the allergic reaction...

Miles' cath

This is a little video I took of Miles when he was having his allergic reaction. It came in handy when the docs came by after he started to get back to normal. He was SO asleep here! Like a rag doll!

The video didn't work so here is a link to all the pics i took while we were in the hospital, the video is in there.

home!

Sorry it took so long to update...We are home! Miles was released at about 3pm. The echo today showed some residual leakage from right to left so he is re-oxygenating some blood - which doesn't explain the pulse ox being low. His pulse ox leveled out at 94% and since we got the echo today we don't have to go back to the cardiologist for 6 months! cool! If we weren't going to be able to have the echo we would have had to go back in a month. I think the lower pulse ox is from the little collapse of his lung which will be fixed with him just getting up and around. Anyway, he is doing just great! He didn't want the IVs out (he wanted to leave them in forever) and we came home with the leads stickers still on - he wants those on forever too. I did get to bring home some of the adhesive remover so it won't hurt to take them off but he doesn't believe me. His face is a bit puffy again but not bad.

Anyway, I am exhausted! I can't wait to go to sleep! Thanks for all the prayers!

OH - and Thank you, thank you, thank you Sandra and Deanna for watching Riley and letting him stay and play with your Connor's :) He had so much fun and I cannot begin to tell you how very much it is appreciated!!!!!! You guys are AWESOME!

A little kink in the plans...

Okay so Mr. Can't Ever Do Anything by the Book is being admitted this evening for observation. He was doing great (and mostly still is) but at around 5:30 or so his face swelled up, he had jugular distension, and was very flushed. He was also very, very asleep when just shortly before he was eating and talking. The chest x-ray shows a little collapse of the upper lobe of his right lung - AHHH so this is why his sats are low! They are fairly certain he has had an allergic reaction to something but we don't know what and don't want to risk him having the reaction again once we get home so we will stay. 15 Tower is full so we will stay in the cath lab recovery room overnight. His is not a happy boy but Bammy and Bampa brought toys so he is happy with that.

Just before I came to update he was very insistent that he have some chocolate! Very cute, so I gave him a little bit - hope the docs don't mind.

We have seen so many kids come in, recover, and go home...but, this is his usual MO. After an echo in the morning we should be good to go!

Still doing great!

Miles is still doing great. He has done a few things to keep us on our toes but overall done really well. he puked after the first bit of water, had a fever of 101.2 and just not too long ago his respiratory rate was at 11 (the stinker!). He has had some tylenol and his heart rate has come back down to normalish so I think he is over the fever. Oh, and his breathing is back up to normal too. He really wants to stay asleep but we will start putting more effort into waking him up so we can go home. his pulse ox has been hovering between 91 and 93% which is lower than I thought it would be but he looks great so I am not worried about it.

I am going to get back to my little man...love to all...

All Done!!!

Superb was the word used by the cardiologist! He said everything went very well! The hole turned out to be 8mm (I thought it was 5mm), but it is closed now :) He said his conduit looked great! A gradient of 15mm (someone please tell me just what that means, lol!). When he closed the hole with the balloon to test it there was NO change in his pressures! Right now he is in recovery and being a bit of a pill. His pulse ox was 91 when we got in there but should go up when he wakes up all the way - that is lower than his norm before today but we are hoping for 100%. He fussed with the oxygen so they took it off. He is pretty ed but will be better when he wakes up (hopefully). At least 6hrs in recovery and if all goes well then they will send us home. It depends on whether or not he starts puking or anything like that. I took his picture but can't upload from the library at the hospital so those will have to wait. Okay, back to my boy...love to all!

Update :)

Sean has been updating from his phone - I forgot the library has computers! Okay, so everything is going well. We got an update at about 10:00 ish. They were still doing the hemodynamics portion of the cath (measuring all the pressures and checking out the flow and stuff) and they were just about to get started on the hole closure. I have no clue how much longer but he is doing well. I probably won't update until they are all done.

heart cath :: update

quick update from the nurse ... the ASD is in acceptable location and they have started the cath

heart cath :: update

this morning went well miles woke up early about 4am, of course, and with plenty of "i want water". the heavens opened up just as we were headed to the car, but miles stayed dry. once we got here everything went super smooth and miles did great! ms bell his teacher is here and our minister was here to see and pray for him just before miles was wheeled back totaly peaceful from the pre-op drugs

dr. justino will take a few preliminary pics to determine if the ASD is in a good location for the device, if not then it maybe a quick visit today. but no worries since miles stats are not anything critical right now... but keep the prayers coming for our precious boy

Cath update...

Just got the call, Miles will be first case on Thursday so we will be there bright and early at 6am. He has stayed healthy all week which is awesome! She did mention this time the possiblilty of staying over night which actually makes me feel more comfortable than sending him home afterward. Fingers crossed all will go well (and all will go as planned).

I will probably update again later as he will see the Neurologist this afternoon.

Rescheduled...

Miles' cath has been rescheduled to next Thursday the 24th. There is a kiddo that needs a cath more urgently than Miles so we got moved. I am okay with that. We have been the one that bumped people off of the schedule so I completely understand where the other family is at (hopefully it isn't anyone that I know).

The next thing is to keep Miles healthy until next Thursday...He has Neurology on Tuesday (at the same time that I will be getting a root canal!) and OT on Wednesday...busy week.

Oh, My Dad will be having a bronchoscopy/biopsy on Tuesday so think good thoughts for him!

Love to all,

Becky

Cute Miles stuff

Two things Miles said today that were cool :)

We were talking about getting haircuts for the boys and he said "Oh, I love haircuts!"

We went out for ice cream instead. On the way home he was upset that we wouldn't be watching a movie. He said "I like movies cause if somebody has to go potty we can just pause it. Or if I have to go potty, or anybody has to go potty, we could pause it. And I love to pause it."

He is so cute :)

update...let's see...

We had the evaluation for PPCD and he definitely qualifies because of health stuff but they said he is probably too smart. I don't think they will hold that against him - at least I hope not.

The heart cath will be Friday, July 18th. I am nervous, but I think that is normal (right? please say yes :) He is doing really well health wise. He has a bit of a cough so we have been doing breathing treatments to keep him healthy. For the next three weeks we gotta keep him healthy. I will just die if he gets sick and can't have the cath after all this waiting and build up.

Riley is doing very well. He is really enjoying his summer at the YMCA - except the swimming part. He has not enjoyed that at all. He is a bit scared of the water (takes after his mommy - yes, I am 32 and I cannot swim). Sean has been taking both boys swimming and they have been enjoying it - at least I think so - I have not been swimming all summer.

I hope everyone is having a great summer!