Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Friday, February 27, 2015

CT

Baruch Hashem, Everything went well. Avigayil had a little trouble breathing when they put her under but she did pretty well after that. In fact she was the only baby who came out smiling.

We are now waiting for the results which we hope to have in a couple of days. After that we are hoping that they will let us know when they are scheduling the surgery.


Sunday, February 22, 2015

Take Two

Avigayil's CT was rescheduled for Wednesday at 2:30. Her Pulminologist came by today to see her and everything is all set. He assured me that they will use as light an anesthesia as possible for as short a time as possible and that he will try to be present for the procedure. We are davening now that there will be no complications and that she will tolerate the anesthesia. Please keep her in your thoughts and prayers on Wednesday.

Wednesday, February 18, 2015

False Start

Well, we got all prepared. Avigayil fasted all day and at 2:15 we went in to check in at the hospital. That is when we discovered that someone messed up. There was a scheduling error and the doctor and anesthesiologist who where meant to do the procedure where not in the hospital that day. So we are now waiting for a new appointment. They have promised me that we are first in line and hopefully it will be done next week.

Sunday, February 15, 2015

Good News!

Avigayil has 2 teeth!! It is so nice to do a normal baby thing. It all the craziness of life these days it's easy to forget the normal things. Even though it has kept us up the last several nights we are thrilled to be doing something normal.


On a separate note, Avigayil has her CT tomorrow. It will be done under general anesthesia (although a lighter general anesthesia then her surgery, there is still a potential risk due to her breathing issues) so please keep her in your thoughts and prayers tomorrow.

Wednesday, February 4, 2015

Pre-op

We had day hospital today. It was a rough day for Avigayil (every time she turned around someone was taking blood or sticking a tube in her or holding her down for some test), but we got through it. The good news is that she is doing well and aside from her anemia she is ready for surgery. The bad news is they decided to push off the surgery until after they can do a CT. She is scheduled to have the CT on February 16th. It will also be under general anesthesia. If she is tolerating the anesthesia well they may do a broncoscopy at the same time.  After that she will have the surgery, but we don't know yet when that will be.

The hard part now is keeping her healthy until the CT and surgery. We will have to be even more vigilant then we already are. The doctor called it giving her the "plastic bubble treatment". This is not easy with 4 other kids, not to mention 3 grandparents coming within the next week. IY"H (please G-d) we will be able to keep her healthy long enough to get through the next few weeks and everything will be behind us.

Sunday, February 1, 2015

Surgery

Avigayil needs to have surgery. She has to have a g-tube put in. A g-tube is a feeding tube placed directly into her stomach. For most children this is a small simple procedure. That will not be the case for Avigayil.

Her GI wanted to do a more complicated surgery at the same time called a fundoplacation. This would in effect stop her from vomiting - forever. Usually this is not done on children who are "neurologically intact" because they grow out of the reflux. The question in Avigayil's case was "Can we wait that long?" Her vomiting is currently on of the things that is keeping her from gaining weight. Since she is not gaining weight, her lungs can't grow and heal. Since her lungs aren't healing more energy is going into breathing and she can't gain weight. You get the idea.

The problem is that the surgery is permanent and irreversible. Also, not all the doctors agree that it will help her.

To further complicate matters, Avigayil is not a candidate for sedation. This means that no matter what we decide It will be a big surgery. She will need general anesthesia and intubation. What is usually a small procedure is now a big deal.

So we did an upper GI study to help us decide what to do. B"H it came back fine and now she will only have the smaller procedure. However, it will not be simple. We are going for tests on Wednesday and if everything checks out hope to do the surgery on Monday.

While she is under anesthesia, if she responds well, they hope to do a few other small procedures as well.

We really don't know what to expect. A lot will depend on how she reacts to the anesthesia. In theory, it could still be outpatient, however they told us that they will reserve her an ICU bed just in case. Once intubated she may have a very hard time coming off the ventilator. Please keep her in your thoughts and prayers.