Keeping up with Four Joneses!

Good morning!  Today we all head home...again!  Austin has had a great couple days!  On Monday, Austin's sensitivities came back from the positive blood cultures on Friday morning.  Dr. Greene switched his antibiotic to one that is slightly less broad and a little more narrow to target the 2 specific bacterias that were positive.  Austin will go home on IV antibiotics...oh boy, another new thing for Mom and Dad to learn!  I promise, neither of us are going back to nursing school! Dr. Kevan stopped in Monday evening...GI is status quo!  We have every reason to believe the budesonide is doing what we want it to, now we just need to give it some time! Only other thing to update is the need for oxygen while sleeping.  Austin has actually required more oxygen over the last few days than last week.  We spoke with Dr. Greene about this and she wasn't surprised.  She explained that he had a very nasty virus and pneumonia for an extended period of time.  That alone takes about 4

Austin had a great day yesterday and so far today!  As you can see in the pictures, we've been able to get out and go on some wagon rides!  At this point, we are just hanging out and monitoring. 3 biggest things: 1.  His CRP (inflammation marker) is down to 5.67.  It was 6.7 upon arrival to the ER on Friday and 10.4 Saturday morning.  Dr. Greene was very excited to see the significant decrease in 1 day! 2.  There are three blood cultures (that were drawn after the initial positive) which are still "cooking".  One from Friday night, one from Saturday afternoon and one from this morning.  So far, all three are negative.  These take time, but we are optimistic since the Friday night one is still negative. 3.  He is acting like his normal self, did not require any oxygen overnight and has not had any fevers. All of this is the BEST news possible!  Austin will remain inpatient through Tuesday or Wednesday for IV antibiotics and to ensure all of the blood/line i

Not the news we were hoping for, but late last night the hospitalist woke me up to tell me Austin's blood cultures that were drawn from his (Broviac) IV line earlier in the day had come back positive for 2 different bacterias.  They immediately switched his antibiotic to one that would treat these bacteria more effectively. He had a fabulous and uneventful night!  Today Austin is in good spirits, playing with his toys, clapping and giggling!  So this is great news (and much easier for Mom and Dad to digest all of this when he's happy)! Going home this weekend is no longer a reality!  The doctors told us they will take blood cultures daily and Austin needs to have 2 consecutive days of negative results.  The bacteria that tested positive are found in the gut, so the infection occurred internally and they have no reason to believe it was anything anyone did externally (skin) with the line.  Big sigh of relief for all of us who access the line.  He will continue the IV anti

Austin's nurse Brittney thought he earned a little spa day today! I started this post earlier and thankfully was able to start over!  The last couple days have been a little frustrating.  We were warned that clinically (the way Austin looks and acts) would improve much quicker than medically.  Well, unfortunately, they were spot on!  Austin has been weaned off most of his respiratory therapy over the last 2-3 days except for his nebulizers twice a day (sounds like we will be going home with those).  Starting on Wednesday, we did trial periods completely off all oxygen and he does pretty well while awake and for a few hours, but then his O2 sats start to dip either while napping or just over a period of time.  So far, he's needed anywhere from 1/4L to 1L at times over the past few days.  So, today Dr. Ozolins consulted with cardiology to make sure he wasn't missing anything and also asked a pediatric pulmonologist come and talk to us and check on Austin.  As a team, th

Well Mr. Austin continues to show mastery in the recovery efforts!  Short and sweet tonight!  Chest x-ray yesterday showed continued improvement and today's CRP was down to 1.11! Yesterday they were able to discontinue the ventilator all together (he went from BIPAP to CPAP) and was hanging out on high flow oxygen.  Today they discontinued the high flow oxygen and he's just on wall oxygen at 1 liter.  We will leave him there through the night and monitor his O2 levels while sleeping.  Try room air only tomorrow?! Continuing to increase his feeding rate by 5mL every 12 hours.  As of 8pm tonight he is at 25mL/hr.  Seems to be tolerating the VERY slow increases and working his way back to his normal of 40mL/hr. Praying to get home this weekend! Goodnight! Brian and Tara Max and Austin

Austin had another good day!  He was alert and playing most of the day!  I held him for about 30 minutes this morning and over an hour this afternoon!  He’s sleeping very good at night but struggling with naps. Dr. Fugate didn’t do a chest x-ray this morning but said his CRP is down to about 2.5!  He ordered to start weaning the BIPAP, so the respiratory therapist immediately changed him to CPAP setting.  He did well so they tried to lower his oxygen from 40% to 30% a couple times today and he didn’t do well.  So tonight he’s on 35% and doing great!  Dr. Fugate is off now and Dr. Ozolins will start rounding tomorrow.  We’re so grateful for the care Dr. Fugate provided Austin. Goodnight! Hugs, Brian and Tara Max and Austin

Other than the Vikings losing this afternoon, Austin had another great day! Dr. Fugate was in this morning.  He said his chest x-ray is improving, but sternly reminded me that he still has significant pneumonia.  He also said his CRP (infection/inflammation marker) is now at 4.  He's going to change his chest x-rays to every 2-3 days and will consider decreasing the settings on the BIPAP tomorrow!  He estimates we will be here another week....ugh! Dr. Kevan also stopped in!  She has been popping in and out to see Austin periodically.  We're currently increasing Austin's feeding rate by 1mL every 12 hours.  She also started him on budesonide in his G-tube.  This will take some explaining.  Budesonide is an inhalation (liquid) steroid.  (Max uses it in his nebulizer every night to prevent respiratory infections.)  When Austin had his surgery on December 31st, the colonoscopy showed some inflammation and lesions (little sores) in his small bowel.  By putting the budeson

Austin had a great day today!  Dr. Fugate was in mid-morning (not a bad thing that he's not stopping in to see you as soon as he gets here)!  He said his chest x-ray is finally improving.  His CRP (infection/inflammation marker) is now 8!  He was at 14, then 10 and normal is less than 1.  Trending in the right direction, but have a ways to go. Respiratory therapy sees him every 4 hours and she was just in.  She said he's sounding much better and they need to start talking about weaning his BIPAP settings! He was much more alert today, talking, playing with his toys and getting excited!  I even got him to smile and giggle a little bit this evening!  He also gave me quite a bit of sass tonight, I'll take it! Special thanks to Grammy for hanging out with Austin so Daddy can be in his meetings remotely and Mommy can go to work!  Also, to Call Papa for picking Max up from daycare each day!  Tonight we were able to all eat dinner in the Ronald McDonald House.  It was goo

Good evening everyone!  Pretty quiet day with small strides in the right direction.  No changes to his oxygen or his BIPAP settings today.  He seems to be tolerating his 5mL/hr feeds and Dr. Kevan stopped by.  She will begin following him tomorrow and take the lead on increasing his feeding rate. Austin was moved to the intermediate PICU this evening!  He will still be monitored very closely and by the same physicians, but due to not needing to be intubated, he could safely be moved.  It's a little more quiet and comfy! Thank you everyone for their continued thoughts and prayers! Hugs, Tara and Brian Max and Austin

Good morning! My Facebook post from late 1/8/20: Brief Austin Update: He had a good day from about noon on! He was more alert (even playing peek-a-boo with his gown and clapping). His respiratory rate although still high at times has started to decrease a bit. The respiratory therapist decreased his settings slightly on his BYPAP machine and his oxygen flow from 60% to 40% and he maintained O2 sats in the mid 90’s! We didn’t see any doctors this afternoon which when your in the PICU that’s a good sign! Max and I are home tonight! I’m going to work tomorrow so I will update as soon as I get to the hospital in the afternoon. Thank you so much for all your prayers! Goodnight! Brian's update from rounds this morning 1/9/20: Good morning, Dr was just in. Trending the right direction. Chances of intubation dwindling. Chest x-ray still shows significant pneumonia but he said he sounds better and can tell some of the stuff is starting to break up in his chest. Li

Austin says "Good morning!"  Just a quick update.  Austin had a pretty quiet night.  Dr. Fugate was in around 6am and checked on Austin.  He said his VBG (blood gases - mainly oxygen and carbon dioxide) levels are still looking good.  He also said his CRP (c-reactive protein) that measures infection/inflammation was 14 yesterday and 10 today.  Normal is less than 1.  So, he's heading in the right direction.  His chest x-ray is unchanged and obviously still shows the significant pneumonia.  Dr. Fugate going to continue to keep a close eye on him.  He specifically said, "he's not out of the woods yet to need to be intubated, but he is showing small signs of improvement." He's currently hanging out, a little agitated (scratching and pulling his hair), but he's also playing peek-a-boo with his lovey and his cute little hospital gown!  He needs to take a snooze, but I'll take a little spunk from him! Please keep Austin in your thoughts and pray

I apologize, I was waiting to post this until Dr. Maslonka (overnight intensivist) did his rounds, but apparently he didn't come by until around midnight and Austin was stable enough that he didn't want to wake us! Another tough day.  Austin had difficulties throughout the night with continuing to really "pull" and take rapid breaths.  After they changed to him to BYPAP last evening, he started to have a more productive cough and secretions but was unable to get them out.  He was suctioned and received respiratory therapy several times throughout the night. This morning Dr. Fugate (intensivist) came in and had made the decision to move Austin to the 5th floor.  He was already in PICU, but he was in the 6th floor step-down unit.  He was making this move because he was unsure how long Austin would sustain working so hard to breathe.  His concern was that at any point Austin could become exhausted and his condition could deteriorate quickly.  He told me he was 50/

Our sweet little guy is still struggling a bit today.  This is not atypical of what they have seen with this virus.  We had originally been cautioned that days 3-5 would be the worst, but when we were talking to Austin's nurses today, they felt a more accurate observation is really days 5-7.  So, as bummed as we were to hear that "turning the corner" may still be a day or two away, we are grateful for their expertise and honesty. I'll do my best to summarize the day (I wasn't here...yep, I went to school)!  Brian was here as we always make sure one of us is with Austin at all times. Labs this morning came back with a low hemoglobin.  Austin's baseline is low (8's and 9's), but he was 5.5 today.  They gave him a unit of blood late this morning.  We will know the impact of the blood transfusion when they draw labs tomorrow morning. Early this evening they decided to increase his breathing support.  They changed him from the CPAP setting to the B

Note:  I apologize in advance to those of you who haven't seen my Facebook posts and need to play catch up.  I have copied and pasted my last 4 Facebook posts at the bottom of this post in case you need it! Yesterday was fairly uneventful.  But early this morning, Austin started to struggle and work even harder to breathe.  They increased the amount of oxygen and changed it to a high flow (essentially adding warm moisture) in hopes to loosen some of his secretions.  Yesterday his cough was fairly productive and although he didn't like it, he was coughing stuff up and clearing his lungs.  Today it's a very dry and non-productive cough and all the secretions that need to move out, are stuck in his lungs.  He started to struggle to keep his oxygen levels above 90% and they had to increase the amount of support he needed several times.  Respiratory came in and gave him a treatment and some percussions (pounded on his chest to loosen things up) and he improved for a bit.  T