These are two of my favorite pictures! Both taken by Amber Weber
Tuesday, October 22, 2013
Everyday pictures
oh you know just riding in the tractor with daddy
he looooves his bath time or "spa night" as we call it
So this was his "tummy time toy" the physical therapist at his UW development check-up said to encourage tummy time by giving him a special toy that he ONLY got when he was on his tummy- TOTALLY worked, now he's always on his tummy
crabbing out at Cherry Point one Sunday
he loves his footsies
woke up to this the other morning... notice the oxygen off his face
talking to his toys
Sweet potatoes are by far his favorite
playing xbox with dad
such a cutie
game day!
trip to the pumpkin patch
waiting for Darren to get back to the load stand so we could hop in and go for ride
He looooved riding daddy
teaching him early!
watching veggie tales
playing in the Children's clinic waiting room
At the Children's Clinic in Everett- he loved the paper on the table- he kept ripping pieces off and crunching it.
Brants 6 month pics & family pics
yes... that is my husband.... what a DORK!
yeager had to get in there
with great grandma joyce
love my little munchkin!
photo credit: Amber Weber
Monday, October 21, 2013
Children's Clinic Appointment
Took Brant to the Children's Clinic in the Pavilion for Women & Children at Providence in Everett today. The appointment went pretty good- we believe that he has a virus that has caused his de-sats and lower than usual numbers. There is nothing they can do for him but let it run its course. We will be leaving him on oxygen until he gets over the virus and then will re-start weaning him off throughout the day and in a month or two re-visit the 2 night oximetry test.
With that being said the pulmonologist did say that due to the time of year and flu season, if we were to get him off oxygen in the next month or two we should expect to have to put him back on at some point because of any illness that he may get. She also said that if he keeps getting little viruses like this or can't seem to kick this in the adequate amount of time they may want to keep him on oxygen until Spring and when we are out of flu season.
We will go down to Seattle to visit his regular pulmonologist November 21 for a check-up. The original plan was to have an ECHO done and a few other tests but those have been cancelled due to him not being off oxygen. One worry they were thinking about with him is possible Pulmonary Hypertension and that being the reason for the de-sats but after today she doesn't think that is it. Plus she said due to the ECHO he previously had coming back totally normal, its not common for a child to develop Pulmonary Hypertension if they had no signs of it previously. She said she could schedule one if we wanted to for peace of mind but was clear that she did not think that was going on.
I really hope that we don't have to keep him on oxygen until spring. He gets so sick of the tubes in his nose and pulls them out already. He's only going to get more active and will probably be crawling in the next couple months so that is going to be really hard. But I just need to keep saying like I've said throughout this whole journey, You gotta do what you gotta do, we can handle it.
With that being said the pulmonologist did say that due to the time of year and flu season, if we were to get him off oxygen in the next month or two we should expect to have to put him back on at some point because of any illness that he may get. She also said that if he keeps getting little viruses like this or can't seem to kick this in the adequate amount of time they may want to keep him on oxygen until Spring and when we are out of flu season.
We will go down to Seattle to visit his regular pulmonologist November 21 for a check-up. The original plan was to have an ECHO done and a few other tests but those have been cancelled due to him not being off oxygen. One worry they were thinking about with him is possible Pulmonary Hypertension and that being the reason for the de-sats but after today she doesn't think that is it. Plus she said due to the ECHO he previously had coming back totally normal, its not common for a child to develop Pulmonary Hypertension if they had no signs of it previously. She said she could schedule one if we wanted to for peace of mind but was clear that she did not think that was going on.
I really hope that we don't have to keep him on oxygen until spring. He gets so sick of the tubes in his nose and pulls them out already. He's only going to get more active and will probably be crawling in the next couple months so that is going to be really hard. But I just need to keep saying like I've said throughout this whole journey, You gotta do what you gotta do, we can handle it.
Friday, October 18, 2013
**Quick update on pookers**
Pookers (as we like to call him) isn't doing all that great. You can tell he's just not himself. His pulmonologist didn't know what to say with how he's been the last few days so she is having a fellow Children's doctor in the Everett clinic see him on Monday. So Monday my mom and I will be heading down to the Children's clinic in Everett either at or near Providence so they can take a look and possibly run a few tests... will post as soon as we know something. Maybe tomorrow I'll find a minute to upload and go through all my pictures- I'm really behind in that department!
Wednesday, October 16, 2013
Update... feeling a little defeated
One of these days I'll get around to posting a ton of pictures, but they are all still on my camera. So for now I will just let you know what's been going on with Brant.
Monday night (Oct. 14) we attempted to do his 2 night oximetry test. This is where he would sleep off of oxygen for 2 nights and his monitor would save the information & send it to his doctor down at children's and we would get a yes or no answer to getting rid of the oxygen completely. Well it lasted all of 20 minutes. His sats were not good. When I finally got the monitor on in a good spot he was at 94 (they don't want him below 92) and then slowly but surely it dropped down to 89 and he wouldn't come back up from that so I put him on oxygen and called the on-call pulmonary doctor and she said to put him on oxygen for the night and call in the morning to talk to his regular doctor. We did that and she said to leave him on oxygen for another month at night and we'll try the oximetry test again then. Fine. Okay. It's just at night, we can handle that. But a little sad because I was fully expecting to be done with this this week because of how well he has been doing...
And then today. I decided to hook him up to the monitor when he took his afternoon nap at about 1:30. It was a little low and then it got lower... and then it dropped. He came back up right away but I put him on oxygen. I'm really nervous now. I didn't have him on the monitor too much when we were weaning him from eating and nap time because it was SO hard to keep it on and have it not go off all the time because it couldn't read anything. He was always in the range for his sats never dropping below 94. I'm hoping that maybe he is just getting a cold and thats what is causing the low sat. levels. But in the back of my mind I'm thinking crap, was he sating low this whole time at nap time??
I'm going to attempt to keep him on the monitor the rest of today and see how it goes.
So anyway it'll be at least another month on oxygen. Yesterday marked him being home for 6 months! It's a little sad to see that too because the NICU staff all thought he would need oxygen for maybe another month, if that, and here were are six months later still dealing with it.
We go down to Children's November 21 next. They cancelled his ECHO because he isn't off oxygen yet. Though I wish they would still do it to see if anything is going on but they want to wait...
Monday night (Oct. 14) we attempted to do his 2 night oximetry test. This is where he would sleep off of oxygen for 2 nights and his monitor would save the information & send it to his doctor down at children's and we would get a yes or no answer to getting rid of the oxygen completely. Well it lasted all of 20 minutes. His sats were not good. When I finally got the monitor on in a good spot he was at 94 (they don't want him below 92) and then slowly but surely it dropped down to 89 and he wouldn't come back up from that so I put him on oxygen and called the on-call pulmonary doctor and she said to put him on oxygen for the night and call in the morning to talk to his regular doctor. We did that and she said to leave him on oxygen for another month at night and we'll try the oximetry test again then. Fine. Okay. It's just at night, we can handle that. But a little sad because I was fully expecting to be done with this this week because of how well he has been doing...
And then today. I decided to hook him up to the monitor when he took his afternoon nap at about 1:30. It was a little low and then it got lower... and then it dropped. He came back up right away but I put him on oxygen. I'm really nervous now. I didn't have him on the monitor too much when we were weaning him from eating and nap time because it was SO hard to keep it on and have it not go off all the time because it couldn't read anything. He was always in the range for his sats never dropping below 94. I'm hoping that maybe he is just getting a cold and thats what is causing the low sat. levels. But in the back of my mind I'm thinking crap, was he sating low this whole time at nap time??
I'm going to attempt to keep him on the monitor the rest of today and see how it goes.
So anyway it'll be at least another month on oxygen. Yesterday marked him being home for 6 months! It's a little sad to see that too because the NICU staff all thought he would need oxygen for maybe another month, if that, and here were are six months later still dealing with it.
We go down to Children's November 21 next. They cancelled his ECHO because he isn't off oxygen yet. Though I wish they would still do it to see if anything is going on but they want to wait...
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