Sunday, November 29, 2009

Teefers and weight gaining

First of all Camden was a gem for his first Thanksgiving. The night over at Papa and Nana's place went just fine. He is such a good babe!! Was overwhelmed with different people at times, but once again did much better than I expected. :) For a minute there we thought he was interested in my plate during Thanksgiving dinner. Come to find out he worked up enough nerve to touch the food so he could throw it off my plate. Still hating the feel of the food. Any food, although he licked a graham cracker last night before getting angry at it. Ya never know...

We have teeth! Last week they started poking through on the bottom. One on the bottom is officially in and the one next to him is on its way.

The fortifying my breast milk is working, and maybe too well. He went from 16.13 to 17.3 in a week. Im going to weigh him tomorrow to see what he has gained this week. He is getting breast milk through the day, and I am giving half and half through the night. Im just going to do a slow wean through the winter months.

Hasn't needed any o2 since that last episode, and continues to do well off the vent. Tuesday will be 3 weeks off....I believe we are DONE!! Praise God....

Tuesday, November 24, 2009

Thanksgiving and busted g tubes =p

Ok, so I'm thinking that when I accidentally yanked the mic key feeding tube out last week I started a slow leak in the balloon because today his onsie was totally wet with milk. The balloon had busted and had fallen completely out. It wasnt out too long because I got it right back in, but it took a bit more effort. So I have it taped to his belly and I'll get a new one from the pharmacy tomorrow. All my back ups are his old size, so that stinks! At least it is in and didn't close up this time. I will avoid any ER trips if I can....

He hasnt needed 02 again. I am thinking the J bunn (machine that give his trach moisture so it doesnt get dried out ) wasn't giving off enough flow. I kept it off him the next night and he did fine, wo we have had the flow turned up.

We are heading to my parents for Thanksgiving and staying one night. This will be Camden's first time traveling over night. Well unless you count when our house flooded, but that was just across the street. ;) It should be fun and interesting. I feel so blessed that he is now well enough to travel. No worries about vents and oxygen. I have 2 little o2 tanks just in case, and we are good to go. Well, along with all the "bags" that a trach baby needs. I call him "just a plain ole trach baby" now. ;p Nice to see things slowly leaving....


Wednesday, November 18, 2009

Needing to gain weight

not me, Camden ;)

Went to see the nutritionist and surgeon yesterday.
Surgery was just a follow up and everything seems fine. Had an xray while there, which are always fun and consist of Camden having a major meltdown. I dont blame him. We wouldnt want to lay there naked either. We have to have another xray along with an echo in Feb, then will see surgeon again in March.

The nutrition was kind enough to squeeze me in yesterday. Camden is not gaining, and being off the vent burning even more calories is not helping. We are now adding formula to my breast milk. Plus I am having to supplement some, and we are extra formula to that. Will see how this goes. She didnt want to start pediasure since he isnt quite a year.

I have decided to cut back on my day nurses. This will start in December. I have been very blessed with my day nurses while I needed them, but it is time that I have a few days alone. I have been thinking about this for a few months now. I think the kids need this too. I am cutting out Tuesdays, Thursdays and Sundays, and went the vent leaves the house for good, the day nurses may be gone altogether. Night nursing on the other hand, I want forever.... ;)

Tuesday, November 17, 2009

not sure what happen with that last post....

but here it is from Nov 15. That was weird...
Camden has done great with the PMV. When we put it on the first time he had it on an hour before we took it off for nap time. He has tolerated it well with out any issues. Very exciting to hear him. He groans a lot. lol Then he'll just be quiet. He sure can whine and cry with it too and is realizing that mommy reacts to it. ;)
Continues to do well "vent less." Tonight is my first night without a nurse wince he has been off the vent, so I have been blessed to get some rest while he has been watched. =) Daddy and I will be taking shifts again.

I am thinking of slowly weaning him off breast milk with pediasure. I will pump through the winter, but I am getting so done. It is wearing on me and my body is making less and less with more pumping. He will be 10 months old soon, so I will start mixing some pediasure with the bmilk and have him on pediasure by 12 or 13 months. I pray he tolerates this.....
Well, this is the plan anyway =)

Thursday, November 12, 2009

PMV time :)

The ENT visit went good. Dr. says there is still some floppiness in the airways. We are trying the passy muir valve tomorrow and I am super excited. I just called the Camden's RT to tell her how anxious I am and she said she'd be there at 1:00 so I didnt have to wait all day. ;) she is great...
Dr M just said we just continue to go through slow steps ( i told him i am used to that) to work towards getting trach out and that Camden needs to grow more too. I keep in mind that it is flu season and that there wouldn't be any trach removal now anyhow.

So tomorrow is an exciting day and I hope Camden tolerates the PMV. I can't WAIT to hear my baby!!!!!

Camden went out to lunch today! I dont go in public ( besides drs ) in fear of germs, so this was huge LOL I had to go get my other kids from Nana and we met a a little family owned diner. As soon as I walked in a man started to cough and I wanted to run out but I believe he was choking on his drink. lol not funny, but it made me feel better. ;) Mom sanitized a table in the corner, and we used purell 1,000 times, but we had a nice time. my kids were over-the-top excited to see their baby bro.
It was interesting to see how people act when they see Camden. I had to suction him a few times and no one could see me doing anything because I had him turned around, but you could tell on their faces they were so curious. I know people arent trying to be mean, it is just they stare. And stare some more. Not just 'checking things out' staring, but 'staring in between taking bites' staring. I try to put myself in peoples' shoes that aren't familar with the situation, but it is difficult. It is what I know now, so it is hard to remember that there was a day that i wasnt familar with trachs and g tubes. ;p I do understand the curiosity, I just get emotional about it at times.... ;)

Feeding is slow going. I am slowly increasing his rate on his feeding pump, but he seems to be wretching more. It is not just food related either because he does it in the mornings over secretions. Reflux, food, secretions...poor thing has many reasons to be wretching and gagging. I have wanted to rush things so badly and the other day I was thinking about it and trying to realize that I need to be patient and be thankful that there is a way that he can get nutrition, even if it is through a tube that goes in his stomach. I will continue to work on oral feeds and slowly the rate will get faster and one day he will eat on his own.....

Speaking of his feeding tube, bad me accidentally yanked it out last night. It has fallen out before due to the water balloon inside is tummy leaking, but this time the balloon was still intact and I pulled it right out of his tummy when I was getting him out of his saucer. ouch! I felt soo bad although he didnt seem too upset about it. I quickly put it back in ( last time it fell out during nap and the hole closed and we hadto go to ER )while thinking how the ER was the last place I wanted to be last night. It went right in everything is fine.

Cant remember if I mentioned it, but he is doing great off the ventilator with no issues. I have been giving him humidification here and there with his J Bunn but he doesn't seem to require too much. I think the weather change may change that but we'll figure it out as we go.

Tuesday, November 10, 2009

Bye Bye Vent

We are so thankful that we had you for the last 9 months, and yes, you were a huge part of the lifesaving, but you are not needed anymore. ;)

I am overjoyed about this. Thankfully Dr H agreed to take Camden off the vent. All day, all night, all the time. He has been on during nights only, and on ridiculously low settings, but with this surgery setting us back it has felt like fooooorever. I just am over the long weaning process, and was glad she was considerate to my opinion. I think back to a day and remember thinking we'd never get to this point and here we are. No words can explain.....
So tonight is his first night off. Eek! Im excited, but I may be awake a lot checking in on the nurse. ;) I know he will do fine.....

Tomorrow the ENT. This is an exciting week. :)

Praise God from whom all blessings flow.

Monday, November 9, 2009

Doing well :)

Camden is doing great. Everything has healed nicely without problems. :)

We just got back from the eye doctor and he says the eye looks good besides a little astigmatism so he wants to see him in a year.

Today I reintroduced cereal since before surgery and after the first bit he was over it. That was all I could get down him without him melting down on me and as soon as I stopped he was happy. ;p The cool thing is that he was touching the cereal on the spoon! And kept touching it! He also licked a cookie the other day. He eventually gagged over licking that cookie, but these are tiny steps forward.....

Now that his tummy should be feeling better I need to call the OT and get him back on his therapy. He is no where near crawling or standing so we need to start working with him now that this set back is over.

Tomorrow is the pulminologist. Hopefully we will be completely weaning off the vent. :) Then Wednesday we see the ENT and hopefully will be getting a passy muir valve. Hopefully he will tolerate it. Have a feeling he will be fine. ;) Im so excited!

Thursday, November 5, 2009

Home sweet home

This is him the day we were admitted. He completely freaked with all the people...meltdown after meltdown that first day! Him and I both were broke out with hives... :s He is happy in this pic because they were all out of the room! ;0)

Lots to say for the week that has gone by so I'll try to skip all the details so this isnt forever long...

We were discharged Tuesday and he is doing well.

We were admitted to the hospital Thursday afternoon and the cleaned him out with the Go Lightly ( nothing light about it) that night. He actually did very ok with it, of course nothing fun about pooing all through the night, but he tolerated it well.

Surgery was last Friday and was a success. Not only was part of the colon in his chest, but also his pancreas. Geesh. His diaphragm was patched again with gortex. But all went well and precious Dr W seemed pleased. His Nissan had also started to unravel so she went ahead and dealt with that too. He was circumcised ( which I was feeling guilty for doing to him afterward! ) and then Dr P was able to pop the clogged tear duct without needing a stint. As sad as it is, it took me a few days to get used to Camden without goo in his eye.

Had a rough night surgery night and then the next day too.( to be expected, of course) The cool thing was he was off the vent right after surgery and just on a little o2. His trach site was sore from the OR and he had some bleeding from it. Had some bad gas episodes and Im know he was in pain. He would scream when we changed his diaper. It killed me to watch him like this with that look like, " why are you letting them do this, mom??" I think the worst for me was when they wheeled him off for surgery. Third day post op he was a different baby and wanted to sit up. He didn't like me keeping him down either. He had lots of visitors from the NICU. It was great to see them.
He is such a strong boy. He is doing good now but has been really emotional. Yesterday I basically had him on my hip all day. He is not trusting anyone right now probably in fear of getting stuck! He even cried for his nurse that he loves at first, but warmed up quickly to her.

I can already see the difference in his feeds and he is handling then better. We will start slowly working on faster feeds now. I haven't given him any cereal or a bottle because I haven't wanted him to gag and hurt his tummy, but I need to get started soon.

Thanking the Lord this hurdle is over.... :)

My camera and computers are having issues so everything is phone pics!

headed to surgery....had to wear the dreaded yellow gown because he is forever labeled ORSA! ;)

right after surgery ;(

and his booboo. She just went in through is old scar, of course.

I just realized this pic is up side down....hmm

thank you for all the prayers......God is good, all the time...