"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Friday, December 21, 2007

Wednesday, December 19, 2007

Vomiting/GI Update

Conway is currently receiving his feeds over one hour. We had to slow down the rate a couple of weeks ago because the vomiting increased again. This has helped, but it seems, as usual, that it slowly creeps back in. Now we are waiting until he is upright for awhile and gets several good, productive coughs before we start a feed. Getting rid of the mucous first seems to help.

Dr. Brady (GI doc) called yesterday to say she got the swallow study results and discuss a plan. I told her that we ran out of formula during the snow and he seemed to keep his feeds down better so she gave us permission to stop fortifying for a couple of weeks up to a month and time, his weight, and his vomiting will tell if it indeed helps since he seems to wax and wane on the vomiting anyway. He has good weeks and bad weeks so hopefully it isn't just a good week and it actually is a step toward less vomiting.
She is still hesitant (thankfully) to proceed with previously discussed surgical options. She is just so pleased with his neuro, physical and cardiac progress that she hates to interrupt that with an invasive procedure and recovery. She isn't even sure that the surgeons would be able to move the pacemaker AND place the g-tube all in the same surgery. What a bummer that would be-to have the pacemaker moved and then have to go back to have the g-tube at a later date! She reiterated that the g-tube is not going to fix the reflux. It would cut down on the irritation that the tube causes and maybe make it more pleasant to swallow/eat orally. She just is very reluctant to put him under anesthesia for three hours (the tube is only a ten minute procedure, but the pacemaker moving is a different story). When asked about the fundoplication she said she really doesn't see that in his future, but she'll talk more with Dr. Bromberg and we'll talk again in a few weeks.

Connie has been working hard on oral practice. We were given the all clear to introduce more solids so we were thinning stage one baby foods with fruit juices or breast milk and giving to him via syringe. He generally takes about 6-9 mL of solids at each session where we try this (usually about 2X per day). At regular mealtimes, if he is awake, he is offered a variety of textures and finger foods and will put them up to his mouth to taste but does not ingest them. Lately he has shown a preference for liquids, especially warm milk. It is a real chore to get the thicker stuff into him, but he has been eagerly going after the syringe when it has breast milk in it. Today he excitedly "drank" (and I use that term loosely) 22.5 mL of milk out of a combination of three methods of feeding. We started with the syringe and then advanced to the medicine cup pacifier after I noticed he was trying to chew/suck on it. He can't control how much he gets with the syringe so with the paci he can bite/chew/suck and get rewarded with some liquid. I then tried the take and toss kind of sippy cups with a lid. These lids prevent major spills and slow down intake, but don't have to be sucked hard on like the no-spill playtex kind of cups. He went back and forth between the paci and the cup, playing with one while drinking out of the other. All in all, when he was done, he had taken 22.5 mL. This is a first! Granted, he didn't swallow near that much. His oral motor control is not good enough to have a very organized swallow so much of it dribbled out. The most exciting thing about this is his WILLINGNESS to participate in eating! Please continue to pray for progress in this area. It would be wonderful if he was able to mow down (or at least tolerate) on chocolate birthday cake by the time he turns one!

Monday, December 17, 2007

Cardiology Update and More!

Connie had an appt. at 11 am today with Dr. Bromberg. I was a little anxious over the weekend about what I might hear, but didn't think too much about it. As soon as I turned the stroller around so that Connie was facing Colleen, the nurse, my fears were relieved. She and the other nurse were falling over themselves commenting on how good he looked and how good his color was (his color has never really been an issue though, like most heart kids) and how big he was, etc., etc. They even remarked at his crazy hair. His weight today was 20 lbs. 11.6 oz. Down a bit. Funny, they all think he looks so much bigger and yet his weight hasn't gone up the last month. Dr. Bromberg even said that this is the first time he's seen him look "like a normal baby" and not "so skinny". His length is 31.5 inches, which is taller than before. I think just last week at his well baby visit he was 30 inches.

Then they asked me a bunch of questions about his endurance, sweating, breathing, etc. Colleen listened to his chest and took his blood pressure which was "perfect". Then they checked his pacemaker with four little electrodes on his chest which he tried to pull off constantly. He started out a little quiet and shy and quickly turned into a normal, curious 9 month old. He wanted to investigate everyone and everything in the office. When Dr. Bromberg came in and was standing next to him while he looked over the pacemaker stuff, Connie wanted his watch and ID badge. Dr. Bromberg said he couldn't see why anyone would call him developmentally delayed other than the fact that he's not crawling yet. He was so pleased with everything. He took him off the Spironolactone (potassium sparing diuretic) and decreased his lasix (other diuretic) in half. He said that at the next visit, he may come off the lasix altogether! Even though his bp is perfect, he is increasing his Enalapril (bp decreaser) from 1 ML, 2X/day to 1.5 ML 2X/day. This is in hopes that it will help the heart to pump a little stronger so that the leak is decreased and less blood regurgitates back down. We don't have to go back for three more months!

In related news, we got to talking about his GI issues and I asked him about the possibility that Connie's problems stem from a vagus nerve injury during surgery. He nodded like he had thought of that too. He said what makes him think that that isn't the case is that usually patients will also have a paralyzed diaphragm and/or paralyzed vocal cord. I asked what possible treatments there were if that were the case and he said that nothing could really be done, that it usually spontaneously heals on it's own. He said he was pessimistic about that for Connie because it would have likely healed by now. His personal, "layperson" opinion is that a fundoplicaton and g-tube are in order here. I guess we shall see. Today I'm just reveling in the glory and the light of this wonderful blessing we've been given in having such a good appointment. Praise God!

However (dramatic pause), there is never a dull moment around here and never a positive note that isn't drowned out by a negative one. Early Sunday morning, Mary Kathleen fell out of bed and complained that she hurt her shoulder. Her behavior was not right and she didn't "get over it" quickly at all. I called the doctor's exchange and they recommended we follow up with our ped. today. We did and he suspected a broken collarbone. He said it is easy to fracture and fairly common in kids. He sent us downstairs to an orthopaedic doctor where she had her first (hopefully last) x-ray. She did very good and was so brave for all of it. She surprises everyone that she isn't afraid of procedures or shots or whatever. The x-ray showed that her collarbone is indeed broken. The doctor said that children this age heal very quickly (2-3 weeks). The remedy for this type of injury is limited to wearing a sling. So, her right arm is in a cute little dinosaur sling. She doesn't like it one bit and has reminded me of that fact several times in the past couple of hours. She is to wear the sling until she appears to be using it a lot more and her activity level is to be dictated by her. The only limit is that she is to stay off the monkey bars and avoid climbing. She has no interest in that right now anyway with the pain she's experiencing so that shouldn't be a problem. She is allowed to have motrin every six hours if necessary. She looks like such a big girl with her sling. I think I was that age when I had my first broken bone. I only hope she doesn't have as many as I had! We go back for a follow-up x-ray in three weeks.

So, $100 in copays, three office visits at two different hospitals and six hours later, we are home and staying put. Just when I complain about not getting out of the house because of being homebound with Connie for the winter cold and flu season, I get to spend all day driving around with them! Woo hoo!