Isaiah 7.17 : Updates, etc.

 The blog is back,  and you know what that means, another surgery.  I rarely update this anymore as the day to day is pretty much the same and very busy with my work and 4 kids.  Rachel doesn't like to write here but I still like to do this from time to time to update people who've been following along with Isaiah's story we may not be facebook friends with, etc.   The whole crew squinting in the sun    First a little game of catch-up. Since the midface 4 years ago Isaiah's been doing pretty good.  He's been breathing much better overall, even had a sleep study with no apneas! We still have ups and downs, but most issues have been relatively minor and not surgical.   One of the bigger things we've been dealing with behavior issues mostly as of late.  Some of it is the autism and some of it is related to the scarring he has in his frontal lobe from his first cranio surgery at 7 weeks old.  We've been on a carousel of differ...

Pretty good day all things considered.  We ate some of our first solids, and he's been steadily drinking milk from a hair dye bottle.  He won't do pediasure in the bottles yet so we've still kept the feeding tube in yet to do meds and supplemental feedings of pediasure.   Its getting better but we need him to east more on his own through his mouth. The feeding tube is not something we were prepared for dealing with, but its making the pain meds way easier to do right now since he usually gags and throws up from the sweetness of the children's motrin/tylenols.  That should hopefully make the trip home a little easier tomorrow. He likes to hold the front bar when sleeping He has been sleeping a ton as I'm sure his body is jsut beat down trying to recover, but really doesn't seem to be in much pain at all and his swelling almost seems negligible compared to the Cranial Vault Reconstructions (CVR).  He is having difficulty somewhat getting comfy laying in be...

Look at that cherubic face! The rest of yesterday went pretty well.  We moved out of the PICU in early afternoon and have been on the regular floor since then.  He's been up and walking more and healing pretty well.  Pain has been managed well too he just wants the RED off his head already.  All in all he's recovering very well and we'll probably be discharged today. We still have some challenges though.  Feeding is still an issue.  He still has the ng tube in and oral feeding is not going the greatest.  He can do juice and water somewhat but needs to be reclined not to drool.  The feeding tube freaks Rachel out a bit, but we need to keep it in until he can take enough by mouth regularly and not throw up. The other issue we have is that his stools are so loose every time he passes gas he has an accident.  We've gotten better this morning about going to the bathroom, but we've had 4 such accidents the last day and it doesn't bode well ...

Another night in the PICU, hopefully moving to the floor later this morning if all goes well.  He's got a feeding tube in his nose that they've been doing med and feedings through since the IV failed yesterday afternoon.  His hand is still a bit swollen, but not nearly as bad as before.  We've gotten up to use the bathroom a couple times since they removed the foley.  As Olaf says 'All good things, all good things'.  Rachel stayed the night again as I've been close to losing it emotionally the last day or so.  I felt like there was too much movement in his midface when he was scrunching his nose with the nasal trumpets in.  He would scrunch and his whole midface would move like 3/4 of an inch and make this crunching / clicking noise.  I first thought it was the sound of his bones hitting, but realized later it was the dental splint.  It just gave me the shivers and I'd start flapping.  I just don't do well with blood and all this stuff...

Little man is in a ton of pain right now so prayers are still very much  appreciated.   As he's more and more aware of everything around him and on him and his cries of pain and frustration are getting louder and more frequent. It kills me to see him like this and I wish I could take it away. He grunted in anger at Dr Fearon when he saw him before lunch when he showed us how to turn the screws on the RED. Apparently he's done really well since he didn't need a transfusion and around me 75% of kiddos getting this surgery need one. He's already gotten up and walked about a quarter of the PICU and we've started feeds through a feeding tube. Right after they took his arterial line out his other iv started failing and his left arm and hand swelled up and turned purple. They had to remove the iv and his hand is back to its normal color but we're still waiting for the fluid in his arms to dissipate but it's definitely getting better slowly. Everything went so...

Last night I went back to the hotel with Aunt Rebecca and Elena while Rachel stayed in the PICU with Isaiah. We're trying to rotate so one of us gets a good nights sleep at least.  He was awake more overnight.  Apparently Rachel said there was one time he woke up long enough to say 'My head hurts' and went promptly back to sleep.  Mostly he was up briefly to moan or whimper since I can't even imagine the pain he's probably in.  There was a steady stream of Minion movies, Wall-E, and other disney flicks on the tv all night long. The orange things in his nose are the nasal trumpet  He also apparently coughed out a pretty big blood clot about the size of a golf ball that required a good amount of clean up.  Not fun sounding, but its good he was able to cough it out since its not something they probably could have suctioned out.  After that his airways were more open and his blood oxygen levels stayed much higher.  He's been on some good pain ...

We'll be updating this post as the day goes on so check back every hr or so.  We're at Medical City Hospital in Dallas, TX. Main Craniofacial / Plastic Surgeon: Dr. Jeffrey Fearon ENT:  Dr. Brian Peters Our last look at this guys little face like this :( 6:00 - at the hospital waiting to be taken to surgery prep 7:00 - most of the doctors have been by to visit quick.  Isaiah got his 'goofy juice' to help him relax and with the separation.  We've got some funny video of him trying to play angry birds go while 'under the influence'  7:40 - They took him back to the surgery room 8:00 - Dr Peters came out to say his ear tube removal went great - He only had  the typical 10% holes in his ear drums.  We'll follow up with ENT in Atlanta and if we need new tubes they'll do it here when he gets the RED taken off.  Basically this was a piggyback procedure since he was already going to be under and its such a quick surgery.  ...

Hanging out by the fountain in the lobby The trip out here was pretty uneventful.  Elena's not as good of traveler yet as Isaiah and Christopher were at this age, but we'll get her there! Isaiah and Dr. Chan Anyways today was the marathon of pre-operative appointments.  We got to eat our Texas shaped waffles for breakfast this morning and had to be at the hospital by 8:45.  Isaiah got to be a supermodel and get his pictures taken by Mr. Max.  I wasn't in there to see if he did the Blue Steel Zoolander look, but it is his go to.  Then we got to see the new Anthropologist Dr. Chan who took all sorts of measurements of Isaiah's face and skull.  He was pretty happy yet in there since there were Minion stickers everywhere. After that it started going a bit downhill.  By this point he was already getting tired of being traipsed around and wanted to go back to the hotel, but we had to do blood draws/labs for the surgery.  He's a notoriously h...

Isaiah, Christopher, and me at the Train Show last weekend. It's always bittersweet to resurrect this blog.  Usually it means Isaiah has a surgery scheduled since this is one of the easiest ways for us to share with everyone that may not be linked up with Rachel or my social media accounts.  Well here I am updating this again as we prepare for the surgery we've been simultaneously dreading and excited for, the RED surgery.  It's one of the most involved and serious surgeries Isaiah will undergo, but its also one that will have the most drastic change in his appearance and will make him look a bit more like a typical child.   For those of you new to Isaiah's story and Apert Syndrome here's a link to Isaiah's surgeon in Texas' website  .  Isaiah's next surgery is the midface advancement (LeFort III) using the RED (Rigid External Distraction) technique, or simply "the RED" as most of the families with similar syndromes call the surgery and w...

Well that was a fun evening. We knew it would be rough, but at least it wasn't as bad as we had steeled ourselves up for.  Basically he wasn't keeping much down and he went back on the IV for fluids in the middle of the night.  Luckily the peak of his swelling seems to have been overnight when his eyes are supposed to be closed so we pretty blessed to avoid much of the panic and stress that goes with not seeing.  There was a couple of times when he was up vomiting that he would ask us to open his eyes, but he was sleepy enough that once we cleaned him back up and put his music on he'd go right back to sleep.  I went back to the hotel around 6:30 this morning to shower and grab breakfast and a few other things we needed.  Isaiah woke up soon after I got back and immediately wanted a tour around the unit again to go see Alvin and the Chipmunks, Thomas, and Mickey.  We tried to get him to walk around a bunch to help get things moving in his body.  It's ...

Last update 8pm 9:00AM   We got back into the PICU about an hr ago after getting one last night of good sleep since minimally one of us needs to be with him overnight when he's moved to the normal peds floor.  As you can see by the picture his swelling is up some, but he's still able to see somewhat.  Mostly out of his left eye.  The swelling will probably peak sometime tonight, but so far it doesn't seem as bad as we remember.  Famous last words, right?  Right now he's fairly lucid, but still very very tired.  He's been talking and answering questions.  He asked for his new Thomas pillow pet his teacher Miss Brittany got him on tuesday and we're currently watching the original Love Bug movie which he absolutely loves.  His A-line (arterial line) was taken out at shift change this morning and we're starting clear fluids and should be moving to the floor as soon as Dr. F swings by to write up the orders if all looks good to him and so long...

Sorry this might get a bit rambly.  It's been a long day and our stress levels have been so high lately I'm a bit punchy even though its only 8pm here. We made it through all the pre-op appointments today and even had a little fun.  We started off the morning at Children's Craniofacial Center's offices which are right here near the hospital in Dallas.  We visited for a little while with Char, Jill, and Annie in the office and found out that Jill's family has history in my hometown of Racine, WI and that she's from the Milwaukee area originally like Mom and Dad.  Isaiah got another stuffed animal, this time a kangaroo from Kohl's Care.  I'm pretty sure that's got to put him over the 100 mark on stuffed animals, or at least it feels like it. His first appointment was at 11 with imaging and he did pretty well sitting for his 'before' pictures.  They document his head in general, but mainly his forehead, and they took a number of pictures o...

Just time for a quick update.  We've made it to our home away from home, the Residence Inn Park Central.  We've probably spent more nights here in the last 5 years than any other hotel.  The drive was mostly uneventful, which is good.  I worked most of the day yesterday and we left Atlanta last night and stayed over at my cousin Walter's house in Tuscaloosa, finally getting to meet his fiance Jess.  It was much too short of a visit, but we're grateful for their hospitality.  We drove the rest of the way to Dallas today and are slowly getting settled into the hotel for the night.  Isaiah is all tucked in and had his story read already so I think that's my cue to get off the lap top and get some much needed sleep myself, while we still can.

Sorry about the lack of posts until this morning about this, but I don't like writing about our travels on our blog until we're close to being home again so we're not advertising to the world wide web our home is empty and waiting to be robbed. Am I paranoid? Probably, but I feel better anyways. Anyways, if you didn't know, we're on the return leg of a whirlwind trip to Dallas, TX for Isaiah's annual check up with Dr. Fearon, the guy that gave him his fingers, toes, and his latest cranial vault. We did all we could in Atlanta first (sleep study, MRI) and really only had a half hr appointment with the good doctor for him to look everything over and physically see Isaiah and feel his head, but the news we got in that half hour was great! Isaiah's MRI looked good for lack of Intra Cranial Pressure (ICP) and his sleep study which is looking for sleep apnea, while slightly elevated for a normal child, was not too bad for a kiddo with Apert. We need another ...

Its officially officially, we received a letter from Medical City Dallas yesterday stating we no longer owe anything on Isaiah's last surgery. I honestly have to say this is mainly due to Rachel's tenacity. It's been a four month ordeal that finally seems to have some closure. After months of calling insurance, various departments in the hospital, writing appeals letters, letters to the CEO, CFO, CMO and various board members at Medical City and sending them an email blast its finally done. This was Rachel's full time job while juggling taking care of the little guy and I think she just ended up making more this year than I did. I know how much she hates making those calls and how frustrating it can get, but we look at it as her 'making' money for the family since its less money that actually goes out of our pockets. So far she's made nearly $70K for us this year between the Hospital and a bunch of other smaller bills she's gotten written off or r...

So things are progressing. His swelling is starting to go down, but his eyes are still swollen shut. Dr. Fearon came in this morning and thinks we could get out of the hospital tonight. He's coming back after his afternoon surgery to check in and we'll go from there. He even said if we get out of the hospital tonight we could get back on the road tomorrow morning. Isaiah's much more active after a pretty uneventful night. We brought along a little tikes keyboard my cousin angie bought him last time we were here and he's been blindly playing it in the crib. Even though we couldn't see the little sparkle in his eyes, you could tell it perked him up and made him happy. He's been pretty chill for the most part. He hasn't thrown a huge fuss yet, but he has had his crabby moments, mostly when you try to move him. His breathing has been great the whole time and the respiratory therapists haven't heard a wheeze since the night of the surgery. He has...

Tonight we had a visitor local to the Dallas area that has been following along with Isaiah's journey via the blog. We just wanted to mention a quick word of thanks to June and Mike Graham for the wonderful basket of Great Harvest bread and goodies and more importantly for their thoughts and prayers around Isaiah's surgery and healing. June stopped by the hospital tonight and we were very happy to have met her. She is, from what I understand, the mother in law of one of Rachel's father's employees at the Opera, Eric Mitchko. We're just constantly amazed at the number of people around the world thinking of us and praying for us. Just off the top of my head we know of people across the US, Canada, England, and even New Zealand. We are really in awe of the awesome power of prayer and how lucky we truly have been throughout this whole process.

So we finally made it to the regular peds floor around 3pm today. He's still sleeping a lot and he had a fever that peaked at 104 but is back under control to a more acceptable 100.3. We knew he would have a low grade fever for a day or so as the anesthesia worked its way out of his lungs. He's had a couple of bottles of juice now and some applesauce as well as some cereal puffs, but his appetite is nowhere near normal yet. If all goes well we should be discharged tomorrow and back on the road to Atlanta saturday morning. We're thinking about driving straight through if he can handle it to get him back in his own bed sooner than later. I'm going to be staying in the hospital tonight with him to give Rachel another night of rest after I came to the realization that last night was her first night away from Isaiah since he came home from the NICU (and therefore her first full night of uninterrupted sleep in almost a year and a half if you count the latter half of th...

Dr Sacco just made his rounds and thought Isaiah looks to be ahead of schedule recovery wise. So far he's been mildly crabby, but not horrible yet. His A-Line IV is out, no more Foley bag, no more Blood Pressure checks every hr and his labs show that he probably won't need any extra blood. We've got him to drink about 8 oz of apple juice and being the independent little guy he is he HAS to hold his own bottle which is a little interesting since he still has a board on his right arm so he doesn't pull his fluid IV out, but he manages. We just have to correct it a bit so he gets the nipple on the sippy cup in the right place since he can't see anything since his eyes are swollen shut. The swelling isn't nearly as bad as I had imagined, but I tend to be a little overly imaginative sometimes. It is definitely significant though and today will be its height. He's been sleeping most of the time from what we can gather (since its hard to tell since he can...

The doctors just came out to the waiting room. All went well. Dr Fearon says 'he looks really different' which is a bit scary, but we'll find out in about 20 mins. Everything went good, very little neurosurgery needed, but they said we timed things right for the surgery as lots of little defects were forming in the bone. More coming to this post as we know