Sunday, January 31, 2010

Mommy's Great. Givin' Me Chocolate Cake

We all know Liam has some oral sensory integration issues. He is just not a fan of anything that is not baby yogurt. Solids are an absolute no go. I baked a cake tonight, and knew he wouldn't be a big fan. That said, I also remembered that Jan (our SLP with ECI) mentioned that it's important that we let him "fully experience" his food.
I decided to give him a slice of the cake and set him free. Other than a messy floor and even messier baby, I didn't feel like I had a whole lot to lose.
When I put the first little bit in his mouth, he gasped and sputtered and gagged just a little bit. I decided to just back off and let him do what he wanted to do with his piece of cake. An hour later, he decided he was done. I didn't find any cake left in the area around him, but that doesn't mean he ate it. We have a dog who sits vigilently by whoever is in the high chair making sure no crumbs ever make it to the ground.
At any rate, the pictures tell the story. I don't know what we did for him to help overcome his oral aversions or to learn about what to do with his mouth. But I do know he's going to be a master finger painter. And he had fun. What more could I ask for?
p.s. If you look closely, you can see the frosting and blue sprinkle in his left ear. That's the sure sign of a happy cake-playing baby.

Friday, January 29, 2010

Gotta' Love a Happy Update!

Liam has had quite a week. I'm pleased to say it's been a much better week than last week, too!! First, we visited Dr. Sanchez. Liam is officially off all inhaled medicine except for PRN. Yay, Liam!!

I also discussed the fact that it is a NIGHTMARE keeping the O2 on him. It's like the little stinker stays up late at night thinking of creative ways to take it off or something. The other day, I checked his sats and noticed that he was at 97% on room air. That's very good, so I gave him a break. I did this about hourly throughout the day. He spent EIGHT HOURS off his oxygen, and maintained his sats at 97% or better. Good job, Liam!! As I said, we discussed this with Dr. Sanchez and came up with a compromise. Liam can be without his oxygen on as long as we're home and I'm checking his sats very regularly. They have to be at 94% or better, and he can stay off the canula. The second it dips, or if he's sleeping, the canula needs to be on. I think that's a fair compromise.

We also had a very productive appointment with Ms. Linda. She had Liam practice tracking sounds, and he did pretty great despite being tired. The problem he has is leaving his aids in at all. We get maybe thirty seconds at a time if we're very lucky. Otherwise, we have to put things on his arms to keep him from being able to reach the aids and pull them out. We're trying to work on a plan for dealing with it, but so far, Liam is winning the battle.

While we were with Ms. Linda, I mentioned his eating issues so we worked on some of those. We now have a plan to help him learn to work through having food in his mouth. He is very clearly a hungry little monkey, so this will be a great turn of events.

And, the final piece of great news? Dr. K called last night. His testing shows that he no longer has any C-Diff in his system!!!

Sunday, January 24, 2010

Sometimes the Right Choice is the Hardest One to Make

Having a child like Liam who has the needs that he has sometimes leaves me questioning my Mommy instincts. I know I'm a good mom for him, but I don't always know what is the best choice in certain circumstances. This week has been a long and trying week, and my instincts have been tested to the extreme. I am proud to say that I think I did all the right things.

For the past week (almost two weeks as I write this), Liam has had a little cold with a yucky cough. I've had a hard time trying to keep his sats up, particularly when he first woke up. I was already a little out of my comfort zone since we've switched pediatricians with the departure of our favorite Dr. M. I don't know Dr. K very well, but I do know that it's clear he's been doing his research on Liam's case. I'm grateful for that. During the week, we had seen Dr. K. about three times. He instructed me on how to deep suction Liam's nose when he's congested. He can't have decongestant meds, so that was really our only choice. When his nose is clear, he can breathe through his canula, which is really important. He also taught me how to do CPT for him to loosen all the mucus. I hated torturing Liam with the suction, but it was working to help keeps his sats up.

Wednesday when Liam woke up, nothing I did would keep his numbers high. He'd had a rough night Tuesday night waking up coughing until he vomited and then just collapsing asleep when his coughing fits were over. He was clearly exhausted from all the coughing. I knew something wasn't right and that I needed to get more help for him than what I could do at home. I called Dr. K's office, but 2:15 pm was the earliest Liam could be seen and I knew he was struggling. I also contacted our pulmonologist's office and consulted with the nurse. She suggested that Liam really needed help as soon as possible. I agreed, and we headed in the direction of the Children's ER. It's a little over an hour's drive, but would land him in the care of the best dr's for him. At least that's what I was told would happen.

I arrived just after noon, and went in. They saw that he had his O2 with him, so he went to the front of the line. The nurse checked his sats, and he was at 92%, which isn't quite high enough. She had us wait a little longer before taking him back because he needed to be in his own room away from other kids who could make him sicker. She explained that he had his own oxygen and other kids didn't so he could wait longer. Okay, but now he's waiting in a room full of really sick kids and not satting high enough. Whatever. I could see that the ER was packed and was willing to wait for him to have the private space.

Finally he got to his little ER room, they gave him one breathing treatment to bring up his sats and took his history. He was seeing a resident doctor, who I think might have just recently hit puberty, but was sure she knew all the right answers for Liam. This is the exact information I gave them:
-He has had a cough with his sats all over the place for the last week.
-The pediatrician has him taking breathing treatments every two hours with CPT about every four hours.
-His ear is draining huge amounts of green thick discharge. This is new and wasn't there the day before. He is Deaf, and his ears need to be protected.
-He is just recovering from C-Diff, and has missed the last two doses of the medicine for it because we've been so focused on the breathing issues. He needs the next dose asap because we're just now having normal poop after six weeks of not having that.
-His pulmonologist was going to call ahead to let you know he's here and what to do with him since his lung disease is rare and needs to be treated a little bit differently than others.

The response the "doctor" gave me was the following:
-Yep, his ear is draining. Interesting.
-We all have C-Diff in our intestines, and your pediatrician may have jumped the gun a little bit in giving you those meds.
-The pulmonologist wants him admitted, so he's on a list to get a bed.

After the dr. left, Liam was taken for a chest X-Ray and tested for a variety of viruses. I explained that Dr. K. had already done both of those things on Monday, and that all were clear. They wanted to check again anyway. Okay. Fine. Check again. When he returned from the X-Ray, he received one breathing treatment and 30 minutes of IV fluids. It was noted that, at that point, he was well hydrated, so I have no idea why the fluids. But, okay. I can just suck it up and deal with all of this until he gets to his own room where the pulmonologist can take charge of his care.

Liam went to sleep during the breathing treatment and stayed that way for a long time. In total, he slept about four and a half hours. During that time, his nurse informed me that he'd have to go to a "holding annex" to wait for a room. I picked up my sleeping baby, who didn't even bat an eye and slept through the whole move, and followed her to the annex. It was one big room full of children with confirmed illnesses all divided by little curtains. There was one sink in the room. It happened to be in Liam's little curtain area. Great. Now everyone is rinsing their puke buckets in my child's area.

I was starting to get really nervous about this situation because I know how easily Liam gets sick, and how much damage it does to him. I spoke with the nurse and explained the situation and that he really couldn't be with all these kids. Why take him from a private space to one full of very sick children??? She called in the same very young doctor we'd seen, and explained the situation. Since the doctor was there, I again mentioned the C-Diff issue and that he really really needed that med. "He has C-Diff? Well, he should be in isolation then". Great!! Whatever gets him isolated I am happy to go with. They STILL didn't get him the meds for his C-Diff, though, and it's a drug to be taken every six hours. By this point, he'd missed a good four doses and the clock was still ticking.

The very sweet nurse tried to get him into an isolation room, but none were available. No matter. I was told he'd be on the top of the list to get a bed when one came open. Okay. Fine. I will wait a little longer.

Strangely, all the kids around him got into rooms. Go figure. I was livid. One of them was sent to the pulmonology unit where Liam REALLY needed to be!!! I was hopping mad, and brought it to the new nurse's attention. (There had been a shift change during this whole time). She said, "You're right, but that child went to a two bed room." Okay, I get that, but then at least he was only sharing with ONE other child. Liam was in a space that was starting to fill up again with up to twelve other children. I was willing to take my chances.

By this point, I was just in tears and beside myself. I was questioning my decision to bring him, worrying sick about the C-Diff issues, and it felt like I wasn't even thinking straight anymore. The on-call pulmonologist came in to see him. We'd met him before during our long summer stay. He was kind, but doesn't know Liam's case. He wanted him to have inhaled steroids. Fine. Whatever. This guy always wants to give steroids.

I waited another couple of hours, still begging for him to get out of that situation. Nothing. Finally around ten, the charge nurse came in and said, " I think we have a plan for him until he gets a room." My response? "No. We're done here. We are going home. Please page the pulmonologist and tell him we're leaving. I don't want anything to do with the little resident. She is full of it, and won't listen to my concerns. We are leaving. Now. Please make arrangements."

I couldn't believe I'd just done it. I was so angry, though, and hurt that they'd acknowledged a need for my precious baby to get medical help, but then denied him what he needed. My head was spinning. I knew that, if anything happened to him that night, I'd live with a horrible guilt for life. But I also knew that staying any longer was like a death sentence in terms of what diseases he was picking up sitting there.

The nurse called the doctor and came back to ask me if they had gotten a chance to note his sats while he was sleeping. ARE YOU KIDDING ME?!?!?! The child slept for FOUR AND A HALF HOURS!!! How did you NOT know this?!? How did you not notice him so out of it that he slept through the entire transfer from ER bed to holding annex hell??? That was enough for me. I took him and left.

I sobbed all the way home. I was just beside myself with worry and anger and frustration and the whole thing. It was the worst feeling ever. I called Jo on my way home, and she talked to me the whole hour plus drive.

The next morning, we went directly to Dr. K's office. I told him the whole story through tears. He was so compassionate and understanding...and pretty sure I needed a nap. Really? The three restless hours of sleep I'd gotten wasn't enough? Hmmm...

I pointed out that, in the ELEVEN HOURS that I was there, Liam had received:
-One breathing treatment
-One 30 minute IV fluid treatment for nothing
-One inhalation of steroids through an aerochamber.

He validated my decision and said that, if Liam is ever in that much trouble again, I don't need an appointment. I can just bring him in. If he is there, he will see him and take care of him and not let him suffer anymore.

We checked his sats and listened to him. He was doing better. The problem? He'd begun throwing up that morning and wasn't wanting to eat. My worst fear was rearing its ugly head. C-Diff was coming back in full force. Dr. K and I decided to watch it during the day with the understanding that I could bring him back at any time if I had concerns about the C-Diff. He also gave me some drops for his ears, BOTH of which were now infected and oozing.

Liam played well, took a long nap, but still refused to eat. Then the diarrhea started. I took him back to Dr. K's office where we determined that he needed to be admitted for IV fluids. Gaaaah! I was so angry. This whole part could have been avoided if they would have just listened to me at Children's in the first place.

The irony? Liam's pulmo called me and asked why he wasn't at the hospital when she went to see him. I told her what happened, the whole story, and that I'd gone down there trusting that he would be taken care of and fully prepared to stay through the weekend if I had to. She told me she'd called ahead and told them the following instructions for Liam:
-Regular breathing treatments with CPT
-Listen to the mother. She knows what she is talking about and will only bring him if something is really wrong.
-Keep him away from other sick children.
-Admit him to his own room.

I think we have a plan now. When Liam is really struggling, Dr. K will see him and consult with our pulmo. Depending on what he needs, we will decide if he needs to be admitted here or at Children's. If it's Children's, he will be directly admitted to his own bed. I feel better about that.

So, now that you've read through this loooooooong post, you see why Mommy instincts are sometimes so hard to read. It seemed to be against all logic for me to take him from the hospital that could help him, but I did it anyway because my gut told me it was the best choice. I'm so glad I did. I am proud to report that he seems to be on the road to if we can just get him to leave his oxygen on....

Sunday, January 17, 2010

Note to Self: Wear a Raincoat

Liam has had some trouble with eating. He is gaining plenty of weight and takes a bottle like a champ, but solid foods aren't going so well. Anything with chunks or that doesn't have the same flavor as vanilla yogurt or bananas will usually result in heavy gagging, choking, and a general feeling of impending death. We're working with him on it, but he seems to be winning the battle.

On top of that, he is incredibly stubbourn about not wanting to wear his hearing aids. I know this comes as a shock to hear that one of my precious angels might be stubbourn about anything. Rest assured, though, it's true. I'm sure I have no idea where any of them might have gotten that trait from. The problem with him refusing to wear his hearing aids is that we aren't stimulating his auditory brainstem, and speech will be more difficult for him later.

We had his annual ECI IFSP meeting this past week, and I was instructed that it's time to stop telling him no with a smile when he pulls off his aids. I'm supposed to show him my grumpy face and firmly say no while also signing it. Have you met this kid??!? He is just adorable and sweet and happy and loving, and someone is telling me to tell him no??? (Actually, I'm fine with that. Just ask Aiden. I say no all the time. According to him, in fact, I am the "meanest mom in the world".) It's the part where I have to show grumpiness that I hate. Poor kid.

Plus, I'm supposed to start introducing more flavors. The best suggestion is to go ahead and dip his binky in a new flavor and offer it that way. Okay, I guess that seems reasonable enough, right?

Friday, I decided to get a babysitter so Byron could surprise me by taking me out on a date. (Yes, you read that right. Sometimes a girl has to take matters into her own hands if she wants to be taken out). Since Liam has some issues and there are five kids, we opted to bring him with us. I decided that this would be a great chance to work on requiring the aids and offering him new flavors.

We went to the Olive Garden so we could use Byron's gift card from Christmas. As soon as we sat at the table, Liam went for his hearing aids. He was determined NOT to wear those suckers no matter what. Three times in a row he did it, and three times in a row I showed him no with my very firm face and the sign while also taking his hand away from his ears. The result? A broken heart!!! Poor Liam's eyes just filled with tears and a big frown came over his face. It was like I'd just told him there is no Santa Clause. Finally, I just did him a favor and took the hearing aids out for hm so they could be put in a safe place.

Then the food came out. Byron loves to order extra alfredo dipping sauce for the bread sticks. Suddenly I had a really bright idea!!! I would dip Liam's binky in the alfredo sauce. What could go wrong there? I fed him a full container of his yogurt, and then dipped the binky in the sauce. I was just sure this was going to be my most genius idea yet...right up there with taking all five kids to Target by myself just for fun.

Almost as quickly as I put the binky in his mouth the gagging began, then some sputtering and then tears coming down his cheeks as he tried for all he was worth to hold his beloved yogurt with him. And then it happened. Picture a scene from The Exorcist. I had no idea that one little tongue full of alfredo sauce could elicit such a response, but I was wearing the proof that it was indeed possible.

The moral of the story? Next time I listen to and fullow through with instructions from ECI, I should be fully prepared to feel like an ogre...and I should at the very least wear a raincoat.

Another Year, Another Evaluation

Each year, ECI has to do an annual evaluation and create a new service plan for each child in their services. I can't believe how time has flown. Liam (that's Little Guy's name) had his annual evaluation on Friday. I insisted that we do it at a restaurant because, quite honestly, I never get to get out of the house. I think most of his team thought I was completely off my rocker wanting to do it there, but I was just delighted to get out and do something a little bit different.

Really, there haven't been many changes. Unlike CJ (aka The Beast), Liam isn't far behind in motor skills at all. In fact, he's doing quite well. With as many obstacles as he's had to overcome, I find that shocking and a blessing all in one. He has proven in so many ways that there are no mountains too high to climb with a little will power.

One thing we really have to work hard on in the coming months is providing Liam with some means of communication. He genuinely hates his hearing aids, and wearing them is a constant battle. He is interested in sign language, though, so we will be pushing that more as a family. I've made it part of CJ and Aiden's chores to spend 15 minutes daily doing the sign of the day/week with him in a game. This week's sign is "Please". Liam has been so enjoying the attention from his big brothers, and it seems to be paying off. If nothing else, he is mimicking the signs nicely.

Additionally, Dr. Peters is pushing for us to spend time making regular visits to Linda Daniel for auditory verbal therapy. Linda will require us to work hard, though I think I'm up to the challenge. The idea of driving the hour or more to see her each time is a little bit daunting, but certainly not anything that can't be overcome. Jan, our SLP, has said she'd like to come with us to AVT sessions now and then so she can continue to maintain what we're doing with Linda.

All in all, I certainly can't complain. As much craziness as we have going on around here, and considering that it's the "sick season" (really when is NOT sick season for us, though?), and that we're in the process of starting a relocation with Byron's company (another post for another day), I'd say all is well. I'm not surprised by that fact, though. In the grand scheme of things, all is most always well.

Saturday, January 9, 2010

New Tubes and an Updated ABR

Getting an ABR hearing test on Little Guy is always a little bit challenging because he can't have the sedation medicine. His ears have been really infected and oozing quite a bit, though, so we knew it was time for new tubes. Since he was already going under general anesthesia, Dr. Peters opted to do the ABR at the same time. I think he was more than a little concerned with how Little Guy would do, but was well pleased in the end when Little Guy came through it with flying colors.

I'm pleased to report that the ABR reported no change in Little Guy's hearing. For some, that would be bad news because lots of people are hoping for improvement. Experience has taught me not to hope for better hearing on my boys, but instead to hope for a slow down in the progression of his hearing loss. This week, my hopes were met with good news. No change means we can keep doing just what we've been doing with him.

His ears still look pretty sore and oozy, but Dr. Peters said they were REALLY infected, so I'm not too surprised about that. I'm just proud of my Little Guy for going in and coming out with a smile. He's a real trooper!!!

Saturday, January 2, 2010

He Officially Knows ME!!

We've been really concerned about Little Guy learning to communicate because we haven't signed with him as well as we did with the Beast, and he is not at all good about wearing his hearing aids. It has really weighed on my mind.

The past few weeks, I've worked to teach him to sign Mama. He was mimicking me, and doing well. I was so excited about just that much. But, the past couple of days he has been signing Mama right on cue and without prompting when he sees me. He is soooooo proud of himself when he does it, and immediately claps for himself. Sometimes he gets so giddy about it that he even lets out a big belly laugh.

I'm so excited about it!!! He knows ME!!!!