Unexpected PICU stays YUCK!

Camden is ok. But long story short his brothers got careless in the house with Camden in their care ( I wasnt a happy mom) and Camden did a crash bang off the couch onto tile. Fractured his skull on the side of his head. I was so upset. I atually didnt bring him in right away because there wasnt a knot and they had told me hit fell more on his back. Nope. The next day he had a huge fluid filled pocket on his head so to the ER we went. We were there for 5 hrs, then they admitted him to PICU over night. They said it was really tiny fracture, but with his history they wanted to watch him. I think the worst part was when they had a social worker come talk with me. I understand they have to do this, but it KILLED me. I cried the whole way home. I was paranoid that someone might actually think that of me and then I was sad for the kids who are actually in there because their parents really hit them in the head. =( The dr said she cant begin to tell me al lthe abuse cases. How sick and heartbreaking.

So that is what we've dealt with this week. He looks great and seems be back to normal. Other than being clingy he didnt have other symptoms. ( o fcourse he couldnt tell me that he had a headache which Im SURE he did!)

Other than more gtubes balloons popping on us, there is nothing else to report today. =) We continue to do the count down to trach decannulation day!!

His First Word @ 15 mths old

was Momma. =) The other day on the way home from a two hour trip, Micah repeated it 5,000 time to him. (that is what it felt like to me) Right as we were about to turn into our neighborhood he said it and I was all over the road laughing and crying at the same time. IT SOUNDS SO WEIRD to hear a word come out!!! Even with the PMV on he just usually hums and sometimes says, "ah, ah, ah" so a real word is just too neat. =) He is very sick of all of us asking him to say it, so rarely will he say it on demand unless he is in the mood for praise. He said a word!!!!

I have been letting him sleep with the therma vent on. I guess technically you arent supposed to, but with him doing so well I wanted to see how far he would go without needing oxygen. We spent the night at my parents the other night and he didnt need any. Since we've been home he has needed it around 3am so I have to use the J Bunn. That thing turns our room into a sauna so I try to keep him off it as long as possible. I am going to have to get some nasal cannula and try to get him used to them on his nose. When that trach goes, I know he is going to still need o2 at times. yikes, that should be fun getting those things up his nose! ;s He has been doing great in our room. Im up much more but I kind of think of it like I am up with a newborn baby. Every night is different with the monitors and him coughing etc. He has actually went the last three nights without suctioning so he is slowly getting over that cough he had.

Trach decannulation date: JUNE 2nd

ok, so that answers that ? of the day...

Dr M did come in today and he taped Camden's PMV off which didnt phase him. (PMV is his one way speaking valve, so taped off he was breathing all on his own) After scoping him last month and with Camden doing so well he said the trach is ready to GO. Yep, the scheduler is trying to find a date to go to the OR and PICU so Dr M can scope him, check an ear tube that was covered with wax, ;p and then remove the trach. REMOVE THE TRACH. YAH! I knew he was ready, but it still doesn't seem real to me! So many emotions. We will stay one night in the PICU then when all goes well, head home without having to worry about a suction machine and emergency bag anymore. We do not have a date yet. With being so backed up it probably wont be until June, but we are heading in that direction so I am grateful. i will know the date at the end of next week. I told Jesus I am not asking for anything today.....just thanking & thanking & thanking.

So, I put him on a soy formula and he was a different baby this morning....YAH! I talked with his nutritionist earlier and she gave me a soy formula to check out on line this weekend. If I like it we can go with that and then find a new milk free recipe for the blenderized diet. For now he is back on formula, just soy free. =) I can't wait for him to feel better and it was so nice to see him not pukey this morning. I could kick myself for not realizing it was milk and this bad!

Back to the ear tubes and like I already said....they did see one and the other was buried behind goo so he'll look when Camden goes under before trach is removed. Not sure why he still pokes his ears, but someone told me today it could be that he hears more clearly...dunno? At least he isnt crying about it so maybe it is more of a weird feeling.

Milk allergy

Yep. =( I had a blood panel done last week for allergies because of the symptoms he had over pediasure and a few times during breast milk days. He is allergic to milk. I will say I knew he had an allergy, but had no idea it was that. Sooo...all day I have been thinking about it, and there are so many symptoms that milk may be causing that I could be blaming other things for. He is lethargic and puky every morning. Of course he has severe reflux, but has milk made it more severe? He is on a continuous milk based formula through the night, so it could be! As upset i was to hear that he even has an allergy, I cant wait to get it OUT of his system to see a change in him. Tonight he is on a soy formula and I will alter the blenderized diet until I talk with the nutritionist again.

Also, I called the nursing company and stopped nursing all together. I am not finishing the month and Camden IS in with us. A little cough has also settled in his chest, but it hasnt been too bad so daddy and I have taken shifts to sleep on the side of the bed closest to him to suction when needed. ( he normally doesnt need too much suctioning at night, sometimes never) Poor thing. He is fine during the day, just coughing every now and then, and then at night he needs a bit more O2 and coughs much more, but other than that it hasn't worn him out too bad. Now I know why he was so clingy and whiny last week.

Tomorrow we go see the ENT for ear plug follow up. He has been poking at his ears, so Im wondering if they fell out, Not trying to be debby downer, but his ears are still bothering him. I am a bit sad that we wont be seeing his DR and just the nurse practitioner because I was really wanting to see if we could start weaning him off this trach. All in time & just trying to be patient. He is just soo close, and doing so well which I am so grateful for. This time last year we were preparing to leave the NICU after a 3.5 mth stay. He has come so far this past year...

Camden's new move and new diet...

After much thought and prayer, Marcus and I have decided to move Camden in the room with us. I called the nursing company last Friday and let them know and told them they could finish up with this month, but that I am ready to have my baby in with me. ( Plus a lot of nursing issues, but I'll spare u the details =p) I am beyond excited to have my baby in my room. He is doing well, and hasn't had any serious scares. I know that my sleep wont be as thorough, but it is time. I am beginning to be more stressed about new nurses and sleeping nurses and that hasnt been helping me sleep. I will have the monitors taped to my head. Not really, but they will be on a shelf right next to my bed. Room measurements have been done and there are spaces ready for the crib, O2 tanks, suction, apnea, and pulse ox machines, j bunn, and feeding pole. =p I hope Camden is just as happy and does well with the new move.

Today was Camden's first blenderized diet. I was super excited. This first batch was turkey, applesauce, squash, peas, olive oil, milk, rice cereal, and a bit of corn syrup and boy did it stink! (Good thing it is given by gtube lol) I am not sure how he is tolerating it. He was off and on retching today. I am not sure if I gave it to him too fast? I did his dinner over 30 minutes and he didn't do well. Tomorrow I will slow it back to over an hour and I am thinking he'll do fine, then we will work at slowly getting faster. Day by day..... =) And thankful to the Lord for this day....

A few updates in the Camden world....

Camden has been staying healthy and we are super thankful for that. Crawling around a lot and slowly cruising along furniture. Funny thing he still doesnt roll....weird. He is like a turtle on its back... We are still doing OT here at the house once a week and his OT is very happy with his progress.

Still has just the six teeth...

Still no words, ( besides the occasional mamamama) just hums and "ahhs" and the peewee herman(ew) laugh that is hysterical. It is so fake and so funny!

Doing great with the o2, only at night but now seems to be needing it only a few times a week, with the j bunn.

Forgot to mention we are trying a new feeding tube...the Mini One. Been a few weeks, and no leaks with it. Much more secure, until today when my 13 yr old ripped it out. GRR! He doesnt go online, so I can vent here. ;) He felt bad, but the balloon didnt burst and I put it back in. I was a bit emotional ( ok, I was crying) because it was hurting Camden and he was bleeding. So over the tube feeding, but it is what it is. He will not put anything in his mouth. Im making him play in food more this week. We did stage 1 sweet potatoes on his highchair with a spoon and he smacked it and touched it. That is a big step. Another interesting thing is that when WE eat, he licks and smacks his lips. It looks as if he is begging for food! Of course you offer him some, and (besides the occasionally surprising lick) he shakes his head no or growls at you to leave him alone.
I am also starting him on a blenderized diet. I am not wanting to give him a toddler formula 24/7. I want him to have real food. Fruits and veggies. So, I got with my nutritionist and we are starting with a simple recipe. I will do this during the day feeds, then start him on pediasmart feed at night to make up for needed calories. Cant wait to try it!
Still have to get him into the allergists to see if we can find out why the breakout with pediasure.

We are down to an hour for one feed now. ( sounds like a long time to some, but that is great for us) I am hoping this new diet doesnt cause a huge set back because I know I need to start it out a bit slower to see how he tolerates it.

he is signing:
yes
please
all done
milk
no ( his made up "no")
dad
mom
and today he did cat for the first time =) he loves the cats out front and want to grab them, but they are way mean! :s
I have been slacking on teaching new signs and need to get on the ball...

weighing 22 pounds now at almost 15 mths.

CDH Awareness Day

March 31st is CDH Awareness Day. Camden is sportin' his new shirt we ordered for him and he has the major giggles today. =)
This video below is from the CDH Cherubs website for all cdh survivors and babies that have already went to be with Jesus. On this video, there are 700 pictures of babies, children, even some adults that have had their lives changed due to a diaphragmatic hernia. Camden's pic is even towards the end. =) The founder of the cherubs website is a precious lady, Mrs Dawn Torrence Williamson who lost her angel to CDH. She has dedicated much of her life to continue to help others that struggle with the affects of CDH or the loss of a CDH child. The beginning of the video shares some facts about CDH... video