8-23-08 weekend

The PICU ward here is brand new, so they don't have that many patients. When we first got here it was Blake and one other girl. A few more kids came and went during the week but now he is the only one. This afternoon there were three nurses on so he was getting pretty spoiled. He has been holding down his feeds this week. He had one or two large vomits at the beginning of the week so they knew I wasn't making stuff up. The nurses were joking saying he was having excercist projectile vomits. The only thing missing was the head spinning. All his tests came back pretty good. They think he might have had a viral infection that wore out of his system by the time we got him in and settled. They also think his meds were causing havic with his reflux. He has seen many specialists. His Pulminary specialist came and saw him and took him off his Theophllyne. That was the med that helped him with his caffeine level and respiratory additive. With out it in his system he began having apneas. He thinks it was making his reflux worse. A side effect of the meds is hypertension and aggitation of his reflux. So his bp has been better with it out of his system. They did an oxi test the night before and found he does a lot of periodic breathing so they put him on oxygen Friday and did another oxi to see if it made a difference. It did help reduce breathing issues so the Pulmanologist is going to keep him on the oxygen. He said since Blake's lungs are underdeveloped still it is going to have to be something he grows out of. Basically he thinks Blake will have to be on oxygen for the next 2 months, but could get off of it sooner. They have also stopped his BP medicine because his bp has dropped into normal range since being off the Theo. Now we are just down to 2 reflux meds, vitamins/iron and a stool softner. Poor man had to have a supository every night because the soy was backing him up and he would scream from not being able to go. Boy did he go once he got it. Blake got to meet all the many specialists possible that an infant can see. We will have to follow up with them so they can monitor his progress.


Dad is doing good. His surgery went great and he is back at home now. He still has to have a nurse come to the house every day and give him shots of thinner and Kumadin and draw his blood. We are going to fly to Ohio for Labor Day. The doctors gave us the all clear so my my dad will finally get to see Blake. He hasn't seen him since he was 3 weeks old.

8-15-08

Well little Mr. man has been having some troubles. He isn't holding down his feeds very well so we went back to the pediatrician. He even vomited up the bottle he ate while he was there all over the room we were in and on daddy. Nice. So she believed us when we said he was vomiting everything. She switched him to a non milk base formula called Nutramagen. We thought that would work. He seemed to do better on Saturday but by Sunday he could not hold down any of his feeds and all his meds came up with them. His doc called every day to check on him. By Monday morning he was very dehydrated. His pediatrician had us come in. He hadn't gained any weight and had some apnea while at home that morning. I am glad he was on his monitor because that sucker went off and I had to wake him up because he ws not breathing. So while we waited at the office to see her I overheard someone asking how long the wait would be. The nurse said she didn't know becuase there were four patients in front of them and they had to admit one. I thought to myself "man I wonder who is getting admitted?". HAHA boy was I surprised when she walked in and told me that I needed to take him directly over to the hospital where he was going to be admitted into the PICU (pediatric ICU). He had another short apnea spell while I was checking out. His pedi came over right after the office closed to check on him. She told me I was not allowed to stay the night because I looked like crap and I needed to go home and get some good sleep...which I had yet to get. He is always waking up needing to be burped through out the night becuase of his reflux. He has yet to have a good comfortable sleep. So once they got him settled in I went home that night and slept till 10 the next morning, fell back asleep till 2. I had no idea how tired I was.

8-13-08

Blake saw the Ophlamologist today. Due to my backgroudn and genetics...he has reallly bad eyes. I prayed and prayed he would never get my eyes, but he did. First his eyes moved back to a stage 2 which is not good, but that is not the part she is concerned with. Apparently he is very very far sighted. She did some tests that showed he is a +7 in both eyes. If it is not treated he will develop a lazy eye and it will cross making him loose vision in that eye. So to correct the problem he is going to have to be put in hard contacts. Yes I said contacts. He could get glasses but they will be to thick and will put too much pressure on his little nose closing off his tiny nostrils making it hard to breathe.

Oh my dad got put back in ICU. They found more clots in his lungs so they are going to do surgery tomorrow and put a filter in by his heart to make sure if any ever break free they won't get into his heart. They are treating him with thinners again.

8-12-08 First visit to the Pediatrician

Blake met his Pediatrician today. I absolutely love her. The Neonatologists from St. David's called and filled her in on his history so she was well informed about him before she met him. She is very caring and listened to all my concerns. He weighed in at 7 lbs. 4 oz. and 19 inches long I believe.

8-9-08

Ok let me see if I can remember things here. Blake passed his oxi sleep test so they let us room in on Friday 8-8-08. He had a kinda hard night. We did not get any sleep. He fussed and had a lot of reflux. We learned how to give all his meds and he threw up on me covering my pants one time. lol the nurse got a good laugh from it. We got to go home on Saturday 8-9-08. He did good on the ride home. I was really sad to leave. We had been there so long, the staff was the closest thing I had to family around me. I made a lot of friends and Blake made even more. They took wonderful care of us and I will miss everyone from St. David's NICU like crazy. I got used to calling Austin and the Ronald McDonald House, home. So his ride home went pretty well. Rob rode in the back with him and I drove since I get so car sick. He only had a couple spit ups. We stopped in Brenham at a Dairy Queen to eat and feed Blake. I really appreciate the bathrooms that have the baby changing stations, because that one did not and it really stunk trying to change him in that gross bathroom. So anywa we made it home safe. Rob had my mother-in-law tie blue baloons to the mailbox, in the hallway by the front door and in the living room. They also got us a cookie cake that of course Rob and my brother dug into before I could get a picture of it. Boyboy (our greyhound) welcomed Blake home. Mason and Maddie (the two Shih-Tzu's were at my mother in laws.) He was very careful and causious. He gave him a small sniff and kiss on the back of Blake's head saying welcome and then went and laid down for the rest of the night. He was not too sure what to think about Blake crying. The night went pretty bad and we got no sleep. He was very fussy from pain from his reflux and gas.

back in

Ok just a quick update. They re-admitted him to ICU yesterday. He has not able to hold down any feeds and was having some Apnea. They have started running tests and trying to switch some things around to figure out what is going on. He is probably going to go back on oxygen from the sounds of things but we will see I guess. Wish us luck.

Update coming soon

Hey guys sorry I have not updated. It has been crazy around here. We are at home now and I promise I will be putting an update on here this week. We are not getting much sleep due to Blake's horrible reflux but we are getting by. Hope all is well.