Please Pray

We have so many little friends dealing with very serious things and they all need prayers. It seems a bit selfish to be asking for prayers for ourselves too.

Jack has a mildly elevated temperature today and has been pretty irritable. There are no other definitive symptoms right now. The irritation can easily be explained by the lack of deep sleep for the past ten days as well as recovering from major surgery.

The mildly elevated temperature could be just because he had surgery but 10 days out we should be past that period.

As selfish as I feel asking for your prayers, I know that our God is big enough to meet the serious needs of our friends as well as deal with the anxiety we have going here.

I'm praying for guidance, wisdom, and peace.

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Overdue Update

We've been oh so tired since we've been home. Jack has had difficulty sleeping since we got home. Some of it has probably been the usual post-anesthesia sleeping difficulty that we've experienced before and gone a blessed two almost three years without. Also, Jack is not breathing well without his Bipap. We've tried having him sleep on an elevated surface and tried making him sleep on his stomach. None of those things have made much of a difference. The only thing that has made much of a difference is putting him on humidified oxygen. He still obstructs. He still wakes up from the obstruction. He still isn't getting deep sleep. However, his oxygen saturation isn't dropping as low. We have 10 more days before we can begin using the Bipap again. We're over halfway there. God has brought us this far. We have to rely on him to keep us going.

Jack's swelling has reduced dramatically. Overall he seems to feel pretty good. He fatigues a lot more easily than usual and from time to time he complains that his head hurts. The fatigue may be because he's recovering from major surgery. It may be his lack of deep sleep. It might be because he still building up his blood count from the loss during surgery. He's still pretty pale and we're giving him iron to help with that. His head hurting could be all of those and the shunt malfunction.

Dr. Swift has asked to return to Dallas Friday so he can "tap" Jack's shunt and measure the pressure. We'll know if we're continuing to monitor or setting up a next surgery after the appointment Friday.

David and I are both managing to get some sleep again. Today, Jack and I actually were able to get outside for some fresh air and sunshine. It was great!

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Home

After a long hard day of driving, we're finally home. Please join us in praying that Jack sleeping on his stomach really will make a difference in his breathing. His face may be very swollen in the morning though.

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On Our Way Home

This happy guy was sprung from the hospital yesterday afternoon. We spent a restless night at the hotel and are on our way home. We took two days to make the trip a little more bearable on the way out but we all just want to get home so we're trying to do the whole drive back in one day.

It's been an exhausting week. This whole trip started a couple of months ago when I happened to send a frontal and profile picture of Jack to Dr. Fearon. He was a bit alarmed by the height of Jack's head and the fact that Jack's forehead appeared to be so far recessed. He advised that Jack return for an anterior cranial vault remodeling to make some more room for brain growth to allow for good blood flow to the brain as well as to prevent or stop any increased intracranial pressure issues.

When we got to Dallas and Jack had his MRI, we were surprised to hear from our neurosurgeon that Jack did not appear to have any pressure issues.

Then we met with Dr. Fearon who continued to advise that we move forward with surgery. He strongly believed that Jack needed more room even if the current MRI did not show increasing ventricle sizes. He reminded us that he usually monitor's the kids' optic nerves and monitors for development of sleep apnea to determine timing of cranial surgeries. Because Jack's optic nerves are already severely damaged and he already has sleep apnea, those methods cannot be used with Jack. Ultimately, David and I decided to trust his experience, expertise, and intuition. And we decided to switch to a more proactive neurosurgeon who works more closely and more often with Dr. Fearon.

The next afternoon, we received confirmation that we made the right decision. Dr. Swift said that Jack's shunt was not working properly and the pressure within the shunt itself was high. Apparently, the shunt valve was clogged and while it allowed the ventricles to drain, they were not draining as they should have. Dr. Swift explained that if the shunt was working properly the band of unfused bone just behind Jack's forehead should have fused. This was news to us since our former neurosurgeon was not bothered by the unfused bone. Apparently the unfused bone worked in Jack's favor since it kept things from getting too much tighter prior to the surgery.

Dr. Fearon and Dr. Swift discussed replacing the shunt while they were already operating on Jack but ultimately decided against it because a properly functioning shunt could cause the brain to not move into the newly created space allowing excess room for the brain to bounce around in. Dr. Swift pulled a lot of cerebral spinal fluid out of the shunt and was concerned about fluid building up again quickly in the ventricles causing the brain to be pushed into the space by rising pressure so he would not allow Jack to leave the hospital without another MRI showing that the slow functioning shunt was not allowing too much fluid to accumulate in the ventricles. Fortunately, the MRI yesterday morning showed ventricles that were unchanged in size.

Unfortunately, when cutting across Jack's brow bone to open up the skull, Dr. Fearon cut across Jack's frontal sinuses. The frontal sinuses are not present at birth. They begin developing around age 8 and continue to grow in size into adolescence. Jack's were large enough that Dr. Fearon cut into them and then had to create a flap over the sinuses to keep bacteria from the sinuses from getting into Jack's brain. Dr. Fearon wants Jack to avoid using his Bipap because he is worried the positive pressure will push any bacteria through the flap. The area needs three to four weeks of healing before we consider using the Bipap again.

Jack's breathing was great in the hospital just after surgery but each day we found that he needed a bit more support--more elevation of the bed and oxygen--to keep his oxygen saturation levels where he needs them. Last night at the hotel, he never really got into a sound deep sleep because he would obstruct his airway and that would wake him up.

Now we go home and wait for Dr. Swift to call. He'll let us know whether he wants to tap the shunt after Jack has had a little time to recover from this surgery or whether he just wants to continue to monitor Jack with MRIs to determine when or if the shunt needs to be removed and replaced.
Thank you for all your prayers so far. We continue to need them.

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Jack is BACK!

He is much more himself this morning. He had a rapid sequence MRI this morning and handled it like a champ. David is currently wheeling him around the unit in a wagon. Drs. Fearon and Swift are tied up all day so they will get together at the end of the day, review the scan, and discuss a game plan with us. We will be discharged late this evening unless the scan gives us a reason not to. Everybody is happy with treating the fungal infection in the ear with just the powder. No one feels any need to treat systemically but I may just ask later today what the harm would be in being extra cautious.

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Can't Let a Little Thing like Vision Stop Play

After the wagon ride, we both took a gloriously long nap. Jack woke up before I did and has been trying a bit more to play some of his ipad games between watching his favorite episode of Sesame Street and sleeping. It takes some serious skill to play a matching game with one little slit of an eye open.

For all you pajama fans (like Alicia!), Jack dislikes pajamas. I only get him to wear pajamas to our Smith family Christmas party. That's why he's wearing regular clothes or not wearing any.

Did I mention earlier that Jack's left ear culture came back positive for fungus? We're treating it with an anti-fungal powder that we "gently puff" into his ear.

We had a pleasant surprise this evening when our friends Margaret, Elizabeth, and Catherine stopped by.

After our friends left, Jack's temperature went up a little (100 degrees) and he said that he was hurting so we got him some tylenol.

He also developed a fairly noisy expiratory wheeze and a cough so I requested that we get proactive rather than reactive and requested a respiratory treatment. He hasn't had it yet but is sleeping pretty soundly and sounds pretty good.

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First Shampoo Done!

Our craniofacial friends who treat with Dr. Fearon will recognize this milestone. The first shampoo is a big deal because until the first shampoo it's hard to get really cleaned up. We opted to do the shampoo at the bedside to preserve his one remaining external jugular IV (it's in his neck) and because Jack just did not feel up to sitting in the tub or standing for a shower.

After the shampoo, we convinced him to go for a wagon ride. Jack looks so handsome in his "new" button down shirts that Dave said, "yeah, I'd tell you not to get a big head but too late."

Yep, that's how we roll...
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My Pretty One (Finally) Sleeps

It was quite a restless night. I do not want to declare that his days and nights are backwards because I don't want it to be true. Dave and I took turns lying beside him all night. He just did not sleep well. Around midnight (it's all fuzzy now so I'm not 100% on the time), he said he had an "owie". He never gave a specific location but we got him some tylenol. It really did not seem to help much. Now it's 940 am and he's breathing deeply and sleeping. I think I'm going to take a nap too.


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Operation Wake Up has hit a Stall

Jack rode around in the wagon a bit but he was falling asleep. So we put his shoes on (IV hopefully will still work) and got him to walk up and down the hall 1 1/2 times. Then he pretty much begged to go back to bed and promptly fell asleep. On the one hand, we're thinking that it has not even been 24 hours since he had his skull cut open and on the other hand, I wonder if something is wrong....

We're waiting on his room on the regular pediatric floor to be cleaned.

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Dr. Swift Said Wake Him Up

Dr. Swift came by and he does not want to see a sleepy Jack. Dr. Swift wants to see Jack returning to his normal activity. We are working on Project Wake Him up!

Our nurse has gone to get a wagon. Jack was a hard stick and has an IV access in his foot and his neck. We're trying to preserve those so, unfortunately, we are not encouraging walking. We are hoping the wagon ride will encourage him to wake up more.

Dr. Swift won't tap the shunt until more of the swelling resolves.

We'll try to keep everyone updated.
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Roller Coaster

The arterial line is out. The catheter is out. The oxygen is off. His blood pressure is fine but we're hanging out in the ICU a few more hours because it dropped a bit this morning. They think it was from the sedation which is now off.

He's a little jumpy at times. I think it's probably because he's so swollen that he can't see much. He is still very sleepy but when he wakes up he is still very very Jack!

We got some unexpected news yesterday. Jack's VP shunt pressure was high. The front part of the shunt was doing its job of draining the ventricles but the valve which prevents the shunt from draining the ventricles too much or too quickly has "gunked up". The shunt needs to be replaced and so the conundrum begins.

I'm tired so my explanation may not be the best right now. Jack's brain needs time to fill in the new space created and the surgery site to heal. If the shunt is replaced before the dura has time to "stick" to the new forehead area, we run the risk of creating an open area for the brain to bounce around in and increase the risk of infection from a non-healing wound. On the other hand, we don't want high pressure in the ventricles to drive the brain into the space.

The neurosurgeon, Dr. Swift, will tap the shunt again sometime before we leave and we'll have another MRI scan. Then we will make a plan.

It is good to have confirmation that it really was the right time to have this cranial vault. It's not so good to be hopping back on the surgery roller coaster.

Thank you all again for all your outpouring of love and prayers. Please continue to join us in praising God for his great mercy and the miracle of restful sleep as we also continue to pray for wisdom and guidance for us and Jack's doctors.

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Quiet Night, All is Calm

I sit here continually amazed. God is great. God is good. I am thanking here for a good night's rest for my wonderful son. I am praising him for Jack breathing well without the Bipap. I thought we would have to spend the night repositioning him and clapping on his chest and keeping him from deep sleep to keep him from obstructing. NOPE. I am ever so happy to report that I was wrong.

He's woken up a few times asking for water but it's been a nice quiet night overall. I even got some sleep.

We should hopefully move to a regular room later today.
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Praise God!

It's fairly early in the night so far but God is at work. David and I are sitting here amazed as Jack breathes slowly and evenly. He begins to obstruct from time to time but we reposition him, do a little vibropercussion to get the post-surgical chest gunk moving and the easy breathing resumes! Praise the Lord! Jack has not been able to breathe like this after being asleep for more than an hour for YEARS!!!

He is on some oxygen to help keep his oxygen levels up but that has never been enough before.

It's difficult to tell in this picture but Jack's facial swelling is increasing as expected. It is expected to peak around day 2 to 3. We've tried to prepare Jack and let him know that his eyes may swell shut and he may not be able to see for a day or two.

Thank you to all of you that have been praying. Please continue to praise God for his blessings as well!
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Calling All Prayer Warriors

When Dr. Fearon opened the space at the front of Jack's head, he washed out the frontal sinuses and created a flap between the sinuses and the new space. There is a danger of infection if bacteria passes through the sinuses (a naturally open body cavity) to the new frontal space (a naturally closed body cavity).

Jack has severe obstructive sleep apnea. When he sleeps, his tissues collapse cutting off his airway. To keep him breathing at night, he uses a high pressure machine called a Bipap that basically creates a tube of air keeping the airway propped open. Dr. Fearon says that we need to avoid using the Bipap if at all possible for the next two weeks. The positive pressure air could push bacteria in the sinuses up into the new space.

Jack has not been able to make it through a single night of sleep (hour of sleep even) without the Bipap since he got it and he needed it before we got it.

This is where all of you come in. Join us in prayer as we pray that he sleeps well and maintains his oxygen levels without using his Bipap.

We have more updates to come.
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On His Way

God continues to hold Jack in his hands. We, however, had to let go and allow the OR staff, anesthesiology, and our surgeons take Jack. The waiting begins as we hold on to the promise that God has known Jack before he was placed in my womb (Jeremiah 1:5) and he has good plans, plans for a future and a hope (Jeremiah 29:11).

Thank you for all your prayers.


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Dallas Deliberations

Traveling for medical care adds a layer of complication and stress that nobody needs. When you travel for medical care, everything has to be coordinated just right. You can't just come back another day if somebody doesn't get all the orders right and have the tests arranged correctly. It has a been a long stressful day full of confusion but we seem to have gotten everything worked out.

Jack's MRI showed that his ventricles had not changed much. And that's good. Jack's head circumference is unchanged. And that's good. But Jack's head height has increased. That's not so good but no one can really explain the height since the ventricles look okay. Jack has been developing by leaps and bounds. Of course, that's good. So why are we here?

Now you're caught up to where we were (minus the high stress level from last minute changes) at about 4 pm today. Then we met with Dr. Fearon and talked and talked and talked and talked some more.

The only "known" is that Jack needs to have an anterior cranial vault remodeling to make more space around his frontal lobe. Jack's brow bone is fairly recessed and it will at some point compromise blood flow to his brain. It could be compromising his blood flow right now. Jack's developing well but maybe he could be doing better. The bottom line is no one can guarantee the perfect timing for Jack's anterior cranial vault.

We ultimately decided to continue to trust Dr. Fearon's experience and Jack will have surgery later today. The surgery will start around noon with ENT first cleaning out the left ear and replacing the tube. Then the gastroenterologist will do an endoscopy. Finally, Dr. Fearon and Dr. Swift will spend about 5 hours cutting open Jack's skull and moving the brow bone forward.
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Texas

We've reached the great state of Texas. Jack is in a great mood and is helping to keep our spirits up.
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Rarin' to Go

We spent the night in Louisiana. We got a rather late start yesterday so we just drove and drove until none of us could stand "Go hospital" any longer. I'm fairly certain that "Go hospital" way outranks "Are we there yet?" on the list of phrases a child can repeat that seriously jangles your nerves.

Thank you so much for all the love and support through prayers, good wishes, and thoughts. I really can not tell you why this surgery scares us so much.

After all, he had a cranial vault remodeling back when he was just 16 months old. He did fine but then again....that surgery began the cascade of endless emergency after emergency that kept us flying to Texas every couple of months. God held us through all of that. God was with Jack and definitely us then. God kept us going then and he's still just as big and just as good.
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On Our Way

We've decided to drive this time so we're on our way to Dallas. I don't remember ever being so worried about an upcoming surgery. I've cried quite a bit the last few days. I cry during my prayers even as I confess my belief that God is in control and his ways are not our ways. I cry as I praise him knowing that his plans are good. I could put on a brave face and pretend that I know how everything will turn out but I do not believe that it would be honoring to God who knows my heart. Yesterday I cried as I ran and prayed. It was a windy day and as I felt the wind whip around me I felt like God was letting me feel his presence. He was all around letting me know that he sees my pain.
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Found the "Surgery T-shirt"

Well, I guess I'm about as mentally ready as I'm going to get for Jack's upcoming cranial vault. My "surgery t-shirt" has been hiding in my closet for quite some time now. I have worn this t-shirt for nearly every one of his 12 surgeries thus far. And fortunately, Jack has not had to have surgery for awhile.

Before Jack, I lost a baby. I wasn't far along in my pregnancy and that little baby never showed up on an ultrasound. I became pregnant again soon afterward and was ecstatic when Dr. Sharp ordered this ultrasound so early in my pregnancy. It showed that Jack was growing to be our little boy.

I scanned the ultrasound and made this t-shirt to remind me and everyone else that God knew Jack (who did not yet have a name) even before he began to grow in my womb. I guess it must have also reminded me that God knew the child I never got to meet, too. The text around the picture is from Jeremiah 1:5 ("Before I formed you in the womb I knew you.")

Back when I made the t-shirt, I wasn't far along and we didn't have any reason to believe that our child would ever need any surgeries.

Then it came time for surgeries and the recovery room staff got used to seeing me in it.

It's just one of the ways that I use to remind myself that I'm not in charge here.


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