Tuesday, October 11, 2011

My little trooper


Today has been a good day.

I'm tired and a little emotional as the stress of today is starting to have its effect, but today was a really good day. Nathan is doing well as long as we stay on top of giving him pain meds every couple of hours. The poor little fella seems to be in a considerable amount of pain as the effects of his morphine starts to wear off, sending his heart rate soaring and giving him the shakes. Its tough to watch as I wipe his head with a cool, wet washcloth, but his nurses have been amazing at being quick to give him relief. Other than the expected pain he is experiencing, everything has gone very well today. Let me start from the beginning...

We arrived yesterday afternoon, and Nate was so excited to see all of his "friends". As soon as the doors opened onto our floor, Nate ran and jumped into the arms of one of his favorite nurses and started talking his ear off about being at Disney this past weekend. Since it was kinda slow on the floor, he and his "buddy" played superheroes and ipad games in between Chris (his nurse and "buddy") taking care of the needs of other patients. Our favorite PCA was also here, and it was so nice to catch up during the slow times on the floor. I have some really cute pictures of Chris and Jackie playing with Nate that I can't wait to get off my camera when I get home. Other than getting his IV, the little guy had quite a fun time yesterday. The amazing people here definitely make his stays easier.
The attending anesthesiologist came to the room before surgery this morning and spent a good amount of time with us trying to formulate a plan for the anesthesia used in today's surgery. In fact, that was one of many times he came to talk or check on Nate throughout the day...we were thoroughly impressed with him. Due to some bad reactions that were getting worse with each admission, he encouraged us to add sevoflurane as one of Nate's allergies in his medical file...not that he has an actual allergy to it, but that his body definitely does not recover well when it is administered. That's one of the hard lessons we have learned the past couple of months.

This anesthesiologist researched mito and any info on anesthesia in patients with this disease that he could find, and he even tried to call our team in Houston for their input, but they were not able to be reached. His desire to do everything in his power to keep Nate safe and comfortable was heartwarming. We've always had wonderful eagerness and receptiveness from our anesthesia team, but this doctor was even above and beyond what we have previously experienced. He even came by tonight to check on the little guy and tell him "thank you" for being such a good patient. Working with this doctor today was an incredible blessing.

We had a great talk with our surgeon before they took Nathan back to the OR. He said that he recently spoke to the doctor who is essentially the grandfather of these gastric stimulators and was our surgeon's mentor. This ground-breaking doctor in Mississippi implants gastric stimulators in adults, whereas our surgeon is the initial doctor who started implanting them in peds. He said that in speaking about Nathan's case to this leading researcher and doctor in gastric electrical stimulation, this doctor said that he has actually implanted stimulators in a couple of adult mito patients and they have responded very well. That eased all of our minds that Nate was not the first "mito patient" to have this procedure done, though he is seemingly the first child with mito to undergo this treatment. I can not explain how encouraging it is to hear that this treatment has been and continues to be quite successful in a couple of adults with this same disease. Hopefully, Nathan will experience the same results for a very long time.
Surgery went well. Our surgeon tried to do it laproscopically because it is less painful and the risk of infection in lower, but due to Nate's odd stomach angulation and the fact that he is quite a small kiddo, he eventually had to just work through incisions. Nathan came out of surgery and anesthesia better than he really has ever done. Aside from spiking a pretty high lactate on his VBG during the procedure, he did very well.

He's in quite a bit of pain, but our team and nurses have been on top of it all evening. Our surgeon just came by again a little bit ago and ordered more pain meds to keep him comfortable for longer and some IV antibiotics as a precautionary against infection. The little guy has a little bit of a temp tonight, but that could be from the stress of surgery. We'll be here for a few days, it seems. We are taking his recovery slow, as we have seen in the past that pushing him too quickly causes more problems. Hopefully the little man will start to perk up in a couple of days.

Thank you all so much for your prayers. I am constantly amazed at how God blesses Nathan with the amount of strength and courage that most of us can not fathom. Its a humbling experience to see God's grace seeping through the heart of your child. Our sweet warrior is an amazing blessing in our lives.

10 comments:

Anonymous said...

We love all of you so much! I have been praying for little Nate man all day!!!! Thinking of you! Love the McCook's

september on October 11, 2011 at 10:54 PM said...

Continued prayers for the little man--and for your family. Hopefully the Nate-man will be home with you soon!

nyveggie on October 11, 2011 at 11:04 PM said...

Big hugs tonight for such a sweet little man (HUGS)

jengame on October 11, 2011 at 11:28 PM said...

I'm so sorry you have to go through this, Nathan. You ARE a little man, enduring so much with such courage and blessing others with your love. You are all in my prayers. Love and hugs! Jenny

MiCasaLoca on October 12, 2011 at 12:25 AM said...

Thank you for continuing to write. I haven't read your blog in many months, but as I read it tonight, I could feel my heart pound as I read your words. Your story makes us all want to stop grumbling about toys scattered, food covered fingers clinging to our last clean shirt, and just drink up the moment when our own children come to us. Every struggle with our children is still a moment together. I am sure your stories give inspiration to other parents who struggle with the same disease, but for the rest of us it is a reminder not to forget how we too, must cherish every moment, regardless of whether times are hard or not.

Emily on October 12, 2011 at 12:32 AM said...

I'm keeping Nathan in my prayers as he recovers. What an amazing boy he is. Thank you for sharing his story with such honesty - reading about your family is such a blessing.

Nicole on October 12, 2011 at 12:36 PM said...

Thinking of sweet Nathan and the rest of your family and praying for a quick recovery!

Owl of the Desert on October 12, 2011 at 4:58 PM said...

Thinking of you all today and sending prayers up. Love you all!

Doshia said...

Amber, What a relief! Can't wait to hug him again. Prayers be with you and your family, Doshia

Kyla on October 14, 2011 at 8:44 AM said...

He IS a little trooper. Isn't it wonderful to have truly caring doctors? What a blessing.

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