Day 3 at Home

Jules is settling it at home. He's still smiley and happy. He's been spitting up a bunch so that's something to work on. We're trying to work through the details of a routine. There are lots of complexities.

For example, he gets 9 medicines 2 times a day. That's 9 different medicines each drawn up individually into a syringe. Then infused via pump through his NG tube.

Jules is Home!

From Going Home Day

It is so wonderful to have him here.

We are so very happy and filled with euphoria.

We had our first family dinner, we gave him his meds for the first time, mixed his special food for the first time, took care of his feeding tube and oxygen for the first time, and my favorite -- CHANGED his ng tube out after just a few hours home. Scott did the procedure and we survived.

But, we only managed two binky trainings and skipped his bath. Our nurse is here now and we are going to bed satisfied and exhausted.

Goodnight,

Joy

P.S. For camparison here's Gigi (a lot younger than Jules)

Jules coming home tomorrow!

We have cleaned out his hospital room and brought all our stuff back home.

We built the crib.

We have a meeting tomorrow morning with the oxygen supply company, a training on how to use the feeding pump and medicine infusion pump, and a lesson on how to mix his special food scheduled.

We are targeting noon for departure/break out of hospital jail time.

I didn't sleep last night because I was so excited and nervous. I CAN'T WAIT to bring him home!

Joy

update

Hi,

I didn't have a lot of time to write last night and explain fully what happened.

But, basically the pulmonary team added Jules to the surgery schedule yesterday and they believe that the surgical team should have read julian's chart and come to our room to consult for the surgery. The surgical team believes the pulmonary team should have consulted with them before signing jules up for the surgery because they would never have signed off on doing the procedure in a baby as small as julian who is still on oxygen. 

So, the surgeons were surprised to read over his chart at three after he had been kept on no food all day and had an IV put in, that he was on a half a liter of oxygen and had the lung disease he has, but was supposed to get the surgery. They didn't want to intubate and extubate a baby with his kind of lung disease.

They told us that if he were their baby, they would not do the surgery.

The surgeon went to get some of the tubing they would use on Jules and showed it to us to try and scare us away from the procedure.

It was not a fun afternoon. Everyone was upset that Jules who needs every calorie he can get, had been starved all day needlessly. The doctors were somewhat embarassed about what had happened and all blamed each other a bit. 

And now we can't get home till Monday. And our house is super depressing with an empty crib waiting for Jules and no cute little pumpkin around here.

Joy

left hand meet right hand

Yesterday was an incredibly frustrating day. The net result is that we will wait a few months for Jules to have his g-tube and he will have to stay until Monday to be discharged. All this because Jules was *never* a good candidate for a g-tube surgery but his attending pulmonogist and the GI docs in charge of the surgery never bothered to talk to anasthesiology or surgery until 10 minutes before his now aborted surgery. A simple conversation AT ANY TIME in the last 2 weeks would have avoided all of this nonsense.

This will give you insight into why hospitals suck. Why we waste money on keeping kids in hosptials. Why simple project management and FOR HEAVENS SAKE there should be FREAKING check-list for EVERY surgery.

• Wednesday 2/25 3pm "Discharge Planning Meeting": I say "put on your thinking caps what else needs to be on the discharge list". Complete blank stares from the nurses and doctors around the room. Pulmonologist DoctorA humors me and goes through body systems. List now has 10 items. (NB: No swallow study, no g-tube on list). Date of discharge Thurday 3/5.
• Tuesday 3/2 7:30pm: Pulmonologist DoctorB says to me have you thought about a g-tube. He's going to need it at six months with 3/4 probability. I ask him about the risk of the surgery, especially about the risk of anesthesia and the fact that he'd have to be intubated. There'd be risk that he couldn't be extubated (take tube out for breathing)
• Wednesday 3/3 10am: Equipment to go home like O2 starts arriving. Trainers come to teach us how to use it.
• Wednesday 3/3 12:30pm: Joy and I talk it through and decide to get the g-tube. All home preparations are put on hold.
  
• Thursday 3/4 9:00am: Nurse calls to tell me that we're on for today for g-tube surgery.
• Thursday 3/4 9:30am: GI Fellow (typical initial g-tube is a PEG inserted with the aid of a scope down Julian's throat, so GI takes the lead) visits and says Jules is a good candidate, he's over 4kg. I ask if there are any anasthesia concerns and when would anasthesia come to see us.
• Thursday 3/4 9:45am: Jules is NPO -- no food. And has to be that way for 6 hours. Actually the GI fellow said 4 hours, but she was wrong it was actually 6 hours, per anasthesia.
• Thursday 3/4 3:00pm: We carry Jules up to the pre-op room.
• Thursday 3/4 3:30pm: GI docs visit again to check on os.
• Thursday 3/4 4:00pm: Anasthesiologist comes in after 30 minutes of reviewing chart. Asks questions that should be in the chart (like the fact that his RVH was resolved). Then says we have 3 choices: wait for surgery for 2+ months, extubate in PICU (equivalent of NICU for older kids), or extubate immediately. I told her to talk to Pulmonologist DoctorB. She pages and waits.
• Thursday 3/4 4:10pm: Overheard in the hallway (the surgeon to Anasthesiologist) "Are we doing this or not?"
• Thursday 3/4 4:45: Joy and I call neonatologist friend to ask advice.
• Thursday 3/4 4:50: Surgeon comes in and says a) he wouldn't do the surgery and b) shows os the "belly hose" that is much bigger than his "nose hose"
• Thursday 3/4 5:00: Anasthesiologist and Pulmonogist Doctor B chat.
• Thursday 3/4 5:10: Joy and I call off the surgery.
• Thursday 3/4 5:45: Jules gets some food again.

No surgery

Horrible day.

The surgeon freaked out and said he did not want to do the surgery. The anesthesiologist freaked out and said she didn't want to put Jules under.

Jules went without food for eight hours and had to live through the pain of an useless IV.  I got really mad and then cried four times.

We are now trying to get home on Monday.

Joy

Surgery Today!

We just got the call. This afternoon is the plan for Julian's surgery.

We are praying everything goes well and the little guy comes through it with no reaction to going under.

Joy

long day

Jules recovered from his circumcision (slept a lot) and we tried to recover from our disappointment in not bringing him home and prepare for his upcoming surgery.

We don't have a surgery date yet, but started the ball rolling.

Goodnight,

Joy

Brit Milah: Highs and Lows

From Bris and Other Stuff

Highs:

Jules had his bris and came through it like a champ. Thank you to our mohel, Dr. Loren who did a fantastic job facilitating the procedure, managing Julian's pain with morphine and a nerve block, and getting both Jules and me (the mom) through it with minimal suffering.

Lows:

We have been preparing to bring Jules home on Thursday.

Unfortunately, the swallow study he went through today showed micro-aspirations when he tried to drink from a bottle. The doctors believe he needs surgery for a Gastric tube, or a "g" tube as they call it, which would delay his home coming significantly.

Scott and I are so sad about this and it was a rough day coming from the happiness of finally experiencing the significant occassion of Julian's bris to the blindside of another few weeks of hospitalization, including a surgery for Jules. We are falling into bed, feeling a bit defeated, but still happy from celebrating the simcha of his bris.

Joy

Good day

Jules had a great day!

He passed his car seat challenge.

He had a blood gas of 54.

He had the results of a cranial ultrasound showing improvement in his brain asymmetry, so that he is now within normal limits.

He had a chest x-ray, but no results yet.

He moved up from 10ccs to 15ccs on binky training.

And he smiled his way through the morning.

They also found some unusual stuff in his blood work and have called for a hematology consult. They don't seem overly worried about it though.

Tomorrow night is his bris and he is blissfully unaware.

Joy