Monday, October 21, 2013

Hanging In There...

Maia had been stable these past few days, but on Saturday she ran into another bump on her road to recovery. A few days after successfully removing the blockage from her dialysis catheter, blood started to come out from her stomach and into the tube. When we arrived for our daily visit, the nurse had disconnected the catheter and capped it off, so the dialysis was put on hold for the time being, until the bleeding stopped. Fortunately, Maia's vitals and blood gases seemed to be unaffected by this and she remained her attentive self. After a few hours, one of the pediatric surgeons came by to talk to us. They had been discussing the best options to stop the bleeding and figure out where it was coming from. They had hoped that flushing out the catheter would help, but blood continued to fill the tube. So they decided that it was best to bring Maia down to the operating room to have exploratory surgery on her abdomen. Their hope was to quickly find the origin of the bleeding and fix it. Worst case scenario would be to find that a large or major part of her was somehow damaged... but they wouldn't know anything until they open her up and take a look. So once again we were faced with another setback and several hours of worry.

Thank goodness we know how to keep ourselves busy! Saturday happened to be Lexi's 1st birthday party. Lexi is the daughter of my cousin Mark and his wife, Karen. So we had ourselves a perfect distraction... kind of. It was a costume party and Gordon went as Superman, I dressed up as Wonder Woman, and Marcus was Spiderman. While Marcus had a blast, Gordon and I tried to relax and not worry so much... it didn't work! We constantly checked the time on the phone as we anxiously waited for the doctor's phone call to give us an update. We also had to answer questions from family and friends who were eager to hear updates on Maia. I normally answer with "she's good" but that seemed so misleading, so this time I mostly answered with "she's hanging in there" which was the truth. We had left the hospital around 2:30pm and we were guessing the surgery might take about 4 hours, depending on what they find. By 6pm we were tired and decided to head home. We finally get the call from the doctor around 6:45pm. Everything went as planned and they found the source of the bleeding right away and were able to stop it. They took out any extra fluid they found while they were in there and Maia was now back in her room, resting and recovering.

Super Hero family pic

Although the surgeon had used the same incision from the last procedure, they needed to make the incision longer. So when we went to see Maia on Sunday, she had a bigger bandage on her tummy. The doctors explained that they wanted to let it heal before continuing the dialysis. However, they were still flushing the catheter every 4 hours. They wanted to give the dialysis a rest for as long as they could. Since they were still able to draw more fluid out of her by flushing the catheter, Maia should be ok for at least the next couple of days. She was also continuing to pee, so that was also good. As usual, she was very alert and attentive to everything around her. When Gordon was talking to her nurse about having to go back to work full time, and how he'd only be able to come visit at night after work, Maia's eyes got big as if she heard and understood the meaning of the conversation! It's as if she said "what?... this can't be happening!"


Love her facial expressions!
"No! You can't go back to work full time!"


When we came to visit today, it was me and my brother, since Gordon had to go back to work full time. Maia had a good night and was continuing to have a good day. Her vitals and blood gases were still looking good, despite having the dialysis on hold. Her nurse said she had been a bit fussy so they gave her an anti-anxiety drug to help her relax. It seemed to work because she spent most of the day asleep, but opened her eyes every hour or so to check out what was going on. She had started to get a little more puffy so they were flushing her catheter every hour, hoping to keep the fluids off. Maia still looked good despite some puffiness. She had her monster beanie on and was sucking away on her pacifier. It was almost like she didn't have surgery 2 days before... she's obviously very resilient! Again, she amazes me! I don't always like to expect the worst, but knowing what she's been through, I sometimes don't know what to expect! Later this evening, however, she had some more problems, this time when the PICC line (a special type of IV that can be used for a long period of time) in her arm disconnected and they were not able to repair it. So they had to run her meds through one of her other IVs. Maia didn't seem to notice and actually slept through the whole thing! Nevertheless, we're hoping this doesn't become a bigger problem than it already is!

Tomorrow I make my first solo drive and visit to the hospital... it shouldn't be too bad. I hope to only get lost once! I'm so used to being a sleeping passenger on our rides to the hospital!... but I gotta do what I gotta do... whatever it takes to be there for our baby girl!


 

3 comments:

  1. Melvin, Naroth, Ari & AmerieOctober 22, 2013 at 8:53 AM

    thinkin' about you, Maia

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  2. I love your super hero family pic. Thanks for the update, we are always praying for God's grace, healing, and protection.

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  3. Take and keep yourself healthy. Your children and each other need you. Prayers and love are sent your way. Thanks for the updates. Aunt Noni

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