Friday, December 31, 2010

Playing again

Jules lost a lot of fluid yesterday and is able to open her eyes again. She is SO much happier when she can see what's going on and "play" with her toys. They have been able to decrease her ventilatory support as the fluid starts to come off. We need several more days of this good behavior and she can come off the ventilator. She will be VERY happy then.

She still has in one chest tube but it is only draining fluid from the swelling. She is not accumulating the fluid in her lungs that required chest tubes in the first place. Wherever there is an exit, her body is "leaking" fluid (ie. her nose, mouth, old chest tube wounds, teeny hole in her scalp where she had a blood draw yesterday morning....) Her body is trying to get rid of the fluid anyway it can.

She is going to get some milk today. She has had a few weeks off from feedings during her latest episode of misbehavior. Again, they will start VERY slowly with the milk - 1 tsp every 8 hours.

Under the guidance of the speech therapist ( :) ), I have been using some scented chapstick on her lips to give her some "positive" input to her nose/mouth. She loves grape and strawberry. I think she likes the smell and it makes her lick her lips. With that ET tube down her throat, she needs some "nice" things associated with her mouth.

She looks good today. It was encouraging to spend time with her this morning - the last day of 2010. Let's hope 2011 brings Juliet strength, good health, good nutrition, and a trip OUT of the hospital.

Happy New Year!

Wednesday, December 29, 2010

Groundhog day

Unfortunately, Juliet's body is taking on extra fluid again. Her last remaining chest tube is minimally draining (which is good) but she has gained significant weight 3 of the last 4 nights. Her face and trunk are very swollen. I hope today will be a day of meetings with all of the sub-specialties (surgery, infectious disease, nephrology) to formulate a plan to quickly reverse this process. A section of her abdominal incision has become more open and the bigger she gets, the bigger that opening is going to get.

Here we go again.

Monday, December 27, 2010

Down to one...

Jules is down to one chest tube. The pleurodesis on the left side seems to have been successful. They removed her left chest tube on Christmas day. Today, they did a pleurodesis on the right side. In a few days, we will know if it was a success. If so, her final chest tube should be able to be removed.

That's the good news. The possibly-not-so-good news is she has started getting more edematous again. She gained about a pound in the last two nights. Since this is what she typically does when she has an infection, they started antibiotics yesterday. Her blood cultures have not grown anything yet.

She remains on the ventilator. An attempt to extubate her on Friday night was unsuccessful. Now that she is getting edematous again, her lungs have more resistance and require more support. We just need to get her back to her normal size and keep her that way.

After stopping in to bring Juliet her stocking on Christmas morning, we went to Pennsylvania for the weekend. It was nice to get out of town for a few days and to spend some time with our family. I didn't love the idea of leaving Juliet, but we were only 3 hours away and her medical team did a great job keeping her company. We knew she was in good hands. It was good for all of us, I think.

Hopefully, you all had a relaxing holiday weekend. Keep Juliet in your thoughts and prayers. This peanut needs to start making some major steps in the right direction very soon.

Friday, December 24, 2010

News from the NICU

After a few days of "not feeling so hot", Jules is back on the ventilator. She kept getting air trapped in her pleural (lung) space and it was making it difficult for her to breathe. Most likely the air was coming from along her chest tubes. Since the tubes have been in for over 2 months, they aren't as tight as they once were and frequently leak. If they aren't tightly sealed, air can sneak in along the track that her body forms around the chest tube. Yesterday morning, they decided to put in a 3rd chest tube to try to get the air out. This required full sedation and therefore, she needed to go back on the vent. Last night, they took out the old chest tube on the right side since the new one was draining fluid.

The doctors, as well as Chris and I, are realizing the conservative treatment with chest tubes is not working to heal her chylothorax. Most children with this issue heal on their own in 6-8 weeks. (As we all know, Juliet is NOT like "most" children.) It is time to try other options. The issue is most of those other options are surgical. While she is intubated, the team decided to try a pleurodesis. Basically, they put medicine INTO her left chest tube to create a chemical abrasion in attempt to seal the place where the fluid continues to leak. This can be very painful, so they kept her well sedated and with lots of pain meds. We won't know for 4 or 5 days if it worked. If she tolerates it without complication and it seems to be helping the chylothorax, next week they will try it on the right side. If it doesn't work, she may need another surgery to fix the issue.

It is very difficult to see her go through all of this. It is hard not to pick her up when she is upset. It is hard not to be able to dress her and snuggle with her. So many of the things we enjoy so much with babies is not happening with Juliet. I know she will be home in time and we will get to do all of those things...someday. For now, I will enjoy the time looking into her beautiful eyes, holding her hand, and singing her lullabies.

For all of you who continue to support our family during this trying time: WE THANK YOU! Juliet has a Christmas tree, a stocking and many presents next to her bed thanks to great friends. For the past week, we have received special treats on our doorstep EVERY day. All of these things put smiles on our faces and remind us how many people we have that love us and love Juliet.

Merry Christmas to you all!

From earlier in the week

Sunday, December 19, 2010

A Little Daddy-time

Chris was finally able to hold Juliet on Friday night. He has not held her since October and boy was he happy to finally be able to get in some snuggling. Jules looked like she enjoyed it, too.

She has had a few good days - but don't tell her that. She has started getting breastmilk again - although the doctors/nurses are making it "skim" to help prevent exacerbation of her chylothorax. In the next day or two, she will have a contrast study to look at the second section of her intestine. If it looks good, they will start feeding her through her other stoma (in addition to her stomach) so that ALL of her intestine will be digesting milk. This is in hopes of decreasing her TPN (IV nutrition) and improving the condition of her liver.

We are still dealing with the chest tube issue - as both chest tubes continue to drain a significant amount of fluid on a daily basis. Most doctors say this takes a LONG time to heal itself - hopefully soon they can be removed so she can be more active.

Let's hope Jules has another good week and continues in this direction with minimal hurdles. That would be the best Christmas present we could ask for.

Thursday, December 16, 2010

** To "Santa's Elves" that just left a giant box on our doorstep - we thank you from the bottom of our hearts. Now, if we could just figure out who you are!


off the vent! Yesterday afternoon, Jules was extubated. She has been doing pretty well with her breathing since then. She is looking like herself again. Her chest tubes are still draining fluid - but it has slowed down a little bit. She has had a few other issues (minor ones in Juliet terms) - her kidney function has been up and down, she's been having some bleeding from her incision, her electrolytes have been back and forth, her pain meds need constant adjustment etc. etc. But it wouldn't be Juliet if she didn't have something to keep everyone busy.

I just got back from a brief visit with her. She was wide awake, so we sat her up for a little exercise. She did much better this time! Chris is visiting her now - I think he is going to hold her. He hasn't held her since October 21st - the morning of her surgery!! He will be on Cloud 9 when he gets home.

I realized I never posted the picture of Juliet actually wearing her Halloween costume. On Halloween night, she was too sick to wear it, so the nurses just layed it on top of her. A few weeks later, when she felt a little better, they actually put her in it. Enjoy!

Monday, December 13, 2010

Sitting?? She's Not So Sure

Yesterday, I tried to sit Juliet up for a little while. She liked it for about....5 minutes before she started trying to cough/gag out her breathing tube. Hopefully, she will get rid of that in the next few days. The physical therapist in me is going crazy with her spending the last 7+ weeks basically on her back. I can't wait to be able to really exercise this child.

She has had a few pretty good days and has gradually been returning to her spunky self. She loves attention and is happy when people stop by to talk and sing to her. We also seem to have several little elves running around the NICU. Little gifts keep appearing at her bedside. I have found 2 Christmas MOOSE, cute little socks, and adorable shiny silver shoes. Jules definitely gets a lot of love. All she has to do is look up at you with those big eyes and you are hooked.

Friday, December 10, 2010

Feeling better again

Juliet is definitely looking and feeling better since her surgery on Tuesday night. She has not accumulated the fluid that we expected and has remained on fairly low vent settings. She returned to the OR today for a new central line. Dr. Chahine put a double-lumen Broviac catheter in the same spot where her femoral line was. He did not want to do it on Tuesday night, since there was so much infection. Her blood cultures remained negative, so he took her back down for surgery this afternoon. It only took about an hour and everything went fine. Hopefully, she will come off of the ventilator in the next 2-3 days.
Her nurse last night took a few pictures to celebrate her 5 month birthday! Thanks for your continued thoughts and prayers for our little warrior.

Wednesday, December 8, 2010

Surgical Report

Juliet was in surgery for 4 1/2 hours last night. Shortly after 11:00pm, she returned to the NICU with her surgeon, Dr. Chahine. He explained when he opened her abdomen, it was filled with infection and bile. A portion of her intestine had several tiny tears and needed to be removed. He removed about 14 cm. of her small intestine (fairly close to her stomach). As a result, she has 2 stomas again. One that will go into an ostomy bag and one that he hopes to be able to feed her through. This way her entire remaining intestine can be fed and absorb nutrition, in hopes of preventing further liver damage. Her liver was enlarged and discolored, but still soft. Apparently, this means the damage is still reversible. However, the longer Juliet remains on her IV nutrition (TPN/lipids), the more damage her liver will sustain and the higher potential for permanent liver injury. If she can tolerate more feedings through the majority of her intestine, the TPN can be decreased.

Dr. Chahine's best possible explanation for all of this is that the intestine that was stuck in a hernia at her last surgery was the section that had perforated. They repaired the hernia the last time, but it had probably been damaged a little during the process. He suspects this happened fairly quickly after her last surgery (when she was the sickest) and Juliet has been managing the perforation and infection the last 6 weeks. He also suspects the infection was contributing to her chylothorax (excess fluid that is draining in her chest tubes) as it had spread up into her chest cavity as well.

The entire team is hopeful that this is what has been making Juliet sick over the past 6 weeks and now that it is repaired, she will start to improve. So, she has signed herself up for at least one more surgery to reconnect her intestines and take-down the ostomies. When this will happen will depend on her recovery from last night's procedure. Again, like her other surgeries, she is expected to get sicker over the next few days and then start to improve. Last night, she was relatively stable. Today's goals are to keep her comfortable and to closely watch her fluids. So, our little Juliet keeps on fighting. This child not only has the will to live, but the will to make an impact. She is one special baby.

Thanks to all who took care of her last night, through the surgery and beyond. We are eternally grateful. And I almost forgot, HAPPY 5 MONTH BIRTHDAY, JULIET!! XOXO

Tuesday, December 7, 2010

quick update - start the prayers

a real quick update - Juliet is in surgery right now. She wasn't acting herself today and an abdominal ultrasound revealed a large abscess under her liver. This is a different one than the one they saw last week. They are going to go in and explore her intestines to see what could be causing the abscess - and clean everything up. I will update tomorrow, but wanted to post so that the thoughts and prayers would start coming in to get her through surgery.

Sunday, December 5, 2010

The good news and the not-so-good news

First, the good news: I held Juliet today!! Thanks Jess! (one of Jules' primary nurses who was up for the challenge of moving ALL of her attachments)

I loved snuggling with her, even though she didn't really feel so good. That leads me to the not-so-good news. A mid-afternoon chest xray revealed a large amount of air on her lungs. After repositioning her chest tube, she seemed to feel a little better...but not for long. She had a few episodes of dropping her heart rate and oxygen saturation levels. Her doctor wanted to do a more involved adjustment of one of her chest tubes. This required a lot of pain meds and sedation. Since, Jules' was already having a little difficulty today, they decided to put her BACK on the ventilator to adjust the chest tube. The plan is to leave her on the vent through tomorrow and then hopefully take her off again. She definitely wasn't very perky today.

A few new things

After some discussions, it was decided not to do a CT scan of Juliet. The type of CT scan Juliet needs (with contrast) could not be done due to the decreased functioning of her kidneys right now. Instead, they did an abdominal ultrasound to explore her gut a little bit. This showed a small abscess (pocket of infection) under her abdominal wall, but not inside of her intestines. It seems small enough to be treated with antibiotics, but if that doesn't work, they can use a needle to aspirate it (using ultrasound to guide them).

The abscess doesn't explain the green vomit. One possible explanation for that is her Lovenox (blood thinner). They monitor her blood levels to follow that medicine and the level was slightly higher than it should be. They stopped giving it to her for a few days, will recheck the level tomorrow morning and based on that may restart the Lovenox. She hasn't vomited in a day and a half. We aren't positive, that was why she was doing it, but right now, it's the best explanation. That seems to be the case with a lot of Juliet's issues. She really is doing her best to challenge ALL of her doctors.

Respiratory-wise, she is doing pretty good. She is still on the high-flow cannula in her nose and she seems to be settling in. Yesterday morning, her breathing was fast and labored. But, after a dose of diuretic, it improved. Juliet is SO sensitive to fluid - the littlest changes can have big effects. Her weight remains good. Her kidney functioning remains fair. She is off her blood pressure medicine. Her attitude remains fiesty. :)

Thursday, December 2, 2010

Why can't she be boring?

Juliet continues true to her personality and is making me crazy. First the good news, she came off of the ventilator today and has been doing well with breathing on her own. Her weight is down to her "actual" weight.

Now in typical Juliet fashion, she has begun something new. Since last night, she has been vomiting nasty green stuff. At first, they were worried her intestines may have perforated again. However, on further review of several xrays, it was determined that is probably not the case. Could it be an intestinal obstruction? Maybe. Could it be something else? Possibly. They took several more xrays this evening and are considering taking her down for a CT scan. This is much easier now that she is off of the vent and they have been wanting one anyway to look at the clots. This would give them a much better BIG picture of her condition. They were considering starting to feed her again today, but not after this newest development. This child really needs a good lecture about her behavior.