Update

Today, Jules kept his Pc02 in the fifties, with a 59 this morning.

He threw up twice this evening, making us worry he didn't get his lasix.

He smiled and charmed many a medical worker and he snuggled in for long naps.

Joy

Click on any photo to see the rest including a video or two.

Huge Relief

Today was a tough one.

When I arrived this morning, his PC02 was 79. The worst it has ever been before. The nurse comforted me and informed me that the IV team was on their way to put an IV line in and give him a lasix dose via IV, something not too common, but an agreed on plan between us and the pulmonologist yesterday for if this situation arrived.

The pitying looks were hard to see and then the pulmonologist arrived to tell me that this was scott's idea (to do IV lasix) and that it would be unusual if this worked. If it didn't change his PC02 than I needed to be prepared for the NICU and possible reintubation, since there is no other explanation they could derive for what was going on with the carbon dioxide, except maybe a virus. I stomached the discussion as much as I could and then cried for awhile when they all left.

I rocked Jules and prayed all day, sitting vigil and waiting the five hours they needed to test the blood gas again. David Loren came to visit and check on us and told me he would take Jules to the NICU if need be.

Anyway, at four his blood gas came back at 57! Yey!

This blew everyone's minds away. We all feel we dodged a bullet today and while the lasix is not safe longterm, this one time dose was important. Grampop (dr. silver) told me to be grateful for Scott, who he thinks would have made a great doctor, because it was scott's idea to do IV lasix and he proposed it to the pulmonologist yesterday. So, thank you Scott!

I am so unhinged and weary from the hospital vigil and constant fear/hope cycle. I can't believe it has been 120 days of this so far. I am so happy for Jules and am hoping this convinces the doctors to take seriously the fact that Jules does not fit into their normal boxes and that diuretics are the key to keeping him stable (Even if that is not the case for any other severe chronic lung diesease kid they have ever treated!)

And the icing on the cake...
Jules smiled at us and I caught it on camera. Scott is uploading the pictures now.

Thanks for all the love, support, thoughts, prayers, and positive energy sent in Julian's direction.

Goodnight,
Joy

The numbers don't match the baby.

Since this morning we've 

• done a second CBG to measure is CO2. It was 71.
  
• gotten a chest x-ray, his first in about a 3 weeks
• talked to the attending pulmonolgist

We know that he's probably retaining fluid by looking at him. However, he also looks pretty happy -- he continues to pick his head up, follow our eyes, and generally not breath very heavily. There are probably two obvious directions to go from here, basically do nothing or give diuretics. My theory is that over the last few days his feeding tube has been in his tummy from time to time as opposed to his intenstines. And so he's been throwing up. I think he's been throwing up his diuretic - Lasix. Now his tube seems to be in the right place and so he's getting the right dose of Lasix. So we can either supplement that with more Lasix orally, more Lasix intravenously,  spironolactone --  different diuretic or nothing. Since it's ok for him to stay at 71 or 75 for a day or so I think we're going to do nothing for one day and then if nothing changes tomorrow AM go with Lasix.

Also, we'll be staying on the medical floor for now. We may be headed back to the intensive care unit -- probably this time to the PICU (Pediatric as opposed to Neonatal).

Worst number

This morning Julian's PC02 is 75. That is the worst it has ever been.

We are scared and worried.

Nothing has changed that would predict that kind of number. We know we will be heading back to the NICU and we are so upset and discouraged. All we can do is pray and hope he pulls out of this.

Love,
Joy

61 again

Sigh.

The new attending thinks these bad numbers are related to his feeding tube being in the wrong spot. They tried to adjust it today and this time didn't turn his food flow off. Since he weighs less than he did when he left the NICU, he needs all the nutrition he can get.

Some resident turned down Julian's flow without being told to do so and against our wishes, so we don't know if that contributed to his PC02 going up either. We pushed the flow back to where we wanted it and hope for a better blood gas result tomorrow morning.

Yet another new attending begins tomorrow, so we will take our concerns to him.

Joy

??????

PCo2 of 61

No weight gain for awhile.

Scott and I are both going to go to rounds if we can today.

Joy

Day 117

Julian's new room is so great. We can't talk on cell phones, but we can eat in there (which means I can finally eat breakfast and lunch with visitors at his bedside), and we can text on our cell phones, (which means we can finally communicate easily with each other). If we bring our laptops, we can email from the bedside too.
Jules is 117 days old. 6 weeks corrected.
He weighs 7 pounds 10 ounces.
He is really snuggly and cute and hard to say goodbye to at the end of the day.
Joy

bye bye nicu ][

Today at about 6:30pm we moved to the medical wing ("Train 1"). Julian will now be under the care of the pulmonology team. This is an important step for him. How many of your recognized the "]["?

Joy and Gigi return from Disneyland tomorrow. And I'm off to Mountain View for a day of meetings and back at 5pm. How lame is it that the *only* day in the last 3 months where either Joy or I has left the state is the day after he changes floors?

good weekend

Julian has been stable all weekend. His CO2 numbers have stayed in the mid 50s (53 on Monday AM). We reduced the flow of oxygen he's been getting to 1 1/4 liters from 1 1/2 liters. This takes us on a path where he could move to the medical floor from the intensive care unit.

That's a picture of him during his second bath of the weekend. Julian is about 6 weeks old "corrected" now and so we've started to adjust to this by thinking about getting him on a schedule. Developmentally-speaking, he does well at tummy time, lifting his head and turning it from side to side. He also follows us with his eyes and shows signs of smiling when we smile at him.

Gigi, Joy and Nana are all in Disneyland visiting with the Princesses. I spent the weekend with Jules and some visitors. One of the nice things about Children's is that they have wireless access. This means that I have been able to use video chat (google's) so folks could see Julian. The future has arrived.

On a humorous note, I received a bill for about $450K from UW Medical Center. The rack rate for the NICU is about $4600 a day. And that doesn't even come with wireless access!