Our nurse just came out with an update: Leah's central line and arterial line are now in, and anesthesia is still doing their part. The plastic surgery team is in the room with her but they haven't started their work.
Monday, October 21, 2013
Just before surgery...
One more picture of Leah, taken right before the nurses took her into the operating room...
In surgery
We arrived at 6:00 am at the hospital, and everything is fine so far. We changed her into a gown and played with her while a series of doctors and nurses explained to us what will happen. She seemed pretty interested in everything that was going on around her, and when she finally lost interest she fell asleep. David had to hand her over to the nurses because I would not have been able to do it...
They took her into surgery at 7:30, and at 8:00 am our nurse came out and said Leah was already asleep and her breathing tube was in, and they we going to start her central line but she wouldn't feel a thing.
Friday, October 18, 2013
Pre-Op Appointments
We are just back from a day at the hospital to go through the pre-op checklist with anesthesia. The hospital sent us a booklet a few weeks ago with instructions about what to feed Leah and when (and what not to feed her and when) on the day of surgery, and most of our appointments today were a reiteration of those instructions. We started in a small exam room where they took Leah's vitals, which were all good. Then we saw a surgical nurse who explained how the day would go: we will arrive at our appointment time (which we had not yet been assigned), park our car and enter the hospital in the surgical waiting area. A nurse will bring us to a small exam room where we will change her into a hospital gown and wait to speak with anesthesia again to review whether we had followed the pre-op instructions (apparently, if we have not, the surgery is cancelled, so it's a big deal). Our two surgeons will come into the room to review the procedures with us at that point. Our surgeons are Dr. Taylor, a pediatric plastic surgeon, and Dr. Heuer, a pediatric neurosurgeon.Then a nurse will take Leah from us, and they will give her general anesthesia through a mask. The nurse said that takes usually only a few seconds, and after she is asleep they will place her IV and finish surgical preparations.
The nurse said the surgeons had reserved the operating room for 4 hours, but she said that they always underestimate how long surgery will take because they only count the time they will need, rather than the pre-op and anesthesia time, so we are preparing for a bit more. A nurse will come to our waiting room every hour to provide us with updates, and when the surgery is over, our surgeons will come out to review the procedure with us again and let us know what to expect. Leah will go right to the pediatric intensive care unit, where she will stay for about 24 hours if all goes well. We will meet her there, and one of us will be able to stay in the PICU with her overnight (though they warned us that we shouldn't expect to get any sleep while there).
Because we have done a good deal of research, we know to prepare for substantial swelling, especially around Leah's eyes. We also know that the swelling will get worse over the next 48 hours, as excess fluid around her skull tries to drain. The surgeons will install a drain, but it won't be able to clear all the fluid, so her eyes will likely swell shut. That's going to be hard for her, because she won't understand why she can't see. We are preparing for that by taking a few of her softest stuffed animals and blankets (many of whom have been given to us by wonderful friends in the last days) and sleeping with them now so they will smell like us when she holds them in the hospital. I'm not sure how comforting that will be, given the amount of pain she is going to be in, but at this point we are willing to try whatever we can to make her feel more comfortable.
The nurses are hesitant to give us much information about what will happen after that first 24-48 hours because it depends so much on how the surgery goes and on how Leah responds to it. We expect to be in the main part of the hospital after the first 24 hours, though, and to stay there for an additional three to five days. Some of that is dependent on how quickly the swelling around her skull goes down, which will allow them to remove her drain, and some of it depends on whether or not she shows signs of infection and needs to be given antibiotics.
We also met with an anesthesiologist who wants to enter Leah into a clinical trial for FDA approval of IV Tylenol in babies younger than 6 months of age. She explained that usually babies are administered morphine when they indicate they are in pain after surgery, but in the clinical trial they would be administered Tylenol instead. I had to ask how they determine if babies are in pain at this age, and she explained their 10 point scale that assesses facial expression, vocalization, arm and leg movement, etc. She assured us that with or without the clinical trial, Leah would be given pain medication sufficient to alleviate any of her pain, so we opted to participate in the trial since it seems not to have any ill effects, and would only mean that she would possibly have less exposure to morphine.
Finally, we went to the lab to have Leah's blood drawn for type during the transfusions. We know she is A-, but the hospital obviously can't take our word for it, so they collect samples. They will use the same samples to do the genetic screening as well, so she only had one pin prick. Only one parent was allowed in the lab, and David volunteered, but I heard every scream from the waiting room, so I know she wasn't a big fan of the process.
We were then instructed to call the hospital between 3:30 pm and 6:00 pm to be assigned an arrival time, and to be instructed AGAIN about the feeding instructions. The nurse over the phone told us to arrive at 6:00 am on Monday, so we are going to take advantage of this weekend to get some extra rest.
The nurse said the surgeons had reserved the operating room for 4 hours, but she said that they always underestimate how long surgery will take because they only count the time they will need, rather than the pre-op and anesthesia time, so we are preparing for a bit more. A nurse will come to our waiting room every hour to provide us with updates, and when the surgery is over, our surgeons will come out to review the procedure with us again and let us know what to expect. Leah will go right to the pediatric intensive care unit, where she will stay for about 24 hours if all goes well. We will meet her there, and one of us will be able to stay in the PICU with her overnight (though they warned us that we shouldn't expect to get any sleep while there).
Because we have done a good deal of research, we know to prepare for substantial swelling, especially around Leah's eyes. We also know that the swelling will get worse over the next 48 hours, as excess fluid around her skull tries to drain. The surgeons will install a drain, but it won't be able to clear all the fluid, so her eyes will likely swell shut. That's going to be hard for her, because she won't understand why she can't see. We are preparing for that by taking a few of her softest stuffed animals and blankets (many of whom have been given to us by wonderful friends in the last days) and sleeping with them now so they will smell like us when she holds them in the hospital. I'm not sure how comforting that will be, given the amount of pain she is going to be in, but at this point we are willing to try whatever we can to make her feel more comfortable.
The nurses are hesitant to give us much information about what will happen after that first 24-48 hours because it depends so much on how the surgery goes and on how Leah responds to it. We expect to be in the main part of the hospital after the first 24 hours, though, and to stay there for an additional three to five days. Some of that is dependent on how quickly the swelling around her skull goes down, which will allow them to remove her drain, and some of it depends on whether or not she shows signs of infection and needs to be given antibiotics.
We also met with an anesthesiologist who wants to enter Leah into a clinical trial for FDA approval of IV Tylenol in babies younger than 6 months of age. She explained that usually babies are administered morphine when they indicate they are in pain after surgery, but in the clinical trial they would be administered Tylenol instead. I had to ask how they determine if babies are in pain at this age, and she explained their 10 point scale that assesses facial expression, vocalization, arm and leg movement, etc. She assured us that with or without the clinical trial, Leah would be given pain medication sufficient to alleviate any of her pain, so we opted to participate in the trial since it seems not to have any ill effects, and would only mean that she would possibly have less exposure to morphine.
Finally, we went to the lab to have Leah's blood drawn for type during the transfusions. We know she is A-, but the hospital obviously can't take our word for it, so they collect samples. They will use the same samples to do the genetic screening as well, so she only had one pin prick. Only one parent was allowed in the lab, and David volunteered, but I heard every scream from the waiting room, so I know she wasn't a big fan of the process.
We were then instructed to call the hospital between 3:30 pm and 6:00 pm to be assigned an arrival time, and to be instructed AGAIN about the feeding instructions. The nurse over the phone told us to arrive at 6:00 am on Monday, so we are going to take advantage of this weekend to get some extra rest.
Thursday, October 17, 2013
Opthalmology and Genetics
Leah had two pre-op appointments today at CHOP. Since we are driving quite a distance to the hospital, they have been very understanding about bunching appointments together for us. We arrived at the hospital at 12:30 and went right to opthalmology. This appointment was the most important of the day because kids with coronal craniosynostosis often have related eye issues, either because of the facial asymetry that it causes or because of increased pressure on the optic nerve. The doctor spent just few minutes checking the focus of her pupils (he used his iPhone to play a video through a PBS app to keep her attention) then dilated her pupils to check her optic nerve. Leah didn't really love the process, but the doctor said at this point everything looks fine, and he sent us on our way with directions to come back six weeks after the surgery to check her pressure.
We then went to the Plastic Surgery department, where we usually go to see Dr. Taylor. Leah discovered a Geronimo Stilton book in the waiting room that struck her fancy:
This appointment was quick as well, and the geneticist asked us several questions about our family history. Since no one in either of our families has had craniosynostosis, or any related craniofacial, hand or foot abnormalities, she also said that everything looks fine. She explained to us the causes of craniosynostosis, but we already have a more advanced understanding of the defect than she provided so that wasn't terribly helpful. I noticed she spent a lot of time looking at Leah's hands, and since Leah does have notably long fingers, that made me nervous. But at the end, she said she didn't see anything for concern. Since we will have blood drawn at Leah's pre-op appointment with anesthesiology tomorrow, she ordered specific genetic screening of the fourth and seventh chromosome on her blood just to make sure Leah doesn't have any cranio-related abnormalities. The results will take about a month to get to us, but we anticipate that they will show that everything is normal, which is very good news.
Sunday, October 6, 2013
Two Weeks to go
Two weeks until the surgery. Leah is trying on hats to prepare for that distractor...
Thursday, August 15, 2013
CT Scan
We took Leah to CHOP yesterday for a CT scan. We expected
the appointment to take several hours but because Leah fell asleep in the
waiting room, they took us right in, put her in the scanner and turned it on,
and she was done in about 20 minutes. The scan confirms the unilateral fusion
on Leah’s right side. It also shows that there are several “dimples” at the
back of Leah’s skull, which are caused by increased intracranial pressure (ICP).
Dr. Taylor said that these mean her brain is trying to grow but the skull isn’t
expanding to allow for that growth. That image makes us thankful that we chose
to have the surgery performed earlier. Because we see Leah every day, we don’t
notice the asymmetry of her face, and so are surprised at how asymmetrical her
facial structure is on the scan. The scan also shows that her soft spot is
pulled far to the left, and is also asymetrical.
While we were waiting to see Dr. Taylor that afternoon, I saw a
baby boy in the waiting room as he was leaving who looked like he had recent
surgery. His head was shaved, and he had a z-shaped scar from ear to ear across
the top of his skull. He also had what looked like a very long tube implanted
in his skull, on the inside of the skin. Before I saw this child, I assumed
that this distraction surgery used springs, so I was surprised to see such a
visible device. When we met with Dr. Taylor, I asked if he could show me a
picture of the distractor. He pulled up a CT scan of a child who had just had
the surgery. The distractor wasn't at all what I had imagined: it was the size
of a pencil and it was screwed into the bone on either side of a cut that was
made in the skull along the suture line. A second screw sticks out of the skin
at the back of the head.
When Leah has the distractor installed, we will attach a kind of
Allen wrench to that screw and turn it two times per day, which will spread the
two parts of the bone 1 mm apart each day. The bones need to be separated by
20-30 mm in all, so we will turn the screw for about three or four weeks, then
will return to have the external screw taken out. The rest of the distractor (the
parts that are screwed to her skull) will stay in for two more months, to give
the new bone that is formed time to harden. A second surgery will be done in
late January to remove the entire device.
Had we seen that baby while we were choosing the type of surgery, we may
not have chosen the distraction osteogenesis because it seems quite drastic,
and frankly terrible. On the other hand, after seeing the CT scan, we may not
have been comfortable with waiting past October 21 to have the surgery.
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