Great news!

Today was our day of reckoning at pulmonary clinic (where the team that followed him in the hospital from the pulmonologist, to the dietician, to keren from occupational therapy, etc...) came to evaluate Jules.

Here is what transpired:

1. On the subject of eating, Jules has been given the go-ahead to continue with full oral feeds and we are putting off the G tube surgery as well as re-inserting an NG tube if he can continue making the kind of progress he is doing. YAYYYYYYY!!!!

Right now, he is gaining 12grams a day and we are aiming for 15. Right now, he is eating about 600ccs of liquid formula a day and we are aiming for 630 as the next hurdle and then 700 so we can ditch the use of some noxious vitamins that make him hurl.

Today, Jules was 6.3 kilos which is about 13.9 pounds!

We were cautioned to not be too eager because kids like him could wake up and refuse to eat or regress and then it will be back to NG-city and G tube trajectory.

We are trying to get out of the upper-GI study and other studies necessary for the G tube surgery since most likely they would make us repeat them if we do the G tube surgery in september if things go poorly over the next few weeks.

2. On oxygen -- Jules went for 2.5 hours without oxygen today and still had blood saturation levels of above 92%. This is most excellent! It means we can begin to take him off oxygen for an hour a day, then two hours a day, etc... moving toward being off oxygen during the day time and just hooking him back up at night!

3. Social isolation.

We are still in enforced people restriction. For the summer, we can go to a restaurant with him if we like, but no day care or exposure to other children if possible and no passing the baby around to other adults, etc... Sigh. And this will get more strict in the fall when cold and flu season starts. It sounds like getting through our first winter is going to be quite the ordeal. We have been told to expect hospitalizations, etc.... Yay.

4. On scary medications. Jules is on about half of the lasix dose he was on when we left the hospital. The number one goal is to get him off lasix. That can happen after he gets off oxygen. So, for now, this one is tabled. And we will be checking his bone strength with a mineralization study as well as doing a hearing test to see if lasix is ruining either of those.

In conclusion:

This is what the pulmonologist wrote on his clinic visit, "Jules looks the best that I have seen him from a social and work of breathing standpoint and he had a great blood gas! Good weight gain!"

SO happy to have good news!

Joy

jules update

He is practicing sitting up unassisted, working hard to pull his knees under while on his tummy in preparation for crawling, and busy figuring out how to hold things with both hands and pass objects from one hand to another.

He is doing okay on his eating without an ng tube. We are highly concerned that while he is taking in the required calories, he is not gaining weight. We will find out thursday.

We scheduled his upper GI study and surgery preparationg assessments for the weeks following this eating challenge.

With scott's parents here to watch over gigi this weekend at their hotel and Gigi's babysitter watching Jules, we went out to celebrate our anniversary with a yummy dinner at Canlis and the first movie since November when the trauma therapist advised us to go to the movies to escape the NICU and we tried to watch James Bond but couldn't even concentrate and just kept calling the ICU for updates. It was really really nice. A glimpse at a normal life and we loved it.

Joy

jules news

Jules is doing a "cautionary week-long trial" to see if he can gain weight and eat his total food volume in calories through a bottle with no night time assistance from his feeding pump/ng tube.

He seems to be doing okay with eating the volumes required of him, but we aren't sure if the exercise of eating all those bottles is burning the calories at too rapid a clip. He may not gain weight after all.

We are trying not to get our hopes up too high and have remained on course, visiting with the surgeon yesterday and scheduling a G tube surgery for Jules. In order to have surgery, he has to have a special GI study and be approved for sedation by the same doctors who freaked out last time. So, I am not quire invested in the entire thing.

In the meantime, he looks adorable without the NG tube and is a lot easier to handle without fear of pulling it out all the time. He is more comfortable and so are we!

Here's to hoping he gains weight at the end of the week!

Joy

3 for 3

So, three weekends ago Gigi and Jules were sick. Then, last weekend I had strep throat and this weekend, it was Scott. Scott got strep and had to miss work on friday and we Silvers stretched to get through the days. And now, Scott is feeling better, I feel better, and Gigi and Jules are okay. We are hoping to catch a break and find boring, peaceful weeks ahead.

I am imagining tedious doctor appointments where they shake their heads and wonder if jules and I should bother coming back as often because he is doing so well.... And weekends where no one is sick and we can actually relax and unwind. Maybe, just maybe I will have enough rest and time to speak on the phone to a friend or family member! It would be so nice. So, that is what I am hoping for.

Scott's parents are coming next weekend to help out and will take Gigi to their hotel for a sleepover. We have hired Gigi's babysitter to guard Jules while we attempt our second date night in many months. It happens to be our seven year wedding annivesary and our fifteenth anniversary of being together on June 2nd and we are looking forward to getting out of this cabin fever situation. We aren't quite ready to celebrate, things with Jules and us this year have left us perhaps a bit too shell shocked and weary for that, but just to get out of the house and be together and at the very least appreciate that however awful this year has been and the damage it has done to us as individuals, it has only strengthened our marriage. And for that I am very grateful.

Goodnight,

Joy

Memorial Day Pictures

On the mend

I am starting to feel better from the antibiotics. My throat is in less pain, my fever is down, and I got up and about for a few hours.

Gigi feels right as rain and her anti-bacterial ointment for her face is doing the trick.

Jules feels a lot better from his cold, with just residual conjestion and coughing.

I think the Silvers are on the mend!

Scott took care of both children from 5:30 last night until about that time today when our friends Irene and Tal offered to take Gigi for a sleepover (Thank you Thank you thank you!). He told me that he needs me to get better soon and is not prepared to be a single dad. It was a pretty tough day for scott.

Joy

I have strep throat

on tylenlol every four hours, my fever is 102.7.

I have the shivers and feel like I can't swallow. I started the antibiotics this afternoon.

Joy

fever climbing

My fever is now 102 on tylenlol and my throat feels so swollen and hurts so much that swallowing is excrutiating. I have left a voicemail for my doctor and will call again when her practice opens at 9am to see if anything can be done to help me get better or be more comfortable while my body tries to fight this off. 

Joy

more fever

So, I'm sick. Right now, I'm sporting 101 fever and feel awful. I caught Gigi's illness. First I was freezing, then boiling hot, and now my throat is so sore that I can't bear to swallow.

Gigi finished her fever, but developed some sort of bacterial rash that required $75 ointment to conquer the infection.

Last night was terrible, Jules coughed for hours and hours on end and gagged so hard, his NG tube came out part-way. I didn't sleep a wink. The nurse came to get us at two am for help with Jules.

Our house looks like a cyclone hit it.

Scott had to leave work early to take gigi to the doctor for her rash because they wouldn't let me go to the pediatrics clinic with a fever and sore throat. Plus, I can't approach or touch jules, because it is too risky for him to get this.

So, scott is a single dad right now taking care of three sick family members and I'm tearing up as I type this because it just feels like too much. I know this is just life, but it feels so cruel not to be able to hold Jules and I just feel run-over. I feel guilty because my RA drugs make me immunosuppressed and when I don't get sleep for nights on end, it shouldn't surprise me that I caught Gigi's fever illness.

Back to bed.

Joy

good labs

Three sets of great labs! Best pco2 ever posted  -- a 36! Also recorded a 39 and 40 and all when he is enduring a cold. Maybe he is finally turning a corner with the lungs? We dearly hope so.

Gigi's fever ended monday morning, but she is still not quite up-to-snuff apparently.

Jules is wheezy and plodding along on prednisone and albuterol inhalations. He is vomiting only about four times a day instead of eleven, so we are  finally getting some sleep and back to only two loads of laundry a day instead of our high point of the weekend - SIX!

Also,this morning jules took his meds via his bottle instead of the NG tube for the first time. It was very exciting.

Joy