The good, the bad and the ugly....(Part 1)

Hi little man,

You probably noticed that mommy didn't write you a note last weekend.  I'm sorry for that buddy but things were a little crazy.  To be honest things were more than a little crazy they were pretty insane.  I'm going to try my best to recap the past two weeks without writing a novel but I make no promises.  A lot has happened since our last note some of it good, some bad and some down right ugly.

Let's start out with "the bad" which unfortunately progresses to "the ugly".  Your daddy's last note left off after your appointment on Monday the 13th.  Tuesday we didn't have to be at anywhere but you did have two in-home appointments that went off without a hitch.  Early Wednesday morning you, mommy and your nurse Zion headed to the hospital for an early appointment.  As soon we as we got checked in you started gagging and spitting up (which is very unusual for you).  For the next several hours your heart rate was elevated, you were breathing fast and you just weren't yourself.  To make matters worse this wasn't a typical appointment but a clinic in which we had to sit in a classroom with a bunch of other babies and their parents for a presentation then wait in the waiting room for our individual appointments with the nurse practitioner and finally meet with the equipment company.  The purpose of this appointment was to fit you for a helmet since your head is so flat in the back from having to lay still for so many months in the ICU.  Mommy and daddy aren't too excited about this one since you are such a little hot box all the time and you don't exactly like things on your head not to mention we are heading into the summer months.  We know that it's something that needs to happen sooner rather than later but we still aren't looking forward to it.    Let's hope you surprise us as you have with so many things and just see it as a really cool accessory.

Wednesday was exhausting but by bedtime you had settled down and were acting like yourself again. We all assumed it was just an off day and whatever was going on had worked itself out.  Mommy was certain that you would be just fine and we convinced daddy that he should still go on the trip he had planned to Texas.  You tried to sneak in daddy's suitcase so you could go visit your Gigi, Grand dad Rooster, Uncle Sebastian, Aunt Alexa and Pappaw.  I promised they will all come to visit you again soon and before you know it we will be making that trip to Texas with daddy.  Although we couldn't all go mommy was very happy that daddy had a chance to see his family and give them hugs from all of us.

Thursday morning you made it clear that whatever was bothering you wasn't gone yet.  After much debate mommy and Grandma went ahead and took you to your pulmonology appointment that afternoon hoping they may have some answers.  The nurse and doctor spent several hours with you but after careful examination and some cultures they didn't find anything to be the cause of your issues. You did have some drainage around your trach for which they gave mommy some drops to clear things up but in the end no bacteria grew on the cultures.  We kept the Tylenol pumping through you and once again you seemed to settle out as the evening progressed.  Mommy really felt like you were over the hump and Friday we would be back to business as usual.

Mommy was wrong.  Friday morning started pretty rocky and this is where we move into "the ugly."   Mommy had to call the pulmonologist to give her a report since you had gotten worse from your visit the day before.  She wasn't able to see you and said you probably needed to go to the ER based on how fast you were breathing, your increased heart rate, low grade temp, gagging and increased work of breathing.  The other option was to see your pediatrician immediately.  Once again Wendy came to the rescue.  She was able to fit you into her schedule and back downtown we headed for the forth day this week.  Between doctor Hall and Wendy they literally checked every inch of your little body.  They did urine cultures, checked the respiratory cultures from the day before, x-rayed your chest and belly yet didn't find anything significant.  Because they had ruled out all of the extremely serious concerns we were able to return back home and check in with them over the phone.

The next two days are a bit of a blur.  Daddy was out of town, we didn't have a nurse either night or one of the days, and you were sick.  Thank goodness for Grandma and Grandpa.  Without them staying up half the night, waking up at the crack of dawn, fetching this, suctioning that, rocking you just so and feeding mommy I'm not sure how we would have made it through.  Things all kind of came to a climax Sunday morning when for the first time mommy thought there was a chance we were going to have to call an ambulance.  Thankfully Dr. Hall and Wendy had sent us home with an inhaler in case of such situation.   We were able to get your breathing and heart rate under control and as Sunday progressed you improved by the hour.  You were still fussy and tired but by Sunday night  your breathing was close to normal again and your heart rate was down.  You even squeaked out a half smile late Sunday night when daddy got home from the airport.   It took another 2 days for you to regain your smiley playful personality but it was obvious you were on the mend.

So what was the cause of such a rough few days you ask?   Good question.  Mommy has a few theories.  One is that you got your first tooth!   That's right between Saturday and Sunday your first pearly white peaked through your pink little gums.  Mommy also realized that we had weaned another one of your medications the previous week so you were still getting the night dose but not the day time dose which may have explained why mornings were so rough.  Lastly you had a lot of extra secretions and there was this new gagging maneuver that you had learned.  The week before during your scope Dr. A had removed some scar tissue from above your trach.  Mommy believes that this now allows you to cough up a lot of the secretions that you previously couldn't move past your trach.  Because you aren't used to this you haven't quite figured out what to do with it and mommy believes it is making you gag.

Although I hate that you had to go through such a rough few days I am extremely proud that you were able to work through it and not end up in the hospital.  You made it through 4 doctors visits in 5 days while being sick as well as a weekend without nurses or your daddy.  Mommy is super proud of how tough you have become and how much you are able to tolerate.  You have always been a strong boy but your tolerance and ability to bounce back from things is growing each week.

We still have "the good" part of the story left but mommy can barely keep her eyes open so I will write you part two tomorrow.  Stay tuned.........

Mommy and daddy love you Connor!

-Mommy

Tic Tic Tic...

Hey Bubbs,

So here I sit, finally, writing you a note to tell you about yet another big week in your little life. As I sit here with my headphones in, attempting to concentrate with all my might, your wonderful mommy and grandparents are doing everything they can to keep you awake and entertained and awake for another hour so you will be ready for bed and actually go to sleep at a decent time. You have been playing around with your schedule a bit and we are trying to get that roller coaster under control but we just aren't there yet. So we do what we can, which normally means lots of noises and faces and flashing toys. I find myself thinking "what am I doing?" and "does this help or does he think we are insane?" I guess we won't know but for now it seems to do the trick.

Before I get into last week and all the excitement I better tell you real quick about your visit with your Pappaw. He came up here and spent several hours with you and your daddy and we all had a great time together. We played and cuddled and he and I even got to take you outside with no tubes attached! It was pretty awesome to see you playing with him. I know he has been dying to get to play with you and you seem so happy when you see him smiling at you and making funny faces. Your Pappaw sure does love you little man.

Let me try to recount the last week now. I'll start with Monday. You had another appointment, thankfully this one was up north at the Liberty campus so both mommy and daddy could go with you. I know I don't always get to go with you and mommy to see your doctors but we are doing our best to make your appointment times later in the day when we can. Some doctors are busier than others though, so its a toss up. The appointment Monday was with your ophthalmologist (he is one of the busy ones). He needed to check on your eyes and make sure they were still looking as good as they were when we left the hospital and as a bonus (sarcasm is thick here in case you can't tell) they decided to test the pressures in your eyes because of the supposed clot that you have in your head. Well the regular eye exam went off without a hitch, you passed with flying colors and the doctor said he wouldn't need to see you again for several months. Right before that the nurse kept poking your eyeballs with some blue tipped pen until you went into full out "lose my ****" mode. They didn't get to test both eyes but the doctor felt confident you were doing just fine and the "clot" wasn't causing any excess pressure. I guess it is always better to be safe than sorry but some days I think you would rather take the risk and I can't blame you.

After that mommy and I took you around in the car for a while and you seemed to enjoy that. You seem to enjoy being in your car seat, at least while its moving. That is a good thing too, because you got to spend a LOT of time in it on Tuesday. You see Tuesday you had an appointment with your ENT doctor, Dr. A, so that he could check up on your trach and your nose job. You were supposed to be in and out and home for the night but about twenty minutes after we brought you in we were told there would be a delay of at least ninety minutes. That turned into two hours. That turned into four hours. That turned into six hours. The nurse in the pre-surgery floor actually starting cleaning all the rooms and turning off the lights before we got the call to tell us you were next. At that point we also found out for the first time that you were going to need to stay the night after this procedure. Apparently there was a mix up in scheduling and they forgot to tell us that beforehand so your mommy and I were badly unprepared. We didn't have enough milk, we didn't have any clothes for us to sleep in, we had enough for a six hour stay at the hospital but not for the twenty-four we were now facing.

So off you went to the operating room and we sat down and tried to figure out what to do for the night. We didn't have much time to think though, Dr. A was finished with you in a short thirty minutes and called us back to discuss what he had seen. As it turns out you did great, as you always do, and he didn't have a lot to report so no news was good news. He did tell us he was very impressed with how you were doing and that he had to remove a little bit of excess skin from your trach (it was a little scar tissue building up) so you could breathe better on your windows off the vent. Your trachea looked great otherwise and your nose had stayed open even better than he had imagined it would. All in all he was thrilled with you.

The next bit of good news we got from Dr. A was that you were headed back to your friends in the CICU for your little overnight visit. That made your mommy and I feel SOOOOOO much better. I am sure that any unit would have taken good care of your but we know you hold a special place in the hearts of the people up there and they take care of you like family. As a matter of fact we hadn't been up on the sixth floor for twenty minutes when one of your favorite nurses burst in and gave mommy a hug. It was heart warming to see the love on the faces of the nurses and doctors and RT's who got to take care of you that night. Maybe it sounds a bit sappy but for almost six months of all of our lives those people were just as much family as our real family so to see them just warmed our hearts.

Since your visit was kind of a surprise no one knew what you were coming in for and of course everyone was worried to see your name on the nursing board. It was so much of a surprise in fact that the OR nurses called your buddy Dr. Cooper and said "we have Connor Logsdon down here, would he be able to stay there overnight?" and he responded with "Connor? We love Connor, bring him on up!". I think he was excited to see you. Then once the nurses realized you were just visiting on a routine trip to the hospital they were all back to "oohing" and "aahhhing" over you like they always did. You saw some of your favorite nurses in those twenty four hours and you seemed pretty happy about that.

So the next morning mommy got you all packed up and ready to go and you had to say your goodbyes. It was great to see your friends but as wonderful as those people are you belong back at home these days and it was time to get you back there. Over the next two days you got to see your speech and physical therapists. They couldn't get over how well you were doing and how much progress you were making with things like rolling around and holding your head up. The PT even told mommy that she was impressed with how hard a worker you are. Personally I think that has a lot to do with all the hard work mommy does with you during the days. It seems like every day she is telling me stories about some new wonderful thing you are doing. Pretty impressive.

Compared to the first half of the week the second half seemed like a breeze. You were pretty content and once we got you back to a normal sleep schedule after an apparent all night party in the CICU things were back to normal, whatever that means these days. We spent a nice relaxing weekend and celebrated your mommy's first Mother's Day. She didn't want anything except to sleep in a little and spend the day cuddling with you. Mommy watched movies and cuddled you on the couch while your daddy and grandpa tried to take care of everything. Grandma even got some time to herself and then we all had a great dinner together, including you right there with us.

Speaking of eating, you have been doing some good things with food lately. Now you didn't get to do the usual baby thing and eat from a bottle (meh, who needs a bottle anyway). Instead you jumped right to taking baby food from a spoon. You aren't exactly gorging yourself at this point but you are taking small spoonfuls and swallowing it. That may not sound like much but let me tell you it is a BIG deal. We were worried that would take you months or years to get to but you have yet again gone above and beyond and surprised us all. I hope you never stop doing that little man.

One last little note to sneak in before I wrap up this novel. Today you went with mommy to see your hematologist, the one who was convinced there was a clot in your head, and you walked away with good news. Not only do they believe that the "clot" is no longer an issue and you therefore don't have to get your Lovenox shots anymore but your blood counts were all stellar and you don't have to have your iron supplement anymore either. Combine that with the one less dose of Neurontin you are getting this week and you have knocked out a good chunk of your med sheet. Keep going buddy and before you know it we will be down to just a few meds here and there. I can't wait, and I know you can't either. Tic Tic Tic, three more things off the list and counting down.

So keep up the good work little man, keep being so strong and keep working hard. We are so proud of you.

Mommy and daddy love you Connor.

- Daddy

A day in the life of Connor

Hi Little Man,

(Now that's an outfit...OH.....IO!)

A lot of people have been asking mommy what a typical day is like for you at home so I thought I would start out by briefly running through one.  I also thought it might be nice to document what life is like right now and then compare it where we are in a few months.

-5:40am  Mommy gets up (Daddy is already long gone for work and the gym, that's beyond early).
-6:00am Your nurse Stacy leaves if it's Monday-Friday morning (if it's the weekend either mommy or daddy have probably camped out on the air mattress in your room).
-7:00am You get some medicine in your G tube and mommy mixes up some milkshakes for you (we fill these up every 4 hours around the clock).
-8:00am You get 4 medicines through your G tube and your eye ointment.  You typically wake up about now and need lots of suctioning for the next hour or two as you get things moving.  You like to play quietly by yourself when you first wake up which gives mommy a chance to drink her coffee and stock up on all the supplies we will need for the day.
-9:00am You get one G tube medicine, your injection (blood thinner), and then mommy cath's you.
-9:00-11:00am We play, do our stretches, work on your therapy exercises, clean your G tube site/dressing, take a sponge bath and get dressed for the day.  We also do one of your hour windows off you vent during this time and try to wear your hearing aide on days that mommy is able to keep it in your ear. 
-11:00am Grandma and Mommy do your trach care
-11:30am You take a nap (sometimes this is a real nap other times its a 20 minute power nap).  Grandma usually hangs out with you during this time and plays with you if you're awake so mommy can shower and eat something.
-12:00pm You get 3 more medicines in your G tube and eye ointment
-2:00pm We typically move from your room into the family room and before long daddy comes home.  You and daddy play together and do some work on sitting up, reaching and other important things.  Together we all play on the floor, sit on the couch, spend a little time in your swing or bouncy seat and do whatever we can to entertain you which more often than not results in us being entertained.  You usually do your second hour window off the vent sometime during the afternoon and on good days we try and give your hearing aide another go.
-4:00pm You get some medicine to help you go to the bathroom which results in you promptly blowing out your diaper plus you get some more eye ointment.  Most days you take a little power nap around this time.  By now Grandpa is home from work and dying to get some play time with you. 
- 6:00pm The Connor train moves it's way out to the kitchen where we set up camp for dinner.  You usually play quietly and watch us all eat dinner besides needing suctioning here and there.  After the grown ups finish eating mommy and daddy try and do your tastings as part of speech therapy.
-7:00pm  You get one G tube medicine and we head back to the family room after changing out your feeding bag for the day.
-8:00pm  You get 4 G tube medicines and your eye ointment.  During the next hour we take turns hanging out with you (trying to keep you awake and happy) while getting the night chores done such as changing out the suction equipment and cleaning it, changing out part of your ventilator, thawing out milk and making bottles for the night and cleaning up our mess from the day.
-9:00pm  Time for your injection again and cath'ing (usually daddy does this).  Then off to bed you go.  Sometimes you fall asleep instantly and other nights it takes you a while to drift off.  On those night we try and read a book and cuddle.  Although it may take a bit to get you to sleep you almost always sleep well through the night once you are asleep.
-10:00pm  Your nurse Stacy gets here so mommy and daddy fill her in on the day and then try to get some sleep ourselves.
-4:00am  You get 2 G tube medicines and more eye ointment.

Right now that's a typical day in the life of Connor assuming you don't have any doctor's appointments (you average 3 a week) or any therapy sessions (right now the therapists come to our house 2-3 times a week).  We are starting to learn how to juggle your schedule around appointments, naps, and the million other variables that change on a day to day basis.  Luckily Grandma and Grandpa have been an enormous help to mommy and daddy so with some team work we haven't missed a beat yet.  You also have a day nurse two days a week that is also a big help.  Her name is Zion and you seem to enjoy hanging out with her.  This week your full time day nurse starts so that will be a big help and adjustment for mommy and Grandma during the day.  It's kind of hard to keep up with all your daily care, the phone calls, appointment scheduling, insurance crap not to mention regular things like laundry when all mommy really wants to do is play with you.  We are already getting more efficient with everything so I know over time this will all be very routine for us.  Plus in time there will hopefully be less and less medicines, appointments, and procedures making the days easier and easier.

Speaking of appointments you got an A+ from both your pediatrician and cardiologist this week and you were a champ during both appointments (which is impressive considering one was at 6:45 am and you had to get stuck twice for blood work).  Your pediatrician, Dr. Fletcher was thrilled with how well you have adjusted to home life.  You have gained a little weight since you've been home, done great with your windows off the vent and all of your blood work is stable.  We sure feel lucky to have Dr. Fletcher and his whole team on your side.  They are amazing at keeping all your issues sorted out and coordinating the billion specialists involved in your care.   Your little heart got the stamp of approval from Dr. Hirsch at your cardiology appointment.  He repeated what an amazing little boy you are and he couldn't be happier with how your heart is working.  He said your repair is excellent (thanks to Dr. Morales) and although we have to keep an eye on one of your valves your heart is much lower on the list of priorities that need attention in the near future.  Awesome news !

(You played contently for over an hour on the doctor's table)

We did have one pretty rough day this week.  On Wednesday you weren't yourself at all.  You were spitting up, had a little fever, were very restless and your heart rate was much higher than usual.  Your nurse Zion was here during the day and she was pretty worried about you.  Mommy was hoping with all her might that you would settle out but as the day went on things seemed to get worse and worse.  Twice mommy actually packed the car thinking we would be heading down to the hospital but you pulled through and we were able to stay home.  Mommy is so thankful for one of the nurse practitioners that works with Dr. Fletcher.  Her name is Wendy and she called every two hours to check on you and give mommy orders for what to do to keep you home.  We still aren't sure if you had one of the many stomach bugs going around or if your yuckiness was a result of withdrawling from your clonidine patch.  So for now you have the patch back on but we'll get rid of it before long.  Although Wednesday was pretty rough by the crack of dawn Thursday you were back to your old self and flashing smiles at everyone in the cardiology office.

All in all mommy and daddy couldn't be happier to have another successful week under our belt.  Yet again you have impressed your family, friends, doctors, nurses and therapists.  Connor you are one remarkable little fellow.  I know there are so many more details of the week that I wasn't able to pack into this note but as you can see our days are a little busy and despite my best intentions I haven't had time to write you more often.  Time to get some rest and gear up for another busy week of appointments, therapy, visitors, and most importantly play time.

Mommy and daddy love you Connor.

-Mommy