Thursday, July 31, 2008

Day 15

Well, Rhys has mostly stayed the same as what he was yesterday when we left him. His oscillator settings had been tweaked up slightly, but he had a good blood gas when we first arrived today and they knocked it back down. Little man does NOT like having his settings messed with, he seems to want to be left alone. We are in the lobby right now waiting for the team to finish his PICC line (a long, soft, flexible tube that is inserted through a vein in the arm - PICC stands for Percutaneously Inserted Central Catheter). This line replaces the line previously in his umbilical and can remain for a much longer period of time than a traditional IV. It is a little scary to think about because they run the catheter up the vein and stop it very close to the heart. Hopefully all that handling will not upset him.

Rhys' head ultrasound came back the same as before, so that is as good as we could hope for... the bleed hasn't spread. Also, the last time we asked his mucus and blood cultures were negative. We're still fighting the fluid in the lungs, that is an on-going battle. I'm not sure when they will attempt the PDA. They need him to be stable in order to do that and he can't get stable with all the fluid in the lungs. We just got the signal that they are finished with the PICC line, so we are going back in to visit.

Oh, one last thing... we found out last night that we have a primary nurse who signed up for Rhys. This is very encouraging for Cody and me because this nurse will take care of him when she is on shift. So, in essence we will have a "repeat" nurse who will have more knowledge of him. We really like this one too, aside from the fact that she is the one who let me hold him!

Wednesday, July 30, 2008

Here we go again...

We're stalling on our progress. His earlier blood gas levels were so good they had to wean him and dial down the oscillator. Well, he didn't like the changes and they had to increase his oxygen again. That I am not so concerned about, I just don't want a repeat of 24 hours ago. They are trying hard to get him back to where he was before he seriously declines again. Every time we leave and come back I am scared to walk into his pod for fear of what has happened while we were gone. They are trying to minimize his fluids (meds) to keep it off his lungs. His latest lung x-ray wasn't as good as the one from this morning so they are trying to make him pee it off. His PDA is apparently rather large and is contributing to the fluid problem on his lungs. They need him to be stable and off the oscillator before they can attempt to fix the PDA. His head ultrasound results aren't back yet either, so we are waiting on those results as well. Cody and I have stayed at the hospital the last two nights since he has been so sick, but we are making ourselves go home here in a bit because we are so completely exhausted. I seriously think I could sleep for a whole day and still not feel rested.

Rhys is 2 weeks old today

Well our little guy hit the 2 week mark today! The doctors came in this morning and talked to us. They showed us his chest x-ray and it is showing his lungs clearing up! I believe the doctor said the word "fantastic". We'll take that from him any day! They have turned down some of the settings on the paint shaker and his o2 concentration is about 55%. He is still saturating in the low 90s which is great. They have discontinued one of his blood pressure medications and are trying to get him stable enough to return to the conventional ventillator. The next hurdle to cross is a good head ultrasound that shows no more brain bleeding. The doctors want to address his PDA (patent ductus arteriosus) next. They will attempt to close it with medication once. If that doesn't work they will have to surgically close it. There were also grumblings of trying to give him breast milk in the next couple of days. We sure hope so!

Rhys needs you to pray for:
  • His lungs to continue to clear up
  • His brain bleed to subside
  • His PDA medication to do its job, and close his PDA

As you can see the prayers are working! KEEP IT UP!!!

The nurse also told us that he was trying to open his right eye. how cool is that!

Tuesday, July 29, 2008

Rhys is still hanging in there

His last several blood gases have been good. I don't want to jinx his progress (I don't really believe in that, but I am not taking any chances) by saying he's improving, but as of 30 minutes ago when we left him he wasn't any worse. They have gone down on his "paint shaker" settings a few times today and they are no longer worried about his tummy. I don't think we mentioned that in the previous post, but they were worried about his stomach/intestines because it was slightly bloated. They have since gotten a better look (with a more powerful x-ray machine) and they don't think it is an issue. His O2 saturation seems to mostly be staying in the low 90s and his oxygen has been decreased to about 87%. The big concern for us now is the head ultrasound tomorrow. They are going to check to make sure his brain bleed isn't spreading. One of the doctors said at this point it isn't as much of a concern as the lungs functioning properly; however Cody and I can't help but be worried.
I will freely admit that Cody and I were scared to death last night, we both woke up completely exhausted this morning even after 8 hours of sleep. We have been very concerned that Rhys is suffering through all these treatments, but the doctors and nurses have assured us that he is not. He is comfortable from all his meds and they watch him constantly for any sign he is in discomfort. The head neonatal doctor also assured us that he wouldn't be doing this if there wasn't a possibility of it being worth it. Once again, Cody and I would like to say thank you! to everyone who has offered encouragement through their posts. It has been amazing to see the support of family, friends and even those we have never met. This little man is greatly loved and we can not express how grateful we are for the prayers on his behalf.
Oh, and Rhys had his first blood transfusion today from one of your donations! Someone who has B+ blood helped replenish his blood supply. :)

Day 13

Well, all of your prayers must be having an impact. Rhys is still heavily sedated and paralyzed (on purpose) but he seems to be holding steady. We're taking very small steps, but we will take what we can get. His oxygen saturation is back in the 80s and 90s. The latest lung x-ray shows that his left lung is clearing up just a little bit and he is making good pee-pee diapers. He is scheduled for another head ultrasound tomorrow morning to track the status of his brain bleed. Let's hope and pray it will resolve itself and not get worse! Please continue to pray for Rhys' little lungs to clear up and for his brain bleed to not have spread. And thank you to the Kolkhorst family who popped in to see us today. It is very encouraging to hear/see a success story.

Rhys needs your prayers desperately

Rhys is not doing well. His oxygen saturation has been yo-yoing all day. Any time he is touched he rapidly declines and slowly crawls back up again. He was put back on the oscillator around noon and he doesn't like it. He began protesting against it and is now heavily sedated (read paralyzed) and is on a morphine drip. He has about 8 pumps pumping different drugs for this and that. He underwent another head ultrasound and it revealed a grade 3 brain bleed. Rhys is in desperate need of a miracle from God. Please pray for God to heal Rhys' lungs and brain. Candice and I would like to thank everyone for their prayers and support, it is what is keeping us going.

Monday, July 28, 2008

Day 12

*sigh* What can I say? Another terrible night. The pressure on the ventilator is up to a worrisome setting and he is still at 60 bpm. The "paint shaker" (oscillator) is on stand-by and the nurse is waiting for the doctors to make the rounds and discuss what they want to do. He is on 100% oxygen and his latest blood gas wasn't so great. What happened to the 50% oxygen from yesterday? The line in his belly button that they used to draw blood has collapsed (they usually only last 10-14 days) and they are going to have to replace it with an IV sort of set-up so they don't have to stick him every time they need blood. Cody knows the official term, but I can't remember it. I am very worried about our little man. He responded well to the oscillator at first, but then hated it. They put him back on the ventilator and he was great and now he isn't doing so well. His left lung seems to have cleared a little, but now it is his right lung that is giving them fits. Please can SOMEthing be stable? I'm losing my mind.

On a good note, the blood transfusion has helped his blood pressure and he isn't on that medication right now. And, he still has wet diapers which is a good thing.

Sunday, July 27, 2008

Day 11

Well, today was a big day for us at the NICU. Rhys seems to be having good days and not so good nights. They say this isn't necessarily abnormal, however they don't like the drastic swings back and forth. They have increased his breathing pressure slightly and he is at 60 bpm again. His blood pressure was low, so he got another blood transfusion (thanks again by the way to everyone who has donated, at last count Rhys had +/-20 pints in his name - amazing!). We were there for 5 hours today and his blood gas tests came back pretty consistent, so that is good. They have sent his lung mucus and blood off for cultures again. They seem to think he might be getting a lung infection, based on his ups and downs. We're praying for no positive cultures! They have put him on antibiotics again as a precaution. He was on antibiotics for his first seven days since Bentley had an infection, so at least he's already had one round.

Rhys got some tummy time today and we got to change our first diaper. I have changed plenty of diapers in my life, but never one on a 1.5 pounder. I was amazed at how small his little rear is, he hardly has one. I am sure he will appreciate that when he is older. Everything is so tiny you feel like you're all thumbs. Rhys took it like a champ! I also got to do Kangaroo Care today for the first time. Wow! For those who don't know about Kangaroo Care, it is skin-to-skin contact with baby and parent where they lay the baby on your chest. Moms and dads both get to do it, and according to the nurses there is a drastic difference between babies who get it and those who don't. I will be up there every day for as long as they will let me if it will help get Rhys home. So after 12 days of life I finally got to hold my baby boy for 2 hours! I think daddy wanted very badly to hold him as well, but Cody was selfless and insisted I go first. I really didn't want to give him back. Anyway, pictures are posted and we are praying for at least a decent night.

Saturday, July 26, 2008

Day 10

Okay, so little man didn't have a great night. Cody called this morning and Rhys' oxygen was over 90% and they had made changes to his oscillator again. We got dressed and went to visit. As we were walking into the NICU we ran into his primary neonatal doctor. He told us that they switched him back to the old ventilator because Rhys wasn't responding so well to the oscillator. He said in the long term this isn't good for his lungs because of the pressure, but in the short term if that is what he needs then it is "manageable". That might not sound like a great report, but this doctor is very no nonsense, so if he deems it manageable, to me that means it isn't horrible and I will take it!

He was at 50 breaths per minute (BPM) when we got there and about 90% O2. The RT (respiratory therapist) knocked his O2 down to around 80% and his saturation was still at the upper end of his 85-95% range (good thing!). The nurse took a blood gas right before we left and told us it was very good. They decreased his BPM to 45 and were going to take another blood gas at 3pm. We are praying this doesn't mess him up again, as that is what happened the last time they took him below 50 BPM and he ended up being moved to the oscillator.

On another note, we had to sign a general release last night for any procedure they might deem necessary. Of course we signed, but it is hard to hear them detail all the possibilities (even though you knew it before they mentioned it). I heard words like "sick" and "chronic" used to describe my son's condition and I have to say I didn't like it. Yes, I understand my baby needs oxygen right now, but chronic lung disease to me is someone who has smoked for 50 years and has no lungs left! I guess that is something we have to let not bother us. It is a technicality as far as I'm concerned since he fits the definition.

UPDATE: Rhys has had TWO good blood gases - he is still at 45 BPM, but they lowered his pressure. Please let us maintain this progress. Rhys also had his first poopy diaper, which made daddy unbelievably happy. This does not necessarily mean he is ready to start eating, but it is a fantastic thing that all his stuff is connected and working properly.

Friday, July 25, 2008

New Picture of Rhys

Rhys is out from under the bililight. His eyes are moving alot and he looks like he will open them soon!

Head Ultrasound #3

Rhys' doctor called and gave us the results of his third head ultrasound. His brain shows no signs of bleeding, which is a very big deal. Most of the other organs in the body can cope and react to internal bleeding, however the brain cannot. The doctor expressed to us this is another big hurdle to cross. Keep up the prayers for Rhys, they must be working!

Rhys' new respirator

Well Rhys was having some troubles with his old respirator. He has some fluid on his lungs which prevent him from breathing in and out efficiently (he wasn't breathing off enough CO2). The doctor has put him on a new respirator that works much differently. This respirator is know as the oscillator. It works by breathing about 300-500 breaths per minute of tiny little puffs of air. This keeps his lungs expanded so they don't have to contract. The pressure exerted on his lungs to expand and contract was becoming worrisome for the doctors, so the decision was made to switch respirators. The oscillator is loud and vibrates alot and therefore vibrates Rhys' little chest. As you can imagine he doesn't like that so much and he fights it. By fighting it, Rhys is buring too many calories that are needed to help him grow. He was put on a sedative to calm down and relax and he seems to be breathing off more CO2. The doctors have put him on some lung treatments to try and get the fluid off his lungs. Once the fluid is out of his lungs he can resume the primary respirator that works more like a normal breathing action (about 50-60 breathes per minute). Other than that his blood pressure, blood sugar, and sodium levels look good. He has got about 4 or 5 blood transfusions so far, so THANK YOU to everyone who has donated blood in Rhys' name. He really appriciates it :) Continue to pray for Rhys' little lungs to grow and get strong.

Wednesday, July 23, 2008

Rhys is 1 week old today

Today Rhys turned 1 week old. He underwent a treatment under the bililight for jaundice and the light was removed yesterday. His breathing and lungs are the biggest challenge facing him now and all efforts are being made to ensure the ventilator is helping keep his fragile lungs working correctly.

You can see my wedding ring on his left arm. He's a tiny little guy!

Rhys and Bentley are born

Baby Rhys
Baby Bentley

Rhys Logan and Bentley Deats were born on July 16, 2008 at 11:06 a.m. 16 weeks pre-mature. Each weighed in at 1 lb 7 oz. and 12 in long. They were immediatley rushed to the NICU for treatment. Bentley suffered an infection while in the womb and the doctors were not able to stablize him. Bentley passed away at 12:10 a.m. July 17, 2008. Candice and I would like to thank everyone for their support during this difficult time. We have been overwhelmed with the show of love and support from family and friends. I hope to use this blog as a communication tool to keep everyone posted on Rhys' condition.