Tuesday, May 27, 2008

Outta There!!!!!!!!!!!

Joshua and I are at home!!! We are so happy to be back home. He was just discharged this afternoon. He is doing better and is still not getting fed as much as before. They will increase the volume in about two weeks. His infantile spasms also have decreased since starting a new medicine. The ones he is having now are very mild. I have to get use to the new medicines he came home with. I hate having to give him so many!! His Neurologist wants to try to get him off of some of them, but she wants to give him time to recover from the surgery. We will see how that goes.

I made a correction on my last entry. The car wash is going to be on Doderidge and Staples. Just an FYI.

Keep praying for us, I pray this is only the beginning of what God has in store for Joshua. I know this is just merely a baby step towards Joshua's healing. I also would like to lift up in prayer Joshua's little friend Giuli. Please pray for the Lord's healing hand to be upon them. They have gone through so much already. I also want to pray for Giuli's parents. Lord give them strength in this very difficult time.

Friday, May 23, 2008

Staying Strong

Joshua did fine during surgery and is now completely awake. They waited a little over 6 hours to start feeding him. He is getting continuous feeds through his G-button and the amounts are very small. They are increasing it every four hours, slowly of course. Now we have to wait to see if the fundo works for him. If for some reason it doesn't, then they have to do the procedure all over again. I am so glad I didn't really get to see him on the ventilator and they didn't have a hard time taking it out. THANK YOU LORD! Just thinking about him on it made me begin to feel all those emotions I had when he was first born. I kept thinking it would be so hard to see him like that all over again and relive those moments of "not knowing". For those of you who have not heard of my ventilator story, about how the Lord heard my aggressive prayer and then miraculously removed it, I will tell later.

About the raffle, we have submitted our ticket order and are currently waiting. The prizes have changed a little bit. These are the prizes: 1st prize western Caribbean cruise for two/ 2nd prize $300 Lowe's gift certificate/ 3rd prize $200 computer pen with software/4th prize Motorola bluetooth ear set/ 5th prize $50 Two George's dinner gift certificate. I would like to thank our friends that have helped us out with donations and provided our prizes. Special Thanks to Comfort Travel Center, Endres Construction, Jarred Cassidy, Jesse Montez, and Two George's. I also want to thank Elida and Larry for the donated tickets. I appreciate our friends and family for all the support they have shown us through all of this. Another fundraiser going on right now is also being held by the Firefighter's Union. Danny Valdez brought our situation up to the Union which resulted in a raffle. They are raffling off gas cards. Thank you to our firefighters family for your efforts in helping Joshua. Also, Homer Sierra is putting together a car wash. So for all of you people that want your cars to be washed by a firefighter go to Walgreen's at Doderidge and Staples. It will be on May 31 around 11:00. I know there are so many more people I need to thank. Thank you all who are helping out with this! We really appreciate it. We love you guys and it means the world to us that you care for our Joshua.

I also appreciate those of you who leave comments on our blog, text message us, call, visit at the hospital, and have helped with our boys. It lifts my spirit to know you care. It also shows your thoughts and prayers are with us. Tony and I are also very lucky to have such wonderful parents. The BEST Parents in the world! They have helped out so much. It is so hard leaving our boys, but it helps to know they are always in loving hands. Thank you to our parents for being there for us in this very difficult time.

Thursday, May 22, 2008

And The Waiting Begins

He is in surgery. They took him in at about 1:00PM. Gave him lots of kisses! I was fine until they took him. I am still nervous and scared. I do feel at peace though, weird huh?! I can't explain it. I told someone today, I know God has control and the plan. I just hope it is the plan I want (ha ha). Tears, tears, tears, but I know it's ok. I hate waiting....the waiting game.

Wednesday, May 21, 2008

How Much More???

Ok, Joshua had been doing fine. We were just waiting around for the day of surgery to get the fundo. Then out of no where he aspirates horribly. We could not get his breathing and heart rate under control. His heart rate was at about 207!! It was so scary for me to see him go under such distress. I found some way of keeping my composure and was doing ok for a while until it finally hit me. It hit me when a nurse complimented me on how "strong of a mother" I supposedly am. I know the only strength I have comes from the Lord because at times I don't feel as strong as others might see me. Anyway, they sent him to ICU and he is there right now. He is pretty calm right now. The doctors are really not sure if they should go on with the surgery because he sometimes has a difficult time with his breathing (I think because his throat is swollen from the aspiration). If he does well tonight and tomorrow morning, they will proceed with the surgery. They are planning on doing it in the morning around 7:30. Please pray for us and especially for him. I feel so anxious, scared, nervous, and worried all at the same time. I know God is in control, but I guess my earthly human emotions kick in (not to mention he is my little baby boy). OH!!!!!!!!my precious little baby boy, if only.....if only....I just wish I could take it all away. He has gone through so much. OK, so I am having a really hard time right now. Not my best moment. I know I gotta keep going. He is such a strong little baby. How much more can I handle. I know they say God only gives you what you can handle...but oh my much more??????

Tonight I looked up at the night sky and see the trees blowing in the wind. I see the little park next door. I just think wow, the Lord is the creator of all this. He is in charge of all that is around me....Lord I just pray you are so great. How much more can you do for my little guy. What is ahead? The Plan? For What? My life will never be the same. If only people saw what we see in and out of the hospital. The lives that are changed forever because of tragic events that occur. Such love, compassion, and hope I have for these mothers, fathers, and children. My heart hurts tonight. I know there are other hurting much more and facing much more. I pray for those. I pray for the little girl and boy next to my dear little baby boy. Oh, how I tear up when I see those parents and the hurt I see in their eyes. WHY? How Much More??? If only people knew....Lord be with my baby and all those little ones. Your love is so GREAT. I know you are still there. At this moment, I cry out to you and feel hurt. Heal tonight.

Monday, May 19, 2008

Pressing On and Moving Forward...

Looks like we will be here at the hospital till the surgery and then for recovery. It feels like we have been here forever! It's been hard seeing my boys going from place to place. I miss them so much, it breaks my heart not being home with them. My husband Tony has been doing such a great job with everything. I am so proud of him for being such a great husband and father. We will be going on seven years of marriage now, God is awesome. Sometimes I feel as though we've gone through more things in those seven years of marriage than people who have been married twenty years. One thing is for sure, every obstacle that comes our way has brought us even closer to each other and to the Lord. I love him dearly.

Despite how sad I may feel at times with everything that is going on with Joshua, I know the Lord is still watching over my family. I'm not sure what others think, but I could never be angry at the Lord. I really can't explain it. I get angry at the situation but never at him. We live in this imperfect world and only the Lord knows why he allows things to happen the way they do. This is merely just another chapter of my life. Believe me, I know he is all knowing----I still let it all out with him. At the end of my time with the Lord I always end with thanking him for every little step towards progress I see. I could not do any of this without him. I have many moments when my heart aches for my little guy. I then just shake it off and know I need to keep pressing on and moving forward. Keep praying for strength upon my family.

As far as the raffle, we are moving forward with our plans. We finally have all the prizes and are ordering the tickets today. Hopefully it doesn't take long to get them printed and we will start distributing them. Let me know if you are interested in helping us sell them. I want to sell them as soon as we can because I'd like to take him for treatments before school starts (Isaiah will be starting school and I don't want to go while he is in school). Here are the prizes: 1st cruise /2nd $300 gift certificate Home Depot/ 3rd $200 computer pen with software /4th $50 dinner gift certificate for Two George's

Friday, May 16, 2008


Joshua was discharged from the hospital on Friday May 9. I had to bring him to the ER because he was gasping to breath and I could not get him to slow his breathing down. He has been like this off and on since Saturday but he was able to snap out of it. I figured it was because of all the suctioning we have to do. I did call his pulmonologist Monday afternoon and took him in to the Pediatrician on Tuesday. Then I brought him in to the ER on Wednesday. He was admitted Wednesday night and here we are again. I know a lot of the nurses now and Joshua's name has become one of the well known names around here (gotta have a sense of humor at times otherwise I'd be an emotional mess 24/7). They are thinking it might be a combination of his reflux, aspiration, laryngo malacia, and I think all the nasal suctioning with the catheter made him swollen. They did confirm that the inside of his nose is swollen. I am thinking that when they suction him he gets overwhelmed and tries to catch his breath but has trouble because his nose is swollen. Anyway, that is my own little diagnoses. They did give him some oxygen last night but they have turned it off. He was in distress for a little while because they had to deep suction him again. I already told them---NO MORE DEEP SUCTIONING unless it is absolutely the last resort to relieve him from distress. He is resting right now, my poor baby is exhausted from all this mess. I hate seeing him poked constantly, being given all sorts of drugs (medicines), and I hate to see my poor baby's expression on his teary red little face because they keep suctioning him. I'm still scared about the surgery but I wish they would hurry up and get things going. I just want him to be ok already. I'm so so tired and I miss my other boys so much. I feel really bad about not spending time the way I use to with them. I feel as though my whole world has been flipped upside down. WHY? FOR WHAT?
I've met so many wonderful people out of all this. I'm talking about all the parents that have gone through the similar emotional roller coaster we've been on these almost 11 months now. There is such an indescribable bond between us. If only some of you could hear the many stories out there. Parents/Children with unbelievable stories of survival, heartache, and great strength.

Thursday, May 8, 2008

Surgery Scheduled

They turned off the oxygen today and he is doing fine without it. Tommorrow they will do an upper GI exam to make sure everything is ok to proceed with plans for the Fundo surgery. They also scheduled appt. with the surgeon on May 14. The surgeon is the same one that did the G-button surgery (that's about the only thing that brings me comfort). The actual surgery for the fundo is on May 22. So, I'm very nervous and scared. I know of people who have had this done on their babies and try to keep that in mind. They are doing fine and have said that it has helped their children for the better. However, everyone is different and responds to it differently. Someone came in to talk to me about the procedure today and we discussed all the bad things about it. I know God is in control of everything. I am still really sad and wish I could just get a quick miracle.
It's really wierd the way things work. Just eight days before Joshua was admitted we had our pulmonologist appointment. He told us we didn't need the fundo at that time because he was doing ok. He said his weight was still increasing at a good rate and he also pointed out that he had only been admitted once since being discharged from the NICU at birth. So...if there were any issues down the road then we'd have to think about the fundo. Here we are a week or so later. Gosh, maybe it was God's way of preparing me in some wierd way. Like I said only God knows!

Tuesday, May 6, 2008

Still in hospital

He is doing a lot better but is still on oxygen. They spoke to me about a fundo. They've spoken to me about this surgery before but they felt that he was not in need of it at the time. Now that he's been admitted with this respiratory distress they feel it is the best option for him. The fundoplication is going to help with the reflux and keep him from aspirating the food (into the lungs). However, it will not stop him from aspirating on his own secretions (saliva). It should be better for him........I still feel horrible about him needing surgery. The Dr. said we will discuss it further when he gets better. I'm so sad that he has to go through even more procedures. Pray for Joshua. Pray that everything turns out for the best. This is all I want for him.

Saturday, May 3, 2008

Rough Week

My 5 year old (Isaiah) was admitted into the hospital on Monday and was discharged on Wednesday (won't get into details right now). So then on Friday morning Joshua wakes up with 102.2 fever which ends up at 103. As I'm getting ready to take him in to ER, Isaiah is complaining of pain and also needs to be taken in. Long story short...I take them both in and Joshua gets admitted. I not only have to deal with both my children getting sick and going back into the hospital, I also have to deal with getting treated like crap from one of the residents there. As far as Joshua...we are still in the hospital and they are monitoring him. He did have to be placed on oxygen. His lungs don't show signs of pneumonia yet (pray he doesn't develop it). He aspirates and this might just be the cause of his respiratory distress. It can also be that he is coming down with something (like a cold....etc.). FYI: The children that deal with so many issues like Joshua and have the problems like him usually get more sick than a child who doesn't have these issues. So......he should not be exposed to sick people (even if it just seems like a little runny nose). I just don't want to offend anyone in case it looks like I get over protective of him. This morning so far has been worse than yesterday. They had to deep suction him several times. He also got his fever back and was having such a hard time breathing even with the oxygen given. His heart rate was really fast and we couldn't get him to calm down. He also had a couple of different spasms (seizures). It breaks my heart to see him go through so much. Lord knows he has had such a rough start. As of right now he is calm and his breathing is stable. They also have decreased the oxygen. He sounds so so much better and is sleeping (he is so tired from this morning). As far as the seizures, he hasn't had them anymore. I was told that they were probably break through seizures because of the fever. I pray they don't come back. I am currently using Tony's laptop at the hospital so I will give an update as soon as I get one. Keep us in prayer! Pray for healing and strength upon our family.

Oh, as far as the tv, I haven't had word on it. I'm disappointed but we will continue with plans as soon as we get back on track. I also am so happy to have met our new friends (Vanessa, John, and Giulianna). The Lord has certainly put them in our path for a reason. Joshie's friend Giulianna is so cute! Keep her in your prayers as well (see link).