Sunday, April 29, 2012

Still In Hospital


Gabriel (and Mama) are still in the hospital. (Correction from last week: He’s near the ICU, not in it.) The doctors are on the 3rd (and last available) epilepsy drug that they have tried on him. Yesterday he only had one seizure we know of, indicating something that may finally be working. While they tell us this particular drug shouldn’t make him drowsy, he seems groggy continually, as he has been since being in the hospital.

Cords Cords Cords

On Fri they decided that oral antibiotics for his (apparently hospital induced) pneumonia was not working, and lacking any other vein they could access, they inserted an IV in his head. Not too appealing, and very limiting on his head positions; we hope it won’t be necessary much longer.

He has had a very high level of congestion, so they have been regularly suctioning him to evacuate the mucus. Connected to that they have had to give him oxygen. The congestion seems to derive both from the remains of the pneumonia (which they say is cleared up) and the effects of the epilepsy drug. Since drinking milk makes it worse, and since he was having trouble drinking anyway (due mainly to grogginess), they have once again inserted a feeding tube in his nose. Another thing we hope can go soon. On the bright side, with the feeding tube it’s the nurses who do all the feeding.

We are hopeful that we can get him out of the hospital this week with no tubes attached. Pray towards that.

The Ultimate Aim

What would we really like to see happen? Not only would we like to see Gabriel healed, we would like to see the release in the church at large of an era where we begin to see genetic disorders healed often, similar to how hearing problems are quite often healed today in certain quarters. As long as you are shooting for the moon, you may as well figure out how to make regular trips. Hey, it’s 2012, aren’t things like that supposed to start happening?

Link of the week

A great old hymn (formerly unknown to me) with a lovely new tune.
Before the Throne of God Above



Sunday, April 22, 2012

In Hospital (Dutch below)


Since Thur afternoon Gabriel (and Mama) have been in the hospital in the PICU (Pediatrics ICU)

On Tues two things happened around the same time. 1) Gabriel’s milk intake shot up by about a third. He quit choking so much on his milk, began sucking much stronger, and became voracious, drinking more in one session than he ever has. 2) He began having a new type of seizure/fit, this time affecting the whole body at once and more disturbing than any previously, and to my untrained eye looking downright demonic. (Maybe there’s a good medical explanation for these two things occurring together, but the only explanation I could think of is a shift in tactics by the enemy on what to attack.)

When we took him in for his monthly check-up on Thur, the doctors were alarmed by the new seizures and felt he needed to immediately be hospitalized to begin getting epilepsy medicine, since this new type of seizure could destroy brain cells thru a lack of oxygen. Mama & I have very strongly wanted to avoid giving him epilepsy medicine, but for better or for worse we acquiesced to the doctors’ urgings. So straight into the ward they went, sending me off with a long list of supplies to bring.

Vane, Vain, Vein

In in order to inject medicine, they tried in vain to find a vein for about an hour, making a pin cushion of him in the process. (Before starting the doctor looked at his wrists and said to me, “This is going to be a nightmare,” so they may as well have not begun.) In the end they decided he would have to take his medicine orally since they couldn’t get an IV into him. They are now playing around with types of medicine and dosages to find something that stops the seizures and doesn’t make him too sedated, a combination that doesn’t appear to be easy to find (or may not exist). This process can take a while, so we don’t know how long before he can come home.

Meanwhile, they found fluid in one of his lungs (probably just started since being in the hospital), so he is also on oral antibiotics. I’m amazed how he swallows all this stuff without objection.

About the only potentially positive in all this is that they took blood to check on another possible disorder that we got a lead on thanks to a friend’s help. Oh, and mama remembered to have me bring her own plate and silverware this time, so she is able to be served food and eat.

 

In het ziekenhuis

Sinds donderdagmiddag verblijven Gabriel (en mama) op de kinderafdeling van het ziekenhuis.

Op dinsdag zijn er twee dingen tegelijkertijd gebeurd. 1) De hoeveelheid melk die Gabriel dronk schoot omhoog met een derde. Hij verslikte zich niet meer zo vaak in zijn melk, begon beter te zuigen, en sloeg meer melk achterover dan ooit tevoren. 2) Hij kreeg een nieuw soort epileptische aanval waarbij zijn hele lichaam meedeed en die op mij (als leek op medisch gebied) als ernstiger en zelfs demonisch overkwam. (Misschien is er een goede medische verklaring voor dat deze twee dingen tegelijkertijd gebeurden, maar de enige verklaring die ik kan bedenken is dat de tegenstander van taktiek is veranderd en nu een ander aspect van Gabriels gezondheid aanvalt.)

Toen we hem op donderdag naar het ziekenhuis brachten voor zijn maandelijkse controle waren de artsen bezorgd om zijn nieuwe epileptische aanvallen en vonden dat hij onmiddellijk opgenomen moest worden omdat dit soort toevallen zijn hersenen zouden kunnen aantasten door gebrek aan zuurstof. Mama en ik hebben tot nu toe liever medicijnen vermeden, maar nu hebben we het advies van de specialist opgevolgd. Dus liepen ze meteen de afdeling op en stuurden mij naar huis met een lange lijst spullen om mee terug te brengen.

Speldenkussen

Om hem zijn medicijnen toe te dienen hebben ze wel een uur tevergeefs geprobeerd een ader te vinden, alsof hij een speldenkussen was. (Voordat ze begonnen keek de arts naar zijn pols en zei tegen mij “dit wordt een nachtmerrie”, dus ze hadden het maar beter kunnen laten.) Uiteindelijk hebben ze besloten hem zijn medicijnen oraal toe te dienen omdat ze geen infuus konden inbrengen. Ze proberen nu verschillende medicijnen en doseringen uit om wel de aanvallen te onderdrukken maar hem niet te slaperig te maken, wat erg lastig is (en misschien wel onmogelijk).

Ondertussen hebben ze vocht in zijn longen ontdekt (waarschijnlijk kwam dat pas toen hij al in het ziekenhuis lag) dus krijgt hij nu ook antibiotica. Ik sta versteld hoe hij al dat spul doorslikt zonder te protesteren.

Het enige positieve is dat ze, nu ze toch bloed bij hem moesten afnemen, ook meteen kunnen onderzoeken of hij misschien een bepaalde afwijking heeft waar een kennis ons op heeft gewezen. O ja, en mama heeft er deze keer aan gedacht om een bord, bestek, en een mok mee te brengen zodat ze mee mag eten.

Sunday, April 15, 2012

Having Done All, Stand

Sleeping with open eyes, and cradle cap eyebrows

When I woke up the next morning after our exhausting 12 hr prayer time for Gabriel, the first thought that came into my head was, Having done all, stand (Eph 6:13). After finishing that day we could truly say that we had now done all that we knew how to do for Gabriel. Now is the time to stand firmly in faith against the enemy.
A very big thank you to all who joined us in prayer. We are truly thankful. Many e-mailed that they would pray, and no doubt even more joined us that did not e-mail. At the church itself, we had multiple cell-groups come and join us for an hour or half an hour at a time. Lots of individuals came as well, even for the slots where the church said no one was signed up. The least number we ever had joining us was two people at noon (as we ate) and for the final hour.

The Results

This was one more prayer time with undramatic immediate results. Before the prayer Gabriel was choking on his milk so much that it was becoming hard to get enough into him to keep him going. It was very hard to get enough milk into his stomach before his lungs so filled that he couldn’t breathe. After prayer his drinking has recovered somewhat, and he has sometimes (especially yesterday) taken in large quantities of milk all at once again, and is choking less. His cooing and kicking have picked up a bit too, making him seem a bit healthier overall.
His epileptic fits, on the other hand, which had been ramping up again for the last two weeks, seem to be occurring as often as ever after the prayer.

Sunday, April 8, 2012

Nothing but a photo this week

We decided that the instructions and verses for the prayer event this coming Tues./Wed. is too long to include here, so we sent it out by e-mail. If you did not get it and want it (and know our e-mail address), please write immediately and we will send it.

Sunday, April 1, 2012

Upcoming Prayer Event (Dutch below)



We are planning to have a 12 hr prayer event for Gabriel (9AM-9PM) on the 11th, hoping to have others join us for ½ hr time slots (or more). Details & directions next week, but you could join us from afar if you would like for a ½ hr time slot that overlaps our time. Having seen the healing approach fail miserably to date, we are looking to take a deliverance approach to see if that delivers better results.

No Bouncing Balls

We finally quite by accident got Gabriel’s hernia observed in action by a doctor. He tells us it is just a hernia – no descending testicle. What we were seeing was the intestines bulging out. (Still seems the right shape and feel to me.) So much for my astute medical judgments. This week the same bulging started on the other side of his groin as well, meaning he has a double inguinal hernia (my astute medical diagnosis).

Choking On Milk

Gabriel has been choking on his milk  a lot more in the last couple of days. In one feeding on Saturday for instance getting thru his normal 3 hr milk allotment took more than three hours, as he drinks 20 or 30ml and then chokes and has to stop for a time to recover. A doctor visit shed no light on why he might be choking.
He also often tries to drink and seems to be somehow blocked from being able to do so, as if he can’t operate his mouth properly to drink. It’s hard to discern what’s behind this.


12 uur van gebed

Op 11 april hopen we een dag van 12 uur gebed voor Gabriel te houden (9:00-21:00 uur), en we hopen dat iedereen met ons mee wil doen voor een half uur of langer. De details komen volgende week, maar je kunt op afstand met ons meedoen zo lang het maar met de 12 uur in onze tijdzone overlapt. Nu de invalshoek van gebed om genezing tot nu toe jammerlijk mislukt is gaan we proberen of de invalshoek van bevrijding wel tot resultaat leidt.

Geen balletje dat vreemd kan rollen

Eindelijk heeft dan een arts Gabriels liesbreuk per ongeluk te zien gekregen. Hij zei dat het alleen maar een liesbreukje is, geen indalend balletje. De bobbel komt doordat zijn darmen soms uitpuilen, ook al heeft die bobbel qua vorm en textuur nog zoveel weg van een testikel. Daarmee weten we ook wat we aan mijn geweldige medisch inzicht hebben. Deze week is er ook een bobbel aan de linkerkant bijgekomen, wat dus betekent dat hij een liesbreuk aan beide kanten heeft (mijn geweldige medische diagnose).

Verslikken

Gabriel heeft zich de afgelopen dagen wat vaker in zijn melk verslikt dan gewoonlijk. Eén keer heeft hij zelfs langer dan 3 uur over een voeding gedaan omdat hij zich elke 20 ml verslikt en dan eerst bij moet komen voordat hij verder kan drinken. De arts kon er niet achter komen waar het aan ligt. Soms lijkt het wel alsof er iets is dat Gabriel blokkeert, de controle over zijn mond doet verliezen. We weten niet wat dit is.