Life of Emerson: medical

Now for some of you may think that I have found a favorite child, but truth be told this little guy has just been beyond a blessing to us. At the same time we are dealing with some medical issues. I hope that this page can break down the timeline up into now.


D-Day (The Day) June 6th
  Ironically enough the day that our baby boy was born is also an important day in history
I had been doing just about everything I could think of at home to get labor moving along as I had been so uncomfortable. Sleepless nights, often ending up on the couch, due in part that I could not lay comfortably on my back or side, trying to get up from our bed, which is about 2 feet off the ground was like a trek up Kilimanjaro without proper gear.
That day was like any other day. Kids were at camp, my mil and sil were planning to come and see the kids. That meant some peace and quiet for me, and last minute cleaning. I had felt some contractions, but kept pushing through. Later that evening Elvin was off to firefighter training. He had just finished one course and received certification, now it was off to train to drive those trucks. I had advised to keep phone close because contractions were closing in. I contacted my mother and sister: contractions are close and STRONG! Little while later they came over with my two nephews in tow (3 yr and 5 mos) *sort of sweet that both of our boys are the same age (note we didn’t know what we were expecting, as we allowed all pregnancies to be a surprise)
No sooner that I took a shower, my in laws returned with the kids and I was out the door with my mom and sister. Hospital is about 15-20 minutes away. As we arrived, got a wheelchair and headed to labor&delivery, my husband had arrived. Of course nothing goes to plan...RIGHT! They work to check me in, and my water breaks. Back to triage where I will be assessed. My midwife, who is also expecting and had a little girl that August, arrives. I’m doing great about 7 cm.
Birthing floor or L&D....afraid I would be stuck on the elevator I opted for the latter. Up into the shower and I labored for about 20 more minutes and this beautiful ham arrived. Absolutely PERFECT!
The following day I noticed that I couldn’t quite tell the color of his eyes, there was so much cloudiness. I voiced my concern to the pediatrician, the following day, of which she states her concern. She had noticed that his red reflex was not present. Of course I already have me differential diagnosis (list of possibilities). On that list: glaucoma, cataract, retinoblastoma.
Notified my wonderful colleague, who would be Emerson’s pediatrician, and referrals were made.

6/17/19-7/26/19
An appt was scheduled for Opthamologist, along with a geneticist.
Diagnosis: glaucoma (right eye), corneal swelling (right eye) and bilateral dislocation of lens
I was in shock and awe.
Plan of action: drops to start off, blood work and buccal swab to determine and hormonal or genetic abnormalities.
Drops working and all test NEGATIVE.
Emerson has been eating well, growing well and meeting all his developmental milestones. He has got a little attitude, always making faces, but has the BEST SMILE!
To add to the mix as my mother is changing a diaper, she notices that his testicle is enlarged...off the toe ER. Of course my doctor brain is racing. He needs an ultrasound! Not in pain so most likely not torsion. U/s is reviewed by staff in ER and an on call urologist. Hydrocele is conclusion.

Hydrocele

Set an appt for urologist, Dr. Wildenfel. Of course part of the conclusion is that for his age, which at this point is 5 weeks, an ultrasound is difficult. No hernia or any abnormality is noted. But after examination she agrees to just follow up, and that he will most likely need a procedure to repair.
Have I said that Emerson is just full of surprises? Well less than 2 weeks later, now both of his testicles are enlarged. Now this was a possibility per the urologist, so I was prepared. Another ultrasound and f/u were made. No change except hydrocele on both sides. Just watchful waiting now...with normal wet diapers.

7/2/19
Earlier this month at our check up with the pediatric Ophthalmologist it appeared that Emerson’s pressures had improved dramatically. We are still using drops as we are unsure of whether the cloudiness he was born with (related to a small cataract), which had caused swelling to the cornea, caused the increase in pressure.

8/6/19
Well the doctor at that visit noted something abnormal. Appeared to be that Emerson did not have dislocated lens...PRAISE God! However that extra tissue from his iris is obstructing the view through pupil, which makes him difficult to dilate. On top of that it appeared that there was some opacities in the vitreous fluid of both eyes. An attempt for an ultrasound was done, the first part was okay but the second portion was incomplete. The specialist then had a retina and iris specialist see us that day. They too were a bit perplexed.
It was suggested at that time to due an examination under anesthesia. WHAT?
This totally freaked me out as I had to have surgery late fall for a broken finger, of which I was put under with just some propofol. Also did I mention Emerson will be turning 3 months next week, so one nervous mama.
By God’s grace I am a physicians but that means of course I Know, but I don’t KNOW! Plus this is our 3rd child and I have never had any complications with our oldest two, except an ER visit for unremitting fever. Now my cousin is a pediatric anesthesiologist, how awesome is that? So I reached out to her and she explained all sorts of information, some of which will be researched more.
8/21/19
After a few more conversations with the specialist, the decision to just attempt an in office examination, without anesthesia with two of the specialist. At this point conclusion was made that additional help was needed to determine what the excess tissue from along with the opacities in the fluid. That would lead us to our most recent first road trip with Emerson.

8/29/19
Emerson saw a vitreous and retina specialist in Houston this week. God blessed us with a doctor named Emmanuel...how awesome is that. I mean not only is that the name of our first son but also it means ‘God is with us’. How fitting!
Anyway, Emerson again is fairly difficult to dilate so we placed drops the night prior at our Airbnb, followed by drops in the morning and in the office. So what this specialist could gather is that the two issues, unsure if they are correlated, but those opacities brings concern for TUMOR.
Heart sinks...
Know as a physician I understand that this could mean malignant (BAD) or benign (more manageable). Per our conversation he states that it is a very low probability that it’s anything bad, but it could be something rare. That he has a good friend at MD Anderson that specializes specifically in this. As we step in to waiting room, Dr. Chang sends a message, through his personal phone. Within moments Dr. Gombos, which I have secretly renamed Dr. Gumbo, will see us today.
No other time have I just thrown out that I’m a physician, for I never saw a need. However, as if recently my title has helped me to get appt quickly and for that I’m grateful.
Now where all these clinics are is basically a medical city in and of itself. So we head over. We have found ourselves in a maze, going from elevator C, to one floor, then to elevator A to another and finally elevator B to another floor and down multiple corridor. All the while I’m on the phone, with a patient advocated trying to register Emerson as a new patient.
As we sat and waited for over 4 hours...I would have waited longer if need be, we saw so much sickness. What joy it appeared that Emerson was brining to those we passed. A smile crossing faces, despite the physical pain or the updates in the patients health after a treatment course.
We were able to see Dr. Gambos. He attempted to visualize, which was difficult. There was also an attempt at an ultrasound. At this point he provided us with the following: there is something there! Really? Well yes, and unfortunately to make sure the proper diagnosis and treatment is followed through a diagnostic exam will have to be completed. To do this most effectively, would be under anesthesia. That means intubation y’all! Now during these conversations, the specialist are making sure to use non-medical terminology for Elvin. As this is really his first appointments that he has sat in with me.
Upcoming plan: diagnostic exam under anesthesia in the upcoming weeks.

September
Just a few days ago the family was in Houston seeing specialist. FinL conclusion...well we need to do a proper eye exam in order to truly be able to visualize. Well, duh! That’s the non-medical part of me responding in my head. I mean poor little guy has had quite enough of your fingers in his eyes, drops being placed and that medieval contraption that attempts to keep his eyelids propped open.
The best way to truly determine what the abnormality is (mass, foreign object, unknown artifact), with an examination in which they have to put my child asleep.
Now you would assume that I would just sign on the dotted line, but if you all don’t remember, let me remind you of the fact that I no recently that less than a year ago had 2 surgical procedures to fix my broken distal phalanx (tip of my middle finger). So I don’t take lightly that the newest addition to our little family, will have to endure something as such. To make matters worse, they will have to intimate him, to make sure his airway is maintained.
Now don’t get me wrong, the two specialist are apparently on their ‘A’ game. They have studied and trained and have a large patient population. I understand, yet all I can think is ‘How I wish I could take his place’. I would be okay to be poked at, and see numerous doctors, get blood drawn, my cheeks swabbed for DNA genetic identification. ‘ I would not hesitate for a second. I believe most parents would agree, and I have 3 pretty amazing kids.
Isn’t that what God did, when He sent His son to die for us?
"He made the One who did not know sin to be sin for us, so that we might become the righteousness of God in Him."
-‭‭2 Corinthians ‭5:21‬‬

So I was told that next step was for me to get Emerson registered at TCH (Texas Children Hospital). I was given contact to get this started. Well I can say that God was just not going to make this step any easier. For many of you who know me well, the word PATIENCE and Elizabeth don’t quite belong in same sentence.
The representative whose number I was given, must have been thinking ‘I am not calling this lady back today, she is going to give me trouble for not calling back initially.
Finally I ended up getting a line and was directed to registration. After like a bazillion questions, Emerson was registered. Now I had to wait again, until a perfect day came up. This day had to include both provider.
So now I worry....
The date has been scheduled October 4th. I’m excited yet scared. I have been told that we have to arrive for 7:45, which is not so bad. The hard part is that the last time I can feed him is 3:45. For any one who has met my little dude, he is a Mack 10! He loves his breast milk, and now I have to withhold it. Boy is he going to be mad! I’m grateful we will soon find out what is going on with his eyes and any affect to his vision

Dr Liu: anesthesia
Bonnie: NP
Sandra: front desk
Xavier: triage
Ali: NP
Masha: surgical nurse
So as they carry my little boy away I think to myself, Lord I leave him in your hands.
I return to the waiting room, where Elvin is waiting with my oldest sister and niece. She was so sweet to stay and wait with me. She lives in Houston, and is the mother to the oldest nephew who is in college. It was maybe an hour later they called us back. I thought it was going to be much longer as I was told by one of the specialist that his lens would most likely be removed. As we walked back to the recovery area, my sweet little boy was awake and whining. I couldn’t wait to get him in my arms. Little eyes all puff, not opened just yet. Dr. Gambos says...I don’t believe this is a cancerous process, nor does he see think it’s a tumor. Dr. Chang says...I’m not sure what we are looking at. Her believes that there is a lot of inflammation, but unsure the source. No desire
to remove anything until they know the reason. So now there is a need to see another specialist.
PERPLEXED! That’s what everyone is.
On returning home, I’m still at lost of words to understand what’s going on. But the one who does know is God. The God who created this precious little being, even before i could even imagine him.
Updating his eye doctor back home...whom I have come to just adore. He thinks there are too many cooks in the kitchen. Currently we are trying to see doctor that specializes in uveitis in the city.

Uveitis

Most recently we had a lab drawn. Rather than draw labs on a bunch of things there was a decision to check for sedimentation rate or ESR. It tends to let us know if their is an inflammatory process going on (infectious or autoimmune).

10/16/19
So Emerson May be our most content kid, but he is keeping us on our toes. You remember back when he had a possible hydrocele. Well that appeared to have just naturally resolved. But again Emerson my little Mack 10 says ‘no no I have more!’ So the left side which was initially affected, well now he has swelling in his groin. Non-reducible, palpable, size of a walnut, not painful. Yes I’m in doctor mode. So back to the urologist, where we are waiting now for more ultrasound to be performed. The thought, after additional eyes came to exam him, is that he has a hemangioma.

Infantile hemangioma

10/19/19
God is so good! Have I mentioned this? I mean I don’t doubt God and his capabilities. I believe that Emerson was given to us and that he will be used as a testimony of our faith along with glorifying and honoring God.
The past 2 days Emerson has been fairly congested with some running of the nose and coughing (which is just the cutest as his lip are so tiny). Well as with any illness, I have rubbed him down with baby rub and palm oil ‘lwil maskriti’. Now this oil is from Haiti and I recall the many times my mother rubbed it on my sister and I when we were ill. Often times she would warm it and then place onto her palm she would rub vigorously onto our chest and back. I managed to get an acetaminophen suppository in as my attempt with oral Tylenol didn’t go so well. He managed to sleep, as did I, however upon waking suddenly I noticed his little body a lot my warm than prior. 103! The thermometer reads. I decide to place another suppository along with ice packs to his school. My concern at this moment is for febrile seizure.
Which for the most part is harmless, but I want to avoid it. So he feeds well, and he gets his nose suctioned, all the while operation ice pack is on. He finally falls asleep, and the temperature improved.
This went on for over 24 hours. So once kids and hubby went off to church I decided to go to the ER. My mother so lovingly joined us. He was tested for all sorts of things, all negative. Just a bad virus.
Another 24 hours later he is doing much better.

10/21/19
Just in time for his appt with another specialist. Dr, Bernal, kinds soft spoken female Opthamologist specializing in uveitis. She so graciously was willing to see Emerson. So we arrived and checked in, and of course there was a lot of crooning over the baby. This happens a lot in offices that don’t have a lot of kids.
Conclusion....does not look like uveitis and no need to start the steroid drops. But there may be need to do another EUA.
WHAT? Well okay, but I need whatever needs to be fixed needs to be done then. He did great otherwise.
As if the day wasn’t filled, when I pick up Emelia she had a massive explosion and wouldn’t be able to return for another 24 hours. Well that was the beginning of a lot of mess...thought of putting her feet through a trash bag to catch it all. GROSS



10/24/19
So little baby Mac was seemingly getting better. He woke up a bit fussy, but nothing a little baby wearing couldn’t fix. I prepared myself to be home with Emelia as well as she had a stomach bug. Things were going pretty smoothly as there was no explosions from the top or bottom of Mia. Then...a cry a heart wrenching cry from Emerson that I had not heard before, like he was in so much pain. My first thought was the new lesion in his groin that we had some pending images. So off to the emergency room, and I contacted all of his specialist. All three of us in tow, into the emergency room. Of course I have some treats for Mia, because that is how you tame this little girl of mine. We are brought back quickly, long story is told to the clinicians and staff, and well off we go. Multiple ultrasounds (based on orders seen from our urologist) followed by what seems like a lot of labs (coming from an agreement between his eye doctor and another specialist). He was truly a champ through it all. Then suddenly surgical team comes in, and my heart sinks.
Now at this point:
Mia is eating a turkey sandwich
Emerson has stopped yelling following labs being drawn
My father, has picked up Manny and he is playing with his cousin Pop and their having a grand old time
Elvin managed to get out of bus duty at school, so he is headed to get Mia from me
Oh yes did I tell you I had managed to put an order for Walmart pick up?
The blessing in all of this is that I have such a support team. Those who directly support, while others may be praying for us, which is very important.
Back to the surgical team, who do not believe it’s a hernia. The questionable read from the radiologist on ultrasound states hemangioma (go back to 10/16/19 note). To be more conclusive an MRI is warranted. This poor kid can’t seem to get a break.


10/25/19
Of course God is not done with his child. So I had also noticed some swelling to Emerson’s left eyelid, and I notified his doctor. Well as Jennifer has been diligently working on putting a team together for his examination, I was notified that a CT of his orbit would be needed. Now mind you no more than 30 minutes prior did I receive a call from the surgical department that they were trying to schedule the MRI of the questionable hemangioma. So my prayer is that God will use Jennifer to make things happen, so that everything will happen during the time he has to be placed under anesthesia. To add to all the craziness, Emerson will be seeing a rheumatologist as well.
Many people in our culture are non believers, and for them they may say it’s just luck/karma or better yet just being nice is what will get you things or move you further in life. But as a believer in Christ I know that he has written a story with Emerson’s life and well God will receive all the glory.
To be honest I haven’t really let out my emotions. I mean my faith and trust is in the Lord, so it’s not to say God does not allow for crying. But I know that
"He gives strength to the weary and strengthens the powerless."
Isaiah‬ ‭40:29‬‬
My tears are not in fear or lack of trust , it’s just that my flesh yearns to fix all the things my self. Let’s just say I’m willing to admit that due in part that I’m a physician I want to fix and heal, but it appears that I’m mostly mom and doctor as needed.


10/29/10
But those who wait on the Lord Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint. Isaiah 40:31
I am working on taking time to fix my eyes upon the Lord. It is nerve racking to wait on medical things, even more so as I am a physician.
We are praying for some swiftness in Emerson's care

Comments

  1. Liz, thank you for sharing so I know how to pray for y’all. Liz, you were always one of the strongest friends I had. If anything could deplete your strength I would say this might but thank God that your strength does not come from you but in your weakness He is your strength!! I cannot imagine how vulnerable you must feel being a physician and yet having all these specialists not having answers. But God is faithful, and He is the Great Physician. Praying for you dear sis. Loving you from afar! Renee

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