The Stuttler Family

Well, Devin is doing great with his new Diuril dosage.  But now he has a cold :(   He isn't too bad though, just not well enough to go to the sitter.  He has a cough with a little congestion, the icky nose and the highest his temp has been the last 3 days was 99.5.  I'm not too concerned if he spreads it to us because if a heart kid is doing ok with it, I think any of us can  :)  He saw his pediatrician yesterday and he said he should be fine by Monday, just have to let it run its course.  Tis the season!  Devin also got his 2nd shot for the regular flu.  He's due for the 2nd H1N1 shot around Dec. 3rd. 

 I've worked a whole 2 days my first week back to work, lol.  I knew I should have just waited, what do you do though.  Devin is really enjoying being home with Mommy.  He's back to getting into all of big brother's things while he's at school.  Such a little stinker!

For those of you close to us, we will be moving next weekend so watch for an email with our new address.  If you don't get one, let me know if you need it.  And I plan on going back to school (online classes) the week after.  We definitely know how to keep busy, right?!

Thanks for checking in!  Have a great weekend!

~Tara

Dr. Ro said it was time to wean Devin off of the Diuril.  So he will now only take it once a day rather than twice a day.  Eventually, he will be off of Diuril and Lasix completely and just taking Aspirin & Enalapril.  She also said that she was not too concerned with his nailbeds turning blue every now and then.  As long as his mouth is not turning blue there shouldn't be a problem.  Our visit went well even though Devin was quite cranky the entire time.  He was able to see his friends Lindsey & Tiffany and even Michelle the CPN from C5.  He was not too thrilled when we had to get his finger pricked in the labs to check his electrolytes either...I'm sure the poor guy who had to get the blood will need a beltone now, LOL.   We have to go back to see Dr. Ro in 2 weeks for another check-up.  We're keeping our fingers crossed that he will not get puffy again now that we're weaning him off of the Diuril.  I think I can drive to Columbus with my eyes closed now!
I started back at work yesterday and have to say that it is nice to get back to normal even though I do miss my boys.  My co-workers were even nice enough to do a grocery shower for me while I was out  :)  I'm very lucky to work with great people.
Thanks for checking in! 
~Tara

The nurse from NCH called around 1pm yesterday and told us to go to their ER for an x-ray to make sure Devin was OK.  We left the house around 2:30 (I packed just in case he was admitted) and got there around 4:30pm.  The x-ray looked great, his O2 sats were great but he was still puffy.  The puffiness never went away yesterday.  The doctor told us to put Devin back on Diuril twice daily until he sees Dr. Ro on Tuesday.  He thought she may have to wean him off of it.  We got home around 9:30pm last night and gave him his usual meds and the Diuril and he woke up looking normal  :)
It was a huge relief being sent home last night.  I was really thinking the worst since he didn't have an appetite yesterday and he was really irritable.  Who knows, maybe he was just having a bad day and Mommy was looking too much into it.  But if I didn't worry I wouldn't be a Mom.
We will finally be able to celebrate Devin's birthday tomorrow with family & friends  :)  
Have a great weekend!

Devin went to St. Rita's on Tuesday for an x-ray and it turned out completely clear.  Dr. Allen took Devin off of his Diuril.  So he is now just on Lasix, Enalapril, Aspirin & Zantac.  But yesterday he woke up a little puffy and his fingernail beds were a little blue for a short period of time.  We called children's hoping it was just a side effect of stopping the Diuril.  They initially said to give him one dose of Diuril daily (instead of two like he was doing) to see if it helps until his appt. with Dr. Ro on the 17th.  Then they called back later in the afternoon yesterday and said to not give it to him to see if the puffiness goes away on its own and to call them if he is puffy again.
Devin woke up this morning even puffier than yesterday.  :(   All the puffiness is in his face when he wakes up just like last time we had this problem.  The only difference is that his activity level has not dropped and his torso doesn't end up bloated once the puffiness in his face goes away.  We called childrens this morning to let them know he was puffier today than yesterday.  The nurse is going to talk to Dr. Ro and call us back.  Hopefully then can adjust his meds to correct this but it does make me wonder if that's only a temporary fix to something that needs to be addressed at the hospital now rather than later.  I was planning on returning to work next week but now its up in the air once again.  I just want Devin well and to stay well.  Did I jinx ourselves when I said that we were home for good? (lol)  I will post an update once I hear something.  Thanks for checking in  :)

We made it home around 7pm  :)    I felt so relieved driving home.  When you're in the hospital with your child it's almost as if you're holding your breath the whole time.  Today I was able to exhale.  I'm also very thankful that Devin has recovered so well and is finally back home.  I know it was a long stay but it could've been a lot worse.  God and all of Devin's angels have really been watching out for him.  And we appreciate all of the prayers everyone sent his way, everyone knows the power of prayer!

Devin is all over the place.  He is so happy to be home.  Nana brought Craig home since Alan is at work & Dev's eyes lit up when he saw them.  I'm sure he will be happy to see Daddy in the morning.

Tonight I will be praying for the other families still recovering in C5.  I know there are two other families that are still draining after their fontan surgeries.  Let's hope they get to go home soon too.

The tube is out!  We are just waiting to be taken to x-ray then they will remove both of Devin's IV's and prepare us for discharge!  It's hard to get too excited about leaving just because we've left a couple times already and had to come back.  We are keeping our fingers crossed that Devin will not be back here until his clinic appointment November 17th.
Have a great day  :)

We had a little scare last night around 7:30 pm.  Devin's artery started to bleed out while laying in bed.  He started kicking when he got excited and Nana noticed blood on the bed.  When we called the nurses in for help his diaper was filled with a huge puddle of blood.  It didn't even phase Devin though.  He kept eating his cracker and drinking his juice.  He was only upset when the nurses had to apply a lot of pressure for the opening to clot up.  When this happens (which is common after a cath) pressure needs to be applied for about 20 minutes.  So he will probably have some bruising when we remove his bandages later.  He is ok now and didn't have any other problems after that.
Devin (& Mommy)didn't get much sleep last night, he was pretty irritable due to the cath and anesthesia.  So he is a little moody today  :)
The doctors said they will do an x-ray tomorrow morning and are pretty sure they will pull the tube tomorrow too!  Devin hasn't really had much drainage at all.  Yea!!!  And his urine output has been excellent so far today.  The doctors are hoping to send us home tomorrow or Thursday.  They are also working on getting Devin the H1N1 shot.  I will feel alot better knowing he's had both the regular flu & H1N1 shot before I go back to work.
Have a great day!  :)

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Dr. Galantowicz came out to speak with us around 4-4:30 and said he looked in on Devin in the cath lab.  He said there was no narrowing (thank God!) and no stents were needed.  The fluid is just reaccumulated fluid from his fontan surgery.  We are one of three families here now dealing with a longer stay due to the fluid taking a while to subside after the fontan surgery.  There is nothing wrong with him.  We just need to be patient  :)  He did say that while Dr. Cheatham had Devin he was going to coil off a couple little blood vessel things they call "feelers" around his lungs so they stop growing into the lung.  A lot of heart kids get these.  They grow out towards the lungs in search of oxygen and if they become too large they can affect the lungs function from what I understand.  It wasn't really necessary for Devin but they just did it since he was already in there and to prevent a future problem.
Thanks for checking in!  My next few updates will probably be boring because we may be here a while just living on C5 with a chest tube.  Devin is doing great and playing and being ornery like normal, just with a tube and drainage box attached to him.
XO
Tara

They didn't get Devin in the cath lab until after 2pm today.  He was scheduled to be in there by 11am but the case before him took longer than expected.  We will get updates every 1-1 1/2 hours.  We're unsure how long it will take because they are not sure if a stent needs to be put in or not.  They will measure his pressures and see if it's necessary (if there really is narrowing).  If there are no narrowed areas  and the pressures are still off we will probably need to use medicine to correct it.  More updates as we get them :)