Monday ... let it begin

Want to start this post with a huge heart felt thanks.  I sit in my hospital room for 24 hours a day.  I literally step out once or twice a day and that is to go down the very short hall way to get ice or hot water and get something out of the fridge.  That's it. 

We're constantly bombarded with people coming and going.  Doctors.  Nurses.  Techs.  Respiratory Therapists.  Housekeeping.  Etc.  But we're still quite alone in here.  It gets very quiet and sometimes lonely. 

So I turn on the computer and am instantly connected to the outside world.  I'm reading of people skiing, going to birthday parties, etc. and am reminded that life is still going on as normal outside of these walls.  It helps me remember that someday we will rejoin them in the business of life. 

I reach out to people via the blog and am completely overwhelmed by the responses of love and support from all of you.  Thanks.

Sunday night .... we slept!!  After he finally fell asleep that is.  He'd had a long nap earlier in the day so by 10:30 and I'm about to collapse from exhaustion, he was wide awake and ready to party.  I put in a Baby Einstein video and he was singing along, dancing, talking, etc.  So precious.  I had it on repeat play and somewhere during the second viewing he fell asleep so I turned it off. 

We had no drama.  No oxygen issues, no gi issues, no pain, no heart issues.  The regular people came in and out but barely disturbed us.  (Might have also helped that my friend Ann had snuck me in an adult beverage but don't tell anyone! And for the record *I* had some, he did not.  LOL) 

6am rolled around and I was dreading it because they were due to turn off the oxygen.  He did pretty well but it's on the border.  That's great news.  Later when the pulmonologist comes in, I want him to clarify his orders of the "gray" area.  If he's doing fine, great, that's clear.  If he's constantly desatting, fine, that's clear cut too.  But the gray area is like what he just did where he bounces back up to 94 or so after going to 80 (the alarm sounds and he stirs and it comes up).  And he did that like 6 times in an hour.  The other gray area is once he does start to desat, how long/what all to try before giving him the oxygen.  And the last gray area is when to try next to wean him.  I'll feel better after clarifications on those things. 

But I couldn't be more pleased with getting sleep.  Only the 3rd decent night sleep in the past 5 weeks. 

10:30 Pulmonologist was here and thrilled at how great he looked and sounded.  I told him it was amazing how well a kid does when he gets all the meds/treatments that he gets at home.  (He still wasn't happy about how that wasn't done initially.)  I had him clarify the "gray" areas I mentioned before and he said he would be more specific on the order.  "Never below 92 for more than 5 minutes" or something to that effect.  I realized that if the night nurse gives me any trouble, the best I can do is use the same wording.  And if that isn't followed, ask her to call the Doc for me for clarification.  With this plan, I hope we won't be fighting for 02 again!  And for the record, it's just when he sleeps that he needs it and not always then now that he's getting stronger. 

Meanwhile 8:30 his temp was 101.2  Gave him Tylenol.  10:30 his temp was 101.5  ugh

Then these volunteers with the hospital showed up with a Happy Valentine's Day balloon.  He giggled, he cooed, he said, 'Balloon' and 'wow'.  The volunteers were so thrilled, said he was the first kid who had even ever acknowledged it!  He made their day. 

At 11:30, they needed to take more blood.  Running a new CK iso, CMP, CRP, Troponin I, BN Peptide.  (Basically mostly heart things and some muscle things.)  So while they were taking blood they found a vein in his foot that wasn't blown and the IV team decided to go in with an IV just in case we needed it.  First stick. No problem.  (That's new!)  Then they assessed the hand IV.  It was flusing beautifully!  Their policy is to basically change it every 6 days ... unless it's a difficult stick kid (which he is).  And we're on day 6.  She decided just to clean it up instead. 

SO she took all the dressing off and they noticed this horrible smell.  She wiped him down thoroughly and noticed there was a cut where the IV had basically imbedded and cut into his hand.  There was skin breakdown where the tape had touched him.  They had tried VERY hard to have very little tape touching the skin... but some had to.  She decided she couldn't continue to use that site and took it out.  Giving it time to heal up. 

In addition, the leg/id bands were also causing skin breakdown.  So they removed them and put gauze under it and put new, looser ones on top. 

His face was precious when he saw his hand was "free" again.  It was on his left hand, his dominant hand.  He was so very happy to have it back.  He's not real thrilled about the foot thing though. 

1:30 Dr. Cuenca (GI) asked how he was doing and I had to report that GI wise he seems stable.  Very happy with it.  I asked if her gut told her that all the problems have been caused by the gastroperesis.  She said yes ... but there is likely something else going on too.  She would LOVE to scope him but just doesn't feel he's stable enough to do it.  She wants to do it as soon as he is.  (Probably outpatient after this hospital thing is over with if the gjtube resolves enough issues to get him home.) 

Can't tell you how great it feels to have a GI team on the case.  I feel like they will follow him, keep him safe, make the right decisions on his behalf.  (And I told her so.)

2:45 nurse came by to tell me that we are likely not going to do the surgery until Wednesday or Thursday.  Tomorrow is POSSIBLE but not likely.  Dr. Cartaya will have to clear him and I doubt he will with such congestion still and the fever that keeps going up/down. He should be by later so I should know. 

6:20 Dr finally came by (busy day around here they say). He said all the labs are coming back better.  All the numbers are coming down.  Heart and liver on the mend! PRAISE GOD!! 

And despite the fever and slight congestion, he's clearing him for surgery when they can schedule it.  Even as early as tomorrow!  That means that if they have the tubing and an open spot, he can have the surgery tomorrow.  If not, we're on for the next day. 

That's hugely good news as it means we're closer to getting outta here! 

Keep up the prayers ... clearly, they're working.  Oh, and while you're at it, can you pray for another drama free night?  Pretty please? 






274, 286