confusing symptoms and rambling thoughts/worries

So.... Today has been somewhat confusing with Yale for me. I'm getting more and more confused with him lately... he's blue. which is never a good sign....but I can't tell if he is "more" blue, or if I'm just worrying. *sigh* Then he was weighted today and he is gaining about an ounce a day... which is concerning...but is it because I've given in to fortifying his formula and he isn't wasting energy bottling so much....now I don't pressure him to bottle... if he doesn't want to drink...I put it in his tube. The most concerning thing that happened was that as he was drinking his last bottle...I picked him up and he was sweaty....but he just woke up and he had a polar fleece blanket on him...and the heat is on... GRR....
So really there are no answers and I just wish Liz was around so that I could just have her evaluate him and tell me one way or the other. I mean... I know he's not doing the greatest...heart-wise... so what signs should I really pay attention to? He was blue when they discharged him from Sick Kids... he wasn't eating the best when they discharged him...their concerns we whether he was gaining or not...
All I want to know is what are his sats? his breathing is still anywhere from 29-50 given his activity level...or if he is asleep.... his mood is better than it was yesterday...but he's not like he was when I was home... Man I just wish I could get a break from the constant worry....I wish my mind could be put at ease.... and I guess the answer is easy...take him into emerge... but I really don't want to sit there for hours if he is just fine... I want the quick and easy sat probe and quick listen I could get at peads cardio... uh...why oh why did Dr Buffo not sign for me to get a home O2 monitor? Then I'd have my answer right there... Huh... I think I am going to call tomorrow to Sick Kids and see about getting one :)
LOL...

A letter I wrote to a friend who has a "heart baby" who said I could vent...

Hey.... all my appointments have been anything but cardio....but still all that stressed me out is cardio involved. Yale's feeding issues stem from his decreased function. While we were in hospital he had a hard time meeting TFI requirements. although they never kept him at a level of fortification for more that 12 hours. So I fought the NG tube while there because I know he can take in enough fluid at regular strength. however after being home, although he was taking in enough, he wasn't gaining...not losing either...but not gaining enough. So we concentrated half way up to 22... and well he wasn't making his fluid requirments and I started to get worried and stressed because I felt like all day long, all I was doing was offering him a bottle and tracking everything he took in. I made the decision to place his NG tube. and felt guilty about it because he was MAD at me... wow. and I was guilty and stupidly felt like it was a step backwards and that I somehow had failed him. I mean it was only in July when he was still NG fed...I don't know how I got so used to living without it. Anyhoo... so now its in, and I'll be topping up his feeds and he can have a stronger fortification. I resigned to the fact that if god forbid this new med doesn't help and his funtion doesn't get better and we have to go to transplant, I want him chubby. he is just skin and bones right now and barely gaining a thing...his growth curve hit a bump. So now I am now trying to be pro active... instead of reactive. On the good side of things he has stopped protesting tummytime.... he shows interest in getting stronger and I can tell he wants to move,,.. but can't. So the extra calories can help to facilitate that. Enough of my being selfish and wanting him to work so hard so that he seems that much more "normal". I think the part that is bothering me the most is that his two friends that are2 and 3 weeks younger... are already standing and scooting around furniture. I mean I "Know" that he is a heart kiddo and that mean nothing is going to come easy for him. but i kind of feel like i could have done more, or is there something I did?.... terrible how its all just hitting me now. i think i was deluding myself into thinking that post glenn he'd be more normal and stronger and healthier... and that he'd be all normalness until it was time for the fontan.... Wow am I ever clueless... and its hitting me smack dab in the face that he will NEVER be normal, and he will never be heart healthy, and I think now I am really mourning that healthy baby I never go to have. I just wish, just once it could be a little easier... and then i think that I am super selfish because there are loads of kids out there that are having a harder time than us... at least we're home, and relatively stable. I think in this lull of semi stability I lost my coping mechanism, and now i'm really seeing it... and feeling it.... and dealing with it. *shrug*is this all normal to go through? and why am I looking to anyone else to show me what normal is? Anyhoo.... thats what I am dealing with lately...and it sucks.Hugs to you! Tanna...
So thats what I've been dealing with lately. Yale has his Ng tube again...and how wierd is it that I'm upset because now I have to take it out if I want to get "nice" holiday pictures of him... I just wish I knew when I'd become okay with all of this.... how come I never got a choice. and why is seeming so much more difficult now than it was back then?

Huh??

What the? Wow am I ever bad at keeping up to date on this blog...Sheesh... We'll we came home Tuesday Night from sick kids. I have never felt more evicted than I did this time. It was like... rounds, shower, you have to leave we need the room...LOL... seriously... thats what it felt like. We were kicked out!


Anyhoo. Yale came home because there is nothing they can do for him at Sick Kids about his heart funtion. They found no anatomical reason for his decrease in function so they started him on Carvetilol. Carvetilol will take a long time to show any improvement if any, and so there was no reason to keep us in hospital. The only reason we were there so long was because Yale's feeding had definitely decreased... So while in hospital they uped his lasix to three times a day instead of one. As some may know...when the heart isn't working so well, its hard to get rid of fluid... thats why we don't like Mr. Yale to be puffy or have crackly sounds in his lungs (which he had) so now that he is all dried out like a potato chip, his breathing isn't as laboured and he is feeding relatively well. They've set a slightly lower TFI (total fluid intake) for him so that we won't have to monitor his as closely... just if I see signs of dehydration to lay off the lasix.


So now our only problems are dealing with firm stools. (a side effect of load of lasix and increased calorie intake)Yale has been infamous at having a hard time "going". tonight was the worst I think I've ever seen and even saw traces of blood in his stool...(so off to the paediatrician) Yale is on a couple of blood thinners so, as blood in stool after that sort or straining isn't to terrible, it can post quite a problem for this little man. So I'll be paying a close eye and waiting until Tuesday (thanksgiving holiday). Hopefully there isn't much more, or we'll be making a trip to emerge.... So much for those "side effects" of carvedilol. One being loose stools, we had hoped that would even things out...but not so true.


I've also taken it upon myself to go get some flax seed oil to add to Yale's bottles to help keep his stools softer. Yale has been standing still on his growth curve and at sometimes losing weight. That is why we're currently uping his caloric intake (fortifying his formula) and it cause his stools to become even more firm. So flax seed oil....and flax meal to mix into his solids. Yale isn't big on the fruits and veggies but is all about his cereals...so hopefully I can slip some more fibre into his intake... Poor little guy.. I didn't even feel this sorry for him after his surgeries.... he at least had pain medications then.... :(


Anyhoo... if any of you have any more tips for making his bowel movements easier PLEASE offer them.... poor little man... makes me wish I kept pumping breast milk for this long.... No one (especially Yale) should have to go through that.
So on a side note....here are some pics to show the dude! :)


Yale trying on his halloween costume.

Yale showing his two bottom teeth coming in

Yale with his fave... Nurse Natalie

Yale doing tricks... anything to get out of eating!

Still at Sick Kids

Hello everyone....Yale's Grandma here. Tanna and Yale are still at Sick Kids eventho the doctors didn't find anything in the tests they did on Yale. So they are changing his meds. However Yale has decided not to eat. Tanna thinks his teeth are the problem but they must stay till he increased his feeding more. They don't want him to get gehydrated and get more sick so there they stay till Yale decides he wants to go home. Tanna thinks that may be next weekend.
Please keep your prayers and good vibes coming that they get home soon.

Yale's Grandma

Sick Kids tomorrow

So we're going tomorrow to Sick Kids. Yale is going to be admitted onto the ward. Dr Golding called me this morning and expalined all the tests they want to do. Well the ones that are already scheduled. He says its more than likely that more will be needed to cover all the bases. As of right now Yale is shceduled to have a sedated echo and CT scan. Dr Golding isn't sure but has a hunch there may be an intervetion required that will mean a cath. He basically explained all the sames things that Liz did yesterday. Here's hoping this is fixable... and dare I say it,.. rather quickly.... although not too quickly as the jack hammers are finally working at the last side of my building repairing the balconies. YAY... so even though this trip is unexpected and unwelcome... as least we can be out of all the racket for a while and if I'm lucky they;ll be done by the time we come home :) Sweet! LOL... always a silver lining to every dark cloud, you just have to look for it. So I'll hopefully post while in the hospital, but it might be intermittant seeing as I'll be on the ward, and its kinda like jail there :) but trust me...when I know something you all will know something!
lets keep praying and sending the most positive vibes out everywhere :)

So we're heading to Sick Kids this week

So I got the call from Liz today after she spoke with Sick Kids. The team there agrees that Yale's function has decreased again, and so they want us to come this week (I'll be getting a call tomorrow with the specifics). Liz says they plan to do an MRI to see if there are any obstructions or causes for the decreased function that they can intervene. If that is not the case than there will be a med change. Hopefully the med change will help because if it doesn't, it looks like we will be heading towards a transplant.
Please everyone we need the prayers again.
Oh and to update on little Abby Knight, the baby I asked for prayers for, she is doing great. She's had a Gtube placed and is expected to go home sometime this week.... YAY! I am so happy for her. Her parents and family are ecstatic! Even though she will soon be back for her next surgery, they are glad she made it through this rough road! Sick Kids do it again!!!

So the freedom is gone :(

So cardiology visit today didn't go so well :( I'd go into all the details and whatnot, but really.... I don't feel like it. The gist of the problem is Yale's leaky valve. Its worse and his right ventricle has enlarged some more. So Yale is being presented on Monday when Dr Golding will be back at Sick Kids. Then we'll know if we have to go for a visit. (most likely) Liz says its most likely they will make a medicine change that can be started here in London. Only we'll have to make weekly visit until it is at a theraputic level...which Liz said could take quite a few weeks. There are other things that could be done.... but we don't want to think about surgery or cath lab or anything...
I just hope this is the course that everyone agrees on and it gets Yale's heart stronger. My biggest fear is it not getting better and them no going through with the Fontan. Luckily the fontan is quite a ways off, but still... Immediately when I got the news I went straight into the what ifs. I didn't ask anything yet because I just don't want to know the worst case scenerio...(but of course I know). Once again I have to put faith in the doctors..they know what they are doing... Its just so disheartening. He seems to be doing so well. I knew right away today looking at his xray that his heart was enlarged. and if I can tell...thats a bad thing :(

On the other hand I am very glad we got our visit home in there while we did. Yale had a great time and we had lots of visits...and lots of normalcy...which is far and few between.




Here are a few pictures of our visit :)
Yale having tea with his Great Aunts Nancy and Louise

A four generations picture!!

Hanging with Great Grandma Hartzke

Relaxing outside on the patio...enjoying the fresh air:)