We have been back for a week and a half. In some ways it feels we have been home forever and in others, like we just arrived yesterday. The boys (Iain and Learned) started Kindergarten, we visited the surgeon just days after getting home, Millie and Padraig run me ragged making sure they are not too rough with Lukasz, Lukasz likes to be fed round the clock like a newborn, we took Lukasz for his first visit to Science Museum Oklahoma and he visited our family physician yesterday for the first time.
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| Iain teaching Lukasz who is watching intently. |
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| Copying his big brother. |
Dr. Jeffrey Fearon, Craniofacial Surgeon, Dallas, TX
On August 2, Matt and I drove to Dallas for the consultation appointment with Dr. Fearon that I had set up in April. Unlike any doctor Matt and I have ever come across in our experience as patients or attorneys, Dr. Fearon had provide us with written opinions of Lukasz's medical records via email every time we got new and/or updated records from Poland. We appreciated his candor and the phenomenal recommendations of other parents and various craniofacial organizations.
Cranial Pressure
Dr. Fearon told us that he has found in the past that with the children he treats who were adopted, surgical complication rates were higher than his normal complication rates. However, once he started recommending that that adopted children spend a minimum of three months adjusting to their new home, they did much better due to the improved nutrition, development and immune system. So, told us that he would prefer to wait the three months before performing the craniotomy to correct Lukasz's fused cranial plates or any other surgeries that may be necessary. He also believes in doing as many necessary procedures as possible at the same time so children do not have to go under anesthesia multiple times.
This makes sense as far as the nutrition/immune system but we were very concerned about intracranial pressure. Dr. Fearon assured us that Lukasz's open cranial area did not demonstrate a level of pressure to be concerned about--that it was much better than he thought from the CT scan we sent from Poland. Matt asked what to watch for and he told us for the derma (sp?) of the brain protruding from the soft spot BUT he said, "It's not going to happen. It would have happened already if cranial pressure was going to be an issue." Very reassuring.
Apnea: Lukasz sounds like a freight train at night.
Dr. Fearon was much more concerned with the issue of is sleep oxygen levels than the intracranial pressure. He recommended that we have Lukasz undergo a sleep study as soon as possible because if he has low oxygen levels he will need a tracheostomy. Of course, I knew this was a possibility as many children with Lukasz' various craniofacail issues require a trach, but both Matt and I took deep breaths at that. Dr. Fearon went on with very rational reasoning that, "Although no one wants their child to have a trach, if he is not getting enough oxygen, you WANT him to have one--it's too important for brain development to not do what you need to do to make sure the brain gets the required levels oxygen." Rational, but we want to avoid it if we can.
He explain that because Lukasz' is missing one side of his jaw and his throat is placed differently due to the lack of development of the right side of his face, the best position for him to sleep is on his stomach. If he sleeps on his back or side, his jaw and tongue fall back towards his throat obstructing his breathing. Dr. Fearon suggested, the "lazy man's cpap" of tying a tennis ball to the inside of the back of a footed sleeper with a rubber band, then every time Lukasz turns on to his back in his sleep, he will naturally turn back to his stomach. We will be trying this to get him oxygen at night without the trach and to "cheat" on the sleep study.
If the sleep study results are bad enough, he will go ahead with surgery earlier than 3 months to place the trach and do the craniotomy (and anything else).
Another thing we like about Dr. Fearon is that he believes that if you can get good, more affordable services close to home, you should do it rather than travel to Dallas. Of course, there are no craniofacial surgeons of his caliber in Oklahoma but we will be getting Lukasz' sleep study, ear, nose and throat evaluation, audiological and opthamological examinations, etc., here.
The Eye
A lot of friends and family have asked about whether a prosthetic eye could be placed in Lukasz' right orbit. He does have a functioning tear duct.
Dr. Fearon's opinion is that Lukasz's orbit deficiency is too great to make an insertable prosthetic possible. We may be able to do an external one. I am very unfamiliar with the types of prosthetic eyes so I am just relating what I remember. He suggested that we may have to consider a patch but that he would refer us to a brilliant prostheticist (?) when Lukasz is older.
Personally, his lack of an eye is really low on my priority list. He sees with his "good" eye and the other is just a cosmetic issue. As far as the eye patch, he can were one if he wants to; I really have no desire to protect society at large from the appearance of his missing eye. And I hope my indifference to the opinions of strangers teaches him to feel the same. I have confidence that the people worth knowing in the world will be able to get used to and accept the way he looks.
The Cleft Lip/Palate
Dr. Fearon thought Lukasz' corrected cleft lip looked really good. He also thought the corrected palate looked OK. We were concerned as to wether the palate had been fully corrected because Lukasz tends to have food come out of his nose and not like normal toddlers that just snort it sometimes. Dr. Fearon says this may be because when there is some paralysis in one side of the face (like Lukasz), the muscles are sometimes weakened.
The Jaw
Finally, Dr. Fearon said that to correct the missing lower jaw, one of Lukasz' ribs would be harvested and placed as a "spacer" (his term). However, he does not typically do this surgery until the child is 6 or 7 as it is quite invasive to harvest a rib. This would also allow for the removal of the trach at that time if he has to have one.
I completely forgot to ask Dr. Fearon about Lukasz' upper jaw. The clefting of his lip and palate were so extensive that his upper jaw is separated. When they were corrected, the surgeon did not correct the upper jaw so Lukasz has a large separation between the right one-third and the left two-thirds of his jaw. But I am sure we will have plenty of opportunity to ask him about this.
The Cleft Lip/Palate
Dr. Fearon thought Lukasz' corrected cleft lip looked really good. He also thought the corrected palate looked OK. We were concerned as to wether the palate had been fully corrected because Lukasz tends to have food come out of his nose and not like normal toddlers that just snort it sometimes. Dr. Fearon says this may be because when there is some paralysis in one side of the face (like Lukasz), the muscles are sometimes weakened.
The Jaw
Finally, Dr. Fearon said that to correct the missing lower jaw, one of Lukasz' ribs would be harvested and placed as a "spacer" (his term). However, he does not typically do this surgery until the child is 6 or 7 as it is quite invasive to harvest a rib. This would also allow for the removal of the trach at that time if he has to have one.
I completely forgot to ask Dr. Fearon about Lukasz' upper jaw. The clefting of his lip and palate were so extensive that his upper jaw is separated. When they were corrected, the surgeon did not correct the upper jaw so Lukasz has a large separation between the right one-third and the left two-thirds of his jaw. But I am sure we will have plenty of opportunity to ask him about this.
Dr. Naidu: Our Amazing Family Physician
On Monday, August 6, Lukasz saw our family doctor for the first time. Dr. Naidu treats all of us and there is no other doctor we have ever had as much faith in. Lukasz gained 2 lbs since our Visa health exam just under 2 weeks ago. Great news that the constant feeding is paying off. He's clearly making up for lost time. Dr. Naidu still wants him to gain 4 to 6 lbs by the time we see him again in one month. Lukasz is 31 inches tall and head circumference 44.5 cm. So, his weight is about the 5%, his height is 10% and his head is about 2% for his age. Hoping that everything increases and becomes more proportional.
Dr. Naidu told us he would call in the referral for the sleep study immediately and once we had the results he would get a referral for a ENT. However, I just got a call from the Mercy schedulers with appointments for a pediatric endocrinologist (I didn't know we were even doing that!), pediatric ENT, and information that the sleep study people would be calling me directly, as well as SoonerStart (Oklahoma's early intervention program). So we are on our way!
Anyone in the Edmond/Oklahoma City area looking for a great doctor can find more about Dr. Naidu here: http://doctors.mercy.net/directory/profile.asp?dbase=main&setsize=6&display=Y&integrated=false&last=Naidu&specialty=13&pict_id=2011484
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| Lukasz' first trip to Science Museum Oklahoma! |
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| I didn't realize the similarity between the kids' pose and the mural until just now. |
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| The tops were a big hit for Luksaz. He couldn't spin them but he tried and he loved the idea. |
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