When? What? & WHY?

So I haven't had a chance to really sit down and post anything. Even if I did have one minute I don't think I would've wanted to anyway. This is how crappy I've been feeling lately. I know my last two posts have been very short and to the point. I have been going through so much "stuff" these last couple of weeks. So Joshua had three things done he had the fundoplication which helps him not throw up and a plication of the diaphragm. This plication was done because they saw that the left diaphragm was elevated and they believe it is paralyzed. They "tacked" it down so it won't keep shifting up and maybe can also move a little more by being tacked and movement of the right. This doesn't mean it is any better though. Along the way they discovered he had a hiatel hernia, which also is a reason for the severe reflux he had. He had all this done and seemed to be doing fine. Then the next day he was struggling with his secretions. It almost seemed like his little body was totally overwhelmed with everything. To make things worse, they weren't giving him his med for secretions (so it got worse). He then began having little episodes where he was choking on thick secretions and turning red/blue/purple. Then Joshua went apnic for a short time. They decided to intubate him because his lungs were full of secretions and they basically collapsed on him. I really think his little body got so tired and he just gave up. During this time I met a little baby boy and his courageous parents whom touched my heart. He has wonderful parents who held on to their faith till the very end of his time here. God bless his mom and dad.

I did visit at the funeral home which really made me think about a lot of things...

I get so frustrated thinking about how it seems like people who I thought were going to be supportive are really not the ones who are being supportive. I know for a fact the Lord does send me someone when I least expect it. I am so grateful and thankful for my friend Vanessa who truly understands me when I feel like I can't deal anymore. Then I get a renewed strength that will get me through another day. God knew what he was doing when he had us meet. NOW ONLY for the rest of our PRAYERS....come ON give us more celebrations to out weigh our tears and heartache. THIS To SHALL PASS?? When is this season over in our lives?? I know, have more faith. I do have faith believe it or not (even though I sound really bad right now). I've learned it is ok to express myself and get upset as long as I don't hold on to it forever. After all don't children cry out to their father? The Lord knows I do my share! OK Lord, I love you and trust you. It just seems to get harder at certain points to bear seeing my little one go through this. Where are all the Godly people that use to surround me?? I know they truly do not understand this chapter of my life. I almost think some people think "oh, it's just Joshua getting sick AGAIN---he'll be out and ok AGAIN." I even sometimes think family doesn't get it either. One day the Lord can take Joshua because he can get SO sick. Yes he is ok right now but who knows what the future holds. It doesn't matter how much faith you have...ultimately it is GOD's Plan that lays before us all. I just have to go day by day and know he loves me. Stay focused on him no matter how hard it gets.


Another update on Joshua. We went back for another hospital stay but this time for a sleep study. I have been complaining about how he has a really loud snore and it seems like his air way is collapsing. It just seems like no one listens! Thank God for my new pedi. He gave us a o2 monitor and oxygen at home just in case. He also set us up for the sleep study. Well, I finally got the results today. He will get admitted into the hospital after Easter on Monday because they found he has moderate obstructive airway sleep apnea. I was told he only sleeps about 50% and is not reaching REM sleep! My poor baby never gets real rest! So now they will get us set up with a CPap at night. This is basically continuous air given to him (looks like an oxygen mask but it is just blowing air using pressure to keep air way opened). It should improve his sleep and may even improve his seizures!!! even though it is going to add to our night ritual I am excited to know there might be positives out of this (or at least rest for both of us). The hospital stay is to assure he can adjust well to it and doesn't have issues before we begin at home. PRAY!! If Joshua is happy and gets rest--I get rest---if I get rest--everyone else will have a happier and less sleep deprived mother (haha)

Pray for the BEST!

Home Again

He was just discharged from hospital yesterday evening. I am so glad to be home. He is still sick but not on oxygen or the vent anymore, thank GOD. I pray for his complete recovery. He struggled yesterday when we got home (overwhelmed with his secretions and couldn't get them out). We are exhausted!

PICU & Vent

Joshua stop breathing for a short time today so he was intubated. Please pray for him.

Out of Surgery and SICK

Pray for Joshua he was not doing well yesterday. Will post later

Surgery Again

Well, a lot has happened since I last posted. After many tests, it shows that his left diaphragm is not working. It is paralyzed. I will post details later on what this means. NOt only do they need to redo the fundoplication...now they need to do a diaphragm plication. All this is the result of the traumatic birth injury that occurred OF COURSE!! This really gets me mad to think he was perfectly healthy and now all this is occurring because my crappy placenta. I am really frustrated, worried, and sad that he still continues to go through crap. He is also throwing up so much that now he is biting his tongue (so hard he makes himself bleed over and over again). So far he is scheduled to go into surgery Thursday morning. He will have the fundo and the diaphragm will be "tacked down" meaning they are going to sew it down so it won't continue to elevated and shift. My poor baby.... will post later

Hanging ON

Tonight I am not having a very good night. I find myself just feeling horrible. I feel so helpless with everything. It is not specifically Joshua on my mind tonight. He is actually doing just ok right now. He seems to be losening a lot of secretions lately. Which I see as a good sign, although at times it gets pretty rough for him (has a hard time breathing causing us to be more aggressive with suctioning). I guess we won't really know until Thursday (x-rays).
I feel like I can't help or make things better. I do have faith and don't really think I am angry. I am just really hurt and sad with everything. Joshua's little friend is also continuously going through this roller coaster ride. I just wish these precious little angels didn't have to go through so much. It hurts.
I had someone ask me...does this affect your faith. Well, I don't think it affects personally my faith as far as me not Loving and believing in the Lord. It does at times make me just not want to have faith for that moment(my bad days). I know that sounds kind of confusing...but I know those of you in the same boat totally understand what I am talking about. I then just get over it and shake it off cause I know I NEED it because without it I WOULD NOT SURVIVE. SO I guess in that moment I just feel like I am hanging on. I pray for all the parents out there that feel like they are just "hanging on". I pray for renewed strength. I also pray that some day, some how, we have some kind of understanding in the mist of all the heartache.

Still Praying?!

Well we had xrays Thursday and it showed that there is no change. We just got a percussor (which is a machine that vibrates and suppose to loosen stuff up in his chest. Also, we are starting two meds along with it. We are to do this for two weeks and then go back again for xrays. I pray we do see a change. My poor little guy is now being suctioned a lot more througout the day and constantly getting CPT (like aggressive patting on his chest/back). I hate suctioning him through his nose and mouth with the catheter! He gets so upset, tears up, and little face turns red. I know it is needed though. Don't check him off your prayer list yet...thank you.