Friday, January 27, 2006

The fun of hospitals

Well Evan's GI doctor got back to us around four in the afternoon. She had us do the one hour drive to the Hospital's emergancy room where theoretically she would be waiting to put the tube back in hopefully with out anethesia. Didn't happen. We got there and waited for several hours before she even answered the pages that the ER people were sending her. She took one look at the hole and decided that it was far to tightly closed so that he would have to go under to have it put back in so we were admitted. All tond I had to entertain a cranky shild five hours before we got a "room". The "room" was not much of a room. It was actually a curtianed area so you could hear pretty much everything. Evan was super cranky by now because he has been with out any food all afternoon in preperation of the possibility of anethesia plus he had been poked a number of times to get blood tests done and an IV in to keep him hydrated. He was allowed a bottle which helped calm him down and put him on the road to sleep. He woke up super early this morning so I didn't get much sleep. It sure is a challenge entertaining him in such a confined space.

To top all of this off my husband is acting like a bit of a jerk. Complaining that he has to take care of Harry all by his lonesome. Waaa cry me a river. I would trade places with him in a second if I could. I am sure that he would quickly decide that a slightly cranky baby at home is way better than a really cranky toddler in a hospital. At least he gets to eat his own food and relax in his own bed. I am here typing away while Evan is finally napping in a room for the families of patients wearing the same clothing that I wore all yesterday. I would love to have a nap too but it is just too noisy for me to sleep.

I wish we were at the hospital where Evan gets his heart surgeries. I know all of the staff there and you get your own real room with a real bed in it. I guess I have been spoiled and now I really know it. It is not a children's hospital so it does not have the same amenities that are here but then I think you get treated better because they don't have as many kids. It feels so impersonal here. Sigh. I hope that they get on things and get the tube back in soon. I really don't want to have to spend another day here.

Thursday, January 26, 2006

Somebody take me to the loony bin!!

After an afternoon of caring for a cranky baby I pull up Evan's shirt to blow on his belly. What does my little eye spy? A belly that is free of a g-tube, all that is remaining is the hole where it should be. Horrified I hand him to my husband and rush upstairs to get the replacement tube out all the while trying to figure out when it came out. As I try and jam the tube in I realize that my worst fears are confirmed. The hole was closed! [insert your favorite swear word here]!!!!!!!! The only way to get the tube in again is to have another surgery. That means a week of the injected blood thinner (instead of the oral one he is currently on) and three days in the hospital along with several follow up visits with various people. In other words a huge hassle. An enormous hassle in a year of enormous hassles.

I am going to call his GI doctor tomorrow and pray that she will say that we should give him time without the tube so we can see if he looses weight or not. He is already doing pretty good with eating orally so he could pull this off (fingers and toes crossed). I just had not envisioned the tube coming out permanently this way. I had thought that my safety net would be there for at least a year after he stopped using it. It would be there just in case.

I am feeling a bit paranoid since pretty much for his whole life he has been tube fed. I never had to worry about making him balanced meals because I had the tube feeds as a kind of back up. Now I have to try and trick him into eating his veggies and all that fun stuff that parents of normal toddlers have to worry about.

We did eventually find the missing tube. It was nestled under Evan's blanket in his crib. It had to have come out at nap time since I had used it for his morning bolus. Every other time it has been pulled one of Evan's caretakers has been to blame and the extension tubing has been hooked up to the button. A long tube with things that will catch is asking for disaster so we try and not have the extension tubing in more than necessary. It was not in for this nap so there is a mystery here that may never be solved.

Tuesday, January 24, 2006

It is confirmed

We have a tooth coming in *sigh*. I just got through the whole teething thing with Evan only a few short months ago and now we are starting all over again. I also think that it is sad that Harry will have teeth before he can even eat real food. I guess that means we will not have to mess with baby food. He will be ready to chomp down on a steak before long. Both of my babies got shots today. I put Evan down for an early nap because he was looking tired. I hope he sleeps because I want a nap too.

Monday, January 23, 2006


This has been one crazy busy week for me. To top it off I think that Harry is teething. He has this white line in his gums and when I feel it I think I feel something tooth like. Should a two month old be teething? I don't think so! I though Evan was super early by popping one out at four and a half months. I go to the pediatrician tomorrow so I will have him look at it. It could explain why Harry had not been going to bed like a good baby. I had to actually let him cry himself to sleep tonight. I felt like such a bad mommy but nothing I was doing was helping so I did nothing and now he is asleep.

I am hesitating to give him tylenol until I talk to the doctor because giving drugs to kids under three months can be tricky. They tend to hold on to them since their bodies are still maturing and some of the systems that clean the blood tend to not quite work as efficiently. This was brought home to me when Evan was a baby and in the hospital. The nurse gave him some morphine for pain control and he stopped breathing. Talk about freaky. Luckily there was an RT right there and she started bagging him while the nurse called the doctor down to give Evan a drug that would reverse the effect of the morphine. It was pretty intense for me since I was not used to seeing that sort of thing.

Topic change: I swear I am going to squish Evan's hampster like a bug. The little turd is incessantly chewing on his cage. He actually broke one of the bars by pulling it off of one of the the cross bars. Luckily he was not strong enough to pull it back enough that he could escape because if he had I would have just had my husband set a rat trap to get the bugger. I am so not having a rodent running free in my house. He is not a very friendly creature, probably because we don't handle him enough but we have very busy lives and he is mostly Evan eye candy any way. Evan loves to watch him move around in his cage. His shrieks are incredibly piercing.

Monday, January 16, 2006

Pretend Friends

I should be in bed but I need to write. I have been pondering lately about the nature of my online friendships and if the fact that the friends that I spend the most time with them makes me pathetic or not. I am a recluse by nature and love my alone time (this has been a bit tricky for me since I got married and had kids) so it is hard for me to keep up on real live friendships. Growing up my friends were friends of convience. I never really keep friends more than a year at a time. I would pick one or two out from my class and hang with them during the school year but once summer came I was a homebody and spent a lot of time reading alone in my room.

Now that I am an adult and summers of reading alone in my room are no more (sigh) my real life friendships are even more spotty and sparse. My online friends however have stuck with me. I have one that I have known for over five years. That boggels my mind. I have never before had a person that I talked to on a regular basis for that long. She has stuck with me through my marriage, several moves and me having kids. Her wisdom has kept me from killing my husband and she has given me many tips on raising kids. She is a great older mentor to a young crazy mother.

I have other women on my buddy lists that also have helped me through tough times. Often these conversations happen late at night when the kids are in bed and we should be also. But it is soo nice to be talking with another adult that you keep typing away. I could never do that with a real live friend because the people I hang with go to bed early like sane people. In fact as I started typing this paragraph one of my good friends came on and it is 1 am where she is. I think that I will not let myself feel silly for having friends that I have not met. They are real people and hopefully some day I will get a chance to meet these great people face to face.

Tuesday, January 10, 2006

A loong day

I am exhausted. Trips to the city always do that to me because they are never for fun, always for doctor stuff. My husband got the day off to come and help and ask his questions of the cardiologist. Nevermind that I have already told him the answer, he must ask someone else and get the same answer that he got from me in the first place. He was a help though and was useful for holding and hauling Harry around so I will forgive his annoyingness.

We started out by leaving early to visit some friends that we have in the city. I actually met the wife and baby son while Evan was in the hospital for his stroke. Her son was in for pH probe to test for reflux and an eating evaluation. We both were able to commiserate over the eating issues of our kids. Evan has progressed much better than her son I think partly because I am more willing to let him eat or not. She still feeds her son baby food and he is over a year old with a good mouth of teeth. I tried the whole baby food thing but because Evan was not into eating he would puke it up at me. Once I let him try his own finger food at his own pace he really started taking off. She is not as willing to let him try it himself but then she also has a more intense personality than me.

After a nice visit in which Evan showed off his mad eating skills to his friend we made our way to the hospital for the appointment with the cardiologist. Despite leaving 20 min early and only having to go a few blocks to get to the hospital from my friend's house we got there right at the appointment time. Parking and one way streets threw a wrench in my well timed plans.

Evan freaked out while being weighed (25 and a half pounds!!!) for some odd reason. He always hates being placed on a scale. His sats were in the low 80s which is ok but not great. The pacemaker interrogation went fine. The guy that did it was obviously not used to working at the hospital because he asked if we had had the pacemaker surgery at another near by hospital. I was like umm why since they have a perfectly good pediactric heart surgeon here. Evan was kind enough to show off his walking ability for the cardiologist and her nurse practicioner who were both very impressed. I really like that the doctor is not distant with her patients like many can be. She is always very willing to pick up Evan and interact with him. She never minds when he acts like a toddler which often means that she might not get to listen to his heart as much as he would like because he wants to see the sethescope.

The echo was the thing I was really worried about going well. Evan can be very squirmy and hates to be restrained in any way if it stops him from getting something he wants. I brought some Baby Einstein which he is addicted to and chocolate which he is also a huge fan of. Both of those along with a light thingy
kept him suitably entertained long enough for them to get the images they needed.

His surgery is going to be in the spring sometime after his birthday. The cardiologist then dropped a bit of a bomb on us by saying that they would probably be doing the fontan in the fall after he had some recovery time from this upcoming surgery. This is because he is growing so well. I am happy at the thought that his major surgeries would be over before the end of the year. It also makes me even more glad that Harry is on formula since I will be spending so much time in the hospital with Evan this year. Of course there is pacemaker maintanace and other things that could be thrown at us so I will never think that he is totally done with surgery but this is a nice step.

Harry decided to be a stinker this evening. He puked up his late evening bottle and after the bath and other fun decided that he was not going to sleep unless it was in my arms. I was just too tired after the busy day to deal with that so I let him fuss a bit after jumping through all the usual hoops to get him to sleep. He settled down without too much crying thank goodness (I would have caved if it had gone on much longer).

Sunday, January 01, 2006

A sad, sad thing

Yesterday my excitement was going to my friend's apartment and helping her clean it because she was moving out. It is kind of sad that I jump at the chance to help someone clean just so I can get some conversation with another adult that is not my husband. That is part of the fun of being a stay at home mother. I love it!