Last night, around 3am, I was tossing and turning in bed so I decided to get up and get a drink - even though I had a water bottle right next to my bed. Normally I don't get up, I just drink my water so I don't know why I decided to get up, but I did. I believe the Lord woke me up because the nurse stopped me in the hall and told me Dillon's fever was 104.3! She had given Tylenol an hour before when his fever was 102 but it went higher. I think it spiked higher because in an attempt to cool him down she had him in a diaper with cool cloths on his head and a fan blowing on him. I think it gave him a chill which would spike the fever even higher. So we removed the cloths and fan and waited a little bit. We also changed his CPAP mask to the one that does not have a "hat" to allow his head to cool down, but then his oxygen levels were struggling. So I had the nurse give an albuterol treatment and the vest and he calmed right down. He needed the vest to break up the junk in his lungs. I went back to sleep around 5am when his fever was down to 99.
The day was rough with Dillon, too. He only had a little bit of a fever around 1pm but he is still SO TIGHT! The only way to keep him calm is to hold him. If we don't hold him he gets so tight and his heart rate goes up. I sat on the sofa and held him till I could feel parts of my body any longer - but he did sleep some with the CPAP. Daddy ate dinner and then has been sitting on the sofa holding him all night with the CPAP on. The doctor did order a new nebulizer for him today too. Plus he has now had 3 doses of antibiotic. The doctor is warning me that even though his oxygen levels are good now, he isn't coughing the secretions up so when he does start to break them up he may not be able to maintain his oxygen levels.
We really need prayer that he will be able break up the secretions that are settled in his lungs and when that does happen that he will be able to handle his oxygen levels!! Thank you!
Vision therapy 8:30-9:20am : Dillon was using his right eye for the fist time in a LONG time today. She is thinking that because of the scratch on the left eye his brain shut that one off and was using the other one. Which means we probably want to start patching so we can start to force the right eye to get stronger and then try to get them to work together.
Acupuncture 9:50-10:20am : Dillon had a few more points put in today because he has been sick. He actaully relaxed his muscles during it which was good, but then shortly after he was back to being as stiff as a board.
Ophthalmology 11:00-12:pm : Once we finally found the building we were good to go! (We had their old address since they haven't updated the internet!) Dillon was so tight and stiff I had to hold him on my lap the whole time! The doctor said his left eye has healed, however the right eye has scar tissue due to being dry. I just found out last week from one of my night nurses that they no longer had the order in the book to be giving the eye gel at night to keep his eyes wet during the night. I have NO idea how long ago that stopped, and it should NOT have stopped. People are failing to do their jobs and I am not happy about it since he now has scar tissue on his cornea. Someone in the office messed up and didn't put it on the next month sheet and then the nurses messed up because they are supposed to be checking the sheets every month to make sure they are right. Since there was never a DC order (discontinue) it should not have been ignored!
Pediatrician 12:50-2:00pm : Dr Gelman listened to Dillon and thinks we are catching a pneumonia at the beginning and started him on an antibiotic. I think he has been struggling with a stomach thing and the pneumonia must just be getting started. So back to see him in another week.
Obstetrician 2:30 - 3:45 : The baby's heart beat was about 147. I had some sugar in my urine, but once I told her about our day and that I have had some coffee and Wendy's for lunch etc she wasn't too worried. She just told me to eat less carbs before my next appointment in two weeks. The baby is measuring fine and everything seems good. The baby is head down now and at this point they would not expect it to move out of that position. I have gained 33 pounds!!! Ahhhh!!! With Dillon I gain 19 with Jay I gained 25, what is with the 33 pounds and still over a month to go!?!?!?! I know I know it is normal, but still.....means more to lose afterwards! :o(
Then we went to CVS to get Dillon's medicine and finally home. I don't know what has been going on with him. He is not acting like he normally does with pneumonia, he isn't acting like he does for a stomach bug, he is doing some strange stuff with being stiff. And when I say stiff I mean so stiff you can NOT make him bend; and if you do your strength will run aout before he gives up! I don't like when he is changing his behavior, I like when I can figure out exactly what is wrong and fix it. Please just pray for him to get better with this antibiotic. Thanks!
The best part of today was JayDonn - he was so well behaved! I don't remember having to talk to him at all really. He was so good for me! And it was such a long day. He ate 2 5 piece chicken nuggest from Wendy's for lunch, plus some french fries... he was a hungry little man on top of it all. Praise the Lord because I was stressed out enough with Dillon, I am so thankful Jay was well behaved!
Here is a dialog between JayDonn and I on the way home from church tonight:
Mommy: Are you going to kiss our baby? Jay: Yes Mommy: Is Dillon going to kiss our baby? Jay: Yes, ummm no he is going to cough on the baby. Mommy - after I stopped laughing: Should we help Dillon kiss the baby? Jay: No, his mouth doesn't work. Mommy: Should we help baby kiss Dillon? Jay: Yes, on the cheek.
He is a crazy two year old!
It was so sweet this morning after Sunday school Jay told me right away about how Hannah cried and God gave her a baby boy. I asked what her baby's name is and he told me Samuel. He is learning - for all those who work with two year olds in church, they DO learn from you! I know it seems like they don't (I have taught in there before myself) but they really do absorb a lot!
This morning we went to acupuncture with Dillon as we try to do every Monday morning. When Nurse Robin carried him in Jay made a comment that Dillon was crying. Huh? Dillon doesn't cry... Well he did have tears coming out of his left eye. Soon it was red and puffy and he was having a lot of seizures. The eye kept tearing and he was making the meanest faces I think I have ever seen Dillon make.
About an hour later, when his eye was STILL red, puffy, and tearing, and he was still making mean faces at us, we called the doctor to see what we should do. He didn't have an appointment until 5:15pm but did want to see him tonight. Dr Gelman put a orange dye in Dillon's eye and then used a UV light to look at it. Sure enough there is a (in my opinion) HUGE scratch below the pupil. I got to see it and couldn't believe how big it was. The orange dye turned green and the scratch was a big green area. I estimate it was about 3/8 of an inch long by about 1/8 inch high on the one side and was triangle shaped.
Best we can tell the nurse's hair must have done it, the Doctor said anything could have done it, including hair. Where she carries Dillon on her shoulder there is nothing to scratch it except her hair....Note to self and others who care for Dillon - watch out that your hair, jewelry, zippers, coats, etc are not in the way of his face when you carry him!
Dr. Gelman put him on a 7 day antibiotic eye drop and said we have to see an optho in 7 days. Whenever there is a scratch on the eye like this they must follow up with optho. I didn't like my last optho so Dr. Gelman gave me some names to call tomorrow and try to schedule with.
Poor little man! Of all the crazy things Jay does in a day I am surprised Dillon gets these kinds of injuries and not Jay! (Not that I am complaining that Jay has been safe and healthy.... just surprised.) Speaking of Jay - a funny thing he told me the other day I wanted to share with everyone. He was playing with a toy truck, horse and horse trailer. They had an accident and the horse got hurt so I asked him if the horse needed to go to the veterinarian and he said yes. I asked him if he wanted to be a veterinarian and he said, "Yes. I don't like lions, Daniel can take care of the lions. I don't like lions, they bite me and eat me. Daniel can take care of the lions." hahahahaha I am always amazed at how a two year old's brain works!
Our first time at Chuck E Cheese.... Jay LOVED it! He caught on very fast about the tokens and how they worked. He had a blast! The yellow car (see below) was his favorite riding toy and he loved to climb in the oberhead tunnels and come down the slide. I have a feeling we will be hearing about this for a long time! :o)
Dillon got very upset about something and would not calm down until we got him home. I am not sure if it was too loud, too over stimulating in another way, or if he knew it was a fun place, etc. He was trying to stand the whole time and then the whole time in the car on the way home. I wish I knew what was going on in his mind!
The heart beat was 145-149 this time. (Last time when it was 160's I forgot I had an ice coffee right before I went with lunch.... that might have had something to do with the high heart rate! hahahaha)
I thought the baby is transverse (laying sideways) but the doctor could feel the head and said it is head down so that is good. I am not sure if it is flipping around and is transverse sometimes or not. But she said if there is any doubt they will do an ultrasound later on. Oh, when she squeezed on the baby's head the baby kicked her! :o) Fiesty little one!
Everything is going good with the pregnancy so far, just praying for a safe healthy delivery and a safe healthy baby in a few weeks!
I have been needing to get a bunch of blood drawn on Dillon for a while because of the diet he is on, but I had problems with the insurance letting me take him to CHOP instead of Quest. Truthfully I didn't stay on top of it because I dread taking him for blood work since he is such a hard stick.
We finally got everything together and went Wednesday to the CHOP in King of Prussia. We gave him about 70ml (a little more than 2 ounces) extra water before we went - hoping to pump up the veins. The ladies there were great, but they could only get one vein and out of that vein they got literally 4 drops of blood and it clotted before they left the room! Dillon's veins have a lot of scar tissue they said which makes them even hard to get, and his blood seems to flow so slowly that it won't fill the syringes.
So - Thursday we took him to CHOP main campus. But this time in the 16 hours leading up to it I gave him a little more than 600ml extra water! This is 20 ounces and is almost doubling his normal daily fluid intake! I also took a bath basin with us and sat his feet and one hand in the basins with very warm water for about an hour. Yes, Robin thought I was crazy, and probably every other person there thought the same. However, you could really see his veins better! When all the paperwork was squared away we went back for the blood. The first lady stuck his hand and got about 3ml from it. While she was working on his hand another lady came over and stuck his foot and was getting it to flow great. They ended up getting all the rest of the blood they needed (enough for about 9 vials) from his foot.
Dillon did not like the experience! As soon as they put the heating packs on his hands on Thursday he started fighting and getting mad. I am pretty sure he remembered what they did the day before and knew what was coming. But my little man was brave and did great! I started to feel a little funny after it was almost done and took some deep breaths to calm down. I was worried they weren't going to get it and have to keep sticking him!
Then we walked to find Daddy, who is working at a building a couple blocks away from CHOP, and had lunch with him. It was the first time Robin and I had ever ate from a street vendor in Philly. I thought it was pretty good! It sure helps a long day at CHOP to get to have lunch with my sweet husby!
Then I had to go around CHOP and schedule a few things and try to get the two departments talking that need to coordinate the surgery for Dillon in August. Ortho is looking at Aug 6, hopefully a urology doctor will be able to participate that day as well.
Then it was a long ride home. It took a little over 1.5 hours even though we left at 3:20. Needless to say, I was exhausted yesterday evening, but thankful the blood work is done!