Sunday morning, around 7 am, the surgeons came around for the usual rounds and said they were sure Etta was ready to go home. She had slept very well through the night, barely waking up for her vital checks. And to be honest, I was just as "out" that night. Thanks to my Mom, I was able to sleep more soundly. She selflessly offered to sleep at the hospital with us, so I could get more sleep.
We walked out of the hospital around 10 am. I felt so excited to get her home and begin recovering where she could really heal. We have been so blessed throughout this ordeal and have seen some amazing "tender mercies."
Etta continues to do well and is basically off her pain meds. She is wanting to get back to her "life" and ate her first full serving of rice cereal today. She also spent quite a lot of time in her Bumbo seat, actively playing with her toys. I'm beginning to see glimpses of the fully healed Etta. Keep those coming!!
Wednesday, May 22, 2013
Friday, May 17, 2013
And the poop came...
Hopefully, if you are reading this for the first time, you kinda know some background about my daughter, Etta, and her recent surgery to eliminate her Stoma, due to Heirshprung's Disease. If not, the title of this entry is a little weird.
Etta had a rough night, and seemed to be uncomfortable most of the night. But I didn't think it was due to actual surgery pain, but her bowels beginning to wake up again and the trauma of taking a scalpel to guts. So, I decided to hold her last night to help ease her discomfort. It seemed to work, and she began burping and squirming. After the surgery, we haven't been able to hold her much, as it seems to make her more uncomfortable.
We were rewarded at 6:05 this morning, as I was nearing the end of my rope trying to comfort her hurting tummy with a bowel movement. This step is huge in the process of healing from this surgery because it indicates the bowels have begun to heal and are ready to process food again. :)
Although Etta has been cleared to take clear fluids every 3 hours, she is not interested in eating and promptly boycotts the idea by sealing her lips together a letting out her "warning" yell. So, I have been warned, but will continue to encourage her to eat.
Thursday, May 16, 2013
Future in Medicine
After receiving the order that the Anderson tube could be removed (the tube going down Etta's nose and into her stomach to suction fluid), the nurse got her supplies ready, gloved up, and started to talk about how happy Etta would be when the tube was removed. She warned us that Etta may hate her for a moment, but would be grateful to have the tube gone. Admist this "boring" adult conversation, Etta literally take matters into her own hands, and snuck her right hand across her face, grabbed, and pulled. Before we could react, Etta had removed her own Anderson tube. And the nurse was right...she is much happier!!
The night I became "that Mom..."
This morning at 6 am, following a pretty dramatic blood draw, I began to realize I had turned the corner to becoming "that Mom..."
You know, the one that the nurses turn on their best "customer is right" smile and attitude in response to "Momma knows best." When I worked at Primary Children's, I remember seeing Moms doing things that just seemed a bit "crazy." One particular instance I remember was one of the sickest patients I ever got to help. He needed quite a few interventions to breathe, and was not doing well. I spent many sessions with this kid and Mom utilizing relaxation techniques for them both. One day, I came in and she was standing bedside, straining her back and neck, tirelessly holding up his head. She held this position for days. I invited her several times to come and sit down, and she tersely replied, "No. Can't you see this is helping him." I thought, "Actually, no, can't you see that he breathes the same no matter his head position and you are adding undue stress to your back?" Of course I DID NOT say that, but didn't really understand her "crazy" at that moment. I am proud to say I now understand...
When your kid is hurting and there is absolutely nothing you can do, you begin to "find things" that you are ultimately sure make them more comfortable. Although to the outside observer, these things make no difference, and honestly seem a little neurotic, it is our way of coping with being unable to take away the pain and discomfort. So we pretend that our crazy little measures of comfort are of medical necessity...things like blanket position, length of time the mobile plays, the dimness of the lights, how loud your husband is watch TV, and many other small details. And you better be on the lookout if you happen to be the one who changes any of these things...Don't mess with my baby!
You know, the one that the nurses turn on their best "customer is right" smile and attitude in response to "Momma knows best." When I worked at Primary Children's, I remember seeing Moms doing things that just seemed a bit "crazy." One particular instance I remember was one of the sickest patients I ever got to help. He needed quite a few interventions to breathe, and was not doing well. I spent many sessions with this kid and Mom utilizing relaxation techniques for them both. One day, I came in and she was standing bedside, straining her back and neck, tirelessly holding up his head. She held this position for days. I invited her several times to come and sit down, and she tersely replied, "No. Can't you see this is helping him." I thought, "Actually, no, can't you see that he breathes the same no matter his head position and you are adding undue stress to your back?" Of course I DID NOT say that, but didn't really understand her "crazy" at that moment. I am proud to say I now understand...
When your kid is hurting and there is absolutely nothing you can do, you begin to "find things" that you are ultimately sure make them more comfortable. Although to the outside observer, these things make no difference, and honestly seem a little neurotic, it is our way of coping with being unable to take away the pain and discomfort. So we pretend that our crazy little measures of comfort are of medical necessity...things like blanket position, length of time the mobile plays, the dimness of the lights, how loud your husband is watch TV, and many other small details. And you better be on the lookout if you happen to be the one who changes any of these things...Don't mess with my baby!
Wednesday, May 15, 2013
Recovering...
Etta's surgery was complete today around 1 pm. The surgeon said everything went well, and she did well under anesthesia (one of my greatest concerns). They called us twice during the process to let us know everything was on track and she was stable. One of my strong points definitely IS NOT waiting...I would rather just ACT and get a move on things. I guess I will learn someday....
Here we are waiting again. She is very stable and we are "waiting" for her to become more alert. However, this waiting I am more than OK to prolong. The charge nurse working today said that this particular surgery is one of the more painful she sees, so if Etta is comfortable, I am too.
She officially has lost the "poop shoot," as Spencer has named it and has the incision to prove it. Instead of being able to complete the surgery lapriscopically, they did have to open her stoma site for greater access to "pull down" the good intestine and connect it. The surgeon seemed like this surgery was a walk in the park and very common, but it sure is a big deal to us! Getting rid of the stoma is a great feeling.
It has been so nice to draw on connections with friends and family while here. My sister, Whitney was working in the PACU today, and was able to see her right when she came out of surgery. My niece, Nicole works on the unit she is staying on, and comes to see us regularly Some of my old colleagues have stopped to say hello and offer support. Overall, I think is doing well right now, her pain is being controlled, and she is sleeping peacefully.
Here we are waiting again. She is very stable and we are "waiting" for her to become more alert. However, this waiting I am more than OK to prolong. The charge nurse working today said that this particular surgery is one of the more painful she sees, so if Etta is comfortable, I am too.
She officially has lost the "poop shoot," as Spencer has named it and has the incision to prove it. Instead of being able to complete the surgery lapriscopically, they did have to open her stoma site for greater access to "pull down" the good intestine and connect it. The surgeon seemed like this surgery was a walk in the park and very common, but it sure is a big deal to us! Getting rid of the stoma is a great feeling.
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| After Surgery |
My Kid Rocks!
So, I was super nervous checking in to the hospital for bowel prep...Etta just loves to eat, and wouldn't be allowed this luxury for at least 24 hours. I can safely say she is the strongest, most tolerant, and of course, spunky kid I know. She took most of the procedures in stride, and slept most of the night (unlike me). She is such a trooper.
So, the poor thing had to endure 4 hours of being fed this Golytely stuff, through the above pictured NG tube, that cleans everything out within a matter of minutes. Or more accurately, you think everything is cleaned out until it's not...anyway, she did this on top of being unable to eat, having vitals taken every couple of hours, and lots of unfamiliar people prodding and poking her. She quickly learned that if she found the NG tube behind her ear, it was a lot of fun to try to pull out. My time was spent trying to keep all tubes, IV's and monitors in place.
I swear sometimes babies can understand you...just after they placed her IV, and she wasn't done letting them know her feelings, I picked her up and said, "You tell them." "Just give them a good kick..." She responded by replacing her screaming with laughing and we both "belly" laughed for a good couple of minutes. The IV team said they had never seen such a reaction after placing an IV. Leave it to my kid!
They took her to surgery around 8am, and just called with an update. They are just biopsying the intestine to make sure she has the coveted nerve cells before re-attaching. More to come...
So, the poor thing had to endure 4 hours of being fed this Golytely stuff, through the above pictured NG tube, that cleans everything out within a matter of minutes. Or more accurately, you think everything is cleaned out until it's not...anyway, she did this on top of being unable to eat, having vitals taken every couple of hours, and lots of unfamiliar people prodding and poking her. She quickly learned that if she found the NG tube behind her ear, it was a lot of fun to try to pull out. My time was spent trying to keep all tubes, IV's and monitors in place.
I swear sometimes babies can understand you...just after they placed her IV, and she wasn't done letting them know her feelings, I picked her up and said, "You tell them." "Just give them a good kick..." She responded by replacing her screaming with laughing and we both "belly" laughed for a good couple of minutes. The IV team said they had never seen such a reaction after placing an IV. Leave it to my kid!
They took her to surgery around 8am, and just called with an update. They are just biopsying the intestine to make sure she has the coveted nerve cells before re-attaching. More to come...
Monday, May 13, 2013
Part 2
Just because I am horrible at blogging and don't make the time, I tend to only do it when something "big" is happening....so, the "big" event is Etta will be going to hospital tomorrow morning to begin preparations for her corrective surgery to eliminate the stoma.
Life with a stoma was incredibly overwhelming initially, and was the "main event" of the day-to-day functions of my life. I literally had to plan her changes when I had help. In the beginning, diaper changes could take up to 20 minutes and require 6 hands. We have it down to a science now and both Spencer and I can somewhat handle things on our own. It is a good time for the Stoma to go, however, as Etta is aware she has this bump on her side, and likes to pull on it...YIKES!
We really won't be mourning the passing of the Stoma phase, as we have learned they have a pretty awesome projectile power and cause some major skin breakdown issues. We, are, however, somewhat hesitant to re-enter the hospital setting and see our baby incredibly uncomfortable again.
She will go in tomorrow for "bowel" prep, which basically can be translated to lots of fluids and none of which are Etta's coveted formula. I think this is the part I am most nervous about for tomorrow, as those of you who know Etta can attest to her "love of the bottle." She will also be receiving some pretty powerful laxatives, which will enable that awesome projectile power of the Stoma...her poor nurses.
Getting to this point has also been stressful because last minute, her surgeon's son died, leaving us with a later surgery date than desired. Many of you have not met Etta, and us keeping her under house arrest the past 5 months was in preparation for this surgery date. To have it moved back was not really an option. SOOOO, I dug through my contacts at Primary Children's and begun the search for a new surgeon. We found a specialist in "gut" disorders who actually had openings for the original surgery date of 5/15, so here we go!
I will try to keep this blog as up to date as possible, and truly appreciate the support we have already been show through this stressful time. Thank you!
Life with a stoma was incredibly overwhelming initially, and was the "main event" of the day-to-day functions of my life. I literally had to plan her changes when I had help. In the beginning, diaper changes could take up to 20 minutes and require 6 hands. We have it down to a science now and both Spencer and I can somewhat handle things on our own. It is a good time for the Stoma to go, however, as Etta is aware she has this bump on her side, and likes to pull on it...YIKES!
We really won't be mourning the passing of the Stoma phase, as we have learned they have a pretty awesome projectile power and cause some major skin breakdown issues. We, are, however, somewhat hesitant to re-enter the hospital setting and see our baby incredibly uncomfortable again.
She will go in tomorrow for "bowel" prep, which basically can be translated to lots of fluids and none of which are Etta's coveted formula. I think this is the part I am most nervous about for tomorrow, as those of you who know Etta can attest to her "love of the bottle." She will also be receiving some pretty powerful laxatives, which will enable that awesome projectile power of the Stoma...her poor nurses.
Getting to this point has also been stressful because last minute, her surgeon's son died, leaving us with a later surgery date than desired. Many of you have not met Etta, and us keeping her under house arrest the past 5 months was in preparation for this surgery date. To have it moved back was not really an option. SOOOO, I dug through my contacts at Primary Children's and begun the search for a new surgeon. We found a specialist in "gut" disorders who actually had openings for the original surgery date of 5/15, so here we go!
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| To keep the ostomy bag on, they suggest adding heat...Etta sporting her heat-packed belly. |
I will try to keep this blog as up to date as possible, and truly appreciate the support we have already been show through this stressful time. Thank you!
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