Possible Surgery Again

Well, we almost stayed out of the hospital for about 5 months. Joshua was discharged out of the hospital last Friday (aug.28). We were there for 10 days!!!!!!!!!! I hate being there. I felt so bad for my two little ones (Isaiah and Isaac) because they had to go back and forth the first week of school. Now we are out and this week has been filled with doctors appointments. I feel like I haven't caught up with my sleep or rest. He had pneumonia and more so on his left side which is the side he had previous surgery on. We took him in because he was in respiratory distress. It was crazy because it seemed like it was from one moment to the next. As a matter a fact we had just seen the neurologist during the day and then that night he spiked a fever. His heart rate reached about 200-220 and fever shot up to 104. His respiratory rate was also very high. It was horrible to see him struggle. For the most part I usually hold it together pretty well. I've even had some nurses at the hospital tell me I am very calm and show to be very strong. However, at the time I seem to be fine because I know this is when Joshua needs me the most I guess. I feel like I need to be his voice especially with the residents in the hospital (whom I always have bad experiences with at the hospital). Thank God for our pulmonologist and nurse practitioner whom I owe so much to!!!!!! After they got involved and the residents finally listened to me, Joshua was able to calm down and bring his heart rate back down. When he was able to catch his breath he finally let out a little cry. I have never heard such a sad sad cry come out of him. It was a different cry. It broke my heart to see and hear him cry that way. There in our room after everyone cleared out, just the two of us, we cried together. At that moment is when I begin to think I can loose my baby. It is so scary. I love him so so so much. I can't even imagine my life without him.

After having x-rays they pretty much stumbled upon finding a hiatel hernia. Yes, again another one. It might also be because when they did the fundoplication this second time, they did it even more tight than the first one so it would hold. It being so tight can cause him to gag and the pressure can cause the hernia. So.....now they want to fix it again....so that means surgery again. They are looking at about 4-6 weeks to make a final decision on how to approach this. For now we are giving him time to heal and rest after a hard 10 days at the hospital. This means more tests to have a good look at what is going on. Yesterday we saw the GI doctor and he said he will talk to the surgeon to decide on either doing an endoscopy or esophagram to take a good look inside his chest area. Please pray for him. I am terrified of surgery, especially because of what happened the last time (stop breathing and placed on a vent). He is a very "high risk" so I wish we didn't have to put him through it all over again. I know surgery will also overwhelm him and then he ends up with lung issues all over again. My little guy is such a fighter he has gone through so much.

Well, as far as prayer goes we need lots of it! We have not lost our faith, but we have grown weary. We have been visiting different places to worship trying to find "a place to fit". Our lives have changed so much these last two years. After going in and out of the hospital so many times it seems like people get "immune to hearing we are back in..pray..." I'm not sure if that makes any sense to anyone else but us. In the beginning I would call "everyone" to have them pray. After a while you learn you have to just rely on the ones that really understand our day to day challenges. Those are the ones that will truly pray and be there when you need them.

Will post later for updates.
Pray for all of us.............Strength, Faith, Peace, Healing.

The Boys....Joshua is 2!!!

Celebrating Isaac's 5th Birthday and Joshua's 2nd


Tony Joe 12yr Joshua 2yr Isaac 5yr Isaiah 6yr


Joshua sporting the spike look



Well, I'm not sure if I've really ever posted on my other boys. For those of you who do not know I am a stepmom to Tony Joe, he is my 12yr old. Isaiah is my 6 year old and Isaac is now 5 yrs old. Then of course, Joshua is my baby who just turned two. Yes, I have a house full of boys!! Very busy, entertaining, and active household for sure.

As for Joshua, he is doing ok right now. Still working on seizure control because they have been stronger. So as of right now we are changing dose on his meds. Pray for the best. He has been smiling more and it is the cutest. I will post pictures later hopefully I can catch him in the act. On my way out for appointment but wanted to post quick update.

Terrible Two?? Wonderful Two!!

Well, his birthday is coming up. We have noticed he is very vocal now and cries when he is not HAPPY. It is really cute to see him with his little tantrums. It always makes me smile to see him cry unless of course it is cause of a seizure or something hurting him. He also had his first dental appointment. He totally hated it of course. He put up a fight---way cute though. Funny how the little things are appreciated. Heatlh wise, he is doing ok right now. I'm not really happy about his seizures but he is not as bad as he has been in the past. He is now putting up a fight at night giving us a hard time when we put the cpap machine on him--little stinker.
These last couple of days he has been smiling a lot, especially late evenings. He hadn't really been smiling I guess because he wasn't doing so well with all that was going on with him.
I sit him up against the sofa and he loves it. He looks around and is so peaceful. Usually when he smiles it is at random times. However, two days ago he was actually responding to me. For at least five to ten minutes while playing with him (kissing his hand, talking to him, shaking his arm, and lightly rubbing his cheek)he was actually smiling and teasing me by turning his head towards me and away from me. I was so emotional just knowing that my baby was actually playing with me. It was such a GREAT feeling. At one point I got so emotional that he heard me and thought I was playing with him so he smiled even more. As I laughed and cried his smile seem to widen even bigger. SO So cute. It was the best feeling in the world. I just pray for more of those moments with him. It's crazy cause the day before I had just visited a friend who has a baby under the age of 1yr and it was hard seeing his interaction with others. I tried to get over it and was actually playing with the baby for a while and was making him laugh. It lasted for a while until I knew I "hit my limit". Then the next day the Lord gave me this little miracle. A little bitter sweet though. I pray this is just the beginning... another step

Joshie the tough guy

Well, he has been sleeping better with his new little cpap machine! Oh my gosh who knew how great it would be to go to bed at 11:30pm or even 12:00 midnight instead of 1:30 in the morning. Yes, our little routine would be to stay up until he could no longer stay awake and fall asleep at 1:30am. Now he has been sleeping by 11:30pm and some days even a little earlier. He also looks so peaceful now when he is sleeping. The only thing now keeping me from falling asleep soon after he does are his meds. He has a couple that are given at 12midnight and 1am. I try to stay up so I won't miss giving him the meds or I at least bump them up a little. However, it has been great knowing it is ok for me to fall asleep and not worry so much about his airway collapsing on him in the middle of the night. The way I sleep, I probably need a sleep study done on myself(ha ha)! I wake up for every little noise now because I am so use to listening out for him. His seizures unfortunately have not really improved. Actually it is always like clock work. He always seems to have them at 4 am and it wakes him up. I then calm him down and he falls back asleep. I hate it! He also gets them throughout the day. I want to start the ketogenic diet soon if this does not improve. We have tried almost all seizure medicines there are to try so far.

Joshua has been sick this week. His lungs have sounded a little wet. Secretions have increased again and he is struggling to clear them. I think he might have caught a cold. I have had to give him oxygen at night (or while sleeping). He also had a fever. I'm trying to keep him at home as much as possible and avoiding all the "sickness" going around right now.

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.