We had an extremely eventful weekend. One of our girls had bad kidney stones that were too big to pass. We have spent 2 years going to doctors and hospitals trying to figure out what was wrong with her and what we could do. She finally got an operation to remove all 5 kidney stones on Saturday, February 8th. We had started out using the public hospital but they just weren’t getting it done so we switched to a private doctor. Her surgery was expensive but it went well. She had slight complications during the week when her catheter came out on its own and she lost a decent bit of blood. She went to the doctor who did the surgery on Thursday and he said everything was fine.
On Saturday night, around 9:45 pm, Catherine and I were laying in bed watching Netflix when Misbeli’s mother came to our house. She couldn’t even stand up straight and told us that Misbeli was dying and that she had taken her to the clinic. I immediately put some clothes on and got on the motorcycle with her and her boyfriend to go to the clinic. I was grateful to be on the back of the motorcycle because I was terrified, we have already lost one child and that was truly tragic, the thought of Misbeli dying because of complications from a surgery that we paid for was almost too much to handle. I took some deep breaths and told myself that the mom was just overreacting and Misbeli was probably fine.
Once I got to the clinic and saw Misbeli I realized that her mother was right, she was dying. When I first saw her she was moving from one room to another to get blood work done. She was incredibly grey, with wide sunken eyes. She could not stand up on her own and was swaying about, she was conscious but did not seem lucid. I immediately went and found the nurse who was attending her and asked what they were doing for her and what we could do. He said they were getting some tests done on her and after explaining the surgery and difficulties she had been having he said he would call the urologist. After talking to the urologist he told me that they would keep her in the clinic overnight and the Urologist would come in the morning. I asked him if he thought she would be ok until the morning, because from looking at her it seemed like she was on death’s doorstep. He told me she was not in immediate danger and would be fine until the morning. I called my mother, who is a nurse, and asked her what she thought. She said that if the girl looked that bad she probably needed help immediately and asked me to get the girls vitals. I asked the nurse what her heart rate was and he said 84, which is normal. Both my mother and I found this hard to believe so I took her heart rate on my own, it was a staggering 164 with a 32 respiratory rate and almost no radial pulse. These vital signs along with her look and state of consciousness pointed to her being on deaths doorstep. At this point I really did not know what to do, I knew we could not wait for the morning for her to see a doctor but didn’t know if she could afford to spend an hour in a taxi on the way to Santiago. I talked to the nurse again about her actual heart rate and my concerns and he called the Urologist again. The Urologist agreed to come see her.
When he got there I told him her vital signs and he looked at her and his first words were “why didn’t you bring her earlier” not a good sign. Misbeli was in an immense amount of pain at this point because her urethra was blocked. The doctor immediately got to work. After doing some stuff to relieve her pain he called a pediatrician to come in and talked with me about what had to be done. It was clear Misbeli was bleeding internally, what was not clear was what was bleeding and how badly it was bleeding. He thought we would have to do exploratory surgery in the morning, after she got some blood into her and had her fluids stabilized. The exploratory surgery would involve fully opening her side and would be exceedingly risky. Misbeli’s chances did not look good. He said she was going to need blood. I talked to some of the family and got an uncle down who might be able to give blood. The pediatrician finally got there and upon seeing Misbeli her first words were also “why didn’t you bring her earlier”, again not encouraging. By this point Catherine had come to the clinic because she thought it might be her last chance to see Misbeli. The pediatrician and urologist decided that she needed to be sent to an intensive care unit immediately. They called the Children’s hospital in Santiago about getting Misbeli sent there but they had no beds available in intensive care. There was only one other hospital that had an intensive care unit but it was private and apparently quite expensive. One thing I knew was that Misbeli was not going to die because of money so I said lets go to the private hospital.
During all of this we had been looking for someone with Misbeli’s blood type, the uncle had not been a match. Luckily a Dominican man who was at the clinic for a different health issue had been checked and had the same blood type as Misbeli, he agreed to donate blood for her. Catherine, myself and her grandmother, who works at the foundation and goes by “Tia’ or aunt, got in the ambulance and went to Santiago, the mother was completely drained and said she would meet us in Santiago in the morning.
In total we were at the clinic from about 9:30 to 12. It was one of the most difficult periods of my life. When there was something I could do or some way I could help it was not bad. I could focus all my energy on getting that task done and not worry about anything else. It was the in between times that were awful. Standing around knowing this girl I love is dying and not being able to help was just a miserable feeling. One that if I‘m being honest, at times threatened to overwhelm me. I’ve been through the death of one kid. I’ve gone on the walk through the streets to the cemetery, seen the child sized casket, the toll it takes on the family, and lived with the thought that if I had only done x it all could have been different. The thought of going through that again, especially if the girl died because of a surgery we paid pushed and paid for, brought me close to the breaking point. Knowing Misbeli, her mother and entire family were watching and counting on me helped me stay strong and keep it together.
We got to the private hospital in Santiago and Misbeli immediately went into the emergency room where a urologist and pediatrician were waiting to start working on her. After an hour or so the urologist came out and said that she was stabilizing but needed to be in intensive care because it was still a delicate situation. To be admitted into intensive care in this hospital you had to put down a 3500 dollar deposit. I had a grand total of about 15 dollars on me and my credit card got rejected. I told them that I could 100% get them the money as soon as the bank opened but they were adamant that they needed a deposit before sending her to intensive care. They started making preperations to send Misbeli to another hospital that did not have an intensive care unit or the necessary technology to treat her. All I could think was how totally unacceptable it would be for Misbeli to die because I couldn’t come up with this 2,000 dollar deposit.
I needed internet so that I could get the number to call the bank, the hospital claimed there weren’t any computers I could use that had internet(a claim I was highly suspicious of). I found someone with a phone that could access the internet and they agreed to let me use it to get the number. The bank told me the card was blocked because of suspicious activity and that I did not have 2000 dollars to withdraw. I was feeling extremely frustrated at this point and was asking the bank representative what I could possibly do to get this money. He told me there was an account linked to this account that had enough funds. It was my brothers bank account, long story short he had accidentally linked it to mine a while back when we were starting good threads and I even had a debit card in my wallet that corresponded to it. I had not used that cc in well over a year and had almost cut it up on various occasions. I tried it and luckily my brothers bank account was in better shape than mine and the 2 grand passed.
Misbeli stayed in intensive care for 2 days and then spent another 2 days in a normal hospital room. She got released Wednesday, February 19th and is currently on bed rest with a catheter. She will get the catheter removed next Wednesday and god willing will be past these kidney issues.
People sometimes tell Catherine and I that we are saving these kids lives, in general this is hyperbole and makes me a little uncomfortable. In this case I can say beyond a shadow of a doubt that if not for the Joan Rose Foundation Misbeli would be dead. As always thank you all for all of your continued support, together we are making a difference for these kids.
