Saturday, June 4, 2011

At the hospital stay continues...

Welp, we're still sitting pretty in the hospital. Unfortunately.

Daylon blood pressure has been in the high 150s/110-ish since surgery. This is obviously high for an adult, more or less a 22 month old. He's on four different blood pressure meds without seeing much difference. The renal team was called up to bat again to help with Daylon's care since the kidneys control blood pressure. An ultrasound of his kidneys was done and it showed that Daylon's kidneys are shrinking. As he gets older, he will quickly outgrow his kidneys (especially if they keep shrinking) and he'll need a kidney transplant. You know that sick feeling in the pit of your stomach? Yeah. I've got that. I am praying, praying that by some miracle something happens and this all goes away, but I know that sometimes these things happen. I just feel so horrible for out little guy. This poor kid has experienced so many bad things. Anyway, they've upgraded (I"m not sure that's the right word) his renal condition from acute to chronic, meaning permanent. The PICU doctors have also been called over to our team again. Hopefully with everyone's help, Daylon's blood pressure can be managed and under control before he has another stroke.

new hospital rooms. Every room in the hospital is identical
 The culture from his lungs came back growing a stubborn bacteria that causes pneumonia. Because he's been off and on antibiotics for months, it's probably helped him from actually getting really sick. He's on a new aggressive antibiotic for that.

each room has a 60 inch tv. There are 6 BMT rooms with this big tv and then two small tvs off to the side of it (I have no clue why) and a fourth tv hidden in a pull out wall attached to the bed.
 The culture on his foot came back growing 3 different forms of bacteria. One was staph, another one is some belly bacteria (I have no clue how that is growing on his foot) and the third is a really rare bacteria that I'm told is not normally seen in this hospital. I can' t remember the name, sorry. Anyway, he's on another oral antibiotic for his foot and we're supposed to continue with the bactraban.

At the one year check up they check for a slew of disease and various other illnesses and Daylon's labs came back positive for Hepatitis C. They ordered a recheck and the machine malfunctioned on the results, so a third was taken yesterday. We should get that back tomorrow. If he does in fact have hep C it's probably from a blood product he received. I'm still hopefully that this is all just a mistake.

  The good news is: Brian's here! Yay!

Plus, Daylon had a neuro psych evaluation yesterday and they said that overall, his abilities register at about 13 months. That's great! I was actually thinking that it was closer to 8 months or so. His gross motor is way behind for his age, but his foot has given him constant trouble his whole life, which would prevent him from walking. His fine motor skill and problem solving skill are almost age appropriate and for me that's HUGE! It shows that the brain damage is being repaired and that he's thinking close to like a kid his age. They also said that with what he understands of language and the babble that he's able to make, his speech may be delayed, but it is coming! Woo-hoo! We're beside ourselves with this news! Now, we just need to make him healthier!

 This trip has been a lot harder than we anticipated. I was so excited to get his nutrition under control and now there's several new worries to take its place. Daylon is such a brave little guy. He is poked several times a day and he doesn't fight it. He gets test and procedures done and as long as we're close he's okay. Don't get me wrong, he fusses a bit, but he doesn't scream and fight the way I would have at his age. He's such a fighter and I love him so much.

In the hotel the day before surgery

Sometimes, Daylon reminds me of an little old man filled with wisdom. These expressions are why. He sits like this all the time! It cracks me up!


Mom to Many said...

And the beat goes on. What an amazing little boy...
And what amazing parents... What amazing siblings and extended family.
The Lord is surely carrying you. This journey has required herculean strength from all of you and we know where that kind of strength comes from. :o)

You will be in my prayers.


Claire said...

I really hope that once he gets all the nutrition he needs that his body will be able to heal and his kidneys will not be damaged any further!

so here is for a quick recovery and lots of positive energy sent your way!

Anonymous said...

He does look wise, and so beautiful. Tons of positive thoughts being sent his way.

Jan's Blog said...

And the hits just keep on coming... There's some really good news, and there's some pretty bad news, and he just looks so tiny. I'm a grown adult, and terminally ill, but I haven't been through a fraction of what our Baby Daylon has gone through, and I probably complain more than he does. I was going to say that I don't know how he does it, but I do know. With you are his parents, and the love and care of his Heavenly Father, he's OK, and it seems to me that he knows it. Is that crazy? All babies fuss, especially at medical procedures, but (and I may be reading a lot into this) he seems somehow at peace with it. He must know it's love oriented...all that is done to him. I don't know. I only know I need to know what to do. I'm praying especially for his nutritional needs, but what is the biggest priority right now. I want to fast with something very specific in mind. I pray I'll know what that is. Sending prayers and love and hugs to all. Jan

Jess Edling said...

Yikes. So much good news mixed in with so much bad. Feeling both happy & sad at the same time is giving me a headache, so I can only imagine how you and Brian feel. We will keep praying. We love you guys.

Everyday Edling said...

Jan, thank you so much for offering to fast. I would say right now that the most important thing is his blood pressure. You're such a sweetheart. Thank you!!

Tanya said...

Those pictures are too sweet... and yes he looks incredibly wise!! I think of you all often, sending prayers :) Tanya

Sharon Kaye said...

I'm so sorry for the set backs. I can't believe how much he has gone through. He really is growing up though. He looks like a boy not a baby. It's good to hear that there is progress in many areas. That is so wonderful.

jeanine said...

I agree with my mom... he looks so grown up now! So sweet.

Deborah Jones said...

Daylon sure is a special boy and you and your husband are amazing parents. I still put his name in the Mesa Temple whenever I am there. God bless you all.

Aviles Family said...

He is so handsome! I love the pictures of him and the faces he is making. So sweet. We are always praying for you! Love you!

Anonymous said...

Friends of the Ringgolds and Shellie Hunt- Sending all my love and prayers to Daylon. Keep strong!
The Davidson's

Anonymous said...

Oh Mr Daylon, you look like a little old man. Praying for your body to heal.

Anonymous said...

Sure sad to hear the ups and downs Daylon is going through right now. We are praying that his blood pressure will go down and that they get the infections under control and that there will not be any further damage to his kidneys. He is so sweet and such a beautiful little boy. He knows how much you, Brian, your family and extended family love him and his Heavenly Father. You are such wonderful parents and have so much love for him and so much care and concern. Daylon is very special and such a strong and courageous little boy, he has endured so much in his life and he keeps on enduring more. Daylon and all of you are in our thoughts and prayers and We Love You so much. Praying that things will get better for Daylon and all of you. You have such great faith and love and it shows. We are praying, praying and more praying for Daylon to get better. he is a real miracle. Hang in ther Superman, we love you. Take Care, God Bless. We are here is there is anything we can do for you. Wish there was more we could do for you at this time, but I know prayers are very vital at this time. We miss all of you. The pictures are wonderful and so precious, and a special gift from Heavenly Father. These pictures are so sweet. He truly is a child of God. Hang in there Jen and Brian, we are always thinking of you.

All Our Love;
Myrna & Dwight CA