Seeing a New Doc at UMC

Evan's primary care doctor wanted us to see a pediatric endocrinologist (which means another trip to Tucson since we don't have that type of doctor in Sierra Vista). His doctor's appointment was at his old stomping grounds...University Medical Center. We saw both a pediatric resident and Dr. Wheeler. Luckily, no shots or other crazy tests. We have to get an x-ray done of Evan's hand. An odd thing, but that will help to determine his bone age (to see if he's having a growth problem). When we see the doctor again in three months, he'll take more precise measurements and start tracking Evan's growth more closely. At least Evan is getting taller (but he's still way small for his age).

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Weight: 21.8 lbs.
Height: 32 in.

Back to the Doc!

Evan had a doctor's appointment today (and ironically he has the crud also)...but his appointment wasn't for the crud, but to check on a problem he's been having at daycare. About 4-5 times over the past month, he's been having these passing out episodes where he stops breathing and turns blue. It takes his teachers about 15-20 seconds to get him back to normal by blowing in his face or splashing him with water. These episodes are usually brought on by extreme crying (usually someone stepped on his hand or knocked him over). We've never seen this happen at home, so it's really odd.

Dr. Smith was concerned about these episodes and wants to pursue all the options to make sure it's not something serious. He said it sounded like a case of breath-holding syndrome, which is what is sounds like. He is having Evan do a bunch of tests to rule out "Syncope" which is a more serious issue. We have to get blood draw to check to make sure metabolically everything is fine; a 12-line EKG; chest x-ray and MRI and EEG (at Tucson Medical Center). We're wating to hear from TMC when the EEG and MRI will be. Thank goodness he'll be sedated for those tests.

After the doctor's visit we went to the hospital to have Evan's blood drawn and EKG. The poor boy hadn't napped or ate anything all day, so he was miserable. We tried to get the EKG done first, the lady was able to get the stickers on his chest without too much fuss, but when she put the leads on, Evan lost his mind. We decided to wait until after he got blood drawn to do the EKG. Of course, the blood draw was terrible since Evan was so dehydrated. The poor lab tech had to use the top of Evan's hand to get a good vein. It took 2 lab techs and me holding him in the chair. After the blood draw, we tried the EKG one more time and of course, he was a no-go at that station again. We'll try again in a day or so.

On top of Evan feeling terrible today due to the onset of a bad cold, he got a flu shot. Dr. Smith was also concerned with Evan's chest congestion, so he prescribed Pulmicort 2 times a day in his nebulizer for the next 2 weeks. That should help open up his chest a bit more.

Weight check: 21 pounds 3 ounces (will the boy ever get heavier)??
Length: 31 inches.

Check Up With Dr. Hassan and Upper GI

Today was the last minute appointment with Evan's Gastroenterologist (Dr. Hassan). We're fortunate that he comes down from Tucson about once a month now. Before Evan's 9:30 appointment, we had to get an Upper GI done on him at Sierra Diagnostics. Dr. Klein was the doctor who did the procedure, which didn't go as well as planned.

The x-ray technician who prepared the Barium drink made it really thin. I was prepared with one of Evan's bottles with a y-cut nipple for thick liquids. Of course Evan went crazy when it came time for him to lay on the x-ray table. When we gave him the bottle with the Barium, he was laying on his back and all the liquid rushed out through the nipple. Poor guy probably felt like he was drowning, so he didn't get enough good swallows for good pictures.

They also took a chest x-ray since Evan had a bout of pneumonia last fall. It was just a precautionary thing to make sure he didn't have any lung damage. Dr. Klein was able to see that all his digestive anatomy was in place; which we pretty much knew already.

Our appointment with Dr. Hassan was quick. He decided to give Evan a prescription for Prevacid; so we stop giving him Zantac and give him this instead. We have to get Evan re-weighed next Thursday at the pediatrician and if he is still losing weight, Dr. Hassan wants a call from the pediatrician. He weighed 8 kilograms when they checked his weight (about 17.6 pounds)

18-Month Check-up

Can you believe...18 months??!! It was a relatively quick check-up with Dr. Smith...quick listen to his lungs, ears and teeth check. I think I forgot to mention one of his bottom molar teeth is coming in. He has all four top front teeth, two bottom and one bottom incisor tooth. He isn't very patient in letting us look in his mouth. ;-)

Of course Evan is still very much underweight and under-height for his age, but at least now he is gaining weight. Tomorrow we have an appointment with the speech therapist who will do a feeding assessment on him. We're still waiting to hear on the results of his sweat chloride test from Monday.

Weight check:

18 lbs. 2 oz.
28.5 inches tall
45 cm head circumference

If you open this image, you will see two circles connected by a line, the circle on the left represents his adjusted age and the right circle is his actual age:

Trip to the Pulmonologist

Evan's scheduled appointment to see Dr. Brown at the Children's Multi-Specialty Center in Tucson was bumped up a week to today. The doc wants to see Evan a little more regularly (every 3-4 months) to check on his development. He says his lungs sound great (aside from the bit of upper respiratory funk he had today). He is concerned (as we all are) about Evan's slow weight gain. I asked him if Evan was a unique case and he reassured me that it's nothing he hasn't seen before (whew). I think we've all come to realization this kid is going to grow on his terms, not according to any charts! As Evan gets bigger, his lungs will continue to strengthen.

Dr. Brown also wants us to take Evan to see a pediatric gastroenterologist. Luckily, there is one in Sierra Vista, Dr. Hassan! Woo-hoo, one less trip to Tucson. His appointment isn't until late next month. Dr. Brown was concerned about Evan's daily (if not multi-daily) vomiting. Not sure if I mentioned this before, but Evan loves to stick his hand in his mouth to make himself throw up. By seeing Dr. Hassan, hopefully we can determine if there is a GERD issue.

One other test Dr. Brown wants to run is a sweat test. This is to rule out Cystic Fibrosis. He is almost positive that Evan will be negative for this based off of other questions he had asked us, but he's wanting to rule it out. We'll get that done at University Medical Center in Tucson after the new year.

With all these trips to the doctor's offices for shots and check-ups, Evan has now come to fear the white labcoat! We knew this day would come! He screamed almost throughout the entire check-up with Dr. Brown. The nurse barely got a decent pulse oximeter reading on him (the more the crying, the lower oxygen saturation levels). We managed to get his reading to 98% for a fleeting second and that was good enough.

Dr. Brown is now seeing patients down in Sierra Vista.....another woo-hoo! So we'll see him again in March or April.

Check up with the doc...and a video

We took Evan to see his local pediatrician for 2 reasons. The first was to get this bump on his foot looked at. We call it his "barnicle" since it sort of looks like one. The doc says it's probably a wart and the best way to heal it is to use (of all things)...duct tape. There's something with the fibers in the duct tape that helps to remove it. He says it will take up to 6 months (yikes)!

The second reason was a follow-up with what Evan's pulmunologist said about his lack of weight gain. We saw Dr. Smith instead of Dr. Ettinger since Dr. Smith is a bit more in tune with modern medicine. Not that Dr. E is a bad guy, but some of the advice he's given us in the past has been a bit antiquated. Dr. Smith did give us the dreaded diagnosis I had anticipated "Failure To Thrive" or FTT. You can read more by clicking that link. Basically, since Evan has not shown significant weight gain, he is classified as FTT.

Where we go from here is to get some lab work done on him to see if there is a metabolic reason. He's never been a big eater, but for the past month or so, we've been giving him PediaSure in his bottle instead of whole milk. PediaSure is packed with calories, so any normal kid would be porking out by drinking it all the time like Evan has been. On the doctor's scale, Evan weighed 16 pounds 5 oz and was 27 inches long...so that's a weight gain of like 0 over the past few months.

We also have to keep a detailed food log over the next month. We have a follow-up with the doctor in about 4 weeks. At that time, we'll go over the log and lab results to see what the next step is. He'll also get his 15-month shots (yuck) at that check-up. His Synagis shots are also on the horizon. Poor guy with all the shots!!

On a happier note...here is a vid of Evan from tonight. This is the first time he's used his walker with no assistance!

Trip to Phoenix again

Evan had his post-op appointment with Dr. Argueso today up at the Mesa clinic. We got there about an hour early which we thought would be perfect timing to give Evan lunch. We were surprised when they called us back right away...love that! The Physician's Assistant who we met on his operation day check him out first. She was concerned about some "skin adhesion" issues that she saw. Not to be too graphic, but Evan's foreskin is trying to adhere back, soooo, we have to put this steroid cream on him 2x a day for the next 3 weeks to help soften the skin. Then...we have to go back to the MEsa clinic and they will put some numbing cream on him and peel the skin back. Ouchies!! They say it will be a bit uncomfortable (great, for the 3 hour ride home)!

Check up with the pulmonologist

Today Evan had a check-up with the pulmonologist. This is that twice a year (or so) appointment he'll have probably for the next year or two. Figures that Evan had a little cold, cough and fever over the past weekend! We didn't want the doc to hear him all congested and wheezy, but alas (Murphy's Law I guess).

The doc wasn't overly concerned with his wheezing and congestion, but more with his lack of weight gain. Evan still is right around (or below) the 16 pound mark. He's now starting to really fall off the height/weight chart, even when it's adjusted for his prematurity. He looks like a perfectly proportioned 5 month old who can crawl and almost walk! He suggested we see a nutritionist; not sure if there is one down here in Sierra Vista, but he could refer us to one in Tucson.

We did get a stop-order on his home oxygen. So now we can return the tanks to Apria. They've been collecting dust since about January! Since he's been wheezy, we're giving him the albuterol treatments again.

**Weight Check:
- 16 lbs.
- 27 inches

Trip to the Doctor in Phoenix

We made the long trip today to see a specialist in Phoenix. It seems there are no pediatric urologists in our neck of the woods or in Tucson. It was a cool day in Phoenix, in the low 100's!

Evan's appointment was with Dr. Argueso who is part of the Pediatric Urology Associates. In earlier posts I may mentioned about Evan's hypospadia. He doesn't have a severe one as you might read at the link I posted, but his foreskin didn't grow the whole way and it is causing some curvature. His urethra is right where it should be, it's the foreskin around it that is causing the problem called "chordee". We were hoping the specialist would tell us this was just a cosmetic thing and that he wouldn't have to have surgery.

Well, the little guy does have to go under the knife on Monday. We're scheduled for surgery at 0700 this Monday morning in Phoenix (yuck)! The doctor assured us Evan's condition is very mild and the surgery will only take about 30 minutes. He will be put under general anesthesia and they will also give him something similar to an epidural which will keep him numb after the surgery.

NO worries...just a pain that we have to drive to Phoenix again; but it will be good to get this taken care of now when he is young.

5/1/07: Day 291 (Tues.) 9-Month Check Up

Evan had his 9-Month Well Baby Checkup today. Since Dr. Ettinger is on sabbatical, a new younger doctor, Dr. Smith gave Evan the exam. Evan still is an ounce shy of 14 pounds, but he is getting longer (25.5 inches). When I inputted all his stats, he has fallen into the -2 standard deviation (you can see on the chart). Nothing huge to worry about, but he is small even for his adjusted age.

Evan still has that lingering cough with nasal congestion. Dr. Smith thinks it will take a while for him to kick it since he's been seeing perfectly healthy kids have it for 8-10 weeks. So the nasal sucking will continue (Evan just loves it)!;-)

Dr. Smith also put Evan back on the Albuterol treatments every four hours for the next 10 days. He thinks if we can get his airways wide open, it will help him expel a lot of that crap in his chest. There was definitely no pneumonia in his lungs, so that is a relief. He is having us stop the 3 times a day Dimetapp/Albuterol syrup that Dr. E had prescribed. Dr. Smith says research has come out showing that it really isn't effective. Which I can see in Evan's case since he has been taking that since the end of March and his cough and congestion hasn't improved.

We also got the green light to start him on rice cereal/solids. Yea! A step closer to getting him caught up with his peers!

Happy Anniversary to Jen's parents!!

** Stat Check:
Weight 13 pounds 15 ounces
Length 25.5 inches
Head circumference 42cm


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Chronological age: 41 weeks and 4 days
Adjusted/developmental age: 7 months, 2 weeks and 1 day
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4/16/07: Day 276 (Mon.) Checking In With Dr. E

Since Evan still had that yucky sounding chest congestion, we took him to see Dr. Ettinger as a precaution to make sure it wasn't pnuemonia. Dr E had a medical student helping out in the office and we saw him first. Dr. E cam in later and reassured us that he was fine. We have to keep suctioning his nose out with saline drops and that bulb-sucking-thing. Evan hates when we do it, but I think he is happy afterwards since he can breathe a bit better. We don't get a whole lot of stuff out of his nose, but it must be enough. Dr. E is also not concerned with Evan's slow weight gain, so we'l keep doing what we've been doing. We're still continuing to give him the Dimetapp with Albuterol 3 times a day. Dr. E hopes that will keep asthma from developing. He also thinks that last Synagis shot will be it for this season. It depends on his weight if he will be eligible to get the Synagis shots this fall.

We found out Dr. E is taking a sabbatical to study marine biology down in Mexico. He has another doctor coming in (who used to practice in Gainesville) to cover him while he's gone. He said he isn't retiring...but will continue to work 3 or so days a week and golf the other days when he gets back.

**Weight check: 13 lbs. 15 oz.**
**Height: 24 inches**

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Chronological age: 39 weeks and 3 days
Adjusted/developmental age: 6 months, 4 weeks and 3 days
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4/13/07: Day 273 (Fri.) Last Synagis Shot (Hopefully)

Evan had his last Synagis shot of the season (fingers crossed). The appointment took a bit longer than we expected since it took a while to get a good pulse oximeter reading on him. The highest reading they could get was 95%...which isn't great, but enough. Evan is still wheezing a bit from that first sickness he had two weeks ago which may be the reason for his oxygen saturation level to be so low. We still have some leftover Albuterol ampules that we use in the nebulizer and have been giving him treatments once a day. The nurse told us to call for an appointment to see Dr. Ettinger on Monday if he is still sounding bad. I have a feeling with Evan's lung issues when he was born, the nebulizer treatments may be a daily thing through the spring allergy season.

**Weight Check: 14lbs. 0oz.** This is sort-of concerning to us since Evan hasn't gained a whole lot of weight in the last 2 months. He's only gained about 1/2 pound in 2 months.

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Chronological age: 39 weeks and 0 days
Adjusted/developmental age: 6 months, 4 week and 0 days
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2/27/07: Day 228 (Tues.) Visiting the Tucson Doc again

Evan had a follow-up appointment in Tucson with the Pediatric Pulmunologists. We met with Dr. Daynes (the same doctor he saw the last time). Evan got a clean bill of health from her (he lungs sounded perfect to her). One last hurdle to jump over to finally be done with all the home oxygen equipment. Dr. Daynes wants Apria (the home oxygen company) to do an overnight pulse-oximeter test on him to make sure his nighttime oxygen saturation is good. We're waiting for the call from Apria to get it set up. Dr. Daynes said Evan doesn't have to come back for about 6 months. We anticipate having to do a few follow-on appointments as he gets older to make sure he doesn't have any asthma/allergy issues.

**Vital Check**
Weight: 13 lbs. 5 oz.
Length: 24.25 inches

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Chronological age: 32 weeks and 4 days
Adjusted/developmental age: 5 months, 1 weeks and 4 days
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1/15/07: Day 185 (Mon.) Another Trip to the Pulmonologist

We made our third trip to the pulmonologist in Tucson. We had our fingers crossed that we would get the green light to take Evan off the O2. When we got there, I overheard the nurse saying Dr. Brown wasn't there that day (he was the second specialist we saw, the first was Dr. Morgan). This time, we saw Dr. Daines, the third different doctor. They didn't even have a nurse there to take his pulse oximeter reading, so it was a quick visit.

Dr. Daines played cautious and told us to take him off the O2 during the day, but put him back on at night. We have to come back in another month (aargh). The receptionist had me call a different number to get an appointment since they were already booked up for the clinic a month from now.
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Chronological age: 26 weeks and 3 days
Adjusted/developmental age: 3 months, 3 weeks and 6 days
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12/29/06: Day 168 (Fri.) RSV Shot and Weight Update!

Evan had his 3rd Synagis shot today. You can read his latest weight/length below (he's becoming a chunker)!. He had gained 1 lb. 5 oz. since the last Synagis shot in November, so the nurse said she had to add a cc to his injection (a good thing). He was a trooper again during the injection. He cried for about a minute and then was fine.

He has his 6-month well-baby exam on January 17th (which also means his 6-month shots also). We asked the nurse to do a quick oxygen saturation check on him also. We turned off his oxygen and he was in the upper-90's, which is excellent. We can tell the pulmonologist in Tucson that he is finally at a normal level at our altitude.



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Weight update!
11 lbs. 4oz; 23 inches long
Chronological age: 24 weeks and 0 days
Adjusted/developmental age: 3 months, 1 weeks and 6 days
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12/12/06: Day 151 (Tues.) Doctor Visit!

Evan had a follow-up appointment at the Children's Multi-Specialty Clinic in Tucson. We thought we would be seeing Dr. Morgan, but it was a different doctor (I think it was Dr. Brown). Our appointment was at 8:30am and we hoped we wouldn't have to wait as long as we did at the last appointment.

The nurse called us back to do his stats...he weighed 10 pounds 5 ounces; was 22 inches long; and his head circumference was 39 cm. I plotted his latest stats on that image, so you can click on it to see a bigger view. He's still just below average, but that's o.k.!

The doctor suggested we increase his amount to 4 ounces every feeding. He's been taking about 3 ounces every time. We have to get him to about 28+ ounces a day in order to plump him up more.

The nurse came in with the "magic" pulse oximeter. Of course Evan maxed out on the pulse ox while on the oxygen. Now, the moment of truth...we turned off the oxygen flow. He did great! He averaged about 96-97%. That was a big improvement from two months ago when he was averaging the low 90s.

We were hoping to hear the great news that he could come off the oxygen...um...didn't happen. At least we can stop the Lasix in two weeks. The doctor didn't want to make too many changes at once since he's wanting us to increase the amount of his feeds. When he comes off the Lasix, we have to watch for any major changes in his breathing. While he's sleeping, we have to do periodic respiration counts to make sure he's not laboring harder to breathe. He should be breathing between 30-40 respirations per minute. If he is breathing more rapidly, it's a sign that there may be moisture build-up in his lungs and we have to start the Lasix again.

We have to come back (again) for follow-up in about 5 weeks. The doctor anticipates that he will get the green light to stop the oxygen. The next time we take him to see Dr. Ettinger, we need to get a pulse oximeter reading on him to see what his true oxygen saturation is at our altitude.

So, we continue with the oxygen! Bummer!

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**Weight Check: 10 lbs. 5 oz.
**Height check: 22 inches
Chronological age: 21 weeks and 4 days
Adjusted/developmental age: 2 months, 3 weeks and 5 days
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11/29/06: Day 138 (Wed.) Getting My Shot

Evan had a last minute doctor run to get his Synagis shot. This is that crazy-expensive once-a-month shot he needs to help prevent RSV. He received his first shot back in September, so this is just his second shot. He's supposed to get them monthly during the cold and flu season. He'll get his next one right before Christmas. He did relatively great during the injection. He was all happy until the nurse poked him. He turned bright red...no sound came out like it took his breath away...and then the cry let out. He didn't cry for too long and within a few minutes, it was as if he was back to normal.

We get to do this again next Tuesday at his 4-month well-baby visit with Dr. Ettinger. He'll get his next round of immunizations. Fun!

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**Weight Update: 9 lbs. 15 oz.**
Chronological age: 19 weeks and 5 days
Adjusted/developmental age: 2 months, 1 week and 6 days
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11/7/06: Day 116 (Tues.) Doctor Visit

Evan had his "well-baby" check-up with Dr. Ettinger today. When they weighed him, he was 9lbs. 4oz., which is less than when I weighed him on our home scale on Friday. I would guess my home scale is off a bit. We had thought Evan would get some shots today, but that has been put off for a few weeks. He is due for his Synagis shot...that is the shot to help prevent RSV that is crazy-expensive (over $2000 a shot). The nurse said they are waiting on word from our insurance to o.k. the shot. Once they get the o.k., we'll bring him in for that shot. He will get his 4 month shots at the start of December. I am anticipating that will not be fun.

The doc said his lungs sounded great (yea)! He predicted Dr. Morgan will take him off the O2 when we see him again on December 15th. When Evan hits the 10 pound mark (which I think will be in about a week and a half), we can stop giving him the Lasix dose. He is still getting the Poly Visol vitamins once a day. During feedings, we have been mixing his formula to equal 24 calories per ounce to give him a bot more calories per day to help boost his weight. Dr. Ettinger says we can back off on that and just mix his formula to be 22 cal/ounce, which will be a bit easier on his digestive tract.

So, he's doing just great...slowly (slowly) catching up to where he needs to be on weight and length. Dr. Ettinger commented on how he is getting baby fat, and that's a good thing. His cheeks, arms and legs are getting chubby! He is starting smile a bit more also.

On a different note...Evan slept AGAIN from midnight until 6am...two nights in a row! Fingers crossed it will last!
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**Weight check: 9 lbs. 4oz.**
Chronological age: 4 months 0 weeks and 4 days
Adjusted/developmental age: 1 month 3 weeks and 3 days
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10/20/06: Day 98 (Fri.) 3 1/2 months old!

Today was just a weight-check at the pediatrician's office. I wasn't expecting a big weight jump from Tuesday's appointment in Tucson. Evan weighed 8 lbs. 3 oz. today, a 2 oz. jump from Tuesday. It's always good to see a steady increase in his weight. We didn't try to test his O2 saturation off the O2 since his original reading wasn't at the usual high percentage. The highest the nurse could get was 96%. He usually registers at 100%...the nurse thinks it was because his hand was so cold. No worries!

His next appointment is November 7th with Dr. Ettinger. Since Dr. Vedock is moving away, Evan will just bump over to him. He will probably get his next Synagis shot at that appointment (another $2,000 shot, ouch). He's also getting close to his next round of shots at 4 months. He also is due for his second Hepatitis B shot. I am anticipating that will not be a very happy appointment for Evan. :-(

I tried getting Evan to nap in his play-yard, but he was not happy about that. Instead, he fell asleep in his swing which doesn't look as comfortable to me, but I guess he likes it!



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Chronological age: 3 months 2 weeks and 0 days
Adjusted/developmental age: 4 weeks and 6 days
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10/17/06: Day 95 (Tues.) Tucson Doctor Visit

We were hoping for good news from the pulmonary doctor (Dr. Morgan)...it wasn't the news we had hoped for, but it was good news. We had hoped to hear the words "he doesn't need the O2 anymore"...we didn't. :-(

His appointment was scheduled for 11:30am and we got there about 15 minutes early. We were so happy when they called us right away and they did all the usual stuff (weight/length check, took his temperature). Well, they put us in one of the exam rooms and we waited, and waited. T's stomach growled louder and louder. Then Evan was hungry, so we gave him his bottle.

Dr. Morgan's nurse finally came in about 12:30pm to do all the preliminary paperwork (stuff that we though they should have had already such as his birthdate, when he was discharged from UMC, etc..). She gave us much of the same information we already knew such as not taking him into malls or crowded places to reduce his chance of picking up any funk. She tested his O2 saturation (the thing we have all been waiting for) while he was on the O2. He was maxed out, as we expected. Then, we took the O2 off, held our breath and watched the monitor numbers. He averaged about 92-93% on room air in Tucson. Pretty good! The nurse thought maybe the doctor would allow us to take him off the O2 during the day and put him back on at night to give him a little push.

Dr. Morgan came in with a medical student by his side. Nice guy, very friendly. He checked Evan's lungs and said they sounded great. Yeah! No crackling! I am assuming from the results of Evan's O2 saturation that the doctor did not give us the green light to take him completely off. He would rather keep weaning him down (at least that will save us a little on switching out the O2 tanks as frequently). When we take Evan to Dr. Vedock's for his weight check, we'll have them test his O2 saturation at 1/8 liter (he's on 1/4 right now). Dr. Morgan said he is really close to coming off the O2, but he still couldn't give a definitive time frame. It's all due to altitude at this time. If we lived closer to sea level, he would already be off.

So, our little guy is still tethered to his tank. We have to go back to see Dr. Morgan in December. I would hope by then he would give us the go ahead to remove the O2.

Here's the weight check for ya Joey!!

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** Weight Check: 8lbs. 1 oz
** Length: 20.25 inches
Chronological age: 3 months 1 weeks and 4 days
Adjusted/developmental age: 4 weeks and 3 days
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