So Reagan was discharged on last Friday 8/9. While she was in the hospital she had some questionable discharge coming from her G tube. She was also having a lot of pain and tenderness whenever I touch it to put the extension on or cleaned it.
By Friday night she had bloody greenish yellowish puss oozing out of the site. On Saturday the visiting Nurse came for a visit and was concerned by the look of it. So we took her to the pediatrician on Saturday, lucky for us her PCP was on call that weekend and was able to see her in the office.
She was concerned that she could have an abscess. Her first thought was to send her back down to children's. And the she felt bad even having to suggest it. I asked if we had any other options, so we came up with the following plan after talking to the surgeon- they cultured the ooze coming out of the site. Started her in antibiotics and sent her home. She had a follow up in Boston with the GI nurse to check the site on Tuesday 8/13.
In the mean time I brought Reagan back home. She was vomiting 1-2 times a day and spitting up. She was screaming and crying at times for long spans of time, she just wasn't herself.
Tuesday came and Anthony and I brought her down for her appointment. The nurse asked what antibiotics she was on and I told her. The nurse didn't think that it looked right so she asked one of the doctors to come look at it too. And the doctor agreed it didn't look good. So they increased the dose of antibiotics.
We got home that evening and within 30 minutes we got a phone call from her Peditircians office saying that the final G Tube cultures came back and the bacteria is resistant to the antibiotic she was on. Grrrrr! We were so frustrated, this poor baby can not catch a break.
So on Wednesday morning her visiting nurse had come in the morning and took her temp and weighed her, and she still had a fever and had lost 4 oz since Saturday. I called down to GI to make sure she was being put on the right antibiotics. They waited all afternoon for the culture report to show up and when it finally did they opted to put her on a different antibiotic.
I was given clear instructions that if at any point her condition worsened then I was to bring her down to the ER. I was also told that after 24hours of her being On the antibiotics and she still has any of the same issues: fever, vomiting, feed intolerance, pain etc.. Then she would need to come down to be seen.
Wednesday evening she had her first dose of the new antibiotic, and there was no noticeable change.
Thursday morning the same thing no change and she still had a low grade temp. She was due at 3pm for her next dose of antibiotics.
In the meantime I called down to GI because she still wasn't tolerating her feeds and I kept having to stop her feeds because she was refluxing. Most babies have reflux and its not an issues, but she is at a high risk for aspirating her reflux because of her laryngeal cleft, Laryngomalacia, and trachomalacia. By the time I got a call back from GI her G tube looked a bit better, but it still had some nasty drainage coming from it. Her temp was at 100.2 which is still a low grade fever.
The nurse I talked to said that she had strict instructions from the doctor that if she wasn't better then Reagan needed to come back down....
This might sound a little selfish on my part, but it has been torment to watch her go through all that she has been through and I wasn't sure I could handle it anymore. It's easy to be strong for your kids day in and day out. But there are times and certain things that you just can't handle. And the thought of having her put back in the hospital and separating our family once again was just devastating. I wanted to avoid it at all costs.
I had multiple conversations with the GI nurse on Thursday. One of the last conversations was that she thought that Reagan should go to the children's hospital ER. I made one final plea and said "she has only had two doses of antibiotics, can we give her her next dose and see how she does with it, and if she still has a fever then I will bring her in?"
Call it denial or fear of what was happening, I don't know. All I know is I knew deep down inside that she needed to come down here. I was just tired of all the ups and downs. She already had 8 hospitalizations in her short life, I didn't want it to happen again.
So the GI nurse said she would talk to the Dr, and see what she thinks, but her gut was telling her that Reagan needed to be seen. She said she would call me back.
In the meantime Anthony and I packed bags for Reagan and Addison, and took Addison to my parents house while waiting for the call. We were there about 20 minutes before my phone rang and I knew it was them.
And the verdict was in, the doctor said that she MUST come in. We were sad, but knew and understood it was in her best interest.
Within 15 minutes of being in the ER we knew she was being admitted. Her temp had spiked to 101.8. They decided that the needed to give her IV antibiotics to get ahead of the infection before it spread to her blood. They started her on one type of antibiotic before realizing it wasn't quit doing the trick. They finally received the culture report from her Peditircians office this morning and realized that the bacteria that was causing her cellulitis was resistant to all but one antibiotic, that they try not to give to little ones cause of the side effects. So she got one dose of IV antibiotics. And they sent her home to recover at home! So for 7 days she will be on Antibiotics at HOME! And hopefully it will fix everything.
As far as her vomiting is concerned the doctors said its probably caused by the infection, a side effect of the antibiotic, and possibly the position of the G tube.
So the priority is to clear the infection from her body. Once that happens we will be able to figure out how to get her to tolerate her feeds. In the meantime she is on a very slow rate.
So the good news is... WE ARE AT HOME!!! She is resting and fighting off this nasty infection! She was happy when I told her we were going home even thigh she still feels a little crappy.
I will post updates as much as possible, things can get pretty crazy in this house as I am sure you can't tell. Things change real fast.
I also wanted to add how greatful we are to EVERYONE for all your love and support and generosity. It brings tears to my eyes to think that there are so many people out there that care about Reagan and our family. You have no idea what it means to me and my family. It certainly take a little stress away. So THANK YOU, THANK YOU, THANK YOU! I will never be able to stop thanking people for all they have done. So let me add one more...THANK YOU!
Love, Reagan and family!
