This update is long overdue. We've had a phenomenal few months since my last post. Lukasz is making drastic strides everyday and the differences we see in him from week to week is crazy. He's actually running all over the house! He plays with intricate toddler and preschool toys, pays more active attention to his siblings, engages in their antics (to their absolute thrill), mimics more and more activities and started saying "uh-oh". We are especially happy about that. The speech pathologist is excited, too. She says it means he is in the sound mimic stage and will likely start taking off with more words soon. Just yesterday he mimicked "e-i-e-i-o" when we sang "Old McDonald".
We hope she is right but we admit he has no problem making his wants and needs known LOUD and CLEAR. He signs and if he doesn't know the sign, takes a hand and drags the adult in the direction of the object of his desire. And now that his can communicate we have learned he is very particular in his eating. He fusses in a way that we open three or four kinds of baby food (or other soft food items) and then directs which he wants first with pointing and screaming (working on that), takes a bite or two, then directs to the next few bites he wants, and so on. He can also feed himself now which is great. Although, the little stinker is sometimes just in the mood to be fed.
Medical Stuff
Lukasz had a tube put in his ear in September. He was "papoosed" because every Dr we saw recommended avoiding anesthesia except for major surgery. We couldn't let his hearing continue to be impaired by the effects of cleft palate on the muscles that control the Eustachian tube (a cleft permanently impairs the function to prevent fluid build up in the inner ear resulting in repeated ear infections). The procedure, from the time they took him from my arms to bringing him back to me, was less than 10 minutes. His hearing was dramatically improved and the Dr told us he suctioned massive old mucous out and expected us to see a lot more drainage. He was right. We even went back because he had drainage past the stated number of days and the Dr said it was still all the nasty old stuff that had built up. It's all better now.We got the CT scan report (images in last post) and saw Dr Jeffrey Marsh in St. Louis for his reconstruction opinions which was basically the opposite of Dr Fearon's. Dr Marsh recommends jaw surgery to open Lukasz' airway and relieve his sleep obstruction/apnea IF a tonsilectomy doesn't resolve it. Otherwise, he'd wait until 3 or 4 years old to do the upper half of his head. Dr. Fearon recommends doing head now, jaw at 3 or 4 years old. So we have a lot to think about with two very respected Cranio surgeons recommending complete opposite surgical philosophies.
First Surgery
Because Dr Marsh is more conservative and Lukasz is doing so well, we decided to at least see if a tonsillectomy would help the sleep issues. Plus, Dr. Marsh wanted an endoscopy (a look at Lukasz' airway) before he did surgery because if Lukasz' airway had other anomalies affecting his sleep oxygen levels, Dr Marsh would not do the jaw until 3 or 4 yrs because he doesn't like to do surgery that provides no benefit.We saw Dr. Digoy, an ENT at OU Children's Hospital. He is an amazing, doctor. Instructed his surgery scheduler to over book him so Lukasz could have his surgery before the end of the year (Dec. 27) so we could take advantage of already meeting our deductible.
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| Walking into surgery. Note Lukasz' not so happy face compared to my optimistic smile. |
Turns out that Lukasz' adenoids were causing 100% blockage, so they came out, too. Also, they found a condition caused by small jaw that during sleep collapses the esophagus on the voice box causing blockage. Dr. Digoy said that in 3 mos we will repeat the sleep study and if there is still a problem we can try to remove some of the tissue around the voice box. He really wants to prevent jaw surgery because of the potential complication of the jaw becoming locked. Something we had never heard of!!! And we totally agree with avoiding major surgery when Lukasz is doing so well intellectually and a locked jaw would really stink.
Despite the surgery going very well, Lukasz was pretty hysterical and clingy after the surgery. I stayed with him and held him, hoping he'd go to sleep sometime. He didn't sleep until 10:00 pm when he just collapsed. Then his O2 stats dropped and stayed down. We had to put him on oxygen but every time the mask went near him he'd wake up screaming. Finally, the wonderful young nurse assigned to us thought of a "blow-by"--an open 1" diameter tube blowing O2 softly at his face about six inches away. She wrapped the end of it in several washcloths to weight it and allow for wedging into the crib rails to hold it in place. Worked like a charm but Lukasz moves all over in his sleep so I had to stay up and move it around whenever his O2 dropped. Exhausted mommy!
The worse news was that the Dr. on call that night was totally worried about Lukasz and adamant that we would stay other night. We did.
Even though we had to stay an extra night, Lukasz made the most of the extra day. He dragged me out of the room by the finger to walk the halls on our floor over and over for TWO hours! He made friends with everyone, trying to get every adult we passed to take his opposite hand and walk with us (his favorite thing--walking between 2 grownups and their ring fingers). When he was successful we walked and he laughed and laughed. When the adult couldn't because they were working or had their own child in a room, his threw himself on the floor in a and cried getting all kinds of sympathy and regret from the adult. New behavior for him but I think it's age appropriate. Whether they walked or not everyone made friends with him. The nurses loved him.
The second night went much better. He only needed the O2 once. And his levels stayed above 94 most of the night. His sleep study was much worse than that. The nurse woke him up at 5:15 am doing vitals so we were up walking the halls and cafeteria for 2 hours again. Lukasz definitely enjoys attention and having grown-ups fawn over him. And his crooked smile is pretty good at getting a smile out of people who have a lot on their minds.
We were home by 9:00am. And we have seen such a change already. He seems so much more alert after two good nights of sleep and his sleeping is much quieter. The real test is if he starts really growing and gaining weight which was the real problem with the sleep obstruction. And the threat to brain development.
First Christmas!
Last but not least we had a great first Christmas with Lukasz. There was a threat of being snowed in and an ice storm on Christmas Day so we went to my parents' house Christmas Eve evening. We had planned to see Matt's parents and his mom's "Polish" themed Christmas on Christmas Eve as well but his mom was sick and didn't want Lukasz to get sick before his surgery. Christmas Day was freezing temperatures and icey roads so we were glad we at least saw my parents.
The kids loved all their gifts and helping Lukasz enjoy his first Christmas in a home with a family.
All in all, it's been a great two months.
