7 months old today

Our little peanut is 7 months old today. She decided to scare the crap out of her parents (again) for her birthday. We got to the hospital this morning and the respiratory tech was bagging Molly. The problem she seemed to be having was bronchospasms, sort of like an asthma attack but different. Ha. They ended up bagging her for 3 hours and tried almost every mode they could on the vent. For a moment I thought they were going to bring out the oscillator, but they didn't. So, now she is on continuous albuterol and they had to paralyze her with a stronger paralytic (vec which is rough on her liver). Earlier, she wasn't moving any air at all in her lungs, now she is. I was scared. 

Anyway, onto other things. We should know if Dr. O was able to get funding for the omegaven tomorrow. Supposedly. Her liver pretty much is staying stable. Her belly girth is up to 55cm. She is peeing good though!

Some prayer requests: please pray that Molly can get the omegaven here in Dallas. I don't know if she can handle a transport to Houston right now. Please pray that her belly size goes down. Please pray that her gut gets better as there are currently no bowel sounds.

Thank you everyone.

The picture Is from a "paralytic holiday" she had on Saturday. She lasted 2 hours! It did us good to see her move and open her beautiful eyes.

Omegaven saga continues

I first would like to thank everyone who has followed along and given anything they can to help us out. Everything is appreciated so much.

Molly is holding steady. Her girth is still at 54 cm. Her weight is up but it seems like the fluid is slowly coming off. Her ammonia is staying around 45-70, which is awesome. Her bili is staying about the same, which is a lot lower than it had been. Because of this, she is less yellow and jaundiced.

I spoke with the attending, Dr. Luckett, yesterday about the omegaven. I'll try to keep this as short as I can. There is a doctor, let's call her Dr. O. I do not know what her real name is. Dr. O is a GI doctor who would be the one giving the omegaven. Dr. O is here at Dallas children's. She has about 2 months worth of omegaven here at our hospital. Apparently there is a lot of red tape to get more omegaven, but the big obstacle is funding. Because this med is considered experimental, we cannot be billed for it. This means that the hospital has to foot the bill. Which means they have to find funding for it. Another aspect is that 3 of the top 5 children's hospitals in the US are using omegaven, but Dallas is not. If we were to transfer to one of those top 3 (Houston), it wouldn't look very good for Dallas. It would look like they aren't as good as their competitors. This is good for us because it means they want to get it for us here. But then there is that funding issue. I asked Dr. Luckett if we can start a fund for it. He said he was going to ask Dr. O about that and it has been done in the past. I also told him we were thinking of going to the news to tell them about it. He said, I like the way you think. It's hard for us to fathom that there is a drug out there that can potentially save our daughter's life and we cannot get it because of a hospital funding issue.

Here is a link to a news story done about omegaven awhile back. I urge you all to take the time to read this. Thank you!

http://rockcenter.nbcnews.com/_news/2013/06/07/18833434-drug-treatment-omegaven-that-could-save-infants-lives-not-yet-approved-by-fda?lite

04/23/14

Molly is holding steady. She is off the epinephrine, still paralyzed though. She has so much fluid on her - about 4 pounds worth. It may not sound like a lot for you and me, but for a baby, it's a lot. What happens with Molly is that when she has this fluid overload, it disperses everywhere. This includes her lungs, her belly size, even the lining of her intestines. So, they have her on a lasix drip to help her pee it off. Because her belly is so distended (her girth should be about 45cm and is currently 54cm) and her lungs are wet, her respiratory status has gotten worse. They have had to increase the support she needs. Oh yeah, she is on nitric oxide as well at 20ppm. This is used to treat pulmonary hypertension (PH). In order to wean her off the nitric, they have started her on a new med to treat the PH. This med is sildenefil, also known as viagra. So, hopefully they can start to wean the nitric soon.

Now, onto the big topic of omegaven. I have all the wheels in motion for the transfer to Houston, except for one. On Monday, we got a new attending physician. He is not quite on board with transferring her. He wants to learn more about omegaven, which I understand. But time is of the essence. I learned earlier that the new attending GI doctor is in talks with the short gut head honcho doctor. He wants to get omegaven here. So, we will see what transpires this afternoon hopefully. I am still doing what I can to get her to Houston in the mean time.

Nicole was able to come stay from Saturday until yesterday (Tuesday). That was great and much needed on my part. Mom and Tim's parents came by as well this past weekend. I know they all miss seeing Molly.

I guess that is all I have for now.  Now, a few pictures...

Easter weekend

On this Easter weekend, we ask that you pray extra hard for our little peanut. We are having another episode just like last weekend. She is paralyzed again and on epinephrine. Her belly is sick again we think. The doctor asked us if we wanted to continue care. No parents should be asked that question.

Please pray that Molly fights hard, stays strong, and that the Lord heal her and let us keep her here with us.

Thank you

04/16/14

So.....this weekend we realized how fragile our little peanut is. She had a very rough weekend. This is what happened....she got her trach. Apparently there was bacteria in the ET tube. The trach surgery kind of shook that up. Her liver is not functioning right and one of the jobs of the liver is to filter out toxins and bacteria. Her liver couldn't filter out the bacteria and she became septic. She ended up on 2 "big gun antibiotics", fentanyl drip, a paralytic, dopamine, and epinephrine. As of today, her tracheal aspirate is no longer growing anything, so infection is under control. She is off the paralytic as of this morning. They are weaning the bp meds. As of this afternoon, she is off dopamine. She is on the evil TPN. But, it supposedly does not contain all of the toxic substances that initially hurt her liver. They hope to slowly reintroduce feeds tomorrow.

Now, onto our next plan. Her liver is terrible. I have been researching a little drug called omegaven. It is an intravenous omega-3 fish oil. Dr. Puder at Boston Children's Hospital, along with a pharmacist there, have been giving sick kids like Molly omegaven for years. It is not fda-approved so you cannot get it everywhere. I actually talked to Dr. Puder on the phone Sunday. He says she is a candidate for omegaven. He said the doctors at dallas children's can get it for Molly but they usually just don't want to pay for it. He said we can either go to Boston or Texas Children's as they give it too. Of course, Boston is the top notch of childrens hospitals. Anyway, one of Molly's pedi G.I. doctors is trying to get it for Molly. We'll see how that goes and go from there. By the way, omegaven reverses the liver damage caused by the TPN. Even kids with cirrhosis were successfully treated.

Now onto plan #2. Molly may have to get a liver transplant some time in the future. They said she would not be on the top of the list, which is good in a way. It means she doesn't need it right away.

So, that is where we are right now. Of course as always we need so many prayers. Prayers that she fights this infection, that we are able to get omegaven, that her liver starts to heal itself.

Pictures are from Molly being paralyzed (the one with the bow), and Molly's first Easter basket.

P.S. Molly had her first trach change today. Tim and I have our first trach class on Friday. We get to start learning all about her trach.

Day 197

So, Molly has pneumonia. Her oxygen needs have been increasing. They even had to bag her today to get her sats back up. I couldn't watch that, had to leave the room. They did a tracheal aspirate culture just this morning. Preliminary results came back this afternoon. When the results come back that fast, you know some infection is definitely brewing. The culture showed "many gram negative rods." So, zosyn (antibiotic) was started. Hopefully they caught it soon enough.

Molly has actually been infection free for a couple of months. Too bad we couldn't keep that streak going. Please pray that the antibiotics kick in fast. If she gets too agitated and squirmy, they are going to have to paralyze her.

04/11/14

Molly got her trach yesterday. The surgery itself only took about 45 minutes. The surgeon also did a bronchoscopy to take a look at her airway. Kids who have been intubated a long time can have scarring, narrowing, all kinds of stuff. Other than a little swelling from the ET tube, Molly's airway looked great. This is good news when it comes time to decannulate (have the trach removed). Post-op, she is doing pretty good. The vent settings are up, which is expected. She is on a fentanyl drip for pain and sedation. She is also on very minimal stimulation. The idea is to keep her as still and comfortable as possible for the first few days. The stoma needs about 5 days to allow the tract to form. After 5-7 days the ENT surgeon will do the first trach change. After that, Tim and I start to learn how to do trach cares and changes. We are actually scheduled for our first trach class next Friday at 11:00am. They encourage us to dive right in which is what we intend to do!

Pictures are right before surgery and after.

04/09/14

I'm going to keep this post short. Molly is scheduled for surgery for her tracheostomy at 8:45am tomorrow. We are both ready and scared. Molly's life and our lives are going to change drastically.

Tim wanted me to be sure to write about Molly's developmental progress. Per the therapist, Molly is doing the things a 3-month old baby should be doing. One thing Tim specifically loves is that Molly swats at the block mobile that hangs over her. It is the cutest thing. She is making so much progress.

I ask anyone reading this to please pray for Molly. Please pray that her surgery goes smooth and is successful. Please pray that Molly is not in any pain. Thank you!

And now....pictures!

04/04/14

It's been a busy past week in the world of Molly. This post will be piecemeal because there is a lot to cover.

Liver: The official results from the liver biopsy are in. Nothing changed from the preliminary results. Damage to liver is TPN-induced cholestasis, no cirrhosis, damage is reversible. They give her 2 medicines for her liver and have started to wean them. They do biweekly labs, checking liver enzymes and clotting factors, along with ammonia level. They seem to all be stable, even with backing off on the liver meds. So, that is good. 

Feeds: We finally ran out of breast milk. The dietician wanted to try her on progestimil which was better for her liver. However, her tummy did not like the change. She spit up over and over again yesterday. So, they went back to using neocate. This formula has been tried and true with Molly so I feel good about using it. So far, so good.

MRI: Molly got her head MRI this past week. It is something that they wanted to do before discharge. You may or may not remember that Molly had a grade 1 (very small) brain bleed (IVH). It resolved on its own in Molly's early days. So, there was some concern about the brain damage this could have caused, along with her 3.5 month fentanyl dependency. We got good results from the MRI, thank the Good Lord. They said they saw what they expected to see in a premature baby who has been hospitalized since birth for 6 months. Nothing major and completely expected. Some of her brain is a little slower to develop. She is going to need a lot of therapy (speech, physical, and occupational) when we get home. This was totally expected though. 

Trach: Molly is slated to get her tracheostomy next Thursday, April 10. No set time yet. Once she gets her trach, we will be making our way out of Children's PICU. She should be sedated for the first several days after surgery. At 5-7 days after surgery, the surgeon will do the first trach change. One of two things will happen then. Ideally, she would then move out of the ICU and onto the pulmonary floor. But, apparently that floor is always full and you have to wait awhile for a bed. So, if she can't get to that floor, she will stay in the ICU. They will start to teach Tim and myself how to care for the trach and g-tube. She will be transitioned to a home ventilator and we will learn how to use it. During this time we will be waiting for a bed at Baylor Our Children's House (BOCH). When a bed is ready, she will move there. It's basically a place where we will stay with Molly, become comfortable with all of her care and doing it ourselves, then make our way home. From our understanding, our length of stay at BOCH will be up to us. By this I mean how quickly we want to learn what we need to learn. Of course we want to learn as fast as we can, while still being completely comfortable being Molly's caretakers. So, all that being said, I see us making our move home in 6 weeks to 8 weeks. 

Vent: Molly continues to have good blood gases (this morning's was pH of 7.40, co2 of 49). The vent pressure is now 16. I believe they weaned the PEEP from 6 to 5. All of these things are very good!

Misc: Ma (my mom) and Nicole came to visit Molly on separate occasions. It had been since Christmas since Nicole had seen her. At least a month, probably more, since Ma had seen her. We have been trying to get Molly into a bouncy seat at least once a day. She seems to like it okay. Both Tim and I have been able to hold her as well. And, she got to wear a dress for the first time ever. It wasn't an easy thing to get on her, but the nurse made it happen! And, she looked oh so cute. I must buy more dresses!

Now, some pictures from the week, including poses with Ma and Auntie Nicole!