June is .....gone

Been a while since my last post, but it has been busy. I have actually had better night nursing so haven't found the time to be on the computer. The night nurse called in last night, so here I am.
We are in the process of cleaning out this house so Marcus can do the floors and some other things.

Camden has had a bit of a rough week, but keeps on smiling. =)
He has been retching and spitting up after some of his day feeds. Back to that again, so not sure if his Nissen is unraveling or what.
Saturday his balloon in his Mic key ( feeding tube ) deflated and fell out without us seeing it. The nurse tried to get it in and completely closed. I dread dealing with that, so I was glad she was here to try. I can handle his other issues, but that thing gives me the willies. We took him to the ER and they couldn't get it back in either, (sigh) so they have a temporary one in until I can get in to the surgeon today. Today we are also supposed to move over to the condo and have the oxygen tanks transferred over there too. I am thinking I need a few extra hours added to the day.
He did go to see the surgeon last week and everything looked good. She didn't want us back for another three months, but we are going to have to squeeze in a visit today. I can't wait to get his normal feeding tube back in.
I also noticed a funny smell around his trach. ( yuck ) They cultured him at his last pulm app. and found that he had some "staff aureus". He isn't sick from it so they are leaving it up to him to fight it off and he has been fine and symptom free.
We also went to the GI and she increased his feeds.
He now gets 120 mls three times daily, but we are supposed to be working up to 130. I am nervous to continue to increase with his gagging returning. He continues to get 510 mls continuous feeds during the night and still tolerates that well.

We are still weaning him off the vent twice a day, and he is doing great. Doesn't seem to phase him. I praise God for that....

He is sleeping peacefully right now...... my sweet baby......

A little vent free time?

Appointment went okay other than Camden pitching a fit. He has done so well at the doc apps, then after Thursday's experience he is officially over them and lets us know. ( that is another story, but he saw a develp. doc on Thurs and he was ringing bells in Camden's ears and after that he was a grouch the rest of the visit ) Anyhow, today was the pulmonologist and we did a trial run for 25 minutes off the vent and Camden did excellent! ( after his fit ) We are now going to take him off the vent twice a day for 30 minutes each time. Not much, but it is a start! They didn't lower the vent settings. There was an area of concern on his good lung right before he was discharged from the hospital so the pulmonologist was concerned. The RT is going to come here a week before his next appointment and lower the vent settings, then at the next app they will xray him to see how his lung responded to the lower settings.

In the meantime, when I can take him off the vent for that little time, I feel like a free bird. I did it this evening for a few minutes and the kids were so excited you would have thought I brought another new baby home. ;) "Can I hold him without his tubes?" were the questions from Micah and Peanut.

We are also having to pack up and leave for a couple weeks while Marcus is here doing the floors. (Thankfully the insurance company thought it was needed!) He is also going to do some other much needed house improvements while we are out. We are also hoping to get a new drain field so this doesnt happen again! Lots to do to get things up and off the floor and to get nursing care and other things in order to move Camden.

Once again, the early hour blogging is because my night nurse called in last night. Mom is here and actually took the first shift so I could get a nap in.

Short and sweet...

that is the plan for this post. I am tired and in need of showering.....
Camden was fussy this evening and I couldnt wait until our night nurse showed since marcus was busy. He was upset, hungry, and I still hadn't changed his trach out and it was 9pm.
I started to think he wasnt feeling well. As soon as the nurse came in he was all smiles and actually talked and laughed for like 30 minutes. Made a liar outta me! She actually said to me, " he seems fine." ;oP yup....

The big news is....he sucked. He actually made a seal and has sucked about 5 times today. He gags when he does it, but he did it. He wants to do it so bad, then gets frustrated when he gags...so we stop. Doesn't sound like much, but that is huge for him. :) baby steps....( I must constantly remind myself of that )

That night nurse that never came back that I was worried about is alive .... she just found another job ;)

:)

Been a busy last few days. I'll spare the details and let's just say we have water damage and half of the house's flooring now needs replacing. My poor husband just did the tile in one bedroom. eek!
Thank God for good friends coming to the rescue...I even saw John Gentges on his hands and knees drying my hallway! ;) Great friends....what a blessing.

Camden has done well the last few days. He was starting to tolerate the paci more and was even close to sucking. Now he hates it.....actually cries when I give it to him now.
He did find his finger today and kept it in there for a while. I was wondering why he wasn't gagging, and when we took a closer look we saw that he had it under his tongue. Stinker...


We are trying to get him used to things over the tongue.













we found a way to use the highchair. :)
He really enjoyed the view from it, and seemed to really like it. Here he is watching a baby Einstein video, because it is very important for a 4 mth old to know about lions....

some thoughts....

It is the title of my blog, but I am blessed. Camden has been a blessing in my life. Although this has been the most painful time in my life, he is still the hugest blessing. I sometimes look at him and cry tears of joy, and as much as I try not to let myself go down that road, I think of how close I was to never having these days with him. I think of how I would have never known him and what I would be missing- the way his eyes squint to nothing when he giggles and how he gets that serious look on his face waiting to see what I will do next to entertain him. God is good, God is faithful. Even more so, I think of how I wouldn't have been able to pull through without His grace. We sometimes can't understand why certain things happen, and I don't begin to try, but I do know that we will get through and we will give God all the glory for being able to.

It is early and I am waiting for my Sat. nurse to come at 8am. Night nurse never showed, and no one has heard form her in a week. Weird. Hope she is okay.

and the airways are....

"lookin good!" :) Dr. M said after we see the pulm. next week they'll probably start windowing him off the vent and also lowering the settings. Im beyond thrilled! I told him Camden was ready to get the trach out today, but I guess it isn't that easy. ;p Come to think of it, I hope Dr M knows I was kidding...
I decided to go to the appointment with just the nurse this time and was missing Marcus' muscles for that battery and the vent..... but we did it. ;p To think maybe, just maybe, within a year we won't need that vent is just so exciting. I can't wait for the day Camden is not attached to something!!

Right before seeing the doc he pooped through his outfit again. This is 3/3 now...

Camden was great and let the dr do his thing. He also has swimmer's ear in one ear. I was concerned because he has been tugging at it and you can tell it is bothering him. Not sure why he has swimmers ear, since he hasn't been doing much swimming. He doesn't even take baths with much water, and he sleeps elevated, so hmmmm. But what a darling. He came home and took a long nap!

Happy boy!

that double chin gets in the way of trach care at times...;p

this kid LOVES Peanut too!

Good day today! Please pray for us tomorrow as we go to the ENT to see how our airways have grown and healed!! :)

Long days :)

But all went well. We saw the nutritionist and GI. Camden continues to gain weight like a champ and is up to 14.7 from 13.10 last month. He is getting taller and thinned out a bit. She said that was fine because he had some to spare because he was "fluffy" at the last visit. I praise God he is gaining so well.

We are NOT increasing mls as of now but probably next visit, so that gives me another 8 weeks until I have to increase the pumping! I'll enjoy it while it lasts. ;0)
We are keeping him on the zantac. The nutritionist told me I could take him off the Reglan, but I told him I never gave it anyway and he was fine with that. I didn't think he needed it since I am realizing why he was retching etc. He understood completely and agreed. With Camden's acid reflux the zantac will be fine to protect his esophagus.

The transfer/ride went great and Camden was an angel except the normal pitching a fit while they weighed him. I would to if they stripped me and put me on a cold table. This was right after he pooped all down his leg ( which also happened at the last visit ) He worked himself up and was sweating, then as soon as I got him off of there he stopped.
I just knew I packed everything this time!! By the time we got to nemours I realized i had forgotten the the milk. I thought it was a good thing I brought my boobs with me, but I didnt have a chance to pump since his appointments were back to back, so we waited until we got home. I called Nichole ( home watching my kids ) and told her to warm some milk! ( like it was life or death ) It only put him an hour behind and he didn't seem to mind. He is so "hospital scheduled" and I don't know any other way with him, which those that know me know that I normally don't use babies and schedule in the same sentence!
I need to have a "going out" checklist for sure! Boy, this kid has really rocked my world....and I am enjoying every minute of it.

We have been wanting to get him an exersaucer. I think it will help work out his head and legs. His aunt Lizzy brought one to him last night. He loves it! Gotta get some pics of him in it tomorrow...

Sweet sounds

One of the things I have missed is baby sounds. Since Camden's arrival I haven't heard him except for a faint cry hear and there since he was trached. Well he is talking and cooing around the trach now and it is loud and clear. Makes me cry tears of joy. He gets a very serious look on his face and starts telling you the stories. Love it!

I try to get it on video, but he wants the camera each time so this is as much as I could get..

This is him faking me out with the paci. ;) He'll bite on it and just be really still, then start laughing. Stinker! You can see him biting it in the picture...lol

He is also learning how to work me! ;) He was throwing a complete fit yesterday and when I picked him up he immediately stopped. He is officially spoiled....and I am fine with that. =) Even with his few spoiled moments he is still an awesome baby...and I think he deserves to be spoiled a bit. ;)

His brothers and sisters have been wonderful with him. This was today-my little babysitters while I cooked dinner...

Micah has been my little helper. She loves him and constantly checks his diaper and tells me, "I think he has poop." ;) She is pretty good with him although she is getting annoyed with him pulling her hair and pinching her face these last few days. He is really reaching and exploring!

Tomorrow we go see the GI and nutritionist so we will see how he has gained. His second outing! =)

Pop goes the g tube...

I didn't realize the balloon in the mic key button ( feeding tube ) was leaking so fast, so today when Camden hardly kicked at it during a feed it plopped right out. We put a new one in and called the dr office just to let them know, but everything is fine. The site has healed nicely, so he wasn't hurting. Micah was mesmerized by the whole thing. None of these tubes have phased her so I am thinking she may go into the medical field....go figure. ;)






We took Camden back to his room ( he was out in the living area ) and he immediately took a nap. I think he was stressed out ......











;0)




Micah changed a doo doo diaper yesterday. Not sure how she felt about that, but she is still saying she wants to have babies so it must have not been too bad for her!






All in all he has had a pretty good week. We are still working on the mouth and although he still hasn't sucked, I am thankful for the improvements I see daily. He has had some painful gas issues, but he gets through them. Wears him out with the crying and all, but he gets through it!!







Isn't he huge?? We tried the tub again and he was OK with it. Didn't love it.....but partly tolerated it. This time I put him in it while it was empty, then slowly added water. That worked a little better.




Those that do not know Josh...please pray for his health. He is our dear friends' son and is going through some major health issues right now. Please pray for drs to have wisdom and for the family to have strength.

We love you and are praying, Josh!!