Colin's Medical Journey...Part II
October 24, 2002 through April 3, 2002
When I despair,
I remember that
all through history
the way of truth
and love has
I am writing this a week after we returned from our journey to New Jersey for Colin's g-tube...
Wednesday, October 24: We woke up pretty early because we had to finish packing and get to the airport early. Colin had a good night, I was happy with his nursing. Things worked out well and we were all packed and said good-bye to Casey and left him in the care of our nurse, Sue. We drove to Grandma and Grandpa O'Neills. Grandma wasn't feeling well, so only Grandpa drove us to the airport. We arrived early, at my insistence, because of the increased airport security. We checked our bags and Colin's car seat. So we went up to the restaurant and had some breakfast. Colin was a little whiney and I was nervous. When it was time to board, finally, we were a little later than I wanted. Somehow we missed the early boarding call. We had to go through several check points and show our IDs and tickets and such. I was holding Colin as well as my purse and diaper bag. He was very fussy and didn't seem right. We were taking too long to board. We finally got on and I said to Gene, "Something is wrong. We need to sit and do something." The stewardesses noticed but tried to play it cool. We got to our seats and asked for O2. I swear I remember them telling me it was coming and that the Captain was coming. We told them we needed it now. I don't really remember how it happened, but we were escorted off the plane. I was wailing that we needed to go and we had to get back on. When I finally calmed down I knew we couldn't go on that flight. 911 was called and from somewhere O2 appeared. He was fine, just breathing a bit heavy. He had a poop, too. University of Vermont (UVM) Rescue came.
Colin was checked out in the ER by the ER docs and the PICU doc that knows Casey very well. He said he was as fine as he can be. He thought he'd be okay to fly if we had access to oxygen. But, no airlines let you bring your own and they need a day or two to set up oxygen for you ahead of time. We needed to get to NJ by 10 PM for Colin to get the G-tube on his scheduled time.
So, Gene called around and was referred to Angel Flights. We went home for a couple of hours and they found someone willing to fly us to NJ. We packed our own O2 and Colin's Sat monitor this time! Grandpa O'Neill brought us to the private airport where we met our pilots. VERY nice and accommodating. VERY nice airplane. It was a five seater. We fit very comfortably. We made it down. Colin was okay. He wasn't eating at all. I couldn't get him to take any water, either. That worried us a lot.
November 9: Dr DiMichele wanted to get an arterial blood gas on Colin. I didn't want to go because I know how hard it is to stick these kids. Gene took him by himself. I guess it was pretty bad even though they had their best "stickers." His gases were normal.
Poor Colin spit up this morning. He's been a little fussy and sensitive these last couple of days. He didn't want to nurse and he hadn't had anything in his belly for several hours, so I gave him a mixture of breast milk and Vivonex like I have been doing. He got that awful look on his face and made a squeaky sound and out came some yellowy spit up. We used Casey's suction in his mouth to get what we could. It happened a couple of times. His SATs remained good but his heart rate went higher. Then we vented his belly and got quite a bit of gas out. He slept for a while and woke up happy. About 4 hours later he nursed for a bit and I gave him 29cc of his mixture. So far so good.
December 14: We convinced the doctor to let us try Prilosec instead of the Zantac. He had his first dose tonight.
December 15-18: Prilosec doesn't seem to be working. Grrr. We're still using it, though.
December 19 and 20: We had 2 good days of virtually free reflux! Maybe the Prilosec needed time to work?
December 20: Both Colin and Casey seem to have a cold. Colin is out of sorts, SATs lower, heart rate higher, breathing heavier. Casey went to school, but I knew he was getting a cold. Casey came home and was practically asleep in his wheelchair! He has tons of mouth, nose and trach secretions. Colin has increased secretions, too. We never had to suction him before, just once or twice when he spit up a lot we suctioned his mouth. Now we have to do his mouth and nose occasionally. He does seem to be able to handle most of the secretions on his own though.
December 26: A nurse came to do Colin's weekly weigh-in. While she was here, Colin did a crash. Made a call to on-call pediatrician. We were going to try to wait to see our regular doc on the 27th, but decided we shouldn't wait. The on-call doc called ahead to our ER to get Colin in to be evaluated. Kind of scary transporting him. I drove (which I don't like to do--I'm chicken driving to Burlington, plus, my car isn't quite legal yet). Gene sat in the back with Colin in the car bed. The car bed we bought for Casey when he was Colin's age. Colin is pretty much too long for it, but we squished him in anyway. It lays flat, which is the important thing. At too much of a recline, Colin has a hard time breathing. We made it there okay. We had the bipap with us (but no way to use it in the car if we needed) the O2 Sat monitor, O2, suction machine, diaper bag. They got us in very quickly, as the doc called ahead. At this point Colin was perfectly happy. He just had a higher than normal heart rate. He actually was playing and smiling like normal. They did an x-ray and blood work. The x-ray showed a dense area behind his heart, left lower lobe. They couldn't say for sure if it was pneumonia, but decided to treat it that way. It also could be some atelectasis. (Collapse of alveoli) The blood work showed a slightly elevated white count, but mostly normal. So we got to go home. Filled a prescription for Augmentin for Colin. We also got some Amoxycilan for Casey as his cold has lingered...
December 27th: The poops have started. Yucky medicine! He seems to be better at times, yet then he does a "dip". Happy though! Lots of suctioning in the AM.
December 28: Pretty much the same. Kind of worried in the AM. Called doc. He said he'd come by after office hours. Of course, by the time he got here, Colin was doing great! He listened to his lungs and declared them clear. He really doesn't think it was a true pneumonia. If it was, he'd hear crackles, even two days later. I agree with him. I think it was a slight collapse of his lung. And, I think it had been coming on/going on for about a month or so. Aggressive bipap (17/2) and a bit of CPT really help.
January 6: Colin seems back to normal. I mean, he still breathes heavily and sometimes flares his nostrils and grunts, but his SATs are way better. His heart rate is sometimes better, but still higher than I'd like it.
January 17: Colin got his original g-tube changed today to a low profile MINI button. We had no nurse for Casey this afternoon, so Gene, Casey, Colin and I piled into the van and drove to Burlington to FAHC where they have a Children's Specialty Clinic. Casey and I stayed in the van in the drive-up area while Gene and Colin went in. Casey and I had a great time (he got to ride in his chair which he doesn't get to do a lot) watching people, "chatting" and reading books. An hour later, Gene and Colin came out. Colin was totally happy. It was not as traumatic as I thought it would be! Gene said he did cry when he tugged it but not that badly. The old g-tube had a balloon in it so it deflated easily and came out pretty well. Casey's original tube had a mushroom valve that really had to be yanked before it collapsed so you could pull it out. Colin promptly fell asleep and was very good the whole way home! I ran his feeding at 20cc an hour for a while and it seemed okay, so full steam ahead at 50cc an hour!
Oh, Colin gained about 7 ounces from last week to this week! He went from 14 pounds 14 1/2 ounces to 15 pounds 4 1/2 ! Good boy!````late entry...he must not have gained all those ounces, because when we weighed him the next Wednesday, he was 14 pounds 12 1/2 ounces...Go figure!
January 19: Not sure why, but Colin isn't tolerating bipap that well during the night, and when I think of it, not very much during the day, either. I've changed some of his settings, I thought for the better, but hmmm...I sent an update and some questions to Dr Bach about both boys. He said he'd have Lou (RT) get in touch with me.
January 29: Tried the IN/EX today. The Rep from Emerson came to try Colin out on the IN/EX. It didn't go that well. He was not happy because each time we tried it (5x)Colin desatted into the 80s. He hated it so much that he'd clamp down and hold his breath. The machine would take the air out of his lungs, but Colin wouldn't cooperate to let the air back in. It was hard for the Rep to try to find appropriate settings for him, too. I may try what some of the moms have suggested. He will be talking with DR Bach to get his opinion. For now, I think I will just let Colin play with the mask and hear the machine and not try to use it quite yet.
January 30: Colin had a bad episode this afternoon. Of course it was when I had the bipap apart cleaning it and the suction was still upstairs from nap-time. I did everything I could do, suction, O2, reposition, and then I called for Casey's nurse, Nancy H., who was in Casey's room. She came in and we both did the repositioning, suction, O2. She ended up giving him some rescue breaths, which I think dislodged his plug. His SATs were at about 33% and his heart rate low--not sure but I think in the 30s. I called 911 because he just wasn't recovering well. Boy, they were slower than when we needed rescue for Casey! I finally got his bipap together and that seemed to help. A policeman showed up. By then Colin was 98% but his heart rate was still low, 130s-140s (especially after having a rough time, he should have been in the 180s!) Then Rescue came. One or two of them remembered us from BT (before trach) when Casey was having a rough time when he was using his negative pressure vent and bipap. So I signed the paper releasing them from any liability because we didn't need to have him transported. Gene came home pretty quickly. I reached him on the cell phone where he was on his way to do an errand. So, Colin was fine. But sooo sooo scary. He acted fine all evening and slept very well last night. He was on bipap from 8 P until after midnight and then from 4 AM until after 7 AM (and we put him on a lot in the late afternoon after his episode.) So, we go on.
February 3: I just realized that we did not have to suction Colin once yesterday, or today! I've been trying to give him extra water. I think that helps. He hasn't had any little episodes (Or Big) the last bad one on January 30th. Once or twice he's dipped, but recovered quickly on his own. Last night I gave him 2 extra ounces of water and 2 extra ounces of juice in his 24 hour recipe. That probably is too much at once. But, I actually had to stop his pump yesterday because he was going to finish his formula too early!
February 6:Tried the Farrell Valve tonight. It seemed to work. Either it worked, or Colin didn't have gas!
February 7: Farrell Valve didn't work. Major gas and nothing went up the tube like it was supposed to.
February 8-10: Kept trying Farrell valve, but it doesn't seem to do the trick for Colin.
February 18 or 19: Tried hanging the 60 cc syringe and venting Colin during the night. Gene put a screw in the ceiling. We hung some string and made a loop for the syringe that we can slip on and off. We hung it so it's right above where his button extension goes.
February 19: The venting works sooooo well. Sometimes he bubbles and bubbles. He may fuss a bit and wake for a second or two, but it is so much better.
March 4: Had the NP come to check Colin's ears. When I washed him this morning or touched his ear, he'd cry, really hard. NP said he was fine, but didn't mean there wasn't something brewing.
March 5: Ran Colin's night feeding at 35cc/hour instead of 55cc/hour. Wow, what a difference! He did great! I think we've hit on the right combination for him with the venting tube and the slower rate. I had to take off his bipap at 5AM for a large amount of gas through his bottom, but put it right on again after. He slept from 8:45 PM until 7:45 PM! We all slept great!
March 6: Counted my chickens too soon. Not a good night. Wouldn't stay on bipap. But he does sleep fine with great numbers without it. RSV shot today. He did really well. About 10 seconds of fussing. No redness or swelling.
March 7: Same night as last night. Grr.
March 8: Now we know why he wouldn't sleep on bipap! Ear infection! Doc came for care conference and checked out boys. Sure enough, his left ear is infected. 10 days of amoxycillan ordered.
March 9: Slept better. Made it through most of the night with bipap.
March 10: Back to normal, sleeping with bipap at night and naps, no problem.
March 12: Colin has been doing really well. Sometimes he seems so strong. When I was washing him up this morning he was pushing my hand away. When he first gets up in the AM he is really strong and wiggly! Head is so floppy, but he can wiggle it really well when laying flat or supported. His legs are so strong. He can hold them up when they are bent. He plays with them--up and down, up and down. He's also been more vocal lately. And he's sticking his tongue out again and making silly noises. Started new in/ex routine. Once in morning and once before bed. He has been having lots of secretions when I first put bipap on him at night. Tons, actually, and he plays with them and gets excited and it takes him a while to get to sleep! I have to suction his mouth time after time after time!!
And, he's been tolerating bolus feedings really well. He still gets the bulk of his food at night, starting at at 8P. Then he gets a bolus of 4 ounces at 8A, 10A, noon, 2P, 4P and 6P. I have been separating the formula mixture and breast milk. At one point I was trying to see if the breast milk was bothering him. He's fine with it, but I've kept it separate, giving him the 8 ounces of breast milk his last two feedings of the day.
Reflux is gone, I think. He is still getting Zantac, for acid/gas, and Reglan, for nausea and vomiting, 2 times a day, but I'm not sure if he needs it. I am going to keep him on it for a while though. I want him to be able to be on overnight feeds and then have boluses every 3 hours. We have to work up to that.
March 18: The last few days Colin has not slept well on bipap. I called the doctor to come and check his ears again. He came out this evening and said that Colin's ear has not cleared! I knew it! So, we had just finished with the amoxycillan for 10 days and now we start augmentin for 10 days. Ugh. We'll probably have "red-butt" again. Oh, when I picked up the Augmentin, I mentioned to the pharmacist that he was on zantac and reglan and that I was giving it the same time as the amoxycillan. I asked her about problems with that. She thought about it and said that since reglan increases GI motility, maybe there would be an absorption problem. GRRR. Aren't they supposed to check stuff like that? Anyway, I did not give him zantac or reglan when I started his new med this evening. We'll see how he does.
March 19: Seemed fine without the reglan or zantac. Still didn't sleep well with bipap. Did really well just sleeping "normally". Heart rate and SATs were fine.
Colin tasted baby hood today with me in the kitchen. I was determined if Lily can do it without choking, so can Colin! I had him on his Boppy (with a feather pillow "easing" the sharp angle of the boppy) with his head to the side. He tried cinnamon-raisin-pears and blueberry apple. He loved it! He was cooing and happy and taking the brush in and out of his mouth. Sometimes he'd get stuck and I'd help. He really didn't take much, but definitely got the tastes.
March 20: Still not sleeping great but did better with bipap. Did have a rough start to the day. Very "gunky" and sticky mouth and nasal secretions when we first got him downstairs. Did a "dip" to 69. Gene and I worked on him, used suction, O2, bag and IN/EX. Came up pretty quickly and was fine right after. Of course, this all happened before Nurse Nancy L came for him at 9AM!
It's official, Colin did gain good weight! Thought last weeks 11 ounce gain was wrong, but it was probably accurate. Today he was 15 pounds 13 1/2 ounces! Last week he was 15 pounds 11 ounces and the week before that 15 pounds even. So we're on the right track. I will keep his pack and a half of Vivonex the same, but I've now added 2 more ounces of white grape juice and cut back his breast milk to 3 ounces from 8. We don't want to have a "porker" here!
Lots of Augmentin poops today. Good mood all day. Very silly and happy.
Tasted baby foods on his nuk brush again. Today it was strawberry-banana.
March 21: Yay! Slept all night with bipap! I set pressures 2 points lower at 15. He only fussed a little when gas was running through, otherwise he did great!
March 22: Slept all night again with bipap at 16/2. I think his ear must be feeling almost back to normal.
March 28: Scratch the earlier entry about him sleeping all night. He has not done that again...We just finished the medicine for his infection. I am not convinced he is better. He has not slept well since that night. Last night, and the night before, he really protested having bipap on when it was time for bed. Not sure if it's an ear thing, him not wanting to give up and go to sleep or if he is worried that he's associating night time with getting food by pump and having the bipap on creating lots of gas...but he's been awful at night! I ordered an otoscope and it arrived today. I am determined to learn how to use it!
Started with new feeding schedule today. At 8PM he will get about 15 ounces of formula on the pump at a rate of about 35. Then he'll have a break for an hour or two and will then get 5 ounces at 8AM, 11AM, 2PM and 5PM. So now he is 3 hours between feedings during the day instead of 2. It's kind of nice to not always be thinking about the next feeding so soon. I'd like him to be able to handle a 6 ounce bolus feeding at some point. I'm sure he can, but we'll take it slow. He hasn't shown any problems with reflux or not tolerating his feedings since I stopped the Reglan and Zantac 10 days ago. The only problems crop up at night when he is on bipap and gets all that air running through him. His venting tube bubble and bubbles and I know it hurts him! I've kind of resigned myself to the fact that he needs a break from bipap during the night for him to get some "gas-free" sleep and for me to get some better sleep. He still is a "Bipap Prince," though!
March 29: Tonight I put Colin on bipap and instead of having the tube running down the front of his body, I had it up and over his head and running down his back. I'm hoping that the air will go into him in a slightly different way and that it won't produce as much gas, somehow. It's a long shot, but I don't know what else to try.
March 30: Well, I still heard a lot of gas running through Colin, but he did sleep better. I took him off for a couple of hours though.
March 31: Tried the tube going down his back again. He slept better last night than he has for a LONG time, and he was on bipap all night. Who knows why, maybe it is the different positioning of the tube!
April 2: No difference with tube positioning. No difference with no bananas. Still gas, sometimes bad and sometimes horrible!
April 3: Colin weighed 15 pounds 10 1/2 ounces today, down 3 1/2 ounces from a week ago. Guess I will have to play with his formula again. He really must be missing the breast milk.