Changes and Adjustments

Well, We survived Dylan's Heart Cath, but let me tell you .... I think that it was much worse this time having to stay in the hospital.... both for Dylan, and for us. I think now that Dylan has been home for awhile, not hooked up to IV's and wires and leads or anything else ( besides his G-tube), he KNOWS what it's like to be "normal" .... and having to be back in the hospital hooked up to an IV and the leads was really hard for him... I could tell he just wanted to go HOME...... which is a good thing..... because I swear that kid thought the hospital was still his home his first month away from it..... but now he knows where he belongs... home... with mommy and daddy. 

One of the things that I was really worried about was having to see him intubated again ........ luckily I didn't have to see it :-)  By the time that they let us go back to see him, he was already extubated and doing good.  The Cath took about 2 hours.  Dr. El Said said that the first thing she had to do was give him a blood transfusion. His hemoglobin level's were at 10 and she said that they would be at 14.  The next thing she mentioned was that his Pulmonary Arteries are narrowing, but she said that Dr. Lamberti can fix that in his next surgery.  Dylan also had two very large collateral's that grew and had to be coiled off.  She said that the collaterals might have been why Dylan's Sats were on the higher side, and that they might drop after having them coiled off............ so far, his Sats have stayed the same... low to mid 80's baseline. They want him to be at 6 kilos, which is about 13 pounds for his next surgery... so with Dylan's weight gain record, we're thinking he might be at that point by the end of August, or early September

Dylan in his hospital gown before his Cath <3

These are the two Collateral's that needed to be coiled off

It's not a great picture, but this shows his Pulmonary Arteries narrowing

 

 

 

 

 

 

Last Wednesday we finally got our appointment with the Gastro docs ( Thanks to Dr. El Said). They didn't really do much for him, except for prescribe him another medicine (ugh!) .... It's called Periactin.... It's actually an antihistamine, but I guess it's also used for relaxing the stomach..... Since Dylan has a "small stomach" to begin with, and after having the fundoplication, he doesn't have much room in his tummy for all of the food that they wanna force in it.  How it was explained to us was that the fundus, is what "allows you to eat two pieces of pizza, instead of one..... it stretches to allow room for more food" ..... and Dylan no longer has his fundus, so they need to find some other way to allow for some more room in his tummy so he won't be so uncomfortable with the higher feeds.  Hopefully this works for him.  They also want to do a stool culture to check for Malabsorbtion and the H Pylori bacteria that causes ulcers since I have a history of stomach ulcers.... only problem with that is that the stool has to be tested within one hour of being passed.... SOOO I guess we just have to hope that Dylan has a poopy diaper when we happen to be up there for one of our appointments during the week..... or that we're in the area of the lab when he does...  so I have a feeling that the stool culture might not happen anytime soon.

We've been struggling with Dylan's feeding schedule for awhile.  He was sent home on continuous feeds because of his small stomach, but it was only supposed to be for a few weeks to try to stretch his stomach a little and then we were supposed to transition to bolus feeds. He's been home for almost 2 months.... ( wow.. 2 months really??) .... and we are not getting anywhere with he feeds.  Nobody wants to work with us. I guess it's his pediatrician that is supposed to work with us and adjust his feeds, and she pretty much doesn't want anything to do with it. ( we switched pediatricians, effective August 1st).  We were trying to talk to every doctor that we saw asking about his feeds, and who is supposed to help us.  Finally his Cardiologist decided to just change his feeds herself, even though it's not really her area of expertise.  We were told that when we take him home from his Cath, to start doing bolus feeds...... 2 hours on, 1 hour off.... and continuous at night for a few days to see how his stomach would handle it and then move to 1 hour on, 2 hours off.  We gave him a week instead of a few days on the change to see how he would react and he seemed to be doing ok with the larger amount of food in a shorter amount of time, so today I decided to change him to the 1 hour on, 2 hours off.......... so he's getting 3oz in a one hour period and then a two hour break......... and he seems to REALLY like it.  It may just be coincidence, but Dylan has been having a really rough week since his Cath, and today was a really good day for him.  I'm thinking that he really likes having his belly FULL.  I don't think he ever got that full sensation when he was on continuous feeds because he was getting only a little bit at a time and it probably never really filled his belly.  I guess we'll see how his day goes tomorrow. Hopefully this new feeding schedule will keep him happy.


Joe goes back to work tomorrow.  It's going to be an adjustment for all of us.  Joe has been able to be here with Dylan and I since Dylan's Norwood.  Now that Joe has to go back to work we will all have to get into a new routine. I'll have to figure out getting to all of Dylan's doctors appointments by myself.  I can' do it........ sometimes it gets hard with his feeding pump and all of his other stuff..... so it's nice to have help from Joe. We're gonna miss daddy being home with us, but we just have to think of this as a step forward....... A step back to "normalcy".  Dylan and I will get into our routine during the day and handle all of his appointments, and when Daddy gets home from work, it will be Daddy, Mommy, and Dylan time.

So those are all of the changes and adjustments that have happened and that are coming up.  We'll get through them.... we always do ;-)    Dylan is getting to be such a big boy!  It's funny cause he's still in some of his newborn stuff... and now into a few of his 0-3 month stuff...... but when it comes to jammies, I think he needs 6 months!  Because he's so long!  The 6 month stuff are WAY to wide for him... but he needs the length because he loves to stretch out completely and he can't do that in the 3 month jammies.... they are to short...... but when it comes to finding shorts for him.... he still needs Newborn shorts... his belly is really skinny.  He's getting SO good at holding his head up. If you have him leaning back against you, he'll use his ab muscles to try and pull himself forward so he can sit up like a big boy <3.  We are so so so proud of him!

We want to thank everybody who thinks about and asks about Dylan every day. We appreciate ALL of the support and feel so lucky to have so many people care about Dylan. <3