May 13th, 2008

It's been a few days since I have updated everyone.  Carver had to go back on O2 during the day.  His heart rate was up and he was having strange de-sats at night.  He would de-sat into the 60's.  I would have to get up and shake him a bit to get his attention so he would breath better.  So, I have him on 1/8 lt during the day.  I had him on 1/8 lt at night, but the de-sats and heart rate were still an issue.  So, I have him on 1/4 lt at night.  Once his heart rate returns to normal and he no longer has the strange de-sats, I'll try him at 1/8 lt at night.  My Pulmonologist was just a little too aggressive this time with the weaning.  The last time she didn't want me to wean at all and this time she wanted him off O2 during the day.  She even said that I could wean him off O2 at night over the next 2 weeks.  So, MY plan is to get his sats and heart rate back to normal and then slowly wean from 1/8 day and night, 1/16 during the day and 1/8 at night, 1/16 day and night, 1/32 during the day and 1/16 at night, 1/32 day and night, 0 during the day and 1/32 at night, 0 day and night.  I was planning on waiting at least 2 weeks between each change.  Hopefully, we will be off O2 in the next 4 months.  

Carver seen a pediatric eye doctor on Monday.  The eye doctor thought that his right eye was slightly near sighted.  However, he did not feel like glasses were necessary at this time.  He didn't feel like there was anything he could do at this time for the left eye since the retina is only attached around the edges with fluid under the retina.  He didn't think glasses would help the vision.  Patching is also not an option since we want to encourage him to use as much vision as possible regardless of which eye he uses.

Carver has been struggling with feeds every since we got his Fundo Plycation and G-tube.  He has a hard time getting anything (including saliva) down the Fundo.  He gags when anything is put in his mouth.    I feel like we have taken a huge step backwards with his feeds.  We will see the surgeon that did the surgery on Monday.

I was able to wean Kinnick to 1/4 lt O2 day and night with no noticeable difference in her heart rate or sats.  I'm not in any hurry to drop her O2 since she still has a stridor.  We see Kinnick's ENT tomorrow to discuss the stridor and paralyzed vocal cord.

Kinnick's G-tube and stomach continue to be a problem.  She's still leaking and has terrible gas in the intestines.  We seen the GI doctor today.  We are going to remove a couple of the meds (reglan and erythromycin) and see if the gas goes away.  These drugs were added to help with motility, but could possibly be adding to the problem.  If this doesn't work within a week, we are going to try another formula that breaks down even easier (EleCare).  If this doesn't help, she will be scoped to search for a block.  In addition to all of this, she has so much stomach acid that the acid is breaking the balloon on the G-tube about every 12 days.  The G-tube should last 4-6 months.  We are buying 2/month at $225 each.  On a good note, Kinnick is doing fabulous on her baby food and juice feeds.  She is easily able to eat a full tub of fruit or vegetables in a sitting and about 1/4 oz of juice.  She's getting her full volume of fruit and vegetables in for the day.  We'll continue to work with her juice via the honey bear and try to add some meat to increase calories.  If we can get her to take more via the honey bear, maybe we'll be able to reduce the G-tube feeds.  I can't wait to get rid of the G-tube.  

Kinnick still has quite a bit of blood in her left eye from the surgery.  We'll see the ophthalmologist next week.  I'm hoping the blood is starting to go away.  The blood can cause add'l scar tissue that will make the vision worse.  If the blood doesn't go away soon, she'll need another surgery to remove the blood - I'm guessing that will have to be done in MI.  

We have a High School graduation for Kirsten this weekend and an 8th grade graduation for Gregory on Wednesday.  I enrolled Kirsten at WSU on Monday, so just waiting for the huge bill that will come in July.  I enrolled Harrison in Football for the fall on Saturday.  I even got my hair cut and my eyebrows mowed last week.  As always, we are busy, busy, busy at our house.

I hope everyone had a wonderful Mother's Day.