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Tuesday, August 4, 2009

Breathless

exhausting, proud, awesome, beautiful, trying, dramatic, encouraging, breathless

Above are all words I would use to describe this day. First I woke up to Christian throwing up a little bit. That's fine, we're use to that. I hurried to get his suction catheter together, which was hard with sleep still in my eyes, but I was managing. As I'm fumbling around to put on my gloves I hear coughing...I hear two big, powerful coughs!!! This is gross, but Christian coughed the phlegm right out of his trach tube! And he cleared his own throat. When I was finally ready to suction, he was already done with it. I know you are all throwing up right now but I've never been more proud of phlegm expulsion in my life! And what's better is that he did it again later in the day. It was such a powerful cough I thought it was a sneeze. Couldn't have been, though, because I would think that would have gone through his nose and this originated from his chest. It even sounded like a real cough. Awww, bodily functions.

I worked with Christian so much today. And when I wasn't working with him, the occupational therapist came in and worked with him. We bent both legs all the way up, he was so much looser, he was just doing so well! I gave him a bath, which honestly, is like an hour long process. We're talking the actual bath, trach care, gtube care, finger nails, mouth care, lotion and massage, and we're finally done. Then we had a visit from Gramma and Grampa, more occupational therapy, and off to HBOT! What's the difference between physical therapy and occupational therapy? I asked the same thing. Physical therapy, as it was explained to me, is more movement and joint related with the larger muscle groups. Occupational therapy involves range of motion integrated with sensory objects. In infants they really work hand in hand. The Occupational Therapist is really loving, she's like every one's talkative next door neighbor. She also explained that most of the children here don't have parents that stay with them or even visit. So she said she won't be kissing on Christian as much, since he has a mommy and the others need those kisses because they don't get any love. Poor babies.

So then we get to HBOT. Talk about drama! This is the deal...it was required that I have a driver and a respiratory therapist accompany Christian. They were both really nice and talkative. The RT has a really strong personality. The problem is so does the HBOT director. They butt heads left and right. The RT had questions about suction and what if Christian is in distress, how long will it take to decompress? Can she suction? Is there suction available? Can he go in with Christian? All this because I can't go in with him because I'm pregnant. The director of HBOT said it's okay after the 1st trimester but nobody REALLY knows for sure. So Manny just said if someone else is there to do it, let them. So that leaves the director, who's done it before, and the RT. The RT said he was going to go in with Christian. The director said, "Nope, not today. I need paperwork on you and we don't have time for that."

Then the RT said something back, then she said something back to him...it was awkward and kind of funny. All of this because she was late and flustered. So in the end, the RT will go in with him after his paperwork is done. The director went in with him this time. While they're in the chamber, I can see what's going on through a small screen that's watching everything. The director was stretching and massaging his legs and arms and he was as cool as a cucumber. I know people are curious as to what this chamber looks like. It looks like a submarine with a TV in it. Whatever gets the job done. I was secretly happy my RT and driver were there because they were both REALLY concerned about the welfare of Christian. I was thinking, "Holy crap! These people really care about my baby!" It was a nice feeling to know that they were looking out for him.

I was initially really nervous about the transport. Last time Christian traveled it was from Tucson to Phoenix in an ambulance. He was so aggravated and warm that I wasn't looking forward to another transport. But he did great! We put a little cap on his trach that allows him to breath humidified air but still be picked up and carried around. He rode in a stroller to the transport van and it was like carrying around my Christian again. It was so...normal. He was strapped in to his car seat like a big boy and fell asleep on the way there. He did really well in the chamber with no issues and was completely relaxed. He then fell asleep in his car seat on the way back. When we got back into the room, he was still so relaxed. I hooked him up to his pulse ox monitor and his heart rate awake was in the 120-130's! He's usually in the 150's awake. I don't know if one session of HBOT can relax him so much but all I know is that I had a happy baby after all was said and done. Back again tomorrow!

I also spoke with the speech therapist who came in and said she heard Christian was doing really well in their meeting. She said he looked a lot more relaxed and said that the sucking motions were really good signs! Yay! Let's hear it for positive reinforcement! Christian is even stimulated to suck when I put the suction catheter in his mouth to suck out the extra drool. So there's a lot of mouth movement going on which pleases me to know end!

Christian doesn't do anything emotional yet. He doesn't make facial expressions. He doesn't cry or vocalize and I don't know if it has to do with his trach, I'm not jumping to that conclusion quite yet because he hasn't made any attempts to do these things. And this part is hard because it's the part that makes Christian who he is. But I know this is coming, I just have to have patience. Nothing is going to happen overnight. It's on God's time and Christian's time.

Despite not getting any emotional response, I can say that it's really starting to feel like I'm getting my Christian back a little bit at a time. The emotional part will come later. I was able to pick him up today, put him in a stroller, stroll him around, and strap him in his car seat. All of these mundane things used to be part of going through the motions. Now, everything I do with him is a gift. Even being able to put my baby, wireless, in a stroller and walk him outside in the sun and then strap in a car seat, comfortably, are so huge that I can't even explain it. To watch him fall asleep in his car seat as if nothing had ever changed took my breath away.

15 comments:

Rochelle said...

I couldn't wait to get online tonight and check to see if you updated since the HBOT treatment. I am sooooo happy to hear it all went smoothly, and that you had SUPPORTIVE people around you for the first go at this. I am so looking forward to hearing more reports and reading of more improvements...I just really hope and believe they are coming! I also am so thankful for those productive coughs because I know you're been anxiously awaiting those...and even though gross they are a good sign that Christian's body is working! Go baby Christian! Love and hugs always!

Marilyn said...

I have never been so happy to hear about a phlegmy cough in my life! It sounds like HBOT was a wonderful experience...keep it up, momma, you are doing an amazing job...and it breaks my heart to hear the therapist say there are other kids that that don't have a parent with them. I can't imagine.

Tracy said...

Your update made me want to jump for joy. See...every single morning I have been praying for Christian's gag and cough reflex to become stronger and stronger.

Hugs,
Tracy

ferfischer said...

This is great! The HBOT really tires Cici out - she's is WIPED at the end of the day with that. And, it is relaxing for them! I'm just posting a link on our blog about an article a local paper did on our HBOT center - someone can see what our chambers look like, but I know yours are different! Yay for 1st HBOT down! Many many to go! The fun part is that you can watch movies! :)

jenngaa said...

Ditto to what Marilyn said - I've never been so excited to hear about phlegm. He coughed so well and even cleared his throat - that is wonderful! I'm glad that the first day of HBOT went so well also, and that you have some very helpful, caring people involved with Christian's treatment. I can't imagine those other poor babies without their parents - that just breaks my heart.

Eliisa said...

SO glad the first HBOT session was a success! And as an SLP, I have to say YAY for his coughing and oral movements! You go, little guy.

The part about the other babies not having visitors just kills me, though. How could anyone just leave their child....anyway, I don't even want to think about it.

Much love to you and Christian!

Calicomama said...

This is great news. I can't wait to hear more.

maz said...

So glad that Christian's first HBOT treatment went so well. And must've been kinda surreal with the trauma between the RT and centre director! But happy that they all totally wanted what was best for Christian.

GREAT news about the cough! I'll be praying and thinking really good thoughts about Christian's emotional responses...all in time, as you say!

Meanwhile, enjoy strolling around in the buggy in the sunshine with your wee man!

Maz
x

gavman306 said...

AWESOME news!!! So glad to hear HBOT went so smoothly, and that he like it! And great news about the coughing and YAY for phlem!! I can imagine the joy in strolling him around, he must love getting out and around too.
I will be praying for Christian's emotional responses, I do believe he will come back to you, ALL of him, he is on his way. Because of YOU he will come back, I know it!!
I can't wait to read your next update, go Baby Christian, you are absolutely amazing!!
God Bless!!!!

Sarah said...

WOW that is awesome news!!! YAY phlegm cough and sounds like the HBOT was a success too!

I admire your strength and courage and pray for you and your family everyday (((hugs)))

Rave78

Shirley said...

I'm so glad to hear that Christian had a god day! From the phlegm, to the stroller ride, to the sucking, and a nice relaxed HB, it really sounded like an awesome day for your little guy! He is so amazing!

Jendioguardi said...

What an amazing little man Christian is. He's doing so great! Good job mama!! You're doing fantastic!!!

graphartpcp said...

Praise God. You're right Shauna, baby steps. I can't wait for the day he smiles at you. I'll be able to hear you scream up here in Denver!

Keep going little Christian. . . I think I can.. .I think I can. . .

GIve your mommy an angel kiss for me.
Love, Pam

Janet said...

Phlegm is the word of the day!!! And what a good word, meaning progress. With the strong dedication of his mama, dad and brother, Christian will no doubt continue to go leaps and bounds. This is all such good news. You go Christian!!
Love, Janet

Bianca said...

I'm so excited for you guys I hope today's session went just as good!!

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