Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Wednesday, September 1, 2010

Back On 100% Oxygen, Infection, and more Pediatrician Hunting

Thomas writing. I hope the titled didn't scare anyone, let me explain...

Whitney is still working on her feedings. With regards to her feedings, she has good days, and bad days, then really good days, and then really bad days. There isn't much consistency, which is what the doctors and nurses are needing to see. While Whitney is being able to take in increasing amounts of formula by the bottle, the progess is going slower than the doctors were expecting. They had an echocardiogram done on Whitney and found that while she is able to breath and oxygenate all by herself without any additional oxygen support, she still does have some minor residual pulmonary hypertention still left in her lungs and it may be affecting her ability to eat. Lately, Whitney has only been able to take in between 25 - 45 mL of formula each feed before she either loses interest in the bottle, or just gets too tired to continue sucking and swallowing. Our primary doctor decided that since there is still some hypertention in her lungs, they wanted to put her back on the nasal cannula and provide oxygen support with the hopes that this will give her more energy so that she will not tire out so quickly during feeding times. So they put that nasal cannula back in her nose and gave her a low flow of oxygen. They set the oxygen level at 100%. When I saw this, I asked the nurse if that was necessary, and she explained that it was just fine and wouldn't hurt Whitney. Since Whitney isn't a preemie and since her eyes are already fully developed, it wasn't going to put her at risk for blindness or anything like that. I'm not a doctor and I didn't quite understand all the reasoning, but they explained that they weren't giving her the oxygen because she needed more oxygen in her blood (because she was her blood was saturating just fine), instead they were giving oxygen to help aleviate the residual pulmonary hypertension.

So she's been on oxygen for a couple days now. And whatever the logic was behind the doctors, it seems to be working. Since she's been back on oxygen, she has been taking in much more from the bottle than previously before. Like I mentioned, before she took between 25 - 45 mL on average, now she's taking in between 50 and 60 mL, one time she even took 72 mL of formula! So this is good news. The doctors would MUCH MORE prefer to send Whitney home with an oxygen tank than to send her home on a feeding tube. So we are looking to still be in the NICU for at LEAST another week or so depending on how much Whitney continues to improve.

Okay, the next thing we stumbled upon over the past day or so was an infection around the CDH repair scar on her belly. Half the scar looks just fine, and the other half started to get inflamated pretty bad. They called down the sureons who took a look at it. There was some fluid (mostly puss) that was building up around the incision site, and the surgeons had to squeeze a lot of it out, and then put Whitney on some anti-biotics to make the inflamation go away. *Sigh* More drugs, but anything to keep her from getting worse. We are just dying to get Whitney home!

One of the doctors who has been keeping a close eye on our Whitney asked us if we had chosen a Pediatrician yet. We mentioned a few Pediatricians, and this doctor wasn't familiar with who they were. The doc then advised us to take caution when choosing a Pediatrician, because Whitney has a very serious and unique case. Whitney isn't like other healthy children. So while its important to like the doctor, its even more important to ensure that the doctor has the experience and ability to do what's necessary and what's right for Whitney's unique case. Our doctor urgently recommended that we continue to seek medical attention at St Joseph's Hospital with regards to Whitney's ongoing pulmonary hypertention. If Whitney is discharged from the hospital with an oxygen tank, the NICU doctors wouldn't feel confortable letting the Pediatrician decide when its time to take her off the oxygen. The NICU would strongly prefer that our Pediatrician send a referal back to St Joseph's Hospital's cardiologists to make that determination since they were the ones who have been dealing with Whitney this whole time (even since before birth) and know her best.

Also, the NICU doctor says that if for any reason Whitney wasn't feeding fully and was losing weight or not gaining enough weight for her age, our Pediatrician needs to send an immediate referal to send Whitney to the Phoenix Children's Hospital (PCH) feeding clinic to get her back on track. The NICU doc says that this hospital is the absolute best at what they do and it can sometimes be hard to get into it because they are very busy. The NICU doctor is worried that some Pediatricians might see Whitney lose a little weight and not send the referal, but instead say for us to come back in a month or two to see if she's gained more weight. NICU doctor warned us that if we wait too long and she starts losing too much weight, her brain could be starved and become affected. The reason that its so important to make the referal early is because the PCH is very busy and early referals are needed to get into it in a timely manner.

So to recap: We need a pediatrician who is affiliated with Phoenix Children's Hospital and St Jospeh's Hospital and is willing to make the necessary referals as explained above. Our pediatrician needs to be very experienced and have a history of having dealt with children who were born with CDH. This might be a tall order, but it's needed.

I've read statistics that between 2000-2500 babies are born each year in the United States with CDH, only half survive, leaving only about 1000-1250 babies per year alive and who need a Pediatrician. There are around 800 different Pediatricians just in the Phoenix Valley alone. The chances of finding a Pediatrician who has genuinely dealt with a lot of CDH babies is probably very slim. This is frustrating just thinking about it.

1 comment:

  1. I can't begin to imagine how frustrating it must be trying to find a pediatrician that can handle Whitney and her condition. I think though the most important thing for you both is to realize that you have to be your daughters advocate which I know you will be great at. As I have seen already you are both willing to gain knowledge and find out what is necessary for you to know to give Whitney the best possible. You have already made a great start in asking questions and learning any warning signs. No matter where you end up with a pediatrician you will be in the position to demand the best care. No one will know Whitney better then her parents and you will be the ones who may notice signs and symptoms first. If you are informed and know what to look for anything that may come up can be caught early. In situations it may come down to not resting until the symptoms are completley checked out regardless of what the pediatician may say. The medical world can be a difficult place most importantly is getting the care your daughter may need when she needs it.