On Wednesday evening we decided to take the 5pm ferry so we would be in San Jose first thing Thursday morning. My granny is coming with my mom and Irene. I have been in the hospital so many times this year and she has never been here so it is nice to have my granny’s support. We are staying in Turrucares at Irene’s. We have to be at the hospital tomorrow morning by 9:30 am to draw blood and run the usual tests. We had a good night together. I slept very well, I always do at El Bolero.
The following morning we were out the door early and after running the tests we found out that my sodium is low again. This has really been causing all kinds of problems in my life having this sodium level low. Dra. Castro has decided to admit me to the hospital again so that we can get an IV in me and start giving me sodium. She has called Dr.Fernandez the nephrologist and Dr. Richmond an Endocrinologist as well as Dr. Caceras a pediatric neurosurgeon. Geez! That is alot of docs!
We did not think I was going to have to be admitted to the hospital so my mom and granny had to run out to Turrucares to gather our things and we needed to meet Dr. Castro at the hospital at 6pm. Mom and granny took off to Turrucares to get our things and I stayed with Irene at her mom’s house in Escazu. It was almost 8pm by the time we got upstairs and into our hospital room. Dr. Fernandez has ordered that I have a catheter foley put into me so they can run a 12 hour study on how much I am urinating to see if I am losing sodium through my urine. Previously two nurses had attempted to find my vein to put the IV in me and in the end Dr. Navarro the pediatric surgeon was called in to do it. I am not very happy about this at all as I have been poked already so much today. Dr. Navarro came by at 10pm to find a good vein and at last he found one in my foot. We were able to start the slow drip of sodium into my veins. Dr. Navarro went ahead and put in the catheter as well as none of the other nurses wanted to do it. Dra. Castro said the nurses are intimidated by my mom! The catheter has a small balloon that Dr. Navarro fills up with water so that it stays in place. We will be monitoring how much I am urinating. This is the most uncomfortable feeling in the world. I do not like it one bit and I do not sleep well that night as I can’t get comfortable with this thing inside me. We went ahead and took a urine sample as we will be testing to make sure that I do not have a urinary tract infection. Mom and granny did not get much rest either as I was not sleeping and mom kept patting me and trying to soothe me.
The following morning, mom noticed that my diaper was wet. It should not have been wet so she mentioned this to the nurse. As it turns out the catheter was leaking as the size was too small and we had to take it out and start all over again. Hours of being uncomfortable to think that by 10 am I was going to have it taken out only to find out that I have to have another one put back in! I am not a happy camper at all and neither is mom and granny. The head nurse came in with an assistant and put in another one, we took another urine sample as well as mom has decided to start testing my urine at two laboratories to make sure the results coincide. I have had so many urinary tract infections we have to make sure that labs are right and everyone can make mistakes sometimes.
By 5pm, I am highly agitated. I can not get comfortable I want this out of me. Finally the nephrologist comes by to see me and says she has enough information from the study and that I can have the catheter taken out. This is the best news ever. Shortly after she leaves, Dra. Castro calls and says not to take it out but to leave it in for more studies. Mom and Dra. Castro exchanged words as mom wants it out just as much as I do as she can not stand to see me suffer and granny is not helping much either as she really gets excited if I am upset. So mom finally makes the decision to go with the first Dr. and to have them take it out. You would not believe the relief I feel from this being out of me and immediately I go to sleep.
My team of doctors have decided that I either have salt wasting syndrome or SIADH which stands for Syndrome of Inappropiate Antidiuretic Hormone Secretion. Now they believe I am either losing the sodium through the urine or that my pituitary gland in my brain is releasing too much of the anti-diuretic hormone. I know…. it is complicated. Today came by Dr. Caceras he is a pediatric neurosurgeon. You might wonder why he has come to visit me? Well my mom found out on her support group that many Liss kids have had what is called Tethered Spinal Cord Syndrome. This means that it is possible that my spinal cord which should normally hang loose in the canal and be able to move freely up and down might be tethered and held tight at the end of the spine. This can be a cause of recurring urinary tract infections. So it has been decided that I shall have a MRI on my spine to see if my spinal cord is tethered or not. Dr. Caceras also mentioned that it is very possible that the reason my sodium is low is because I take a seizure medication called Trilpetal and one of the side effects Trileptal has is hypnotremia (low sodium). This is news to my mom and knowing me, if there is a side effect I am usually the one to get it. Mom calls Dr.Luna my neurologist and explains her concerns and we begin to wean me off slowly of the Trilpetal and introduce a new drug called Keppra. At the moment the other two doctors have cut back my liquid intake by half to see if that will help raise my sodium and in three days my sodium is back up. They allow me to start taking in a small amount of fluids again.
In all this time that we have been testing and seeing doctors it turns out that my urine culture has showed back up positive. It has been only 15 days since my last urinary tract infection and this time the bacteria of choice is Ecoli. 🙁 It is very resistant as well and is showing that only one oral antibiotic will work and the other antibiotics are only by IV. We immediately start me on an IV of Amikacine. We have not yet got back the results from the other lab as it is private lab and they were closed over the weekend and we will not know what their results are until Monday. We started the IV for the weekend of the antibiotic. My parents are distraught over this news and now more than ever do they want me to have the MRI to see if this is the reason why I keep having these infections.
On Monday mom begins to call the private lab to find out the results from the other urine culture. Guess what? The test came back negative!! It says I do not have a urinary tract incfetion. This is very conflicting and confusing for everyone now! The hospital lab says I have Ecoli a very resistant bacteria and the private lab says I dont have anything at all. This is not good news, but now since we have started the antibiotic we can not stop it and also none of the doctors know which lab to believe. Not good at all. We continue the antibiotic and mom schedules the MRI for Tuesday.
Cima does not have the best equipment for imaging to do the MRI and so we have scheduled it at the other private hospital downtown. We get permission from the hospital for my mom,granny and Irene to take me out of the hospital and drive me to the other hospital to do the MRI. Thankfully everything goes smoothly and I have the exam and am back at CIMA by noon for lunch.
We got the results the next day and spoke with the neurosurgeon who studied the MRI and it turns out I do not have a tethered cord. On one side it is a good thing my spinal cord is not tethered as if it was it would mean surgery but on the other side we still do not have an answer to why I keep getting these infections and were hoping to have an answer. Back to the drawing board.
We tested my sodium again and it had lowered again, not drastically but it lowered and that is not good so they have cut the water back again. It has been determined that Friday, my mom’s birthday, we will be getting out of here. I lost my IV in my foot so we have started me on the oral antibiotic that will supposedly work on the maybe I have an infection maybe I dont have infection. Either way, we can not risk it. I have to finish my antibiotic. The plan is for me to go home with the reduction in liquids and come back in a week to test my sodium levels again. I am feeling better and can not wait to get outta here. Thursday evening my team of doctors got together at 7pm to have a round table discussion about me and to come up with a plan. That evening they came into the room to announce to mom they want to put me on an antibiotic for six weeks after I finish up the antibiotic I need to take for the supposed uti I do or do not have. Six weeks of antibiotic???? It is that nasty one too Ciprofloxacine but what are we to do? My parents have a difficult time making the decision but after speaking to many other doctors and getting different opinions they decided to go with their decision. We all hope it is the right one. You see my bacterias just keep getting more and more resistant and that makes things very difficult.
On Friday, we left the hospital by noon and were home by 5pm. It is great to be home and my daddy is ecstatic to see us.
Love Malia