I first want to start by saying a huge THANK YOU to all of you who offered support, kind words, well wishes for Bean and concerns about us both. Means the world to me that you care about her and were there for me when I was totally scared. Many of you have been asking exactly what was going on with her — most of you know that she has been sick for nearly three weeks and we had the diagnosis right at first, but then began to question it when the first plan of action didn’t seem to be doing enough.
Basically (for the beginning of the story – click here.) , she had been sick, developed a swollen lymph node and fever since April 23rd. I suspected she may have an infection in her ears or tonsils — they were clear. She was diagnosed with cervical adenitis (inflammation of the lymph node) and we were given an course of antibiotics. I had the worst time trying to get her to take them. She had no appetite so I couldn’t hide in food like I normally would. After 3 days, I called her doctor and asked for her to be switched to a smaller dose, but stronger antibiotic. She took to that one much better (only 5ml/day instead of 9ml 2x/day) and she took that for seven days. We were told that if things did not improve, she would need to get an ultrasound of the lump to see if it had become abscessed.
Another week went by, antibiotic course was done and she was actually getting worse. She continued to have a fever the entire time, and had lost almost 2 pounds at this point & the doctor (& us) started to worry about other possibilities including an abscess or worse. She would not turn her head and would have it tilted to the right and cried when ever someone had to touch her. We were referred to an otolaryngologists & we had an appointment with him the very next day.
I want to mention that this whole time her doctors were totally amazing. At no point through this whole thing did I feel that we were being brushed off or not taken seriously — their plan of action was the best for her and took into consideration everything including trying to reduce any trauma of tests etc for Bean.
The otolaryngologists assured us that what she had was not one of the way scary options, but he was sure it was infectious — he felt she had developed an abscess between lymph nodes and he ordered an ultrasound to be done the next day and prescribed a hard core antibiotic that works quickly and is used to treat staph infections. Giving her this new medication was NOT easy — it smells nasty, tastes worse and we have to give her 9ml 3x a day — but we HAVE to get her to take it.
We had the ultrasound the next day — Bean was amazing & it wasn’t easy for her. To have the ultrasound wand press on her sore neck and having to tilt her head the opposite way of comfort, she was a superstar. A few hours after her ultrasound we had another appointment with her otolaryngologists who confirmed that what she had was an abscess of her lymph nodes.
It’s some weird and random fluke thing that happens & they do not see very often. Likely started off as a simple throat infection — the infection went into her lymph nodes and got them all ‘sticky’ so they stuck to each other and her surrounding tissue. Infection developed in between the “matted” nodes and that is what we were battling. They needed to get a clearer picture to find out where and how much infection was there to determine if she can battle it out with antibiotics and time, or if she would need surgery to drain it. She continued to have a fever and maybe 2-3 hours of sleep a night (19 days at this point)
A CT Scan was scheduled for the next morning (Friday, May 11) and we continued to force the antibiotics into her. We were becoming quite concerned — she had lost almost 3 pounds and had no interest in eating. We were thankfully able to keep her decently hydrated, though it was clear she was dehydrated a bit. The otolaryngologists thought she would be able to just battle this out and surgery shouldn’t be needed.
We went to the hospital the next day for her CT scan — it needed to be done with contrast dye so she would need an IV put in for access. This is where things got totally sad. She seems to have inherited my diffiuclt veins — they are small, deep and hard to see and she was dehydrated so it was even harder. To make this story shorter — the technician tried to get access, the nurse tried to get access — they called in the special nurse from the special nursery (who is used to newborns) then when none of them could get it (honestly 7 tries, pokes, & blown veins) they called down the anesthesiologist to try to get vein access. We had to have the CT scan — no option for anything else and we needed the contrast dye. I had never heard her cry the way she had — it was dreadfully hard, but she really was amazing.
The anesthesiologist numbed her hands and feet with some topical cream and got one in her had the first try (those dudes are experts!). Our otolaryngologist came to CT to see us and it was at that point we decided to admit her for IV antibiotics (since we had vein access) and to rehydrate her. Her CT scan was done in less then 10 minutes and we waited to be admitted and for the results.
It was a long wait — as we waited for the next plan of action and for a pediatric bed to open up. We were given a room in the ER so she could get hooked to the saline and be given the same antibiotic she was getting at home, but through her IV. She had to have blood work done (which after 8 tries of getting in the IV, she was so DONE being touched … it was hard) and we still waited for the results.
After hours, we spoke again to her otolaryngologist who confirmed that she would need surgery that night, but there were some debates on if she would need to be transferred to a larger hospital or not. Her CT results showed the infection was worse then we had originally thought — many nodes were affected and she had two pockets of abscess (again, totally random occurring) and they would need to do both throat and neck surgery (official dxd is double retropharyngeal abscess). The hospital we were at does not have a pediatric ICU and there were some concerns over throat swelling after the surgery that would require a breathing tube in for 12-24 hours, which they were not able to do at this hospital.
The same anesthesiologist who did her IV would be the one in her surgery, so he came down and assessed if she should be okay with out the breathing tube. He and our doctor spoke, they got some plans in action and because the larger hospital wouldn’t have been able to have her transferred until the next morning, they wanted to have the surgery done asap — and felt it would be safe to keep her there. She would still be monitored closely, but in a different way.
Surgery was set for that night in only a few hours, we knew it was the best thing for her — going on 20 days sick and she was so tired. Papers were signed, plans were made, questions answered and they wheeled us down to surgery. That was one of the HARDEST things I have done. Bean has never been left without being with family — she has been attached to me non stop for nearly 3 weeks and as she lay on the bed screaming “MOMMY, I am scared“, I had to walk away.
Surgery was only an hour long. They went through her mouth and made an incision, drained one of the pockets. She had a second incision on the back of her neck and a drainage tube stitched in place. That was to be on for a whole day. Walking into recovery room where she looked so tiny on this huge bed was so sad. She was not yet really awake, but she kept calling for me. She was being watched very closely for troubles breathing and she was in some pain. Her stats were scary – pulse oximeter dipped to 91% while her heart rate rose to 175. She was put back on oxygen and given some medication for the pain. I tried my best to cuddle her, and calm her. Her stats started to normalize and we were wheeled up to the pediatric floor to try to sleep.
She had to be on an EKG and pulse oximeter all night that were monitored at all times on a separate floor — the leads kept coming off (her fever finally broke & she was sweating like crazy) so the nurses had to keep coming in. Bean just wanted to be left alone — she was so tired, but we didnt get much sleep. She didn’t seem to be in any pain which was great, but she absolutely HATED the monitors that were on her all night — I am sure those bothered her more than anything else.
She got through the night with no breathing troubles, little pain and while her heart rate was still high — it had dropped down to a more tolerable 120bpm. Her monitors were removed and the goals for her that day was to try to get her to eat and drink and keep getting the IV hydration and antibiotics. She was still really pale but was in good spirits, there was some but not too much draining coming out and thankfully none of that stuff seemed to bother her. She was seriously a superstar through this whole thing.
She started on soft foods — yogurt and pudding and actually ate pretty well. She ate a muffin and then we got her lunch from her favourite Mexican restaurant and she went to town on it! She ate so much it was amazing to see — it had been weeks since she had really eaten anything and she was so happy! She continued to receive IV fluids and I was happy to know that despite being dehydrated earlier, her kidney functions were fine the whole time (which means all that apple juice I was able to get her to drink at home is what kept her happy). She was going to the washroom again, she was playing and happy and the surgery was a success. She no longer had a fever and we had the answer and she bounced back pretty quickly.
Sunday was our hopeful discharge date — she had a much better sleep Saturday night with out having to have the monitors and little nurse interruption. She woke up with a cold and a nasty cough — but the doctor quickly confirmed that (poor Bean) she had just caught a virus and it was in no way related to the surgery or her infection. She had blood work done — her white blood cell count had gone down, her electrolytes were back in balance and she had not had a fever since before surgery. We were being discharged!!!
She just had to get her drain taken out, bandages re-applied and then get the IV (she called it her circle) off. The drain thing was hard, and disgusting. Like always, she was a trooper. We were sent home with extra bandages because I get the fun thrill of changing them at home (EW!) and we have a follow up appointment with her otolaryngologist in a few days.
We have to continue the big antibiotics at home (the same one she had at home before surgery and the one she was getting in her IV) for two weeks — three times a day and keep her monitored closely at home to make sure she doesn’t spike a fever again at home. This whole thing was some weird fluke thing that happened, doesn’t happen often and poor Bean had to deal with it. She still is not turning her neck well (though, it is bandaged) but she slept for 14 hours (nearly) straight last night!
This whole thing has been insane — she is on doctors orders to ‘eat anything she wants’ and after all she has been through, it is hard to say “no” to her. She has about 3 pounds to gain back, but her appetite is back, her fever is gone and that amazing smile is back (even though she has a nasty cough which can’t be easy on her given the surgery).
Again, thank you all for your well wishes — her lymph nodes are still swollen but should come down and I will keep you updated on her.
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