Back Home and Sick

Well, surgery went well and we only stayed at the PICU for about 3 days. Thank you for all your prayers because I truly believe that is what got us home so fast. We have never stayed such a short time and we have never been released straight from PICU. A couple of days later after we came home he began to have high fever. It lasted for about a week. I was very concerned about it especially since he had just had surgery. However, a few tests and xray later (I had to practically nag at the surgeon to run some tests and didn't accept it was "just his body getting use to it") we found out he had STREP THROAT. Yes, strep throat. I was so glad that is all he had and nothing else that would drag us back to the hospital. Thank you to those who have shown us your support. I especially want to thank those of you who just simply let us know you are praying. It means the world to us. I really believe it helps us get through these tough times.

While at the hospital I met a mom who had her child on a vent and was facing the decision of letting him go. It was truly heart breaking to hear what she had been going through. I went into the PICU hallway and began to pray with her. At that moment I really didn't care who saw or what anyone thought. I really think the Lord puts these people in my path for some reason or another. I know at that moment it is not my strength or faith that allows me to react in prayer. Honestly, I don't even feel like praying for anything sometimes. A couple of hours later I'm a mess. I feel like I want to fall apart emotionally. Here I am waiting for them to give me word on how the surgery is going with MY SON and feel extremely nervous, spiritually not at my best, and feel physically drained. Who the heck do I think I am praying for someone else??!! I know it's only by God's Grace and His Strength. I also know many people pray for us and Joshua. This is probably what sustains us through this crazy ride. I even joked with my parents telling them I have to learn to not talk to anyone or answer any questions...basically stick to myself so I won't "get involved". I get so emotional and everything becomes very personal. Well, in the very beginning of our journey I did say Joshua would do something GREAT. It's like a giant puzzle that I know the Lord will bring all together someday.

Joshua has not been doing well this week. He has been choking and gagging on thick secretions and doesn't seem to clear. I am really concerned about his lungs. This is the way he gets when his lungs collapse. He just started on antibiotics and other meds. Hopefully this will do the trick. We have been suctioning him a lot. It also gets scary when he gets really red from choking because he can't bring it up. He is miserable and cries because of all the suctioning. It is hard seeing him tear up and heart breaking to see the look on his face as soon as we turn on the suction machine. I really was hoping not to have to suction so much especially since he just had surgery and they fixed the hernia. We really don't have a choice especially if he is choking. It is horrible. Pray he gets better soon so he doesn't loosen the fundoplication and get another hernia. I spoke to the surgeon and he said there really isn't much we can do about it. We can't stop suctioning because he doesn't always cough it up and obviously airway is priority.

Joshua Calling ALL Prayer Warriors!!!!!

Halloween 09

GI Joe



Joshua will be going into surgery tomorrow morning. We need to be there by 5:45am! So, what am I doing still up?? I can't sleep. Different thoughts going through my mind... Will Pray.

I Love My Angel

I had not posted because our visit to the surgeon didn't really change anything. The only thing we decided was do the surgery or not????? So we decided to see if he was truly refluxing because he has had a lot of milky mucus like secretions. We put food coloring into his milk and then did a follow up with the surgeon. No blue coming up!! However, he has had a lot of issues digesting his food because of the hernia. When we vent him he seems to have a lot of food still in his tummy and lots of air. Then his feeding need to be held back and therefore not getting all calories he is suppose to get. We just saw the surgeon Monday again and he said this is reason enough to have surgery. BUMMER!!! I'm not sure why but this time I really feel sick to my stomach about it. It might just be because of what he did the last time (placed on vent and didn't do so well). Also, it is also a higher risk because he's had surgery more than once now. There is also a possibility this time they might need to really open up the area in his tummy. The surgeon will be placing a mesh of some sort to try to help support the stomach to try to prevent another hernia. Honestly I don't even feel like posting anymore or explaining.Pray for the best. With or without Faith....it is scary. This is my precious baby. Surgery date is Thursday, November 12.

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.