Colin's Medical Journey

Part III

April 4, 2002 to present:

April 4:  Happy Birthday!  Colin is ONE!  Added about 1/4 tsp of safflower oil to Colin's formula.  Also started with a half a jar more of baby food in each 24 hour period.  (not sure if this is really the date that I started that...)  Colin did have a desatting episode this evening as he was very tired and overstimulated...Came up with in/ex and sx and O2.

April 10: Colin weighed in at 16.03 pounds this morning!  A record as far as I have it recorded.  I'm sure he was 16 pounds in August.  It's amazing to look at photos and see how chubby he was then.

April 11:  Just for fun, we weighed Colin again this AM.    He was 16.09! So, he really must be on the gaining trend.

Ordered some Zantac for Colin.  We'll try it again.    It may take a couple of days because it's one of the medicine's that Medicaid needs a new letter of necessity for from the pediatrician.  I don't know if it will help any at night with the air from the bipap, but it's worth a try.  And, I've been noticing that Colin's breath has been a bit stinky and I'm wondering if he's refluxing a bit.  And, we've been noticing that his poops have been a bit firmer for several days, and farther in-between than normal for him.  So, he's going to get some prune juice (luckily he has the tube!) for a few days.

Tried a warm bath to see if it would help him poop, as he pooped in the tub the last couple of times!  No go.  Warmed up an ounce of prune juice this afternoon.  A couple of hours later he had a small, formed poop.  A while later he had a large soft one!  Yay!

April 13:  Colin has been getting an ounce of warmed prune juice twice a day and it's been working great.  Might not give him any tomorrow and see how he does.

Respiratory-wise Colin has been good.  He's had an episode or two, and a couple of minor "dips".  His secretions have been great during the day!  Actually, on the 11th, he was pretty spitty, but I think it had something to do with trying to poop.  Otherwise, we hardly have to suction him.    When he's on bipap, we have to clear his mouth a lot because the air really rushes through and he doesn't get a chance to swallow, especially when he first goes on...His swallow seems to be good.  Every once in a while when we pick him up he gets a little choky, or if we try to hold him upright, but it's easily corrected if we put him down and put his head to the side and then put in his pacifier.  That really helps him to collect himself and breathe and swallow.

April 14:  Gave Colin Zantac this afternoon.  Second dose right before bed.  Who knows if it will help or not!  Last two night he's done better on bipap.  Still has the gas, but hasn't been protesting too hard with bipap.  Whew.  Hope we're over that.

May 12:  WE HAVE A TOOTH!  I mean Colin has his first tooth!  It's been coming for a while, but it finally popped out.  It's his bottom middle-right one.  Happy Mother's Day to me! 

May 19:  Another tooth!  While we were at DR. Bach's conference, all of a sudden we noticed the other bottom middle tooth is in!

May 22, 2002

I haven't been keeping up with Colin's medical stuff :(

I will try to remember what was going on...The past month or so Colin has been keeping us busy!  For the most part he's been fine.  He did have two major episodes.  I mean he went low, but came up quickly.  He has been having stranger anxiety and he holds his breath when he decides he doesn't like someone.   A couple of Sundays ago, we were all outside; Casey in his wheelchair and Colin in his Kid Kart.  We wheeled over to go see Daddy who was talking with our neighbor, Bob.  Colin took one look at him and held his breath and desatted.  Gene had to run in and get the O2.  We had the suction and monitor, but not the oxygen.  He came up fine, but it's scary when he does that.

And, Colin doesn't seem to be working with the bipap.  It is so frustrating that sometimes I am up for hours at night watching him breathe and watching his chest seeing if it is in sync with him or if he is off rhythm.  I've been playing with his IPAP (inspiratory pressure) EPAP (expiratory pressure), IPAP max (how long the machine waits before it gives him a breath), BPM (breaths per minute).   I've been upping the settings, lowering them, trying every combination possible.   Just yesterday I tried lowering the IPAP max and it seems to be much better.   Colin's respirations are very fast.  The bipap needs to give him breaths in and out very quickly so I've found that .6 seconds seems to be working better for him.   I've also upped his BPMs from 16 to 25.  I think that we may continue to need to do this because at times he is more relaxed than others so he breathes faster at times.

Today Colin weighed 17.01 pounds!  He's doing great!   He hasn't had any breast milk for over a week.  Since he's been on the feeding pump almost 24 hours a day, there hasn't been time for the extra 2 1/2 ounces of breast milk.  He's down to 1 jar of baby food instead of 1 and a half, and that's good!

We've also noticed that the past 4 weeks or so we've had to suction Colin a lot.  One day we weren't suctioning at all and then the next we had to a lot.  Well, not a lot, but he does make lots of spit that he spits partway out that we have to wipe or suction. 

May 27:  New observation for me.  I've noticed that now we have the bipap setting more or less comfortable for Colin that he doesn't get as much gas.  It makes sense; if the air is going where it should be, his lungs, instead of his belly, then he won't get filled with unnecessary air.  I'm not saying he is gas-free, but way less than when he was all out of sync with the bipap.

May 29:  Changed Colin's g-tube last night.  The first time it was changed was at the Children's Specialty Center by Dr. Colletti (our GI Doc).   We've been noticing that the extensions were falling off and leaving big messes!   And, there was leakage around the tube for a few days.  Well, Gene finally figured out that the housing was cracked.  Time for a change!  Gene did a good job.  There was the tiniest bit of drainage this morning, but the site looks great!    On a side note, Colin was good on bipap last night and at nap today.   And, he's been in a great mood and his sats have been wonderful and his heart rate has been amazing!  We are still giving him a slow feed, at about 50 cc/hour for about 22 hours a day.  We've made an appointment to have another GI study done.  Just realized the appointment was when Gene is going to be gone to Laconia, NH for Bike Week, so I have to change the appointment.

June 1:  Well, I haven't been too thrilled with Colin's SATs lately.  Some times he is 98-99% but I haven't seen many 100%s.  On and off bipap he runs 95-98% mostly.  I hope he's not micro-aspirating from reflux. 

He had a crash last evening while company was here.  He did some little ones requiring suction and oxygen downstairs, and Gene and I knew what was coming so we brought him up.  We suctioned, gave him 8 liters of oxygen blowby and Gene gave him some breaths.  Stuck him on bipap with a some O2 for a bit.  He came up slowly but steadily.  Finally his numbers were stable but he was not happy.   Took him a while and lots of distractions to get him to calm down and smile again.  

He slept well during the night.  He was good with bipap.   I only took him off for about 25 minutes in the middle of the night.  His heart rate was good, low 100s and 90s and his SATs fluxuated from 95-99%.

July 24:  Aunt Chris and I brought Colin to Burlington to the Hearing Outreach Clinic.  He was not too crazy about the test.  We brought his little mini fan to distract him.  The audiologist was able to get what she needed. 

August 23, 2002:  I hadn't been satisfied with the way Colin's mask was fitting for his ambu bag or in/ex.  I found another one that I thought was too big before, but we tried that and we got tons of stuff out!  Way much better seal.  Big difference!  I got some yellow stuff out in the afternoon and some out in the evening, too.  Our plan has been to in/ex morning, before nap, and before bedtime, but we've only been faithful doing the morning one.  Well, we are going to do it 3 times a day for NOW ON!

Colin got 2 immunizations today.  I think MMR and Chicken Pox.   He's catching up--these were his 12 month shots!  He did okay.   He sure did not like Nurse Peggy from Mousetrap.  He cried, held his breath and had a high heart rate.  He only dipped to 92%, which isn't bad for Colin!   His heart rate went up into the 180s.  I gave him Tylenol twice.  He really seems fine. 

November 7, 2002:  Colin got his flu shot today.  Long story but Julie had to go to Mousetrap and draw up his dose and Casey's dose.  We had Emla cream on his let to numb him up.  He cried and dipped to about 84% but came right up.  He stopped crying pretty quickly.

November 12:  Well, I'm thinking that Colin is refluxing despite his nissen.  I talked with DR DiMichele and he thought we should get an upper GI done again.  I am not looking forward to that.  Germy hospital and a pain in the butt.

Today he was really "off."  For the past 6 or 8 weeks I'd say he has been slowly showing signs of refluxing again.  The morning feeding (just 6 ounces) seems to be too much for him.  I end up having to give it to him over an hour and a half and he seems very uncomfortable, especially if he has to poop.   He is just so tiny and doesn't have a lot of room in there and I think it pushes the food up.  He gets increased secretions and high heart rate, a bit sweaty and unhappy.

I talked to Dr DiMichele and he is going to schedule another upper GI.  Ugh.  Just what I feel like dealing with right now.

November 13:Today Colin got two RSV shots (Synagis).  He got one in each leg--Nurse Nancy L on one and Nurse Sue on the other!  He cried but his sats only went down to 92%.  He got over it more quickly than the flu shot last week.   I haven't even given him any Tylenol.  I'm a little nervous, as several parents of SMA kids have said that after each Synagis injection their kid has developed a respiratory infection, sometimes very severe.  I don't remember anything unusual about the injecions with Colin last year but he had so much going on last winter who knows!

Okay, so I will play catch up later...

January 30, 2003

RT brought two new masks for Colin to try.  They are just the tiniest bit big, but he can wear them now if we position them properly.

They are both by Respironics:

Reusable Contour Nasal Mask-Petite  #302219

and

Profile Lite Mask-Petite  #1002849 which is a gel mask that you can heat and then comform it to the face. 

Colin picked the Reusable Contour one to try for nap.  He probably picked that one because it looks more like his Respironics Small Child one!  He did fine with it.  Both use the same caps that we have.

February 20:

Three significant events today:

First, Colin spit up again!!  He was not tolerating his food well...having high heart rate and all.  Then Tami and Jennifer came to have a co-visit and they turned off Sesame Street and tried to get him to play.   Well, he looked and sounded awful so we put him on bipap because of his high heart rate and low SATs.  He seemed like he needed to be suctioned and I got out a lot of THICK mucous and then, spew!!  He spit up formula!  He cried and cried and it took him a long time to calm down! 

Second, he got his leg immobilizers today!!   (http://www.medi-kid.com)  Yay!  I had to buy them outright because I don't know what will happen with the special ordered pair that we originally ordered.   They are very cute.  They are blue with animals on them.  I got him the 9 inch medium ones.  We had them on for about 20 minutes.  He wasn't too happy when we put them on, but he seemed to forget about them.  When we took them off, he had big red spots on his knees!!  It took a while for the red areas to fade.   Tomorrow I won't make them so tight.  I really, really hope these will help stretch his legs out to make standing in his future stander better for him.

Colin has another TOOTH!!!  I've been looking for ones on the bottom towards the back where there are some major bumpy gums but haven't looked to close to the front.  Nancy L said, "oh, Colin has another tooth!"   There it was, it's on his left side, next to the two middle ones!!  Wow!!

March 18, 2003

Okay, we just got a new mask and head gear for Colin. ($170.00!) It is Respironics Comfort Select Nasal Mask and Deluxe Headstrap Small. #1007930

The head strap looks huge, but it is looks like it is very adjustible as you can cut off extra strap.

And, it has two head spacers which I like. Colin was getting a mark/bruise in the middle of his forehead from the pressure. I've tried the foam 3/5 spacer and the 4/6 spacer on the other masks but just can't get it right.

Okay, and this one has "Quick Clips". That must be what Lisa H and Lisa M were talking about, right??? Haven't figured out what they are yet!

Will let everyone know how it goes!