Monday, October 31, 2011
Posted by K.M.L at 7:14 PM
Thankfully we are home now, but I wanted to jot down our last few days at the hospital before I forget.
Since the PICC line is in and he finally started drinking chocolate milk, he didn't have to stay attached to the iv line anymore. Freedom!
Thank you again to all of our friends and family that prayed and left messages on here and facebook. They definitely helped brighten our days knowing that you were all thinking of us. As soon as Evan gets the picc line out and if off the antibiotics, we are going to go back up (bring goodies...treats and toys) for the staff, doctors and nurses, as well as the other patients and their families). We want to continue to pray for "baby Jo-Jo" and another little baby. They were still there when we left. One of the first nights, Evan was concerned with a crying baby down the hall...he thought it was Alex, so Mike said, that it was Baby Jo-Jo. So, every time she would cry, he said baby Jo-Jo crying...It helped him realize that other kids were there and that is wasn't Alex. She was always crying unless she was sleeping....we didn't know what was wrong with her, but hopefully the doctors will figure it out and she'll be better soon. There was also another little baby who had some sort of brain surgery too, who we hope gets better soon. It's a tough place to be...so thank you for praying, helping, calling, texting, messaging, etc. We definitely appreciate it!
Posted by K.M.L at 1:51 PM
Saturday, October 29, 2011
Posted by K.M.L at 7:34 PM
Friday, October 28, 2011
Can't believe we've been in the hospital for 4 days already...
Today was tough...
Evan is feeling better, but not better enough to actually do anything...and trying to keep a 2.5 year old boy contained and rested is hard. Thankfully he got to play in his new, bigger room and since he was fever free, we got to go to the playroom. He has been fever free for almost two days now, which is good. He is still barely eating and drinking from getting "tricked" so many times. We don't know when we can leave, but they are for sure not going to let us leave until he is eating and drinking on his own.
Lynne brought Alex up to nurse again throughout the day and they entertained each other for a little bit. :)
One of the hard parts of today was his IV was leaking...so, they tried to fix it without taking the entire thing out. It didn't work, so they tried to put another IV in above his hands. Two different people tried and both times it blew out...so it didn't work. Having to physically hold your child down while he is screaming, trying to kick his feet at the nurses, and trying to hold his hands as still as possible is awful. Having him cry and look at you to help him is even worse. There is nothing you can say or do except continue to hug him and tell him you love him...
Since they never did get the IV back in....he had a few hours of freedom :) He is still wobbly walking around and weak, but he did have fun in the playroom and walking around the room driving his cars and trains.
Since the IV was out, we decided to look ahead to what was going to be needed for treatment. Our options for Evan to get the antibiotics and possible fluid to keep him hydrated, we did not want to do oral medicine (since he's spitting everything out anyway) or the shots. For the shots, he would have to go to the doctor every day for two weeks and get two shots. We thought that would definitely be too much for his body and by the end of the 1st week, he would be a nightmare to get him to the doctor. SO...we decided to go ahead and put a PICC line in. That way, we wouldn't have to keep putting in IV lines and it would be easier to get fluids if necessary.
This is a picture after we had to hold him down to force the anesthesia/sedative medicine down his throat. Thankfully he did manage to swallow some...
Heading down the hall with Daddy to get the PICC line. I couldn't go...I knew from experience that getting a PICC line was tough and I didn't want to be in the room and see my baby like that. Mike said he did better than me :) He did fuss a little, but thankfully the medicine was working and the Child Life worker had him distracted by the IPad. Mike said he was a happy drunk :)
The worst part was after, when the pain medicine wearing off...him crying and grabbing his arm saying "It
hurt". Mike and I (and his parents and my mom were in the room) and we all felt bad. Literally nothing we could do...I was rocking him and Mike and I were trying to keep him from pulling at the velcro to take it off as well as making sure his iv cord wasn't getting tangled. Hoping that the few drops of tylenol we did manage to force down this throat work to help with the arm pain. You know it's bad when the nurse comes in and he says her name and says ______bye bye. Also, when the doctors and nurses come in and tell him what they are going to do, his response is usually to go to the other side of the crib, put his head down and say No thanks....
It was a hard day to keep my composure around E...I just feel so bad for him. I cried a ton today...for his pain. Leaving tonight was awful knowing that his arm hurt so bad and hoping and praying that he would have a good night for Mike.
Thank you all so very much for the comments, thoughts, and prayers. We appreciate it!
Posted by K.M.L at 8:56 PM
Thursday, October 27, 2011
Too many thoughts going through my head...so I apologize if this post is all over the place or doesn't make sense.
Evan has been in the hospital since Tuesday morning. I knew he was sick when I got home from work and he was sleeping on the couch at 11 am. He had been complaining of his lower stomach "hurting" a few times a day for the past two-three days, but that morning, he was in a ton of pain. Thankfully Mike's mom was able to come with me to urgent care to help with Alex while I stayed with Evan.
He was very lethargic and was hooked up to an IV to get some fluids in him since he was really dehydrated. It was so scary how fast it happened. How fast he wasn't feeling well, how quickly he got dehydrated, how fast the nurses and doctors were trying to figure out what was wrong...he looked so sick and looked awful. He would hardly respond to questions, look at anyone, or anything....so so scary.
Xrays were taken, blood was drawn, medicine was given, fever was high, and heart rate was high. Definitely not fun for him or for us. It is and was so hard to see him like this. The catheter had to be given twice to try and get a urine specimen...that was awful to watch. He was screaming and his teary eyes were watching Mike and I, looking at us to help him. It was so sad.
We were admitted to the hospital to stay the night. Found out that he was very constipated (even though he had been going #2 every day) and also had a urinary tract infection as well as a kidney infection. The fever got to be 104* and still was lethargic and just not himself. We had to wait 24-48 hours to get the blood cultures back to see if there was a bacteria infection in his blood. They did start antibiotics for the kidney infection and uti. The hardest part was leaving Mike and Evan at the hospital and taking Alex home. I cry every time I leave...We didn't want to leave Alex there (with all of the sicknesses that go around the hospital) and since he is still nursing and refuses a bottle, I had to go home. It broke my heart to leave, but know he is in good hands.
Lynne and Harold (Mike's parents) have been coming up to the hospital to watch Alex and Lynne stayed at our house on Thursday (and Friday) to watch Alex and then I would just go home or she would bring Alex up to nurse. My parents drove in for a few hours on Wednesday night and they are going to be coming back this weekend. Talking to family and friends has helped. Friends visiting and giving hugs has also helped. We are so thankful for all of the friends and family that have been calling, texting, offering food, sending gifts, facebook messages and praying. It's so hard to see your child like this...and we are so blessed with all of these caring friends.
We talked to the infectious disease specialist this evening and since Evan does have a bacterial infection in his blood, they are trying to figure out how he got it...they still don't know. He tested negative for strep and has no open wounds on his body. They think the bacterial infection in his blood caused the kidney infection. We are going to be getting a kidney ultrasound tomorrow. It is even more scary when the doctors were baffled as to what caused it, 5-6 doctors and residents come into the room at the same time, and said this is very serious and he still isn't totally out of the woods yet and that it was so good that we came in when we did. I can't even let my mind go to that place to what would've happened if we didn't bring him in at 11:30 that morning. I had called the doctor and had an appointment to go in at 3:45 that day, but called Mike and he said to just bring him to urgent care. I think of all of the what ifs if we didn't go then and just waited for the appointment...what would that bacteria in the blood would have done for 5 more hours growing in his little body....so scary.
As of now, he's been doing okay...not too much pain with going to the bathroom (which was a problem the first few days). We will most likely have to stay 7-10 days so he can get the antibiotics through his IV. He is refusing anything oral...the nurses tried tricking him into taking the pain meds. They tried putting it in chocolate pudding, milk, chocolate syrup, applesauce, etc. so now he wants nothing...Today we finally got him to eat a cheeseburger and some apple slices (he hardly has had anything the past few days). Hoping to get him drinking more too.
And then there's this little guy...such a champ! He is mostly sleeping in his crib after mostly Mike and Lynne have let him cry it out (it's much easier with E at the hospital so he can't wake Evan up at night, so it's a perfect time to get him out of his car seat!). He is loving his time with Grandma and loves to play with Evan in the crib too.
We've been playing choo-choos, cars, dinosaurs, and watching tons and tons of movies. I think by the time we leave the hospital we will have seen all of the Disney movies (even all of the Princess ones) :)
We love you Evan Samuel...get well soon. Love, Mommy and Daddy and Alex
Posted by K.M.L at 8:40 PM