JANUARY 30, 2015

HOLA!!! I wanted to share a little bit more about last weeks hospital stay. This is the update I gave on our Facebook Group Page … Matthew’s Miracles..

well, hello everyone. I am laughing because the past few updates I have started with “its been a crazy week…” lol… life is crazy for sure. I’ll try not to start a post that way… but, I can’t promise anything.. haha

Matthew has still been vomiting a lot and still getting really dehydrated. He just has not felt good at all. Matthew was “Stable” for I think… three days..lol. Those were a GOOD three days. But then he started throwing up non stop and we were having a hard time with his dialysis. He has been getting a lot of low drain alarms throughout the night. In the morning his ultrafiltration numbers aren’t as high as they should be… in the back of my mind I have this anxiety that something underlying is wrong… either catheter needs to be moved down more… or there is some kind of blockage.. or…I don’t know..

I check for fever every night and every morning and I noticed that Monday evening it started rising. It was late and speaking with his nurse, all we can do is pray it gets better with dialysis and he feels better in the morning. Well, this night he literally threw up ALL night! By 6am, he became very lethargic and VERY dehydrated. I checked his fever and it was only 99*… but what scared me was Matthew was not very responsive to me. He was looking out in a daze and just looked like he was in a different realm. It really scared me. I called his nurse again and she said just get him to the hospital.

We can’t take Matthew to any of our local hospitals. No one knows how to deal with a baby on dialysis… let alone a baby with a g-tube.. vesi–no urine output..etc etc… so, anytime something happens, we have to rush to Loma Linda Children’s Hospital. The fastest we have gotten there is 45 minutes.

When we got to the ER they immediately triaged Matthew. We all joke that he should just have his own special entrance.. haha.. they took him back and he looked even more out of it than before. I was terrified because of how he looked. It was awful… The nurse took his temperature. It came back at 106.2. The nurse didn’t believe it and looked puzzled. I asked if something was wrong with her thermometer..it must be broken,,lol. She took it again, 106.3! I was shocked. I have never seen a temp so high. As calmly as she can, without freaking out, she said, “Take off all of his clothes right now!” She walked out of the room and called for someone. A doctor came in and told me to pick Matthew up and bring him into a room. Everyone was scrambling around me and I picked up my limp son. I very quickly followed the doctor and nurses to a room where they started working on him. I got asked a lot of questions, but with Matthew’s history, they all kind of knew already.

The next few hours was a huge blur… a couple things I remember was nurse brought three bags of ice and they laid Matthew on top of those bags. It was odd to me. Matthew was so out of it… he wasn’t crying. It took about three hours for his fever to get down to 101. Matthew had a seizure because his fever was so high. I have never seen anything like that…

Once Matthew’s fever got to 101…100..99… they sent him upstairs to an isolation room. Doctors were afraid he had that deadly flu. They kept asking if he has had the flu shot… but he isn’t even 6 months old yet… he’s too young for that shot.

So long story short… he was put on three different antibiotics.. they poked and tested Matthew way too many times… **I yelled at one lab tech and told her to leave my son alone because if you can’t find a vein.. (after I TOLD her that vein was blown out…) I wasn’t going to stand by and watch you stick a needle in his arm blindly and then fish for a vein while he is screaming at the top of his lungs in pain!!!! –sorry– I have seen this way too many times and I only allow lab techs who KNOW how to draw babies near my son…yes, I’m THAT type of mother..lol**

He was tested for anything and everything… I was told about how children have been coming in with a combination of a cold and another virus.. both viruses are really bad… after the second day, Matthew started feeling a little better. He was finally acting a little like himself. I sat him up in his bed and started playing with him.. He smiled! It was great to see him smile. The flu came back negative and we found out that all he has is the common cold. The Rhinovirus (sp?) Matthew’s immune system is worse than I thought… scary. A 106 fever from the common cold…

While we were there, his primary NICU nurses came by and paid Matthew a visit. It was so neat to see them!!! I missed them so much!!! There have been times  where… God forgive me…but I wished Matthew was back in the NICU. I have had so many more downs than ups sometimes…. and seeing his nurses was such a relief!!! I wasn’t alone during that 30 minute visit.. it was neat!

After four days in the hospital we are now home. Poor guy will be in a bubble until after he has a transplant.. lol.

This week we are playing catch up.. his labs are all over the place.. we saw a doctor yesterday at kidney clinic and his potassium is very dangerously life threatening low. we stopped dialysis and all his meds for the night and gave him extra potassium. Today his daddy took him back to Loma Linda to get labs drawn again. Right now I’m sitting with Callia, praying God gets him back to normal quickly.

So for right now… we wait. I’ll update again once we get all his labs back. We usually wait 2-3 hours after labs are drawn for results… daddy is taking him and bringing him straight home.

It’s ALL in God’s timing and ALL in His hands…

sorry this was so long.. there is just so much.. lol.. and I want to keep you all informed as much as possible.. Thank you from the bottom of our hearts for your prayers!! Our Crazy Life…

God Bless
xo