A year ago this month, Jake woke up on a Saturday morning with a huge knot the size of a golf ball on the left side of his jaw. He had been fussy and acting like something in his mouth was bothering him that week, but we thought he was just cutting a tooth. I got him into the pediatrician as soon as they opened and he was put on an antibiotic and referred to an ENT. We saw the ENT on Monday, who immediately hospitalized Jake so he could receive IV antibiotics for what was suspected to be an abscess. Memorial Hermann Memorial City Hospital's children's ward was practically empty and brand new. I was nervous not being at Texas Children's, but this was the only place our ENT had privileges. The nursing staff was amazing, and since we ended up there for a week, that was a Godsend. Being that Jake is our first and only child, and we were already going through some hell of our own, having our 18 month old baby put in the hospital was really scary. He also had a CT scan that he had to be strapped down for while screaming hysterically out of fear, which although he was not in danger, was so hard for us to watch. Writing about this makes my stomach go into knots, but I hope in doing so it helps someone else.
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JK after checking in to hospital (he initially thought it was a fun adventure) |
After a few days of strong meds, the knot hadn't gotten any smaller, and the ENT suggested surgery to drain it, which would supposedly allow the meds to work better. I truly cannot think of a worse feeling than when your child is taken from you to be put under anesthesia, especially for the very first time. I have NEVER in my life felt so helpless and out of control, over which I spent every second praying for God to take care of Jake and get him safely through the surgery since there was nothing we could do but sit and wait. He woke up groggy but was sweet and hungry, which was a good sign. Unfortunately a few days after surgery, the knot still showed no sign of dissipating, which was a big concern. Doctors from the infectious disease team were called in to examine Jake and try to figure out what else he could have. Things such as TB and even cancer were on the table, which was terrifying. The doctors decided to let Jake go home and give things one week, and if the knot was still present we would need to come back for further testing.
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| Hooked up to his IV pole (IVs are torture for toddlers!) |
Once the week had passed and Jake still looked like he had a gigantic gumball in his cheek, we consulted with the doctors and they suggested an MRI, which was really difficult to get Jake squeezed in for as an outpatient. So at that point, a family friend of the Settles got Jake in to see the chief of staff of the ENT department at Texas Children's. When we saw her, she believed Jake had an abscess that was not relieved because the first surgeon had operated from the inside of Jake's jaw (which had been a huge concern for Michael and I regarding how effective it would be). This new doctor felt the proper method was to operate from the outside, which was more invasive but seemingly more effective. We were extremely leery of another surgery, and especially one from the outside of his jaw, which would leave a (little) scar on his face and require a drain to be sutured in the incision for a few days. This was a very busy woman who had a very big head, and her attitude was not the most comforting-- almost patronizing. But we trusted her credentials and scheduled surgery #2.
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Resting post-surgery (clinging to a cookie!) |
Jake went in for his second surgery two days before my 29th birthday. This surgery was longer and more extensive. When the doctor came to give us the report after surgery, she said she was surprised not to find what she expected (she told us pre-surgery to stop worrying because she was 99% sure and saw this all the time, so I was very irritated with this egotistical woman's misjudgement.) It was not a normal abscess full of liquid, but a collection of dead tissue and dying lymph nodes. She sent a tissue biopsy for testing to see if something would show up. And after that's when everything fell a part. Jake came out of surgery extremely agitated and disoriented, not like the first surgery. The nurses kept telling us that the doctor had really poked around in his jaw and that he would be very uncomfortable for quite some time. But I just felt like something was not right.
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| He loved the cookies from Aunt Caroline, Uncle Chris & cousin Lawrence |
Instead of Jake getting more alert and coming out of the anesthesia, he was becoming more agitated and uncomfortable. He began having severe breathing attacks every few minutes where he could not catch his breath and would turn purple. We also strongly believe he was hallucinating. My mom's family has a history of intolerance for pain medication, and I started to suspect that the anesthesiologist either overdosed Jake or gave him something that did not agree with his body. We watched every single other patient that day come in to recovery and leave, but poor Jake was so unstable they would not move him. Each time he had an attack they gave him oxygen. We spent nearly 8 hours in post-op recovery, and it was truly the worst 8 hours of my life watching my child suffer like that.
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| Playing with his Elmo balloon |
Our doctor never bothered to check on Jake in recovery, nor was she ever informed of his condition that day. I begged and pleaded with the nurses to take Jake off of the pain meds he was on and to give him something different, but they wrote me off as an overly anxious mom. The anesthesiologist came in and totally dismissed the idea that she could have overdosed him or given him something he was allergic to-- she was useless and I was livid she was ignoring all the blaring signs of a medication reaction. Our doctor's assistant finally came in and agreed with me that Jake was having a severe reaction and needed to be given something different. It took over an hour, but once he was off the morphine and hydrocodone, his eyes finally undialated and he recognized us. He was more alert by late evening when the breathing attacks finally stopped. Unbelievable that he was tortured for 8 hours because no one would listen to my suspicions. Because of his breathing difficulty, Jake was placed in the intermediate care unit and monitored around the clock, but we were just glad to finally be in a room and be able to rest after such a frightening day.
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Precious boy sleeping off the anesthesia |
Our doctor also never came to see Jake during his hospital stay, which infuriated us. She sent her fellows in training to examine him, who could not give us a straight or consistent answer about anything, particularly the testing that was being done on Jake's tissue. When we were released a few days later, they told us that we would be called with results the following week. We never got that call. At our follow up visit with the doctor, things were tense. She had called us after we got home to discuss the complaint I filed, and said she was completely unaware of everything that had occurred! Isn't that scary??? The ENT chief of staff doesn't know what is going on with her own patient-- especially a child who had a severe allergic reaction for 8 hours???
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| Even with a huge jaw he's still handsome :) |
The first question I asked her at the appointment was if they had determined 100% what Jake had and that it was not cancerous. She kind of looked at me weird and said "no, we knew he didn't have cancer when he was in the hospital." And yet all that time her uninformed colleagues told us the exact opposite, that cancer had not been ruled out. I pretty much went through the roof!! She then had the nerve to say that it was our fault for not calling her for results and that she told us after surgery to call her on Tuesday. Well on Tuesday we were STILL in the hospital but she never told us to call anyway-- all 5 of us who were in the waiting room that day agree on that. This chief of staff obviously believes in quantity of patients verses quality care, because she actually told us she was too busy to take the time to follow up herself! She did not even apologize before I stood up and walked out the door in the middle of appointment. I have never been so angry and so appalled. I sat down outside the doctor's office and cried wails of relief that our son did not have cancer. Such an embarrassment for Texas Children's ENT department that the chief of staff mishandled things so poorly and then acted so unprofessionally about it. I was impressed however with the department at Texas Children's who took care of our complaint, and I do feel that they took the proper steps to investigate why things went so wrong. I have since talked to numerous parents who had similar experiences at Texas Children's-- having kids who were either overdosed or had allergic reactions that were ignored, and that is so sad and scary to hear, and all the more reason for us to share our story and raise awareness for other parents.
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| Resting with Daddy in the hospital |
Needless to say, we found a new ENT (third time's a charm!), and he is the most amazingly compassionate man, Dr. Newton Duncan. Based on testing done from surgery #2, we knew that Jake had
Mycobacterium avium-intracellulare (MAI), but we were never explained to what it is, and luckily Dr. Duncan is super specialized in this type of bacterial infection. The new infectious disease doctor who worked in tangent with him was Dr. Jeff Starke, another wonderful man who is nationally recognized for his work on MAI. In children, Mycobacterium avium-intracellulare forms a distinct mass that causes swelling of the lymph nodes of the neck. The node is firm at the beginning, but an abscess is formed eventually which is blue/purple in colour. The treatment of choice is surgical excision of the affected lymph nodes, with 3 subsequent antibiotics for 4-6 months. Additional surgeries are common to continue removing the dead tissue. Jake's overall demeanor while he had the infection was generally ok, except the tenderness and discomfort he felt from the knot. He had less energy and a hard time eating, and we had to be careful that he never hit his jaw while playing, especially after operations. The medications would end up upsetting his tummy, but it was only temporary and he was back to normal when he got off of them months later. The biggest relief and blessing was hearing this infection was NOT life threatening and that it was curable with proper treatment and medications over an extended period of time.
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On the way home from getting his fishy a few days after surgery #3 |
So, we had to have a third and final surgery. Doctors reassured us there was nothing we could have done to prevent Jake from coming in contact with this common bacteria that is present everywhere outside. Jake was probably very unlucky and happened to be teething at this time, so they think the bacteria snuck in his body through his open gums where teeth were coming in. Surgery number three was smooth, much like the first one. Jake was not given morphine or hydrocodone and his condition post surgery was much calmer. We also requested not to have the same reckless anesthesiologist from the second surgery, which brought us comfort as well. Dr. Duncan was phenomenal and we were so thankful! He was extremely attentive and was with us every step of the way. He changed all of Jake's bandages and did everything himself while Jake was in the hospital! He is so communicative, kind and compassionate and I feel he was an answer to our prayers. He explained everything so thoroughly anytime we spoke, which was such a relief to finally have someone who cared enough to take the time to help us understand exactly what would happen and why. I truly love this man and will always sing his praises. If anyone is looking for an ENT, Dr. Duncan is THE best and his nurses and office staff are wonderful as well!
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| Happy to be home from the hospital! |
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| Progress: No more bandage, just a band aid |
Since we had filed a complaint about the second surgery, we were assigned a hospital liaison to accompanying us during surgery #3, who was familiar with the horrible scenario we previously faced and dedicated herself to making sure it did not happen again. Having the right doctor also changes everything, and I cannot stress enough that if you aren't satisfied, get another opinion! I wish to this day I had found another doctor before putting Jake through that first surgery since I didn't have a good feeling about that guy's method of going inside the mouth. And I wish I had raised hell that our doctor from the second surgery never bothered to show her face again after giving us the post surgery update. She should have been the one attending to Jake and her lack of involvement and lack of communication with her fellows was shameful. I also want to mention that Jake's chart was screwed up numerous times and was not labeled with his morphine and hydrocodone allergy, which is so freaking scary. Now I am a fiend about asking if his chart is correct!
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| He was released just in time for Halloween. Cutest elephant ever! |
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By late Fall he had no band aid and was less swollen |
Jake stayed on his triple cocktail of medications from October to February, and was finally given a clean bill of health just in time for his second birthday. During that time, Jake's jaw very slowly began to gradually retain its normal shape. We had gotten so used to how swollen he was that he almost looked unnatural to us when it started to really shrink. The day in February when Dr. Duncan said Jake had "graduated" and would no longer have to come in for check-ups or continue the medicine was absolutely the most wonderful feeling!! I left the medical center crying tears of joy and could not wait to call Michael at work and tell him. We felt the biggest relief and were so thankful Jake was fully recovered. He has two small scars that will probably continue to fade as he grows, and they really aren't that visible unless you look underneath his chin and jaw. But they are little reminders that still send chills up and down my entire body if I allow myself to stop and think about it all. Mostly I have a feeling of overwhelming gratefulness to God for healing Jake, and to Dr. Duncan and Dr. Starke for being such stellar physicians.
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Singing Happy 2nd Birthday (I was crying tears of joy!) |
I just want to re-iterate how incredibly lucky we feel that Jake is fully recovered and healthy. I cannot imagine what families go through when their children require dozens of surgeries and long term stays in the hospital, and my heart aches for them. I also am so thankful we had access to the care Jake needed. Families all over the world face much worse scenarios than ours because they cannot find or afford proper medical attention, or there is no cure for their child's condition. I will never take our good health for granted after this. We are so fortunate to have brought our son home, when many parents leave the hospital empty handed and heartbroken, and I will never lose sight of that. I have learned a great deal from what Jake went through, and thanks to encouragement from my amazing friend Jordan, I will always be ready to put on my invisible "Mommy Bitch Hat" when dealing with physicians now! The gloves are off and I will never again worry about being polite or trust what is being done if my child is not reacting well and my gut is screaming at me to do something. I hope that any parent reading this will be confident in whatever situation they encounter to remember that YOU and only you are your child's advocate, and speaking up is your right! Never let doctors or nurses treat you disrespectfully and make sure that you report any bad instances to the right office so that hopefully it won't happen to someone else.
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We had SO much to celebrate when Jakey turned 2!! |
My birthday wish when blowing out my own candles was for God to heal Jake, and thankfully, He did. He also gave us the most amazing support system of people who we are immeasurably blessed to have in our life. I have to acknowledge our family and friends who were SO loving and supportive those couple of months of us being in and out of the hospital-- they brought gifts for Jake and sent cards, balloons and toys from out of town, and they came to visit and helped out in so many ways. I will never forget the outpouring of love we received, and every one of their efforts sustained us during that hellacous time. My best friends are so precious to me and I love them all so much. The staff and families at St Francis where Michael works were also wonderful, coming to visit and pray over Jake. When I look back on what was going on between Michael and me during that time, I am really proud of how we still stuck together as parents and were by Jake's side, united and dedicated to getting through it as a family. We didn't just support Jake but each other as well, which I think was so important and partly why things wound up the way they are today. The bond we share as parents is one of the most powerful things I've ever experienced, and sometimes I think the Lord knew that Jake getting sick would be partially responsible for eventually bringing Michael and I back to each other.
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| Having a blast almost one year later in Italy, with NO knot in sight! |
Today, Jake looks normal and he is fully healed, as is our family. The Lord has worked many miracles in our lives the past year and we could not be more grateful. I'm glad Jake will not remember what he went through, but as for Michael and me, we will never forget. Every time we look at him, we know how incredibly blessed we are to have a healthy, thriving child who is living his life to the fullest...Amen to that and God bless you my sweet Jacob Knox, you are so tough!!
Psalm 126:3 "The LORD has done great things for us, and we are filled with joy."
