Home again! Day 42

We're home!!! We were discharged last night around 6pm. We had a little mishap with getting the prescriptions but finally worked that out. We don't have details on the his echo yet because Dr. Burns hasn't had a chance to call us yet, but she said everything looked great and that we didn't have to give him the Lovenox injections (blood thinner) anymore. Instead we can give him an oral blood thinner...which is such a relief! When we left, Jet's CRP's were 0.8. His cyclosporine levels were still high so they decreased the dose again. If we could get through all of this without Jet having too many side effects from this steroid, that would be great! It's not over yet! We're just controlling things from home now. Which we'd much rather do.
We slept pretty well last night and Jet's napping now. Trying to get him back on his schedule.
We'll probably just take it easy over the next few days and get back into some type of routine. I'll still post things as we find them out...like the details of his echo. In light of all of this we're actually going to have an echo done on Dax as well. Just to make sure he looks good.
We wanted to take the opportunity and thank you all for your support through all of this. We have some wonderful friends and family members and we know this!!! Thank you, thank you, thank you! We love all of you so much.

40 days and 40 nights!!!

Super short tonight! Jet's CRP's were 1.3 today!!! Whoo hoo! And we'll most likely be coming home tomorrow! They've arranged to do the echo tomorrow instead of Wednesday...they drew blood for labs tonight instead of in the morning so we get an extra hour of sleep...another plus. Hopefully his cyclosporine levels are in the therapeutic range because if they're not, we're staying until they are. I'm anxious to see the results of the echo...I hope there's more good news concerning that. I think that's it for today. Not a whole lot to report...but we're okay with that.

Day 39

These posts have been rather late...but this little man has been hard to get to sleep. Today was about a whole bunch of questions...on our part...on the doctors part. Not a whole lot to post about. Jet's CRP's were 4.3, so that's good news. Hopefully they stay on the downward trend. His rash was a lot less apparent today, probably because they lowered his dose of cyclosporine. However, the levels of cyclosporine in his blood were still pretty high and not yet within that therapeutic range. They skipped tonights' dose and plan on starting again tomorrow but with 20 mg instead of 35mg. So this will be our third decrease of the oral because he started on 54 mg. Dr. Burns is a little "mystified" as she puts it. She said he's an official cyclosporine failure! Don't be confused like I was...there is still purpose in him receiving it as part of his daily regimen for the next six weeks, it's just that it didn't have the affect on Jet like it had on her other patients and that's what she means by "failure." I think that's about it for today...I figure the less eventful, the better! And because I wouldn't be able to really put it into words...this is how Jet pooped tonight. I actually give him high marks for his technique.

Day 38

Today was eventful. So Jet's CRP's were 6.6...still on the climb. And...in addition to that he's developed a new rash. It comes and goes but does this consistently almost 2 hours after his oral dose of cyclosporine.

 

 

These pictures were actually taken yesterday and the day before. I didn't get one today but it was much worse. It stays for a couple of hours and then goes away. It's interesting in its onset because it just so happens to present at the same time the Dr. wants labs for the peak levels of cyclosporine in Jet's body. We'll be talking to the Dr. some more about this.

 

Speaking of peak levels...we received the results of Jet's peak and trough levels...trough right on target and peak too high. So...we've come to the conclusion that the cyclosporine is not working and was most likely not the reason for the decline in Jet's CRP's. It was most likely due to the Methylprednisolone. Dr. Burns has opted to decrease the cyclosporine dose (this did not help the rash) and start giving the steroid (MP) again...also orally. We'll see how this works. She's decreased the dose of the steroid by half. Since it is a steroid I think the lower we start the better. We can always go up.

 

I don't imagine Jet's CRP's will reflect the steroid tomorrow morning. I think that will be Sunday's news. Needless to say we'll be here through the weekend for sure.

 

We had a rough night last night (Thurs.) because...well be because of a certain health care professional wanting to do unnecessary things at midnight. So tonight Jet is OFF of his monitor and not being disturbed between the hours of 8pm and 6am. HOLY HALLELUJAH!

 

Day 37

We've had a slight setback today. This morning we found out that Jet's CRP's were 2.1. They're obviously not explosively high, but they are higher nonetheless. You can imagine how disheartening that was for us. So I just got done talking with Dr. Burns and she said she was on the fence about the next step and asked me what I wanted to do. At first I was freaked...I didn't want to make that sort of decision, I mean that's why I'm here, right? But then I reasoned and realized that either decision is probably going to be okay considering she is offering me a choice in the matter.

The choice is this. Keep him on his oral dose of cyclosporine and since tonight is his 3rd oral dose we would test the "peak" and "trough" levels in his blood. Then, if necessary, we would increase his oral dose. Dr. Burns seems to think this might be the case because Jet is a little more on the what you might call "robust" side of the spectrum. Since first admitted here we have had to increase his IV cyclosporine dose once. So maybe also with the oral? Let's hope.
The other choice would be to put him back on the IV dose because we know it's working. Well, since I eventually would like to give up living in hospitals, I told her since tonight happens to be his 3rd oral dose (you typically test peak and trough levels on the 3rd dose...at least with the cyclosporine) let's just check out those levels since we'll have to eventually figure that out before we got home anyway. So that's the plan so far. I imagine if his levels are in the theraputic range she'll put him back on the steroid, but wants to avoid that if we can.

Here's what I've learned, and for those of you who understand...you can let me know if I'm understanding this correctly. Kawasaki Disease itself is not a chronic illness but it can cause such because of the damage it can do to the heart's arteries. KD is more of an acute illness in that it comes on suddenly, runs its course, and then goes away. Key words...then goes away! I did not totally understand this until today. So, we are not trying to cure Jet from KD, we are treating him while he has it so that it doesn't do irreparable damage to his heart. So this is good news to me, about the only good news we got today. Dr. Burns seems to think that within about a weekish Jet's KD should have run its course given the time frame he's had it already. With that said, he will still be on his medications for several more weeks.

What I've noticed since learning that his CRP's have increased a little is that he's a little warmer today. He hasn't gotten a fever yet, but my gut tells me that he may tonight and nurses have been instructed to treat him with Tylenol. I guess we'll know more in the morning. I hope his CRP's won't increase rapidly through the night. All fingers are to be kept crossed! :)

Day 36

Today was a good day as far as news goes. So what's that? Two days in a row? Jet's CRP's were 0.5. That's below 1, which means we've reached our goal. Yay!!! He's now able to take his meds orally instead of IV. They took him off of the steroid which is good because steroids can wreak serious havoc on the body. They said after about a week we would've started noticing side effects...so thankfully he was only on them for about 3 or 4 days.
Also...he had his Echo today. They sedated him with some oral sedative and let me tell you...if I could get my hands on some of that. I've been trying to decide which nurse I should get in good with here. Dr. Burns came in to talk to us about the results and she said if we were going to get any good news about the echo that the news we got would have been just that! His little arteries have decreased in size...one of them a whole mm, which she said is HUGE! There is one area that has a slight bulge...and we're going to keep our eyes on it. I would have to figure out how to draw this and upload it for you all to see...but for tonight I'll just tell you it could be so much worse! If he has to have a bulge I think it's better to have it where it is. He has another echo scheduled for next Wednesday and some more labs to make sure he's staying on the right track.  He was in a wonderful mood today, and he's gotten some good sleep. Sleep I envy!
I think that's about it as far as today's updates go. I know there are a lot of prayers going on out there...so many people of various faiths. Thank you so much. I know Heavenly Father hears those. We are so grateful to have such wonderful friends and family members who love us. Jet is such a lucky baby. We are so fortunate to have such a beautiful little boy. Actually, we have two!

 

Look what I found! Dax...hospitalized. He makes it look so cool.

 

 

And I just love this one.

Day 35

So...today we did nothing! Which is okay because Jet is still improving so that's all that really matters. His CRP's were 1.2 today and Dr. Burns seemed very happy about that (she high fived me). We were scheduled to do the CT Angiogram and an Echocardiogram but things changed literally overnight. They can't do the CT Angiogram while Jet has a PIC line, and since we WILL NOT be taking that out, the angiogram will have to wait. Dr. Burns has opted to have it done as an outpatient service in about one month. She said that will give his little veins some time to heal. The poor kid is such a hard stick...nobody can find veins on him because he's soooo chunky! I'll take the credit for that :).

We were still going to go ahead with the echo this morning so they told me not to feed him after 4:00am because the echo was scheduled for 9:00am and they were going to have to sedate him. Last night nurses and resident doctors became a little concerned because Jet's temperature was pretty low as was his heart rate. I don't know if you all are familiar with the monitor in a hospital room but essentially when you're hooked up to it, it measures your heart rate, your respirations, and your oxygen. Jet's heart rate stayed in the 70's and low 80's...sometimes going down to 60. With that and a low temp. they didn't feel comfortable sedating him. So they did an EKG instead. It was normal.

I talked with Dr. Burns this afternoon. She wants to increase his Lovenox (blood thinner) because she said the levels in his blood were low. She wanted to start him on the oral steroid but later had a change of heart after talking with another doctor and decided to take him off of it completely. She said the cyclosporine levels in his blood are perfect. She wants to go ahead with the echo in the morning so we're back to not eating after 4:00am, which makes for a lovely morning as I'm sure you can imagine. Dr. Burns seems to think that the low temperature and slow heart rate are a result of the steroid, so we'll see how he does tonight. He is wearing clothes today! Poor kid...normally he gets heated pretty quickly so he's always wearing a light layer. With all the fevering he's pretty much just been in a diaper. Today we put him in some sweats, a tee shirt, and some socks. Poor baby just needed some clothes!

All in all he's doing wonderful today. He's had some good sleep and he's warm :).