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
1 comment:
Awesome updates! Good job Connor!
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