We were discharged without any plan for pain.

She apologized and said he should have gotten a script for something to manage his pain and she promptly called Realo and ordered up some hydrocodone (or by it's common street name: Vicodin). He's gotten two doses of it today and while he did have intermittent times of peacefulness, he still isn't my Liam.

PT came to work with him this morning. I didn't figure she would be able to get far, but it was worth a shot. She couldn't get him to do anything. Before leaving she said, "I know you are thinking that you probably shouldn't have gone through with this. But in time you'll see it was the right decision."

Uh huh. She knows me all too well.

Please, tell me this gets better!

That is not a kiss mark. It is a reaction to the tegaderm (tape used to hold his ng tube in place). I have showered him with kisses all the same.

After.

Ticked off. He hates the NG tube.

I posted this picture shortly after the surgery while he was in the recovery room. He still hasn't changed his attitude toward the NG tube and sent the nurse running for morphine to 'relax' him just a bit ago. Luckily he gets it out tomorrow morning! And he is now sleeping comfortably for the first time today since the surgery.

Liam is NPO (no food by mouth) so he is getting IV nutrition right now. They will start feeding him through the g-tube tomorrow and if all goes well, we should be home Sunday morning.

Thanks for all the prayers. So far so good!

Waiting to go back and hamming it up. Liam has something in common with Michael Jackson now... Propofol. He should sleep good.

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Finalized plans

We are scheduled for surgery tomorrow morning at 8:30. Please say a prayer for us that it will all go smoothly and there would be no complications from the placement. we were told that we could be there any where from 2-5 days. It all depends on how well Liam takes food through the tube once it's in.

Liam has not been under anesthesia since his NICU days so although I am at peace with our decision, I am not happy about it. =) I just want to get it over with and get back home.

I'll post tomorrow when it's all finished.

Trials

Because Liam exists in a world where he confounds even the most well trained and well practiced therapists, we have decided to trial something new. Again. Because ya never know what is going to work/help/sink in.... whatever.

Liam started Total Motion Release last week. In simplified terms, it's working the 'good' areas of the arms, legs, and trunk and stretching them. You don't work the weaker side. According to this new therapist, it's done amazing things for injured people. And because I have heard that before, I won't hold my breath. =) But still, since you never know what conduit God is going to use to help Liam, we thought we would try it out for a while. It's pretty easy to do and it requires a lot of hands on from me, which I do anyway. Liam is pretty flexible so he makes the work easier and he doesn't seem to mind doing it. Yet.

Well, I still have Liam scheduled for the g-tube on Thursday. But it seems the GI clinic doesn't have him scheduled. Sigh.

I have to call tomorrow to another office (the one the GI actually putting in the tube practices) and see if they know what's going on.

I am now fully mentally prepared for Thursday and ready to get this done. I'm praying I don't have to mentally prepare twice.

Here I go again...

It has been talked about so long that I know you all think we must be crazy.

First we are going with a g-tube, then we aren't. Then we are again. And then we aren't. The decision to get Liam a gastronomy tube has been more complex than I thought. Not only have we had the medical side play into our choice, we have had the emotional factor play a very prominent decision in whether to go ahead with the surgery or not.

Shawn and I have been adamantly opposed to the g-tube from the very beginning. For us, it has almost been like a sign of defeat to say that he needs one. And he hasn't actually needed one as of yet. His situation has not been so severe that his life depended on him getting one. Although he quit drinking from a bottle last May, he has continued to drink from a syringe keeping his weight on the rise and the g-tube in the back of our minds.

Back in December we had made the decision to go ahead with the tube because Liam was having some feeding issues again. When I called our GI, the earliest appointment they had available wasn't until January 21st. I went ahead and scheduled it for then.

Now, as the time has approached, Shawn and I have greatly questioned the need for it. And last weekend I had this realization occur; we were planning on doing a surgical procedure in order to take the load off of Liam's mouth with nothing in place to help teach him how to eat properly once the tube was in. So, what was the point?

I talked to our OT and vision teacher (she greatly wants Liam to enjoy eating, which he doesn't care to do yet) and told them my fears. Why do surgery if nothing is going to change? So, Kathleen, my OT, got right to work on trying to figure out what needed to be done to help Liam learn to eat right once he got the tube. She made numerous calls to see if she could get the answers I was looking for. One of the places she called was the Chapel Hill feeding team who saw Liam 5 months ago. Granted, they see a lot of kids so they wouldn't remember Liam specifically, but they do see a lot of kids. Because they are in the trenches with these kiddoes and work very closely with the GI department they have a lot of experience with kids like Liam. Kathleen asked them if, with their experience, they could see Liam's behavioral issues getting fixed with out getting a g-tube. In their opinion, the answer was no.

Because Liam drinks from a syringe and because he does eat from a spoon and take in solids, we have been able to just coast along where we are. We had a weight check today and because Liam's reflux has been under control and because we have been able to increase his amount of food at each setting, he has gained a whole pound since our last appointment. He's now 22.1 lbs. That's a great weight and not one that sends alarms ringing sounding the call that this malnourished kid needs a g-tube. Far from it. But, Liam's behavior issues with feedings are what has brought us again to the brink of surgery for Liam. Here's why:

All of Liam's nutrition comes in through his mouth. But, he doesn't do it properly. He gags when he sees a syringe because he knows what is coming. He gags when you first put milk in his mouth even though we've been doing this numerous times a day for 8 months. He pushes his food out with his tongue when he eats solids. All of these bad behaviors are fixable with proper oral motor therapy, speech therapy, OT, etc... But, because he uses his mouth for total nutritional intake, we have to make him take a certain amount of calories each day. We can't focus on whether he likes this food or that one. We can't focus on whether he took three good sips of milk from a cup. Because whether he does good eating or drinking isn't the point right now, we still have to get the rest of those calories in somehow. It is much much easier to try to teach him to eat properly if all of the pressure is removed. He can eat a few good bites and be done. He can drink a few sips and be done. He can learn to enjoy food on his own time and in the proper way.

Because his feeding issues have now come down to learning the proper way with out pressure or fear, learning proper oral skills and eventually being a self feeder, we have decided we are going to go ahead with the surgery. Once we get past the issue of the surgery, I hope it will be a big blessing for Liam to not have to lay down and see me coming with a syringe full of milk and gag. And I hope that Liam will start to enjoy food, not just accept it as inevitable. And I pray that he will be able to get the help he needs to learn how to eat and drink right.

One thing through all of this that I am excited about is that Liam is now going to be able to get speech therapy for the first time. I have wanted speech for a long time and it had to come down to surgery for him to get it. I guess we are no longer going to cruise. We are going to go full steam ahead. ; )

Poking or non

As if our children don't get put through enough vaccinations these days, the American Academy of Pediatrics, the U.S. Centers for Disease Control and Prevention and the American Academy of Family Physicians have decided to modify the vaccination schedule again by including the following:

• A recommendation that children older than 6 months receive the H1N1 influenza vaccine.
• A newly licensed HPV vaccine for girls, known as HPV2, to protect them from cervical cancer, which can be caused by certain strains of HPV. Girls should get their first dose of either the HPV2 or the earlier HPV4 vaccine, which is still considered effective, around age 11 or 12.
• A suggestion that a three-dose series of the HPV4 vaccine can be given to boys between 9 and 18 years old to prevent genital warts.
• A statement that the use of combination vaccines are generally preferred over separate injections.
• The need to revaccinate some high-risk children who have already received the meningococcal conjugate vaccine (MCV4). Kids at high risk tend to be those with immune system disorders. Booster shots aren't recommended for those whose only risk factor is living in a dormitory setting, according to the new vaccine schedules.

Yes, well I will surely be running out shortly to get my 11 year old vaccinated against genital warts. Because they say I should.

Ahem.

2010

2010

It's a new year!

Shawn and I (as chaperon's), along with Rylie, Ian and our contingency from Temple, headed to Liberty University in Lynchburg, Virginia to attend Winterfest. We rung in the new year with 8000 teens, pre-teens and youth leaders while listening to some awesome music and praising God. It was a two day event with speakers, performers and some major Christian bands such as MercyMe, Skillet, Switchfoot, Barlow Girl, etc... If you haven't been and you are in the area, I recommend checking it out for next year. They really know how to put on a show up there. I hope we can do it again next year.

2010 looks to be a busy year for us. It seems like there is going to be something going on every month from now until July. We may have a couple of surgeries coming up and between my husbands business trips, HBOT and camps, we have a lot to look forward too.

Did I say surgery? Yeah. We have Liam scheduled for g-tube placement at the end of Jan. But, again, we might be holding off on it. Liam does a great job of keeping us on our toes and while I scheduled the surgery back in December when he was having some bigger issues, he has now decided to cooperate and is doing better. I'll talk more on that in another post. =)

Liam is doing really well. I haven't been able to work with him much therapeutically as of late, but he is making new changes all the time.

***Tonight when I asked him where his daddy was he turned and looked at him!

Then when I asked where his brother was he turned and looked at him! It was awesome!! And hilarious because he turned his eyes toward them first and then followed with his head.

***He played in midline today with his therapist (it's a big deal cuz when she puts him over her leg to play on his tummy he almost always flings his arms out to the side and he kept them there and was all relaxed while playing with a toy).

***Liam is holding his head up all on his own while on his wedge pillow for up to a minute.

***He is using his arms to push while he is on the wedge (which he has never done before!). And he has even pushed his head all the way up all by himself once this past week!

See?

While 2010 promises to be busy for our family I also know with God it promises to be amazing.