8/5/06: Day 22 (Sat.) On the Conventional Respirator*

A very good day today! Another small hurdle has been cleared...Evan was taken off the oscillating (high frequency) respirator and is now on a conventional respirator! Fingers crossed he won't have to go back to the high frequency respirator!

Evan's primary nurse, Marianne, told us that Dr. Edde made the decision Saturday morning to switch him over. The doctor just had a feeling it would work, and she was right. When they switched him over, they had to manually give him oxygen (with that squeezy-bag-thing, for a lack of a better term)...but, Marianne said that he was breathing on his own during that time. Another good sign that his lungs are maturing. Now, the next step is to keep monitoring his CO2 levels and if they remain in the good zone for an extended period of time, then they can wean him completely off the respirator onto the nasal CPAP.

He was in a much calmer state today...Marianne has continued suctioning him more often which is helping (although Evan gets so mad in his face when she is doing it). She is also keeping him in a swaddled condition with a thin blanket. She said this is also helping him stay calmer and keeping his arms and legs from flailing around so much. They also say he is keeping his body temperature consistently at a very normal level, and that means he may be able to move into a crib soon. When that happens, it will be much easier for us to finally get to hold him.

Now that he is on the conventional respirator, the respiratory technician (RT) has to do "treatment" on him to help get all that gunk loose in his lungs. While we were there, one of the RTs, Roy, did a session on him. All he does is tap this cup-like thing on his back for a few minutes, then suction him. Evan didn't like it at all and it was evident in his face (he turned bright red and looked like he was trying to cry). It's all progress though!

Momma changed his diaper while dad watched...T still hasn't done a diaper change by himself yet. Hopefully that will change soon! He's still getting his feeds (3ml every three hours). So far, no adverse reaction to the breast milk. Now that they took out his arterial line a few days ago, they are taking all his blood gas test from his heel (which he doesn't like very much either). The burn on his right foot is still healing (it is classified as a third-degree burn, ouch). Hopefully it will be completely healed by the time he leaves the hospital. When Marianne was switching his Pulse Oximeter from his foot to his hand, Evan gave her a big fight...he refused to open up his hand...we were all shocked at how strong his little fingers were. She eventually got the monitor placed properly, but the kid's got grip!

Lots of good news today on Evan's 34-week mark (6 weeks away from being full-term)!



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UMC Charges: $8,171.05
Running Total: $215,331.89
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7/31/06: Day 17 (Mon.) PDA is Healed!

Some good news today...they did Evan's chest ultrasound and it showed that his PDA is all healed. No PDA ligation surgery, yea! We had the opportunity to talk to Dr. Edde while we were there and she was pleased to give us the good news. She is considering starting a mild steroid treatment in hopes of giving him a little push to wean off the respirator. I think she had said this was her last day as the attending physician, so I think she was going to confer with the oncoming attending physician to be sure of the treatment plan.

Evan was so nice and calm when we first got there, but then, turned into mister fussy again. T and I watched him like a hawk since he was flailing his arms around (we were worried he would dislodge the respirator tube). It seems like every time they give him his dosage of Ativan, he gets really agitated. It was sad watching his little face grimace like he was trying to cry. It was like he was really trying to get that tube out. One of the nurses put a little bit of this sugar-water mix on his lips...she says that the mixture causes the brain to release endorphins (sort of like when you eat chocolate). He did start calming down a bit afterwards.

<12:05am>
O.k....the steroid treatment is a go! He'll be on a course of steroids for the next week (3 times a day, with the next three days being the highest dosages). His night nurse said he's been very calm (he hasn't pulled out his respirator tube thank goodness). Fingers crossed this will get him off the respirator! The nurse also said they started feeding him breast milk again (very small doses for now).

I'm driving up solo tomorrow so I can spend a bit more time with him.

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UMC Charges: $8,276.25
Running Total: $179,526.89
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7/28/06: Day 14 (Fri.) Two Weeks Old! PDA Diagnosed

Today we took a break and didn't drive up to Tucson. When I called the NICU to get an update on Evan, the nurse told me she was going to have the resident doctor (Andrea) call to discuss the results of an EKG they did. Andrea called me back about 30 minutes after I had called and told me the results of the EKG weren't in the computer yet. She did say that Dr. Eddy (who is the main doctor) would speak with us on Saturday about starting steroid treatment on Evan to help wean him off the respirator. There are good and bad points of using steroids, but the benefits far outweigh the risks. The one big risk is that steroids supress the immune system which can make him prone to infection. The benefit would be that steroids cut down on the lung inflammation, which would help him breathe easier.

The rest of the call went well...nothing else major to report about. About thirty minutes later, the phone rings again and it's the NICU. Andrea was calling again to tell me she saw the results of the EKG. She said that the EKG shows that Evan has a PDA, which stands for Patent Ductus Arteriosus (it sounds like a Harry Potter spell to me). :-) It is a very common condition that the majority of preemies get. Not to get too medical technical on you, it basically means, a blood vessel near his heart and lungs did not close as it is supposed to do after birth. When a baby is still in the womb, that blood vessel sends blood directly into the aorta (bypassing the lungs which aren't being used yet). When a term baby is born and starts breathing, the PDA starts to close automatically. Since Evan wasn't born at term and didn't start breathing normally, his PDA didn't get that signal to close. Andrea says that almost 80% of the babies in the NICU have PDA, so he's not alone.

So, treatment is for him to get doses of indomethacin over the next few days (the only drawback is that this medication works best if the baby is within 2 weeks of birth and Evan is right on that time limit). If that medication doesn't close the PDA, then he will have to have surgery to close it. The PDA ligation surgery (if he has to have it), is a very safe operation and is always successful. They would go through his back (so it's not open-heart) and the result would be a very small scar that would fade over time. So, fingers crossed the medication works, but if he has to have surgery, it's not anything to worry about.

So now, with that second phone call, the steroid treatment is on hold since the PDA treatment takes priority. The PDA could also be contributing to Evan not coming off the respirator more quickly, so we'll be glad to get that cleared up. After the PDA heals, he may not need the steroid treatment anyway.

We'll get more details tomorrow after our visit.

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UMC Charges: $9,825.95
Running Total: $155,329.44
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