June 30th, 2009

We were able to move Kinnick to 14 lt O2 on Sunday. She's doing just fine. I'm going to try her on 1/8 lt tomorrow and see how it goes. It would be so nice to have her off O2 during the day.

Carver had another one of his blue spells the other day. His surgery just can't get here soon enough. The big day is 7/2/09. I just want it to be done and over with. I just hate these spells. This time, he acted like he was choking. So, now I have to wonder if it is reflux. Who knows. I'm hoping to change some of his night feeds after he recovers from surgery. I would like to move more to the daytime now that he's doing a better job with his milk in the honeybear. I don't want to make any changes right before surgery.

Carver seen Dr. Park - low vision specialist on Monday. He did a sonogram on his eyes. He thought that things looked pretty good. The cataract is covering most of his eye now. So, it's going to need to be removed soon. He thought that we had at least a couple of months. This should fit good with our current schedule. Carver has to wait 6 weeks from his T&A surgery before he can have another surgery. So, over the next couple of weeks, I'll have to start working on getting K&C back to MI. Oh, all of the fun we have.

June 26th, 2009

This picture is too funny. Carver is enjoying a vibrating teething toy, but doesn't want to hold it. So, he just puts it in his mouth and bites down.

We were able to move Kinnick to 1/2 lt O2 with no problem. I'm hoping to move her to 1/4 lt O2 this weekend. At this rate, I'm hoping to have her off O2 during the day within the next week. Her lungs are sounding much better - nearly back to her norm.

We've been taking Carver off O2 during the day and he's done very well - no problems. We still monitor him while he's napping. He has an order to be on at least 1/2 lt O2 at night until after his T&A surgery. It's so nice to get rid of some of the attachments during the day. Kinnick really needs to get rid of hers. It's like a dog leash now that she is mobile. She gets mad at it when she reaches the max (50 foot) distance, so she pulls it out and puts it around her neck. She sits and chokes herself trying to go further. It's crazy.

June 23rd, 2009

Kinnick is doing about the same. We're going to try to move her to 1/2 lt O2 tomorrow. Her lungs are still crappy in the morning, but overall she's doing much better. She's sleeping a lot better - other then she likes her "Big bed" better, now (AKA Mom and Dad's bed).

The contact is staying in pretty good. It's still the same old pain to put them in and take them out.

I checked in on my nurse that was out having breast surgery. She's doing good. The surgery itself went very well. However, the chemo is giving her a hard time. She's been sick since last Thursday - the day she received the first dose. She has to have 4 big doses over 8 weeks. Then she'll do another drug once a week for 12 weeks. The 12 week drug isn't supposed to be a big deal, but takes 90 minutes to administer. It's amazing how quickly breast cancer can grow. When she first noticed it, it was only 9mm. When she went in for surgery a few weeks later, it had grown to 1 1/2 cm. Isn't that crazy! She's a very lucky girl. They were able to remove all of the cancer. The treatments are a preventative to help keep her from getting it again. We miss her and can't wait until she is back. Get well soon, Jane!

Carver used to do a lot of gagging for whatever reason. It really interfered with his eating. He did this all day long. We assumed that it was reflux. Once we removed his baclofen (spasticity med) and added Neurontin (new spasticity med), suddenly the gagging is completely gone. I'm not sure if the baclofen was relaxing him too much in certain areas? It wasn't helping his trunk, neck, legs, or arms. So, it must have only been relaxing internal parts? Who knows? Whatever has changed, we are very happy to have the change. He's eating like a champ and even drinking most of his milk, now.

June 19th, 2009

Kinnick is doing good on 3/4 lt of O2. She's pretty junky in the morning, but does pretty good during the day. Hopefully, I can drop her O2 to 1/2 lt by the end of the weekend. She's still pretty needy due to the tummy ache - diarrhea. The diarrhea is actually starting to get better - it's not quite as runny. If you've never tried Calmoseptine for diaper rash - you have to try it! It's amazing. Kinnick has had this diarrhea for quite some time now, and her skin looks great thanks to the Calmoseptine.

Kinnick got a new contact today. This one was adjusted to fit a little tighter. Hopefully this one will stay in better. So far, it's been in most of the day.

June 16th, 2009

Another good day for Kinnick - well, good being defined as no temp and sats look good. Still needy and has bad diarrhea. I'm hoping to turn her O2 down to 3/4 lt tomorrow.

Last year, we did therapy at the pool. We haven't talked about it, yet. However, I did purchase new swimming suits for K&C, so now we need to use them :o). I'm going to need a little sun before I step into public in a swimming suit. I've been so trapped inside. I'm sure that I glow in the dark.

Kinnick has another eye appt this Friday. So, she'll finally be getting another set of contact lenses. I'm not sure how well that is going to go over as crappy as she feels right now.

June 15th, 2009

Kinnick finally had a really good night. She slept all night and her sats were in the upper 90's. When I woke up, she was playing in her crib and satting 100%. We dropped her O2 to 1 lt. She still has the diarrhea. The Mylanta is helping a ton - doesn't make the diarrhea go away, but it helps the stomach pain. She's still a little needy, but well on her way to recovery. She's drinking her milk from her honey bear and even eating some bananas.

Today, we tested Carver's hearing (with his CI) in the "Sound Booth". This is the first time we tested in the "Sound Booth". It's difficult to test him because he can't tell you what he is hearing. We just went off his behavior changes. He would bounce around and giggle. Once he heard the sound, he stopped to listen. This was a very consistent response. The audiologist said that he was testing nicely at 50db. He's starting to make lots of new sounds - raspberries is one of his favorites. But, he also has uh, ah, oh, ew, da. He also has lots of nice cooing noises. He used to just yell. You can tell that he enjoys new sounds. He still has a couple of music toys that he really enjoys - a dog that plays games and talks and a duck that plays instruments.

June 14th, 2009

I think Kinnick is feeling better, but the diarrhea is really giving her a lot of stomach pain. We can't quit the antibiotic until she's taken it 20 days. The doctor said to give her 10ml of Mylanta 3-4 times a day for the stomach pains. She also said to give her 1-2 oz of Pedialyte anytime she has diarrhea. This is supposed to help replace all of the fluids she's losing with the diarrhea. We've only given her 1 dose of Mylanta and it seems to be helping. Last night she woke up at 3:00am crying with diarrhea in her diaper. It took me 2 hrs to get her back to sleep. He sats were mostly mid to upper 90's last night, so things are definitely looking up. If she has a good night, I'll try to reduce her O2 tomorrow - maybe to 1 lt. Her lungs still sound bad and she still sounds out of breath. We're still doing lots of breathing treatments. Poor girl, she just looks so skinny.

Nurse Case Management - Insurance

I probably need to explain my Nurse Case Management - Primary Insurance. This is an actual RN that works for BCBS. She is assigned Kinnick and Carver's cases. She is my first point of contact when I need help getting something done within BCBS. She's also available to answer any medical questions that I might have. Since she has been assigned Kinnick and Carver since shortly after birth, she knows a lot about their medical history. She's a great help when I need something approved as "Medically Necessary". For example, when we travel to MI for eye surgery, my Pediatrician writes a letter of medical necessity for Kinnick and Carver to go via medial transport. She is able to take the letter and go straight to the BCBS doctors to get the approval. She's been a great help to us. Losing her doesn't mean that I will lose any insurance or my other Case Management like my Medicaid Case Manager and my MRDD Case Management. It's just a huge inconvenience to lose her. Kinnick and Carver's Insurance isn't simple with everything they have going on. It's nice to have that inside help. I know... I'm probably being a big baby about it. It's these little things that help a lot.

June 13th. 2009

Kinnick slept better last night, but still had a hard time with her sats.  For most of the night, she ran low 90's (91-94).  Towards morning, she ran sats from 88-91.  She's still on 1 1/2 lt of O2.  The temp is definitely under control now.   It hasn't been over 99.8.  I'm trying to avoid giving any tylenol or motrin.  However, she acts like she is so uncomfortable that I have been giving motrin once in the morning and once before bed.  It seems to make her feel better.  Her poor tummy is just a mess.  I think this is where most of her discomfort is coming from.  She's still having a hard time with her lungs.  The right lung seems to always be worse.  This morning has been pretty crappy for her.  Her sats have been from 88-94.  She's played a little, but just wants to be held.   We're continuing to do the breathing treatments and hoping that things will be better in a couple more days.

I received a phone call from my Primary Insurance company the other day.  We've always had a nurse case manager due to all of Kinnick and Carver's needs.  It's been a big help especially with trips out of town.  She's able to get all of our paperwork pushed through for us pretty quickly.  Well, she told me that they were closing our case and need for nurse case management since Kinnick and Carver are so STABLE now.  STABLE?  What's that?  We work hard on a daily basis to keep them well.  Out of the blue they get sick - like Kinnick right now.  I wouldn't call 1 1/2 lt of O2 stable.  Carver has SEVERE sleep apnea - this isn't normal.  I wouldn't call him STABLE either.  Their eyes are also still a problem and Carver still needs another CI.  I realize there are others worse off, but is it really that much to ask to be able to call a nurse case manager a couple of times a year for help?

June 12th, 2009

Kinnick seems to be doing a little better - not much.  She played a bit today.  Her sats were mostly upper 90's.  She's still very out of breath.  The diarrhea has started - I fully expected this with all of the drugs.  I'm sure this adds to her aches and pains.  Her temp has started to settle down.  She slept better last night, but her sats still dipped into the mid to upper 80's.  We're continuing to do breathing treatments every 2 hours if needed.  I give her atrovent at night (this is supposed to last 8 hrs).  Then albuterol as needed for her sats.  I'm hoping for a little better night.  Tomorrow is her last day of steroids.  One less thing that is irritating her tummy.  I really thought we were in the clear for colds.  Crazy weather!

June 10th, 2009

Kinnick's night wasn't any better, but it also wasn't any worse.  This is positive.  Hopefully we've hit the peak and things can start getting better.  She still isn't eating - just fluids via her G-Tube.  This is one time that us G-Tube moms like having a G-Tube.  This is keeping Kinnick out of the hospital.  Without it, we would be in the hospital for sure.  We're still doing breathing treatments every 2 hours.  She's now on a steroid - this will last another 3 days (5 days total).  We're still having a hard time controlling her temp.  It's still around 99 with motrin and tylenol on board.  She attempted to play a bit today, but quickly wore herself out.  She stood up one time and her legs were so wobbly, I'm not sure how she held herself up.  Yesterday, her sats were mostly low 90's.  Today we were hitting mid 90's and even seen some 98's.  If she can hold 98's, we'll start giving her more formula.  Right now, we're giving 50/50 formula/pedialyte.   I feel terrible because it only amounts to about 300 calories.  She needs 900-1000.  I shouldn't complain, it's better then nothing.  I just feel so bad for her - she just wants to sleep and whimper.   She's also coughing up foamy junk from her lungs.  

I'll update as we know more.  Please continue to pray for improvement.

June 9th, 2009

I had to move Carver's T&A surgery to 7/2/09.  Kinnick started getting sick on Sunday and today she was requiring 1 1/2 lt of O2.  We've been giving breathing treatments every 2 hours and she's still barely maintaining sats in the low 90's.  I took her to the doctor yesterday and they gave her an antibiotic.  It doesn't appear to be working, yet.  We've been giving motrin and tylenol - rotating every 4 hours.  With this, she still maintains a 99 degree temp.  So, we took her back to the doctor today - trying to avoid the hospital.  They gave her a script for a steroid to take for 5 days and a powerful antibiotic shot.  The shot should yield results within 6 hrs.  If it doesn't and things get worse, she will have to be admitted to the hospital for IV antibiotics.  Anytime she gets a cold, it goes straight to her lungs.  We were so close to giving up O2 during the day.  Monday was going to be the big day.  She was only on 1/8 lt Sunday.  I'm so bummed.  We should be out of the cold season.  Not sure where this came from.  Please pray that all of this works and she is not admitted to the hospital.  

June 5th, 2009

Kinnick is getting to be such a big girl.  She's standing for at least 20 seconds with no support.  She stands forever and cruises around furniture.  She can pull up to just about anything now.  The only thing holding her back from walking is the fear of the unknown - not being able to see in front of her.

Kinnick has been wanting to do her own breathing treatments.  It's so cute.  Glad someone wants to do it - it's getting really old.

And, here's my big boy....cheesing away.... he's such a happy boy.

June 2nd, 2009

Well, it's a start.  Kinnick is showing interest in her tippy cup.  We put a couple of them in her toy box a long time ago.  They play music and we put a dice in each one, so that they would make noise like a toy.  The last few days, she's been mouthing the sippy lid.  So, today we put some juice in her tippy cup and helped her take a couple of sips.  She did it several times for us.  She even picked the cup up herself and tried to take a drink.  The picture is bad because this is where we keep all of the medical supplies - she seems to love this corner.  There is a window that she sits by and plays with toys in a small toy box.  I think she likes the light from the window.  

Carver continues to have sleep apnea - hopefully this is going to improve after surgery.  He's doing better with his sitting (with help of course).  He's doing a lot more of the work holding his head up.  He's playing with so many of his toys, now.  He's not real coordinated with his play, but seems to get ahold of anything he wants to play with on his tray.  He's even started using his right hand/arm more.

Who's the "All Star"?

This smile just cracks me up!  His tongue is curled up his top lip.