Keeping up with Four Joneses!

We're HOME and all 4 of us are back under the same roof!  We got home Friday late afternoon and were welcomed by 2 wonderful nurses from Pediatric Home Services (PHS).  PHS will be part of Austin's care team in providing skilled nursing, supplies and starting November 12th, extended nursing.  They have been wonderful, both as a resource and helping us believe we can do this! Austin still needs all the cares he required in the hospital, but now we are responsible for being the providers.  I'm not going to sugar coat it, it has not been easy.  Being home provides very mixed emotions.  We love being here in the comforts of our own home, but the added stress of taking care of Austin has presented challenges!  With all that said, each day/night has gotten a little bit easier.  It will take some time to learn the intricacies of all Austin's medical needs and creating a schedule that doesn't exhaust Brian and myself.  Oh, by the way, Austin i...

Based on the title of today's post, I'm thinking you probably have in mind what today's focus will be...we are planning for discharge to home! Austin had a good weekend!  He had a couple higher outputs in his ostomy, but has been trending down the last couple days. The GI doctors are not concerned and have reminded us "he will have higher days". Yesterday we started some "housekeeping" for discharge.  Austin turned 2 months on Sunday and therefore needed his immunizations.  They were able to give them to him last evening and other than a very low grade fever this afternoon and a little sleepier than usual, he has done well.  He also had 2 appointments scheduled for November here at Children's, one with genetics and one for an echocardiogram. I met with Rebecca from genetics yesterday for about an hour in regards to Austin's development.  He's doing remarkably well for all he's been through and continues to meet typical growth an...

Happy football, baseball and basketball Saturday!  'Tis the season!  Austin is snoozing while Brian and I lay here staring at our devices (no TV's in the ICC rooms)! Austin has recovered well from is surgery on Thursday!  It's amazing how quickly little ones heal up and just a little Tylenol to take the edge off! We had to take a break from advancing his enteral and oral feedings for surgery. Yesterday, he returned to 5mL/hr continuous and 5mL oral feeds.  We got 3 of the 4 oral feeds in since the orders to resume weren't written until around noon.  His ostomy output was a little over 120cc yesterday so that was great!  We will expect that number to increase a little (hopefully not too much) today since he's feedings were resumed full strength.  Yesterday, his TPN/lipids were again cycled to be off for 4 hours.  His blood glucose (sugars) were again fine!  This time off is in the evening before they hang the new bags for the next 24 hours...

Austin's surgery went well.  They were able to place the g-tube without any issues.  We were back in his room about 1/2 hour after surgery.  It took him about 45 minutes to settle down, but seems to be comfortable now. His TPN/lipids will continue and he will restart his enteral/bottle feedings at 5mL tomorrow morning. Thank you everyone for your thoughts and prayers!  No matter how low risk, sending your child to surgery is never easy.  He's a tough little boy! Hugs to all! Tara and Brian Max and Austin

Austin continues to do well as we make slow and deliberate (just like the sloth lovey) improvements.  Dr. Ferenci ordered a couple changes.  Yesterday Austin had 3 oral feedings.  This means they turn off his enteral feeding for an hour 3 times each day and 1/2 way through the hour, he drinks a 5mL bottle!  Oh he loves his teaspoon!  Today he had 4 bottle feeds and again did very well!  The second change was his TPN/lipids.  Yesterday they cycled them to be off for 2 hours.  While they were off, they checked his blood glucose at 1 hour (83) and at the end (69) so he passed!  Today he is cycling for 4 hours.  His blood glucose half way through was 92 and they will check it again at the end.  Fingers crossed he's looking good. We are asking for some additional prayers tomorrow.  Austin will go to surgery for a short procedure to put his g-tube in.  It's very routine, however, it's still a surgery.  It's scheduled f...

Austin had a great weekend!  I'm going to try to keep this short and straight forward because I'm predicting a lot of changes this week!  Sunday to Monday is the transition to new rounding doctors.  We get to keep Dr. Fugate (intesivist) for another week (he's on for 2 weeks in a row) and Dr. Keven has been replaced by Dr. Ferenci for GI.  Austin saw Dr. Ferenci the last week in PICU so he is a familiar face to us. Here's the exciting news...Austin's ostomy outputs have been within the perimeters (so he's not dumping)!  He was increased to 5mL/hr yesterday mid-day and the plan is to go up to 6mL/hr tomorrow.  Dr. Ferenci also ordered 2 bolus feedings per day.  This means they turn off his feeding tube for 1 hour twice a day and he gets 5mL (equivalent to a teaspoon) using a bottle.  Brian fed him this morning and I just fed him about 730pm.  He did well! As for his TPN/lipids, Dr. Ferenci also wants to try cycling.  This means tha...

Not a lot to report medically.  They increased his feeds to 4mL/hr on Wednesday and he's tolerated it okay.  He's been slowly creeping up on his ostomy output again.  Dr. Kevan wanted to wait another day before we decide whether or not to go up to 5mL/hr.  Right now he's being fed using his NG tube (the one in his nose), however, in preparation for home, he will need a G-tube that goes directly into his stomach. It's much safer than the NG. We are hoping that will happen late next week. Speaking of home, we are still about 1 1/2 to 2 weeks away, but we have started making plans!  A few people have inquired, so I will try to summarize what home is going to look like for us in the immediate future and next few years as we help Austin maintain adequate growth.  When he is discharged from the hospital, Brian and myself will be trained on all his cares. He will have the feeding tube (as mentioned above), and his IV access (Broviac). His IV access will b...

Three weeks ago today I brought Austin to the emergency room and never imagined it would be the start to this journey.  But, we are here and Austin is amazing! Not a whole lot to report today.  They restarted his enteral feedings at 11pm last night at 3mL/hr so we are waiting to see what his 24 hour output will be.  His rate will be adjusted daily depending on how he responds with his outputs.  He decided he wanted to keep dad awake last night so several naps and snuggles throughout the day today!  We did sneak in a little sponge bath.  Otherwise, just getting adjusted to our new "home". Love and Hugs, Tara and Brian Max and Austin

Thank you for all your prayers and words of love and support!  Austin had a good night last night.  He was able to relax and get some sleep (therefore Mom was too)!  Shortly after shift change this morning, his nurse informed me we had a room in the ICC (Infant Care Center)! So, I started packing us up from the unit we had called home for almost 3 weeks and about an hour later we were on our way! As we rolled through the PICU to the patient elevators, Austin was greeted by many of the wonderful staff who took care of him along this journey!  He sure is a loved little guy! (Picture is of our new room in ICC). Austin will continue to be followed by the intensivist (from the PICU) and GI in a team approach.  The decision was made this morning to give him a break from his enteral feedings.  His ostomy output has been creeping up and he had reached the threshold for "dumping".  He's allowed about 40cc/kg.  Since he weighs almost 4kg, he's allow...

Austin had an okay weekend.  Not much progress, but he didn't go backwards!  His enteral feedings are "parked" at 4mL/hr as his ostomy output has continued to go up a little each day.  Dr. Fereci said he pushed him pretty hard during the week and now we just hold off on increasing his rate for now.  The hope is that his ostomy output levels off rather than continuing to increase. Our other big hurdle has been gagging.  He has struggled with episodes of gagging (lasts about 10-15 seconds) and happens about every hour or so.  They did a chest x-ray this morning just to make sure his feeding tube is in the correct location and it is.  There's no good explanation for the gagging so we think it's either his gag reflex from the feeding tube or maybe a little bit of reflux.  However, I'm not convinced it's reflux because he's not spitting anything up and he's on the max dose of prilosec (for acid reduction).  Overall, he just hasn't been as com...

Austin continues to make good progress!  He's awake and alert, he's smiling and squawking at us!  He is getting more comfortable being held, had some tummy time with physical therapy and enjoys the time in his swing! As of this morning, he's done with his withdrawal medications.  As for his feedings (called enteral intake), Dr. Ferenci (GI) had decided on Tuesday to start increasing them by 1mL/day.  He's done well and we have been warned this is a very slow process.  Yesterday his output through his ostomy increased from about 50mL's to about 120mL's, so we put a hold on for today.  So, an extra day at 4mL/hr.  He isn't technically dumping, but due to the significant increase, the doctors wanted to give him a little rest. Again, it's so much of a balancing act.  If he gets to 25mL/hr then he doesn't need the TPN...this is pretty unrealistic at this time, but gives you an idea of what hefty goals he's pursuing.  However, the m...

Austin had another great day and super busy!  Medically, he was seen by the intensivist, surgery (Dr. Lilligard is the surgeon of the week) and Dr. Ferenci (GI)!  All doctors agreed that he is doing well with tapering the ativan and methadone.  They also agreed that he's tolerating his feeds well, so they wrote orders to increase his feeds by a mL each day (today he was on 2mL/hr and tomorrow he will increase to 3mL/hr).  Dr. Ferenci reassured me that we can not do harm, but if we increase his feedings too fast, it will cause vomiting or "dumping".  Dumping means the breastmilk is going through him without absorbing.  We will know if dumping is occurring if he is putting out more than 30cc/kg of weight.  Austin weighs about 3.7kg right now, so over 110cc of output in his ostomy would caution us to back off on his feedings.  So far the last 2 days, his output has been around 80cc!  He's doing great! This afternoon was the busy part of the da...

Austin had a nice quiet day!  The intensivist ordered a slow taper of his adivan and methadone.  So far so good.  I may have spoken too soon last night as Austin periodically shows slight symptoms of withdrawal.  However, they are definitely improving.  Still on the 1ml/hr of breastmilk for feeds.  He seems to be tolerating it okay! Favor to ask you.. the Ronald McDonald House has been a source of sleep and food for the past 2 weeks and will most likely continue to be for the remainder of our stay!  They say once you spend the night in the ICU, you get a "golden ticket" to the facility.  RMH Upper Midwest (services the Twin Cities) is in the running for a $50,000 grant from Cub Cares in celebration of their 50th anniversary.  Please click here and vote!  You can vote daily for up to 7 votes and the contest ends 10/7!  Thank you in advance! Hugs and Love, Tara and Brian Max and Austin