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Tuesday, July 13, 2010

Port Surgery Update..."The Good News"

Things have finally calmed down since Niki's surgery. She's sleeping right now so I figured it would be the perfect time to get my thoughts down on "virtual paper" while the memories are still fresh in my mind...

Monday, July 12, 2010 - Post Op:

The morning of her surgery...

I was worried sick the minute she left my sight at 8:20am, but shortly after I finished my last post -- 11:04am to be exact -- an "angel" walked into the room to let me know that I could go down to Recovery to see my baby. Praise the Lord! I quickly called John (who was still in Daly City waiting for Boo to get off from school) to let him know that Niki's surgery was done. Then, I hurriedly walked down to Recovery with Niki's beloved NICU lion and binky. I let out a huge sigh of relief the moment I saw her sleeping in her crib.

Niki was a mess. She was asleep, but her swollen face was streaked with dried tears and she was breathing funny. But...she was okay. The nurse told me that she just got comfortable enough to fall asleep and that the port surgery was a success! The 50/50 chance went in our favor and her vessel wasn't too small to accept the port after all. She's just a few days shy of 17 months and he made it happen. (Port surgeries are typically done between 18-24 months.)

And that's when Dr. O became my new hero!

Dr. B (the Anesthesiologist) came by to check in on Niki a few minutes later. Apparently, she threw up from the anesthesia and was in a lot of pain when she got out of surgery. So, he gave her a bit of Fentanyl and anti-nausea medication to get her comfortable before I came down to Recovery. Her port surgery took a little longer than expected because of her size, but she did beautifully. The nurse wanted to wake her up in about 30 minutes. And once she was up....

Let me tell you, Niki wasn't NOT happy about being awake.

She was crying and kicking -- trying to fight the pulse oximeter sensor on her toe. The nurses encouraged me to pick her up and try to console her, but I was scared that it would be too painful for her. After the nurses insisted that it would be okay and said they would help me, I tried to pick her up as gently as possible. And then....she screamed in pain. Um...yeah, I felt like the shittiest parent alive. I felt TERRIBLE. Niki promptly started puking shortly after she settled down in my arms. The clear vomit was all over me, but I didn't care. I didn't want to move for fear of hurting her again. Niki was dry-heaving so much that her eyes got watery.

The nurses watched the spectacle and tried to help. The wiped us off as best they could while one nurse gave Niki some Morphine for the pain. Oh, and more Zofran for the nausea/vomiting.

The Morphine kicked in quickly and Niki fell asleep in my arms. I stayed completely still after that. I was starving -- didn't eat breakfast because I was too nervous -- but there wasn't much I could do until John got there. I tried to put her down, but she wasn't having it. My arms were exhausted. John got back from Daly City at about 1:30 and took over from there. Niki woke up briefly then went back to sleep, this time in her Daddy's arms.

The Port (the yellow thing is a needle that they stuck in the port to keep it accessed for IV fluids)
Sleeping in her Daddy's Arms...

There was a problem with our room upstairs. The Recovery Room nurses were trying their best to light a fire under Pediatrics so they could transfer Niki (patients shouldn't be in Recovery for that long), but it was no use. Even Dr. O was surprised because he had completed at least another four cases while were were down there. Apparently, Pediatrics had to do some room switching (Niki was being transfered to the PICU) and housekeeping was taking forever to get our new room ready. She should have been back in Pediatrics by 12:30 at the latest, but Niki transferred the Pediatric ICU (PICU) until a little after 2:30pm. The Recovery Room nurse gave Niki her scheduled factor dose.

Post Op Pictures
4 hours post-op...

She was exhausted when we got upstairs so slept for about an hour more. Niki finally woke up at around 4pm. She was cranky, but after the nurse gave us the go-ahead feed her, she was starting to be her normal self again....for about 30 minutes. Niki was starting to get fussy/bored, so we tried to distract her with her two favorite music videos on YouTube -- Justin Bieber's "Baby" and Beyonce's "Single Ladies".  And that worked...for about another 30 minutes or so. Then, she was pissed. It was definitely time for pain medication. We called the nurse to let her know that Niki was ready for some relief, but when she checked the computer, there was no order.

Really? The doctor didn't place an order for pain medication on a post-op patient?! Wow.

John and I couldn't believe it. It wasn't the nurse's fault, but it ended up taking another hour for Niki's pain medication to arrive. To put it lightly, John was pissed off and Niki was totally uncomfortable. She's a Daddy's girl so she only wanted John to console her. Meanwhile, I tried my best to calm John down. He's a real hot-headed when it comes to protecting his children and he was not happy that Niki was unhappy.
The good news is the pain medication only took 30 minutes or so to kick in once she got it. And, she was doing much better after she got her Tylenol suppository. The nurses decided to try a lower strength pain med first to see if it would do the trick. And, it worked!

A few hours after pain medication - 8pm-ish
Broviac removal and Medport installation

By mid-to-late evening, I was absolutely exhausted. The combination of NOT getting sleep the night before, NOT eating until 3pm, and being pregnant  (under a hell-of-a lot of emotional stress), finally took a toll on my body. My adrenaline stores were completely depleted so I crashed and fell asleep. John tells me that Niki stayed up until about midnight playing -- completely oblivious to the fact that she just had surgery a little over 12 hours before.

Tuesday, July 13, 2010 : One Day Post Op

Dr. Awesome came by at around 9am this morning. Niki was still sleeping, but she woke up on the right side of the bed when she heard Dr. Awesome's voice. Niki's 4.4 INR wasn't too much of a concern for Dr. Awesome (she figured she would correct it with the NovoSeven dose Niki recieved in the hospital), but the 8.2 hemoglobin was still an issue. Nevertheless, the plan was to send Niki home once she successfully completed the 36 hour regimen on NovoSeven every 6 hours to prevent bleeding from her surgery. Dr. Awesome advised John and I that Ceftriaxone -- the antibiotic Niki was on -- "sometimes does funny things to bone marrow". However, because Niki's last dose of Ceftriaxone was on 7/5, Dr. Awesome theorized that any effects should have been out of her system by now.

So, Dr. Awesome ordered another CBC to see what Niki's hemoglobin was.

After Dr. Awesome left, I asked Niki's nurse for her breakfast. When he checked the computer, Niki was still listed as NPO -- meaning she still wasn't allowed to eat. This was hardly the case my friends. Niki was drinking bottles and munching on the food John and I purchased since yesterday afternoon! I thought it was odd that they didn't bring Niki dinner the night before, but since she was eating our food anyway, I didn't feel the need to ask the nurse about it. Imagine my surprise to learn that the doctor forgot to lift the diet restriction in the computer. Damn computer! Damn orders! There were NO MEALS ordered for her for today. The nurse quickly rectified the issue, but nevertheless I was still mildly flabbergasted that the doctors forgot to order yet another thing. First the pain medication and now this.

Thank goodness she didn't have to wait long for her grub. Niki was feeling like a millions bucks after she got her breakfast. Also? She didn't need any pain medications over night or all day today.

John took these pictures during breakfast. You would have never guess that she just had surgery the day before.

The nurse drew Niki's CBC in the early afternoon. I think we were all expecting her hemoglobin to improve, but a few hours later I was told that Niki's hemoglobin dropped to 7.0 and now her hematocrit was low. I was expecting the hemoglobin to be a problem, but her hematocrit was never an issue until today. I never expected her values to drop so low! Dr. Awesome was back in clinic by then so the Resident and Attending MD (also a Hematologist) decided that they would draw more labs (an iron study) to investigate further. It was odd that Niki got so anemic so quickly. As a precaution, John and I were advised to limit Niki's milk intake to no more than 2 bottles day. Although I must say I doubt her anemia has anything to do with milk. The Attending MD also ordered a blood transfusion to bring Niki's hemoglobin and hematocrit back to normal.

Meanwhile, Niki's blood pressure and pulse remained consistently high throughout the morning and afternoon so the nurse called the Resident over to evaluate Niki.

She was also a little more tired and sweaty than usual too.
She eventually got tired of fighting with the pulse ox sensor...

A better port picture...
Where the Broviac once was...

The Resident listened to Niki's heart and reviewed her vital signs. Her temperature was normal, but something was ramping up her body to cause the high blood pressure and pulse. There was definitely something off. The Resident told me that there was a bit of concern with whether or not Niki's immune system was rejecting the port and that an infection was brewing. However, because she had no temperature and white blood counts can be unreliable to detect infection if its drawn too early, there really wasn't any way to tell. All we could do was monitor her vital signs. The Resident consulted with the Attending Doctor and they decided to start Niki on a bolus dose of normal saline in case she was dehydrated. Niki was currently running on a continuous fluid with Dextrose in it (aka: D5) so they figured they would try and see if the normal saline would help improve her vital signs.

The D5
The bolus dose of normal saline

Unfortunately, the bolus dose didn't do anything to improve Niki's heart rate or blood pressure. It was still high so all the doctors were hoping that the blood transfusion would help with her symptoms. Perhaps her body was reacting negatively to the severe anemia. Throughout the day, Niki's blood pressure remained high and her pulse fluctuated from normal to abnormal. And still, despite all of these developments, the plan was Niki would go home tomorrow.

It was all very weird, but Niki didn't seem too bothered by it.

John and I kept her busy throughout the day with more Beyonce and Justin Beiber. She had some visitors too -- my dad, my sister, and her Ninong V came this evening. Yesterday my BIL and our niece and nephews came by to visit. Even Dr. B came by today! And, Niki always responds well to having company. Laughter is the best medicine. :)

It's now close to midnight and Niki still hasn't gotten her transfusion. There have been massive delays in finding a match at the blood bank because one of Niki's markers was positive---whatever that means. The laboratory needed more of Niki's blood to conduct further testing. So, it has been a little more challenging to locate an exact match. The good news is her pulse is normalized now, but her blood pressure is still a little high. And, the fact that she'll be getting her blood transfusion so late has also pushed back her factor regimen. I'm thinking this could delay her discharge by a few hours if not more.

Either way, I'm just glad she's doing okay.  John and I are REALLY looking forward to getting our baby out of here. My MIL constantly texts me to tell me that the boys want to see a picture of Niki and it makes me miss them even more. They really miss their sister too.

Hospital life sucks, but we make the best of what we've got around here. Hoping to get out of here soon!!!

Niki and her Daddy
Niki hugging her NICU lion. (This guy was her buddy when she was 1st born.)


  1. Our boys' port surgeries (insertion and removal) were always harder on us than the boys. I hope you'll find your experience with her port as wonderful as we did...our boys had theirs for roughly 5 years and once they were old enough to learn to poke themselves, we had them removed (at ages 7 & 8). Good luck and I'm glad I found your blog!

  2. Thank you so much for sharing your story with me! We're slowly, but surely getting used to accessing the port. I'm very much looking forward to Niki doing her own pokes. It's nice to know that it's do-able at 7 or 8. :)

    Thanks for reading!