Tuesday, April 11, 2006

I wish that I had good news...

Where to start? This is going to get long and possibly rambling.

A couple of nights ago, I helped Drew's nurse weigh him. That meant I got to help hold him up off of the bed. So not really holding him but more than I've ever gotten to do before. That was right before things turned bad.

All feedings of breastmilk have been stopped.

Last night, we witnessed Drew desat all the way down into the 60s (pre-ductal) and 30s (post-ductal). He turned quite blue as he was not getting the oxygen that his body needed. His heart rate went down into the 60s. All of this because the nurse attempted to get his temperature (underarm). It was very bad and very scary. It took him about 10 minutes to get to where he was before the episode. I've been assured that there will be no longterm harm from such episodes; that would only happen if it took him like 3 hours to recover. But I can't help but wonder...he's been having such episodes every time a medical person touches him for the past few days. And they HAVE to touch him--even trying to stay hands-off, they have to do things that upset him. He looked about as blue as a blueberry last night (to me--I'm sure he wasn't THAT blue but it was very noticeable even with most of the lights off).

Then this morning, before we even got to Drew's room, we heard a noise that we know all too well. He is back on the oscillator/oscillating vent. That's the one where he has to be paralyzed and it just shakes his entire body. It delivers short puffs of air to the lungs. I don't know how many breaths per minute it's at right now but I do know that the last time he was on it, it was at 900 bpm. You read that right *900.* It's easier on the lungs than the convential vent which delivers deep breaths to the lungs. But it is a fairly large setback to have him on that again. The last time he was on it was right before he went on ECMO, and that won't happen again (ECMO, that is).

He had to go on this oscillator because his blood gasses got horribly bad. After surgery, his carbon dioxide was at 93, the highest it had ever been. Last night, it was greater than 130 and his ph was down to 6.8. I know I've stated the optimal range before but here they are again: carbon dioxide=35-45, ph=7.35-7.45.

We are upset that we were not notified of his being put on the oscillator, we walked in and it was done. I don't care if it was within an hour of shift change, a 5 second telephone call is not that hard to make when our phone numbers are posted in a couple of places and we are ON-SITE. I'm very upset about that right now. I also don't care that he had a new nurse last night, we need to know what is going on at all times, especially when it's such a big change. Raymond did say something about it this morning and I'm trying really hard not to get bitchy about it.

That's another thing--after 5 weeks, you'd think he'd quit having new nurses. As a parent, it's unsettling to walk in and not know who is taking care of your child. The nursing staff is WONDERFUL but we've become closer to some that have been with him since day 1 and know his entire history. Yes, one can learn the history from reading his chart but if they haven't been there from the beginning, I worry. Besides, his chart is HUGE at this point, there's no way they could read the entire thing and know his personality or what is "normal" for him. I don't doubt their skills at all, it's just a comfort thing for me. And I know of one instance where a nurse requested Drew and she was not assigned to him. She was pretty upset about that. I'm sure it's work politics at play but dammit, don't play that crap with my son's care. Sorry for the rant, I just feel blindsided when I have to introduce myself to a nurse as Drew's mother.

Drew's swelling is still a big issue. The left chest tube has cut down on drainage considerably; that's a good thing, right? That's what we've wanted. BUT now the fluid is building back up in the open chest cavity around his left lung and it seems to be compressing that lung. His body is going to have to learn to live with fluid in that cavity while keeping the lung working. It's not learned that yet. They could go in and suction out that fluid but it depletes a lot of protien and it will just fill up and compress his lung again.

For a couple of reasons that I won't go into right now, the various forms of dialysis that he's had in the past, and one he hasn't had to have, can't be done to help pull off the fluid. It's all on his kidneys right now and will have to remain that way. He's got about 1 kilo (about 2.2 lbs.) of excess fluid. His head U/S taken yesterday was clear, it's only fluid outside the skull causing the head swelling.

He's still on the INO because there is a concern that the pulmonary hypertension might come back. It's not looking like it has as of yet via heart echo; they'll get another one tomorrow. If it does come back, that's very bad at this point. There are a few things that can be done medically but not many. Dr. M. wants to wean him back off of that fairly soon.

Drew can be given Viagra (yes, you read that correctly). It was actually developed to treat pulmonary hypertension--to expand the arteries--and the treatment for ED was a side effect so it was fast tracked for FDA approval. It's now marketed under another name to treat adult PH due to the stigma attached to it, but it's still Viagra. I've been told that we might have problems with insurance approving Viagra for Drew since it's not used under another name for infants/preemies. :D They'll approve it, it just might take some explanation. Just an amusing and interesting side note, I thought.

Even though his cultures that were taken on 4/9 and are being grown are showing no signs of infection, the prevailing thought is that there IS some kind of infection going on. Pneumonia is suspected. There's not a large area showing up on his lungs on x-ray but it looks like he could be developing it. His white blood cell count is up around 21,000; that's not as high as it looks because infants normal WBC is between 16,000 and 17,000. It is elevated and indicates an infection though. So basically, we just don't know right now and he's on general antibiotics.

Another rant: I'm just so tired of all of this. I'm so irritable right now and just want to check out (not suicidal, just tired). I'm tired of pumping, I hate it but I know I'll keep doing it. I feel detached from my own life at times and snap at everybody. I don't like the person I'm becoming. Add to that the tremendous guilt I feel because I can't be with Drew as much as I'd like. Due to many things, I haven't made it to the hospital for my afternoon visit yesterday or today and I feel like the worst mother in the world. I feel so cheated because I havent' gotten to bond with Drew. Hell, I just want to hold him in my arms like a regular baby; that would help a lot. And Elizabeth is just being Elizabeth but she's getting on my nerves right now so I snap at her. I'm just having a pity party, whining and being selfish right now and not feeling optimistic at all.

Edited to add a link to video for those who have asked about the oscillator and what it sounds like: Video Link It will only be up for a few days.


sisteramymariecurtis said...

As the mother of a CDH child, I can relate to what you are going through, and yes, it is exhausting, both physially, emotionally, and mentally. May the Lord be with you and give you and Drew. Praying for yall. -Amy Curtis

April said...

You are such a STRONG person Jana.

Jennifer said...

Hang in Jana, you're doing an amazing job! Vent away, you're entitled, this is NOT an easy journey you're on.
You're in my thoughts,

Jennifer Hodges said...

I can only imagine how hard this is on you and Raymond. I remember when we had Emma by C-section. For WEEKS I was so tired, hurt, emotional, and depressed. As you put it wanted to check out. And I didn't have to make several trips a day to the hospital. Don't beat yourself up if you don't make it to see Drew. You're a great Mom. If you weren't you would not be so worried about it. Keep you're chin up! And, remember who is in control. These feelings will all pass. We are still praying for Drew's quick recovery. And your peace of mind. (((HUGS))) Love you Jennifer (J.J.)

Chelsea Johnson said...

Dear Jana,
Your struggles have not been in vain. For all of the many, many people who have been following Drew's story, we've all been taught a huge lesson in gratitude and thankfulness. Never again will I ever gripe about how hard it is when Jake has an ear infection, or a virus, or even pneumonia. I will think of you all and thank God for every moment I have with Jake healthy and not. Sending much love your way, Chelsea

baby Jackson said...

Hey Jana. I understand a lot of your feelings I feel them too. It is important to rant and vent, and be bithcy if you need to. Every feeling you are having is totally justified and understandable. We continue to pray for you daily.

Hiskes6 said...

(((HUGS))) I am so sorry you and your family have to go through all of this Jana. I don't think you are any where close to the worst mother in the world. In fact I really admire all of your strength.

Karen said...


Just hang in there. It isn't fair at all that you have to walk this path and don't ever apologize for being angry, frustrated or anything else. You have the right to be. You want the best for Drew and you all deserve the best. Drew knows whether you are by his side or not that you love him 110% and if you could have your way he would be in your arms right now. He has gone through so much and yet he continues to fight. Please know that the prayers are pouring in for you and your family.
God Bless
mommy to Kaleigh 30jul02-16aug02, LCDH, my blue eyed angel

Anonymous said...

Keep the faith...God is in control. We will keep you in our prayers.