"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Thursday, May 29, 2008

Never a Dull Moment

Just when we thought Mr. Miraculous was on the mend, he decided to throw us for another loop. Last night he was very hard to get to sleep. He was so tired but seemed like he couldn't get comfortable and everytime he'd settle into sleep he startle, almost like a newborn. At 11pm he woke up for about an hour and then at 4 am he woke up and threw up all over himself, his bed and his monkey. It was his strawberry/apricot bedtime snack so I thought maybe the strawberries were just too hard for his digestive system. I didn't understand that since he had them a few weeks ago and did fine, but figured maybe it was really bothering his reflux or something. After he woke up for the day, he wouldn't have anything to do with eating breakfast. He did chug 4 oz. of milk which he never does. We're lucky if we get 1-2 oz. in at each meal so this was unusual but I figured since he didn't eat anything he was filling up on milk. I secretly made it 50% half and half so it was still a ton of calories. Well, five minutes later he coughed and puked his milk everywhere. We had our follow up at 10 so I figured I'd tell the doctor about this and she'd say he had the stomach flu and send us on our way. By the time we got there, he had diarrhea too. After looking at his labs from St. John's she decided she wanted a urinalysis and more bloodwork to try to rule out something bacterial. She was thinking of putting him on Omnicef, but didn't want to aggravate the diarrhea problems with an antibiotic so she sent us back to St. John's to the outpatient lab. She said that she most parents aren't thrilled with the techs at DePaul when it comes to drawing labs on little ones. There was a big accident that closed two lanes just north of Dorsett so we sat and sat and then finally got there around 11:30. We didn't leave until 2:30! His blood draw went great (well, as great as it can for a baby who doesn't want to have a needle stuck into his arm for the third time in five days) but when we went to collect the bag with the urine sample, his diaper was soaked and the bag empty. He had had a whole small juice box at the ped's office but refused the water he was offered at the lab to try to get him to make more urine. Then he fell asleep. Then Mookie was hungry so we went to the cafe while he slept. I bought him an V8 fruit drink and after he woke up he drank some while we played puzzles for a minute in the lab waiting area. Another bout of diarrhea later the bag had urine and we could turn it over and get home. It made for a very long day. Mookie was so good with all the waiting and such a big girl to carry her drink and her food in the cafeteria. Poor Connie fell asleep on the way to both places and woke up every time we got out of the car and then slept for about an hour at St. John's and then fell asleep again on the way home. We went to Grandma and Granpa's to visit because Grandma hadn't seen Connie in about three weeks. He wouldn't eat his late lunch but he did eat a 1/2 cup of vegetable beef soup and 1/2 a saltine. He got increasingly clingy and whiny and fell asleep again. I thought he seemed rather warm so I took his temperature a few times and it kept climbing. He normally runs in the low to mid 96's so by the time it was 98 I gave him tylenol. He started to go back down and perked up a bit. He had a blowout diarrhea diaper so we changed clothes and came home. I did get him to eat about 1/2 cup of vanilla yogurt while I gave him his meds so his overall intake today was 1/4 of what it normally is. I'm a little concerned about his weight too. At St. John's during his inpatient stay, his weight on their scale was 22 lbs. 10 oz. I was a little bummed, but chalked it up to it being a different scale. Well today at the ped's office (again a different scale) they got him at 22 lbs. 4 oz. That is the exact same weight as in the beginning of March on their scale at his 12 month check-up and this time it was with clothes and a full diaper! This illness is coming at a bad time, when his weight is being super scrutinized. The GI doc threatened that if he went below 22 lbs. 1 oz that he'd not be able to keep the tube out. Hopefully she'll either make an exception since he's been ill during his trial run or else he'll pack on some pounds before the big weigh-in on June 10.

He's resting more comfortably tonight and has not vomited since this morning so hopefully we're on the tail end of this virus. The ped's office called to say that the labwork all came back and his numbers were still dropping so that's a good sign. No antibiotics. I'll continue to monitor his temperature and if he runs anymore fever I'll call and see about the next step.

Thanks for looking in everyone. We appreciate your thoughts and prayers.

Tuesday, May 27, 2008

We've Been Discharged

Sorry for the delay in updates. After we got home around 3:15 we all took turns taking naps to try to catch up on some sleep. No one got much at the hospital. Right before we got let go we had to be moved to the hallway because of tornado warnings in the area. They said they have a three leveled weather alert system and any warning that is a 2 or 3 means we have to evacuate the rooms. That was great b/c Connie's neighbor was about a 12 year old girl with a hacking cough. Think non-stop. Even his nurse said to keep him facing away from her since she was coughing so bad and he didn't need that. I quietly asked her if she could make the girl wear a mask so our nurse passed masks out to all the patients in the hall as a precaution and that way it didn't single out the girl.

The in-house pediatrician and Dr. Bruns (Dr. Bromberg's partner) viewed this morning's echo and chest x-ray and both felt they looked fine. Until official word comes back on his cultures from the lab, they are calling it "just a virus" of some sort. He was given a final dose of IV antibiotic (don't even remember the name) and sent home to follow up with Dr. Davis (the pediatrician) either Weds or Thurs. I think we're going to shoot for Thursday b/c Connie's got PT first thing in the morning and it would probably do him good to be "left alone" for a day. He was not too happy today and all that is involved with staying in the hospital was starting to wear on him a bit. I hope this isn't the beginning of being afraid of medical personnel. He's typically been so open to all the people but this morning they woke him up to do his echo and the tech didn't make much of an effort to be his friend, if you know what I mean. Same thing at X-ray time. He'd just fallen asleep for his afternoon nap and they came for him. We woke him up, undressed him and laid him on a cold, hard table to take two pics of his chest. Poor baby. Mookie is very happy to have Mommy home now too.

Now that things have settled down, I have remembered I need to thank Caryn, Adam and Mrs. Dressel for offering to stay with the girls until Grandpa could arrive Sunday night and also thank Grandpa George for dropping everything to come on a moments notice and last but not least, thank Grandma Marybelle for staying the night and taking care of the girls Monday so that Greg and I could be with Connie. Your help was so appreciated!

Most of all we want to thank God for watching over and protecting Connie during this illness. What seems like a little fever and runny nose to most people can quickly turn scary for our little miracle. Greg and I couldn't get the thoughts of two heart kids who recently passed away unexplicably from "just a virus" out of our heads so we decided to err on the side of caution and get it checked out. We are glad we did.

Funny note: The RN that saw us first in the ER listened to me explain his heart history, read the paper that U of M told us to give to any ER personnel explaining his condition and surgical procedures and then asked, "So this Double Switch, is that an operation?" Then the in house pediatrician from early Monday morning said, "Let me get this straight, he has Transposition that's been corrected?" I said, "No. He has congenitally corrected transposition. He had a repair called a Double Switch." I don't think she ever fully understood what I meant. It definitely feels surreal to me that when we are out of our small cardiac circle of medical professionals how his condition seems to puzzle everyone. Even his nurse practitioner that saw him today has a daughter with CoArctation of the Aorta and had surgery and after finding out we had his surgery in Michigan and no, we weren't from Michigan asked, "How did you go about finding a surgeon in a different city?" She was just blown away by that. The ultrasound tech said over and over how complex he was and how hard it was to get a look at his valves because his anatomy was so different. She does heart echos for a living and has been doing it for 18 years! Hard to believe she was puzzled by his defect. That said, we have absolutely no complaints about our stay at St. John's . Each and every nurse, PCA, doctor and tech were friendly and offered to get us anything we needed. That's pretty unusual these days to not get at least one person whose having a bad day. We would highly recommend them for peds and peds emergency.

Monday, May 26, 2008

We're In the Hospital

Conway was admitted last night following an ER visit for fever, chills, not eating and being inconsolable. The did a chest X-ray and blood sample in the ER and turns out it was a good thing we came. They normally get concerned with an elevated white blood cell count over 15 and his was 31. The good news is they were not new cells, they were mature, which means they could be in response to stress, not an acute bacterial infection, such as endocarditis (infection of the heart). Now we are waiting on cultures (24-72 hours) to grow out and they are doing an echo first thing Tuesday morning to look for vegetation around the heart valves, mainly the aortic. He is looking and acting much better today, even jumping on the bed! Can't really write more now because he's currently pulling on his IV and I'm trying to type this in the Ronald MCDonald room at St. John's. He's in room 399 @ St. John's Mercy. Everyone is so impressed with him and how good he is for all the stuff they are doing to him. He really has been a trooper.