Enjoying Home

Tehilla is enjoying being home. Thank G-d, she is doing well. She still has a bit of a cold and a cough. 

Before we left the hospital, Dr. Golander came to tell us that on Mondays there is a cardiology meeting with the entire department to discuss relevant cases. He said they would discuss Tehilla and see if anyone had other ideas. 

We have an appointment with him in a week and a half. 

...Gone

Dr. Golander popped in and was happy with how she looked, and had heard about the onions. I asked him if he had heard of such a thing and he said, "uh, yeah, for eating." He said, "okay, we're going to kick you out now." They will call us to give us the surgery date.

The doctors did their rounds and were all thrilled, and smiling from ear to ear that Tehilla did so well with the catheter and anesthesia. 

And we're leaving now. Tehilla can't wait to be in her swing and I can't wait to be in my bed. 

Thanks for all the prayers, love and support. <3 to all of you!

Going...Going...

Our Geneticist/cardiologist came to check on her. He was thrilled to see how well she is doing. "She is really beautiful." I told him we've been giving her inhalation and nose drops. The nurse chimed in, "And onions!" So I explained to him about how we got the onion idea, and he stood there, pulling out the science and figuring out how it worked. 

He checked her and said that she should go home and joked that the catheter had helped her. We just need the pediatrician from the ward to agree, as well. 

Next the pediatrician who has been checking her, popped in to see her. She had just fallen asleep in the stroller. He sat down, looked at her and sighed. "She really is so beautiful. She is just amazing." He will come to do a checkup soon.

Next a different nurse came to talk to me. She wanted to know how I felt about going home and what my opinion is. Then she started talking about how beautiful, special and smart she is. 

While typing this the pediatrician came back, examined her and signed off on her going home. Now, we just have to wait on the paperwork. 

Much Better

Last night, was another sleepless night, but hospitals aren't really meant for sleeping, right? Tehilla is doing much better. She came off the anesthesia very nicely. She did not throw up and it did not cause her cough to worsen. 

She actually has been doing much better. I've been giving her nose drops and inhalation with saline. We are waiting to be called to go see the cardiologist. I plan to ask him to let us go home, as there isn't anything they are doing for her that I can't do at home, and there are several kids sick in the ward with bronchiolitis. 

Many people have messaged me and commented that I should relax and that the decision is a good one. 

I am extremely happy with their decision. I have absolute confidence in our cardiac team. I know fully that what they have decided is the right course of action for Tehilla. A month will go by quickly and we will be completely ready for the surgery and hospital stay when it does. 

Here's our heart warrior princess, back to her happy self:

The Decision

Dr. Golander just came to talk to us. They reviewed the numbers and images. The numbers showed that the pressures are borderline. The images showed the pulmonary arteries aren't as severely small as they thought and are borderline. They reviewed everything with Dr. Erez and came to the decision that she should get the surgery in a month. 

They reviewed her blood test results and saw that her hemoglobin did not show chronic damage. It showed that, yes, she's not doing great but it's not critical. We will continue as before. Tomorrow, they will give us a date for the surgery.

In the mean time, we are being kept in the hospital until Tehilla is better. She came in with a slight chest infection and a heart catheter can worsen it. So, they won't release her until she is better. 

Here is little sick Tehilla. She is being given oxygen to stabilize her still and I can only nurse her in little increments, as her heart rate goes way too high. Her eye is red because she kept rubbing it with her IV in. 

Catheter Done

The catheter is finished and in about 20 minutes they will wake her up. The conclusion right now is complicated and unclear. For those with a medical background: her pulmonary arteries are very small. The pressure levels came out okay, but they need to check the numbers to make sure it is an accurate depiction and not influenced by the small pulmonary arteries. They are going to study the numbers and if they are good, they will consult with Dr. Erez, to see if he is comfortable going ahead with the Glenn. 

If the numbers show that the pressure isn't good, or Dr. Erez feels the pulmonary arteries are too small, we will have to wait for surgery, until she grows and her arteries grow, as well. If that is the case, because she clearly isn't doing well, there are measures (we don't know what they are yet) they will take to help in the interim. 

We have to wait 4-5 hours for the team to meet and make some decisions. Please please pray that the pressure is fine and Dr. Erez feels her pulmonary arteries are a good enough size, so we can progress to surgery. 

Catheter now

I took her in and stayed with Tehilla until the anesthesia kicked in. I'm in the waiting area with Ron and my mother. 

Because Tehilla's cough has turned so bad, they have already mentioned that they may keep us in the hospital longer. They decided it was imperative to go ahead with the catheter, because she clearly needs surgery and they need the information. They checked her blood test results and everything was normal. 

So, now we are just waiting.