Wednesday, October 05, 2011

We need some rash advice from nurse friends :)

So...we know several of you have medical experience ... any suggestions for what this type of rash could be? Mason has it A LOT, and it usually tends to be after a surgery and shows up worst when he is crying but sticks around for a long time in a much more minor appearance - weeks on end). Could this be related to morphine or another anesthesia med? (we've read it has an allergic like reaction sometimes and he's had it mildly off and on since his previous MRI intubation). His upper airway also narrows and he sounds awful (hoarse, wheezy) but we've been told this was just from intubation irritation. If it's more likely that this is an allergic type reaction we need to do something to find out what is causing it so we watch out for it next time we need a dermatologist to determine it, talk to anesthesia, or just who? Our pediatrician says it's probably "flushing" but seems pretty extreme if it's just that. It does look like blotches of flat blushing - also behaves exactly like hives (comes and goes at random places) but has absolutely no whealing (no raised areas at all). Anyone who can point us to someone who may be able to help us out, would be great. We'll try to plan a dermatology consult but you know by the time someone can see us, he won't be having the issue at the time. Thanks!!

Tuesday, October 04, 2011

Surgery Update #2...

Mason is home, as of early afternoon!! :)

This is a HUGE praise, and another is that he did not have the level of stridor afterwards that he did last time (they pretreated with steroids this time). He only had to stay a couple hours in post op. Thank you for those prayers!

He is in a HEAP of pain, despite getting 2 doses of Fentanyl, one of morphine and Tylenol w/ codeine as often as allowed. He is also very hoarse and somewhat noisy breathing from the tube in his throat, just not quite as bad as last time. It has mostly been about keeping him comfortable today (not very successful yet though). We are praying tomorrow is much better. He is also covered in his blotchy "rash" very badly, worse than we've ever seen it. We still don't have good answers as to whether this is reaction to a med, or just his weird "flushing" episodes worse under stress (didn't start until he came home of course). Please pray that also improves, either way.

The surgery itself did not go exactly as planned (only got half the job done with his orchiopexy due to things not matching up with ultrasound expectations, needing to make judgment calls on what to do, etc) so that was hard news to hear. It means we have to do this again in a few months for the other side. But all went well as far as no other complications during the surgery itself.

Please continue to pray him through the night as he is pretty miserable at the moment. Thank you SO much for helping us through this day with your encouragement and prayers! Don't know how we'd survive without them.

Surgery Update #1...

Mason is still in surgery, but we have some news about the procedures so far.

1. He was sedated with gas and after a "few tries" got IV (we'll only know how many that is when he gets out)

2. His scope test showed nothing unusual (as for reasons why his Mickey buttons may be popping so often; the only explanation may be the size/shape of the balloon being too big for his stomach (which is smaller than average) so we will stick with the other type of balloon; if we continue to have trouble we could switch to a non balloon (we are hoping not to have to do this as it often requires surgery to change them, etc)

3. THE HEARING TEST: the results of the ABR are back, and somewhat surprising to us. He has mild to moderate hearing loss symmetrically in both ears, despite the ear tubes. One of the tubes seemed possibly clogged with wax so the ENT will have to check that, but the other looked clear, and was showing the same loss. This means that although Mason can hear, he may not be hearing well enough to learn language effectively and hear in a meaningful enough way given his vision impairment. They have referred us to three "schools for the deaf" in the area to get hearing aids for him through First Steps. Please pray for us as this is a whole new area that we have very little experience in (thankful for good friends like Katy T and others who have great knowledge in this area!!). We are hoping this support could potentially help him a lot with his development if the hearing aids and early intervention make a big difference for him. He really really wants to communicate and we want to help him any way we can!!

He is still out for his other procedure (not laparoscopic as I first thought it would be but just "small incisions"). They told us he very well may get Fentanyl before he wakes up so please especially pray as he nears the end of these that he will remain comfortable throughout his recovery without complications. Thank you for all the prayers already going up !! :D We love you all!!

Monday, October 03, 2011

Surgery Tomorrow...

 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

Mason has surgery coming up tomorrow - we have to be there at 5:30 am, everything kicks off after 7:15.

He's slated to be out for 4.5 hours for a 1-hr hearing test/ABR, an upper GI scope (to see why his Mickey balloons on his feeding tube keep popping) and some scheduled laparoscopic stuff w/ urology. The length of time under is one of the biggest concerns. Here are some other prayer requests:

*that when he gets there tomorrow he is HEALTHY (no wheezing/congestion/fevers, etc) and they can actually do everything they have planned.
*that they are able to use gas first to put him out before they place the IV, and that they would not have trouble starting the IV (last time he had 15 holes from that and we hope not to do a repeat)
*that there are no complications during the surgery, especially no trouble from previous scar tissue that would make them have to convert to an open incision as opposed to laparoscopic, and that they wouldn't do any damage to his organs or his fundo as they explore with scope/tools, etc.
*that the results of all the procedures would be encouraging
*that he woudn't have any trouble waking up from the anesthesia or have bad side affects or be in much pain
*that he wouldn't get stridor from the intubation or infection from the steroids used to try to prevent it if they choose to use them
*that he wouldn't have any seizures from lower thresh-hold/stress, etc
*that he makes a smooth and uncomplicated recovery not requiring big pain meds just Tylenol/Advil, etc and that he wouldn't be set back in any of the awesome areas of progress he's made lately
*that it remains a same-day procedure and he gets to come home tomorrow (and stay home a LOOOONG time - this is his last "planned" surgery and we hope not to need anymore ... ever? we can hope, right! :)

I'm sure you can think of others too, these are the big ones on our minds at the moment :)

Thank you!! we will update asap.

Mason's Mix

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