From Jules First 2 Weeks At Home

From Gigi Dance Recital and Jules at Home Weeks 1 and 2

From Gigi Dance Recital and Jules at Home Weeks 1 and 2

Bottle feeding

Jules did well in his bottle feeding observation today. It was so exciting. He loved it and swallowed well.

Goodnight,

Joy

taking care of jules

Tomorrow, I am taking Jules back to Keren at Children's and she is going to do her first bottle feeding experiment with him. I am SO excited! Even though he won't be ready to do bottle feedings with us until he passes his swallow study in mid april, it is a big moment for him to try with PT professional extrodaneire - Keren and see what he can do.

A lot of people have asked me what the schedule is like in terms of taking care of Jules. Here is a rough outline.

10pm-6am nurse on shift

6am: scott takes over from nurse, preps meds (takes a long time to individually draw out nine medications into syringes and prepare everything) and makes Julian's special food. He also switches out the ice packs in the feeding pump backpack and makes sure there is enough food.

I wake up with Gigi and get her ready for school and take her to school at eight fifteen.

8am: scott begins the 45 minute medical infusion of meds and heidi arrives to take care of Jules. when the pump finishes, heidi flushes out the line. Both heidi and scott try to fit in binky trainings if at all possible.

During the day, Heidi keeps Julian comfortable with all normal baby stuff, like changing diapers, etc... but also, she checks to see if he is saturating with enough oxygen on the monitor, refills the oxygen tanks if necessary, and keeps those binky trainings coming.

Heidi and I take Jules to the doctor for at least one appointment a week, the lab for an appointment a week, we will  stay home for PT/OT stuff up to a few times a week, and I try to remember to order medical supplies, stay on top of all his appointments, and tomorrow I need to refill all his prescriptions.

Heidi does his Meds at 2pm.

I leave to pick gigi up a bit after three and come home at 4pm with Gigi and take over from Heidi. I watch Julian and Gigi until Scott gets home for dinner. I try to binky train, diaper change, and play with him with Gigi as my helper.

After dinner, we give Julian and Gigi baths and I take care of Jules while Scott puts Gigi to bed.  We administer Julian's meds again at 8pm and make more formula if necessary. We try to put more food in the pump for the nurses, make more food if we need to, and switch out the ice packs again. The six to nine o'clock stretch is the most difficult for us.

And at ten our nurse returns and we fall into bed.

And on that note, I am off to bed! Goodnight, Joy

merrie's wedding

We (gigi, joy, scott) traveled to philadelphia for merrie's wedding this weekend. It was an agonizing decision, but we did it and we had a wonderful time.

In order to accomplish getting there, we came up with a plan to take care of Jules in our absence. We were particularly nervous given the preceding week's readmittance to the hospital, but we forged ahead thanks to our confidence in our home team:

Aunt Wendy - who drove eight hours from Oregon to stay in our house from thursday to sunday.

Heidi - Our fabulous nanny and expert on Julian's medical care who also moved into our house.

Deb and Susan - Our night nurses who picked up extra shifts to give Wendy and Heidi breaks

Dr. Emily - a lovely doctor who cared for Jules in both the UW and Childrens NICU and assisted with his bris, who came to visit Jules twice at home old fashioned house call style.

Keren, AKA Baby whisperer PT/OT from Children's who dropped in to visit.

Irene, who took the all day Sunday shift and who provided snacks and meals to heidi and wendy to make the weekend work well.

Thank you to everyone! Being able to attend Merrie's wedding was the greatest gift you could have given us and it was so very nice to have fun and celebrate such a meaningful and fabulous event. We came home to a healthier Jules and a tidier house than when we left. We were so excited to have made it to merrie's wedding and so glad you all made it possible for us to go.

Julian updates:

Today was his evaluation developmentally from the boyer clinic. Even though I knew he would be behind, it was hard for me to hear that he is at the two month level for communication and motor skills and something called adaptive skills. He qualifies for at home PT/OT and we are waiting to hear more about that. His emotional/social and cognitive levels were on par with a typical 4/5 month old.

Thank you again to everyone who made it possible for us to attend scott's sister's wedding. We danced all night and Gigi was an amazing flower girl. Lots of love to you all, Joy

Home Again!!!

We are SO happy!

on the mend

Jules is getting better!

He is breathing more comfortably and his cough is going away. He is more interactive and they think he will go home tomorrow. He has the croupe or some other upper respiratory viral infection and has responded to all the medications they gave him. They said they gave him a whallop of steroids to help stave off bugs.

Yey!

Joy

Readmitted

Julian is being readmitted right now to childrens. I am blogging from the er admit room. We are waiting for a bed.
They are worried about his massive work of breathing. he has a croupe type cough, severe subcostal retractions in his chest, and is wheezing and suffering while he breathes.
What is good is his pco2 is 47 and he tested negative for the first lab for RSV.
what is bad is how he looks, how he sounds, and his scary retractions and the noise he is making as he tries to suck in air. they are treating him with epiniphrine and dexamethasone and trying to keep it coming so that we can hopefully treat him just with meds and not have to talk about more serious interventions.
we are scared and sad to be back in the hospital. thank you to irene and tal and hannah who are hosting gigi all day. Lei is fetching us food so we don't have to eat at the hospital and we are putting one foot in front of the other. The residents just told us that we look exhausted and terrible and need to get more sleep. I am surprised scott didn't give him one of those lethal darting looks.
Poor jules.
Joy

Jules has a fever

It was 100.3, but with tylenol is 99.5

He has thrown up nine times today and been very irritable.

We spoke with the pulmonary attending and came up with a plan. He is on 1/2 a dose of lasix, faster food to fight dehydration, and less caloric food to not upset his tummy.

Lei fetched us many a meal, Jen cooked us many a meal, and we had a nice first shabbat home with julian before he got sick. We are exhausted and falling into bed with the nurse here on deck with Jules. She is going to wake us up if he throws up, doesn't have wet diapers, and or is fever spikes.

Joy

10 pounds!

lWe took our first trip in the car today since coming home. To the pediatrician and then back home. Jules was ten pounds on the pediatrician scale and we survived trying to carry jules, the stroller, the car seat, the care notebook, the oxygen tank, and the feeding back pack. It took two of us, a disabled parking spot, and some deep breathing... but we made it!
Jules has his first physical and occupational therapy appointment at home on Monday, another trip to the pediatrician next wednesday, and a bunch of other appointments, so hopefully it will get easier with practice.

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