Keeping up with Four Joneses!

Austin had a great day!  It seems as if the withdrawal is behind us!  He is completely off the sedatives and only has 3 meds (methadone, ativan and an acid reducer similar to zantac)! Dr. Valusek and the intensivist just happened to do rounds at the same time today!  Orders were made to remove the NG tube and start trophic feedings (very small and very slow)!  So, after getting a very tiny feeding tube placed by his nurse and confirmed to be in the stomach by x-ray, Austin is getting 1ml/hour of breastmilk!  Dr. Valusek agreed to start with breastmilk because it's always what is best, but she did warn me that most of the time it's not enough for growth and development.  We will have the discussion if/when necessary. Dad's turn to stay with Austin tonight and I will be going home with Max for the first time!  It's time and it's the right thing!  I just keep giving myself pep talks...it will be okay!  We are so blessed to have had and continue to have so much

Today Austin moved to the intermediate PICU (basically the same unit but down the other hallway)! The intensivist (doctor dedicated to the ICU) rotates weekly starting on Saturdays so today we met Dr. Brockman.  He started the process of tapering the fentanyl (last sedative) and starting methadone for pain control.  He will be on the methadone for a week or two as needed.  As for his withdrawal, it's his biggest struggle right now.  They doubled his Ativan (relaxant) overnight and he needs it every 4 hours otherwise he becomes restless, jittery, hiccups and yawning.  Poor buddy! Dr. Valusek (surgeon) was also in this morning and continues to be very pleased with Austin's progress.  She ordered his NG tube to be taken off suction to see how he does (trial).  He did well throughout the day and if that continues, then it can be taken out tomorrow sometime.  She talked of starting food in the next couple days, but I'm unsure of the details (nurses think most likely a fe

Austin had a good day!  We got to snuggle most of the morning and then he took a little snooze before Grammy and Max came to visit this afternoon!  Then Grammy got her snuggles!  It was so wonderful to hold him again...it had been 10 long days! Biggest struggles last night and today have been withdrawal from the sedatives.  They have left him on a small dose for pain and are giving him Ativan (relaxant) every 4 hours and it definitely helps.  Worst part is he gags and has some jitters.  Hopefully, it won't last too much longer.  He was on some pretty heavy doses for a guy his size so it might take a couple days. Thank you all for your continued thoughts and prayers.  Keep them coming!  Big goals coming up as we start to transition from the shock/surgery recovery to living with short bowel syndrome. Love, Tara and Brian Max and Austin

Austin has had an eventful day and has done great!  They started overnight by giving him medications to prepare him to come off the ventilator.  First thing this morning they began decreasing his sedation medications to allow him to wake up.  They also turned down the ventilator to a mode similar to a CPAP machine (only kicks in if his breaths get under 8 per minute).  Then a little before 2pm respiratory therapy along with his nurse and Dr. Kiragu pulled the tube!  It was VERY uneventful!  They gave him a nebulizer of epinephrine to help decrease the swelling/irritation in his airways from the tube and then put him on a very small amount of oxygen.  His oxygen levels have remained in the high 90's/100 without it, but it's just a nice little boost to have a hour or so of oxygen! Since he's off the ventilator, his sedatives/pain control have been cut in half.  They will leave him on low doses for the next 1-2 weeks to let him adjust from the higher doses and continue t

Austin did great in surgery today!  They took him down later than scheduled.  He was gone for about an hour.  His hemoglobin is borderline low (it was before surgery), so Dr. Kiragu may order some blood this evening.  I will post again later tonight if anything changes otherwise the plan is still to switch over some meds and continue to decrease his epi overnight (his nurse has been working on it all day) and hopefully get him off the ventilator tomorrow! Thanks for all your thoughts and prayers!  They sure are powerful! Love, Tara and Brian Max and Austin

Max comes to visit every afternoon and today we got to hang out in the Sibling Play Area for the first time!  He had a blast!  What a wonderful space and opportunity for him and us! Austin continues to be stable.  Today was much of the same...had to go up a little bit on his sedation and consecutively increase his epi (the last presser) to keep his blood pressure up!  He did not have any replacements today meaning his TPN covered all his nutrition and he's still "pooping" well.  At times when he's awake today, he breathes over the ventilator so that is good news in preparation for coming off the vent. Surgery is scheduled for 12:30pm tomorrow to put in the Broviac (long term IV access).  His nurse this afternoon said since he's already on the vent, it should only take about 30 minutes or so.  Dr. Valusek (surgeon) and Dr. Kiragu (Intensivist - ICU doctor) then plan to taper his sedatives and start him on other pain medication overnight tomorrow night.  Hop

Austin continues to do well.  Pretty sure he's telling us that he will do things on his own time...stubbornness just might run in the family! They continue to try to taper his epinephrine (the last presser) very slowly, but he catches on each time.  They ordered an echocardiogram this morning just to check the small holes we knew at birth and also if there were any changes since the shock on Wednesday.  We did not see cardiology this afternoon, so no news is good news.  His nurse checked the report and it states the ASD (atrial septal defect) is still present but small and the VSD (ventricular septal defect) has closed.  In summary, his heart is stable. He continues to "eat up" the sedation medications.  Today they gave him extra bumps to keep him quiet rather than letting him wake up, sleep, wake up, sleep. Dr. Valusek (surgeon) stopped by this morning and decided she would rather put his Broviac (long term port for his TPN) in while he's still on the ventilato

Austin had another good day! He's waking up from time to time, so although we love seeing the little man move and open his eyes, this presents a little challenge.  While he's still on the ventilator, they would like him to remain quiet.  They do this using sedation medications and the nurses say "he's eating them up"!  Couple reasons this is happening...one he's so little and two we think he may be a red head! He's still on a very small dose of his last presser (epinephrine) and they could turn it off when he's awake, but when he is asleep he requires it.  They also decreased his vent VERY slightly.  We're expecting getting off the ventilator will be the big milestone early this week! Lastly, nutrition update!  So he did start the TPN last night and is tolerating it well.  In addition to the TPN, he has also received some replacement of magnesium, potassium and phosphate today.  As he continues to stabilize, the individual replacements will b

Austin had a fairly quiet and stable day.  Every step is going to be a baby step and we are going to take each and every one of them!  Without getting into too much medical language, a big step today was two of the three pressors (blood pressure medications) were discontinued today. There are really three main things that are constantly being adjusted and balanced.  They are fluids (not too much but enough to keep him hydrated and his labs within normal range), sedation (they are using 2 medications to keep him comfortable but not too sleepy) and the ventilator. The doctors this morning ordered his TPN (IV nutrition) and that will start sometime soon.  They also made the decision to not start tapering the ventilator until Monday or Tuesday.  The main reasons are because he is tolerating it and he had MAJOR abdominal surgery twice within 48 hours. The ventilator along with the sedation are providing him with very comfortable pain control. Continuous thank you's to everyone who

Now that we know some answers and a little bit about the road ahead, I've made the decision to keep this blog as our main source of sharing updates with you! As some of you may know, I took Austin into the doctor's office Tuesday morning for vomiting.  By noon we were at the Children's Minneapolis emergency room.  After hours of tests and nothing conclusive as to what was going on, he was admitted to a regular pediatric room for overnight observation and a few more tests. The one test that was alarming was his blood sugar was high (>200 at times) and for an almost 4 week old, that was concern. The overnight was fairly quiet, but we could tell he was very uncomfortable. By morning his tummy had become firm and distended and the nurse was having trouble getting a blood pressure in his leg.  The rapid response team was called and within an hour, he was in PICU (Pediatric Intensive Care Unit), intubated, had an NG tube (goes from his nose to his stomach), a central li