Friday, February 15, 2013

Blessings in Disguise

Let me just start by saying that when I left my house with Ryan at 7:30am this morning heading for our regularly scheduled feeding therapy appointment at CHOC Rehab, I never would've imagined that I'd be sitting here in the CVICU typing an update on my little guy while watching him sleep in a hospital gown with wires stuck all over him.  I think the massive headache I feel trying to push it's way into my brain is partly from trying to process the "what the heck happened" compounded by the fact that I didn't get to finish my dang coffee this morning!  But now that I have a minute to sit down and rehash this (on my laptop, no less...HUGE THANKS to my mom for watching Dani longer than expected and then dropping off my necessities and a few extra comforts from home here at CHOC after she dropped her off at preschool), I'll try to detail what exactly happened this week that led to today, and why this hospital stay is actually a big blessing in disguise.

So a week or so ago, we were putting Ryan to bed and we put his pulse ox monitor on as we always do.  His sats are usually 99/100, but that night they were hanging out in the mid-low 90s.  He wasn't really acting sick other than that, so we turned his oxygen up from .5L to .75L and he started satting higher and slept fine.  The next few days were pretty normal, but he started to show more signs of reflux.  He would cough in the morning when he woke up, and sometimes it would make him gag and he would throw up formula.  It wasn't completely out of the norm for him, but it was slowly getting more frequent.  So I called GI twice this past week to ask about it.  The first time they said to increase his prevacid from 3.0ml to 3.5ml once a day.  So we did.  The next time I called was because I vented him after a feed and a small amount of grainy red stuff that looked like maroon sand came out of his stomach.  They said it was probably blood, it could be from anything, give an extra dose of prevacid that night and bring him in if it happens again.  We did the double dose and the blood never showed up again, so we left it at that.  That was on Tuesday or maybe Wednesday, I can't remember.  Then Thursday morning we had physical therapy and feeding therapy.  I explained the issues that Ryan has been having the the PT and she had him start wearing this support vest called TheraTogs.  He seems to like it, and her hope was that it would kind of pull his organs in his core together and give them some support to work more easily and relieve some pressure build up.  He wore it yesterday whenever he wasn't getting a feed or sleeping, and I brought him to his feeding therapy session in it this morning because his PT was going to stop by and see how it was working out.  I was actually amazed with it because even though he was coughing like he normally does in the morning, he wasn't throwing anything up!  So I get to feeding therapy all excited that he's not throwing up, and I take him out of his car seat and put him in his feeding seat, and he just starts coughing up a storm.  He was turning red and coughing/gagging like he was trying to clear his throat but couldn't bring the gunk up.  I finally held him upright and pounded his back a bit to help him clear it, and then when he settled I put him into the feeding seat and he promptly fell fast asleep.  He was wiped out, and there was no way he was going to eat any squash that morning.  So I was talking to the therapist about what's normal for him and she said, "Does he always sound this bad?"  which is when I realized, geez, he really does sound bad.  I think when you are taking care of a chronically sick kid, sick becomes normal.  You focus on the sats and the monitors and forget that he's not actually supposed to sound like that.  That's when I decided I should probably get him seen right away. 

So, I did what any other crazy mom does and I walked myself and Ryan over the pulmonary clinic to see the pulmonologist.  I mean, we were right there, right?  We got really lucky because Dr. Y was working the clinic today and she knows Ryan from the NICU, so we were able to get in right away.  She got all caught up on his latest hospital visits from the RSV on, and then she asked about his behavior over the last week, etc.  His sats were not great, he was hanging out in the low 90s on the .75L, so they put him on 1L and she gave him an extra nebulizer treatment.  She said she was concerned because his lungs did sound crackly to her, and she didn't know if it was a virus or if he aspirated some formula during one of his reflux/throwing up episodes or if his lungs are just weaker from the RSV he had.  She was also concerned because she knew that his latest echo at the cardiologist showed that the pulmonary hypertension was back and "moderate".  So then she asked, "How do you feel about admitting him?"  Uhhhh, how do you feel about a root canal?  KJSHGKSJD:FJLHSLDJKFHLSKFJDHSKL.

Normally, if I didn't think he really needed it, you all know me and you know I would fight like heck to make sure we weren't admitted for no reason.  But, once I let the words sink in, I realized it actually made sense.  He's obviously not doing great this week since he's on higher oxygen and his sats aren't as high as usual.  He's coughing more, even if it is only in the mornings, and he's throwing up more.  Since we don't have Dr. House and his team conferencing in a room with a white board trying to figure everything out, getting admitted really is the next best thing.  We need all the specialist to have access to him in one place so they can get this sorted out and he can feel better.  So, I didn't put up a fight.  I asked a lot of questions about what it would entail and how long we would be in, etc. and hopefully it won't be long.  Of course she couldn't give me a definite answer, but she said she'd want everyone to check him out and tweak any meds that they think need tweaking, and then we'd need to see some improvement.  The reason she thinks this is the best option is because it's not something acute that she can just treat and follow up in a few days or weeks, this is a chronic problem with his lungs and heart that is slowly getting worse.  They don't know exactly what will help, so they need to monitor him until he gets better so we don't just keep trying things that don't work and extend his discomfort.  Totally makes sense.

So, here's the blessing in disguise part.  First of all, the prayers you guys are sending are definitely working.  I've been praying so hard for just answers, and we've already got some!  Once we got checked in to the CVICU (Cardiovascular Intensive Care Unit), I talked to a very knowledgeable NP who got his whole history.  I also explained how we aren't sure what's causing this, whether it's a respiratory thing or a GI/reflux issue, etc.  She was on it.  She ordered a chest x-ray, EKG, echo, and then when I also mentioned that we REALLY wanted to see the neurosurgeon because he's out of network for us if we go to his office, but he's in network if we are inpatient and he sees us at CHOC, she also ordered a head ultrasound and said she would have him paged, too!  I felt like things were really happening for a reason, and this will all be worth it.

Time for the GOOD NEWS!!!  First, and this is all going to be out of order, but bear with me.  The tech who did the echo remembered Ryan, so he was willing to talk to me about what he saw, which always makes me happy. :)  He was the bearer of good news when he said he didn't see the pulmonary hypertension.  Like at all.  So, that makes Dr. Jen (disclaimer: I am not actually a real doctor) think that Ryan probably did/does have a virus, which probably started when we first had to turn up his oxygen about a week ago, and was peaking when he had the echo on Monday that showed the pulmonary hypertension, and now that his cough is getting worse, he's probably at the tail end of it.  The chest x-ray does show that his right lung is more gunky than usual, so that also points to virus, and he doesn't have a fever or anything else, so it's probably not anything bacterial.  They drew blood to do a panel to check for viruses and we should get that back tonight.  More good news, we got to see the neurosurgeon!!  Dr. Muhonnen, who works in Dr. Louden's office where we were referred, already stopped by and went over Ryan's head ulstrasounds with me. 

**A little back story on this, skip if you're tired of reading.  We were worried in December/January because Ryan's fontanelle seemed to bulge a bit and we knew that his last head ultrasound showed mild hydrocephalus.  So we got the head ulstrasound in January that showed it again, and we got referred to Dr. Louden.  We made an appointment but had to cancel when we found out he was out of our insurance network.  The receptionist was really nice and even said if we couldn't find anyone else to see him, we could come in and pay a discounted cash rate for the visit.  So, we looked into a few other places, and it turned out the nearest pediatric neurosurgeon that was in our network was in LA.  So we decided we would just do the cash visit with Dr. Louden.  But then, Dave took Ryan to the ENT and they ordered an MRI and CT scan on his temporal lobe which would require sedation.  I figured that the neurosurgeon might also want and MRI and CT scan of his brain, so I called their office to see if they could add that to the order so we could get it all done at once and not have to sedate him twice.  They agreed it would be good to have those images done first, but they couldn't put the order in without seeing him in the office first.  So I called our pediatrician to see if she could put the order in, and the nurse there just called me back yesterday still working on that.  It was another one of those things like the ABR hearing test during the Mic-key button procedure that makes total sense to do together so you don't have to sedate a fragile baby twice, but just isn't easy to get accomplished because of all the medical red tape craziness.  Anyways...it turns out it doesn't matter because....

Dr. M showed me the head ultrasound and said that he didn't even need an MRI or CT scan because he was very comfortable looking at those images and telling me that he didn't feel like his hydrocephalus was of any concern, and he doesn't even think he needs to be followed in the office!  He explained everything to me, answered my questions, and put my mind at ease.  Turns out, Ryan just has a big head like his sister and his daddy.  There are some pockets of fluid in there that are borderline hydro, but he's not concerned at all.  He said he was willing to bet if we had done an ultrasound of Dani at the same age, they'd probably have similar ventricles.  He also showed me some white spots in his brain that might have been tiny brain bleeds that were too small to pick up in the NICU when he was little.  It's so rare for a micropreemie to not have a brain bleed at all, but we are very lucky that his were so small they weren't even detected (if that's what that was).  He said that sometimes if there is blood mixed in with the cerebral fluid it can make it more thick and viscous, which can cause a widening of the ventricles.  The bottom line is, we're really lucky that his brain seems to be doing as well as it can be for everything he has going on!  Oh, and the icing on the cake, as he was leaving, the ultrasound tech walked in and was ready to do a head ultrasound, so Dr. M said we might as well take another free look at his brain, so I got to see an expert explanation of everything I was seeing on the screen, which was so relieving.  This moment alone made this whole hospital stay worth it!

Ryan is resting comfortably now, he's on high flow nasal cannula, but he's satting great and they're already slowly weaning him down.  They gave him a dose of lasix to try to clear out some of that fluid they see in the right lung.  We'll meet with GI tomorrow to figure out the reflux issues, and hopefully we won't have to stay much longer than that.  Thank you for continuing to pray for Ryan.  I was having such a rough time with everything this morning because it all came as such a shock that we were even getting admitted, but thank God we did because it all really was a blessing in disguise.

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1 comment:

urban flowerpot said...

I'm so glad (but not glad)! I'm sure you know what I mean. Thinking of you all <3