We have had (or are in the middle of) a month of medical crazyness with the boys.
Sam had his tubes surgery last weekend in Atlanta. We did preop at Egleston and then went to the Atlanta Aquarium. Sam had a great time, although by the time we had been there an hour or so he was spent. We stayed the night at a facility run by Georgia Power. It is a house for employees of GA Power who have to stay in Atlanta for medical procedures - like Ronald McDonald House. We woke up bright and early the next day for Sam's tubes. He was NOT a fan of putting on a hospital ID bracelet, and NOT a fan of putting on the gown. But he was flying high after getting some Versed. The surgery went fine, and Sam was brought back to us flying higher than when he left. He was loopy, and agitated. He puked a few times, which I thought was a bad omen for the rest of the day. We loaded him in the car carefully (he still needed total assistance to keep his balance), but sleeping on the ride home and then taking a nap when he got home helped tremendously. He apparently didn't have that bad of a time (or at least he has already totally forgotten) because he asked to go BACK to the doctor the next day!
And back he went. We had our GI appointment in Macon this past Tuesday. The GI feels that Sam's vomiting is highly unusual, and the fact that he throws up OLD food is highly unusual. We are being sent for an Upper GI Series next week (Barium milk-shake and xrays) to look for any obvious anomalies. If that isn't satisfactory, we will be going for a sedated scope...sigh. Anything with sedation is a risk with Sam, so I'm sure it will be in Atlanta if we have to do it.
In the mean time, lil' Luke came down with a rough cold. Then he started drooling a ton as he is already getting some teeth moving through his gums. Combined, they caused one cranky baby. He got sent home from daycare on Monday due to loose stools (surely the snot and drool he's been swallowing). So Luke got a trip to the Pediatrician for himself on Tuesday - of course all is fine. He went back to daycare and has been fine ever since.
BUT he will be going to the Urologist tomorrow to see what (if anything) needs to be done for his hypospadias. It will be just me and Luke headed to Atlanta for that, so I'm planning a little trip to Ikea for us both...you know, to de-stress from all these medical things!
Our last and biggest medical event is Sam's heart cath, which will be October 14. It can't come soon enough. Sam is certainly getting out of breath quicker, although he doesn't seem to care or notice.
Thursday, September 29, 2011
Tuesday, September 20, 2011
Baptism and Appointments List
We headed to Mobile for Luke's Baptism this past Friday. We got to go to a Mcgill (our high school) football game and see my brother-in-law in the marching band. We got to watch our oldest nephew's soccer game, shop, and went to TWO frozen yogurt bars in one day. Luke's Baptism was sweet. One of our favorite priests, who has known Chris and I since seventh grade, performed the sacrament. Luke, who is so big he was literally busting the snaps on his little outfit, had no problem with the water being poured over his lil' noggin! We had a family gathering afterward at Wentzl's, who set aside a whole room just for us. It was really lovely. A few pics below. John (my brother) is the Godfather and Lydia (Chris's sister) is the Godmother.
Up next: about 300 doctor appointments. It all starts Thursday with preop for Sam's tubes, then tubes on Friday (all in Atlanta at Egleston). Next week: GI for Sam in Macon, Urology for Luke in Atlanta. Week after: Pediatrician check up for Luke. Sometime (still pending scheduling) in the next two weeks: heart cath for Sam in Atlanta.
Two prayer requests: Say a prayer of thanksgiving and of health for Chris's cousin Josh and his wife Kimberly, who are 11 weeks into a miracle pregnancy! Say a prayer of peace for two heart families we know who have tragically said goodbye to their babies this week.
~Kathy
Two prayer requests: Say a prayer of thanksgiving and of health for Chris's cousin Josh and his wife Kimberly, who are 11 weeks into a miracle pregnancy! Say a prayer of peace for two heart families we know who have tragically said goodbye to their babies this week.
~Kathy
Thursday, September 15, 2011
Sad Day at the Cardiologist
Well, I guess we were bound to get here, one way or the other. Just was hoping to hold off longer. Our Cardiologist wants to do a heart cath in the next few weeks.
We (Sam and I) went for Sam's regular 3 month Cardio visit today. Chris is out of town and I was able to drop Luke at daycare before the visit. Sam was SO good. I can't even emphasize that enough. He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach. He weights 36lbs and is 41.5 inches tall....whoa! Where did my baby go!
Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath. He really can't play too long before he gets winded. This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded. Now, if you know Sam, you know he vomits A L L THE T I M E. He's a gagger...it's just what he does. But the vomiting just when winded is a fairly new development. Cardio is going to send a referral to GI, just to check it all out. He doesn't THINK it's heart related, which is good. But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.
After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung). It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before. He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right. He thinks the lop-sidedness might be causing the out of breath moments. He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint). While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming. More of those have formed since last time too, which might contribute to shortness of breath. He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more. Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated. I didn't think we would make it that far anyway, but hoped we would making a little further than this. He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer. We'll just have to see what they find and how much the coiling and ballooning help.
He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery) kids on Asprin and Lisinopril to help heart function. He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation. He said all 3 will be life long. I hate that. But whatever it takes, right?
Sam was just officially signed up for a program at CHOA-Sibley called Beads of Courage. It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience. This is a new program at CHOA. But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally! My job will be to string them and start a journal for him for each bead on the string from birth to the present. I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns. He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is. When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!
It may have been a blow, but we are prepared. I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery. It will be a rough few months for Sam, unfortunately! He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away! Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!!
On a whole different note, little Luke is growing like a weed! He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits! He has the BEST disposition, and hardly cries. He eats like every meal is his last, and sleeps like a champ. He is starting to giggle, and loves to talk. If he keeps being this good, he might earn himself a sister some day! Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias. I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta! I would LOVE to snag a pediatric therapy job there!
Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip. We will then be headed to Mobile for Luke's baptism. I don't think the fun ever ends in our house!
~Kathy
We (Sam and I) went for Sam's regular 3 month Cardio visit today. Chris is out of town and I was able to drop Luke at daycare before the visit. Sam was SO good. I can't even emphasize that enough. He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach. He weights 36lbs and is 41.5 inches tall....whoa! Where did my baby go!
Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath. He really can't play too long before he gets winded. This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded. Now, if you know Sam, you know he vomits A L L THE T I M E. He's a gagger...it's just what he does. But the vomiting just when winded is a fairly new development. Cardio is going to send a referral to GI, just to check it all out. He doesn't THINK it's heart related, which is good. But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.
After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung). It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before. He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right. He thinks the lop-sidedness might be causing the out of breath moments. He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint). While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming. More of those have formed since last time too, which might contribute to shortness of breath. He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more. Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated. I didn't think we would make it that far anyway, but hoped we would making a little further than this. He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer. We'll just have to see what they find and how much the coiling and ballooning help.
He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery) kids on Asprin and Lisinopril to help heart function. He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation. He said all 3 will be life long. I hate that. But whatever it takes, right?
Sam was just officially signed up for a program at CHOA-Sibley called Beads of Courage. It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience. This is a new program at CHOA. But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally! My job will be to string them and start a journal for him for each bead on the string from birth to the present. I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns. He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is. When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!
It may have been a blow, but we are prepared. I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery. It will be a rough few months for Sam, unfortunately! He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away! Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!!
On a whole different note, little Luke is growing like a weed! He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits! He has the BEST disposition, and hardly cries. He eats like every meal is his last, and sleeps like a champ. He is starting to giggle, and loves to talk. If he keeps being this good, he might earn himself a sister some day! Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias. I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta! I would LOVE to snag a pediatric therapy job there!
Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip. We will then be headed to Mobile for Luke's baptism. I don't think the fun ever ends in our house!
~Kathy
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