Archive for March 2013

 
 

3/28/13 More Surgeries – MACE and Mitrofanoff

Next Tuesday we will be traveling to a Children’s Hospital where Ren will have two surgeries:  the MACE and the Mitrofanoff.  She will have the actual surgeries on Wednesday, and she will be in the hospital at least 5 nights.

Ren has a neurogenic bowel and bladder – as many individuals with spina bifida have – meaning her bowels and bladder do not function normally.  Because of the damaged nerves that control the systems, she cannot control them – she cannot fully empty her bladder & bowels on her own nor even really feel when she has to “go.”  And because of this issue, we have been catheterizing her since she was around two years old (now up to 4-5 times/day), and we also have been administering a cone enema to her for about a year and a half, which we do every other night to clean out her bowels – after being “flushed” with water administered through her bottom, she sits on the toilet for 30-45 minutes while it works out the poop.

The two surgeries she is having next week will provide alternate “routes” for these necessary tasks:

The MACE stands for Malone angegrade continence enema.  A pathway will be created directly into her colon, to allow for the “flushing” of her bowels through the abdomen area, rather than “down below.”  She will still sit on the toilet for 30-45 minutes every other night to do this, but the advantages are that it will allow her to be able to do the flushing/cleaning of her bowels more easily on her own, which of course leads to better independence, and it will do a total and better clean out of the colon and bowels, since it will be flushing it downward, rather than upward like with the cone.

The mitrofanoff procedure will create a pathway directly into her bladder, to allow for cathetorization also through the abdomen area, rather than “down below.”  Again, though Ren could be taught how to cath herself “down there,” this will make it a whole lot easier, more privacy for when others need to do the cathing, much faster (just lift up the shirt) and of course providing her with much more independence.   If she ever ends up being totally wheelchair bound (which I hope will not be the case, but am aware that it might), it will make this task much, much easier for her then.

For at least one of the surgeries, they will try to use her appendix as the stoma (pathway).  In the rare case it is large enough for both stomas, they will use only the appendix.  This would be the ideal case, for if they cannot use the appendix for both, or for neither, they will have to use part of the intestine, which just makes for harder recovery, since they will be slicing off a piece of an organ, rather than just removing the appendix.  So, prayers that her appendix would be of sufficient size to use for at least one (but preferably both!) stomas would be awesome.  By the way, I guess there really IS a use for the appendix, huh?  🙂

Almost everything I have read about these surgeries has been good.   Most parents and patients have said it is totally worth doing.   However, I have also read the recovery is not fun…painful…hence being in the hospital several nights afterwards.   After the surgeries, she will have a catheter placed in the stomas to keep the pathways open, for about six weeks.  This means no swimming or baths for another six weeks after surgery.  Ren is also still in her leg cast from the foot surgery, though she will be getting the cast off in a couple of weeks.

Please pray for the surgeries to go well, without complications.  Pray that her appendix will be able to be used.  Please pray for a quick recovery.  And please pray that her foot is healing correctly.

I will provide updates after the surgeries.   Thanks so much for your prayers….

 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  Phillipians 4:6-7

March 2013 082

 

3/9/13 – Post Surgery Update

Well, we made the decision very shortly before surgery to only do the foot surgery, and not the removal of the hardware in the femur.  Since I (and others) had been praying for wisdom in our decision making, I am going to just go with the assumption that this was the decision God knew was best.  The surgeon said it would be no problem to do it at another time in the future, perhaps if/when she needs other work done on her other leg.   I am already seeing that things would be much more difficult with the extra worry of having to be careful of the femur.  Examples include:  when we cath her, because we have to push her leg way up high; when we do toileting with her, because I have to push her leg way down low; when she is in bed sleeping, because she twist around a lot.  Any of those activities could very well put too much strain on a healing femur, and so I am happy to have less worry and stress about it.

The surgery went well.  She went in about 6:45 a.m. and we were able to see her all casted up around 10:30 a.m.   She is such a trooper.  All the nurses loved how cooperative she was with them, doing all the stuff they have to do, checking vitals, giving medicine, etc.  The play lady (I know she has a real title of some sort) brought in a doll – a boy that Ren named Jenny – and let her put on the doll a hospital bracelet, a hospital gown, take her blood pressure, give her “shots”, and bandaids.  She really enjoyed that!  The surgeon had told us she would stay the night in the hospital, but he also mentioned that if we had the itch to leave earlier, he could make that happen.  WE HAD THE ITCH.  I had forgotten how LONG the days in the hospital are.  And, yes, that is speaking selfishly, since it is Renaya who had the hard part.  But, we knew she would be ok, because she was acting herself.  She was tired, worn out, and a bit weak, but we have had enough visits to the hospital to know when it is ok for us to go home.  SO, we were home by 6:30 p.m.

I stayed home with Ren yesterday while she recovered.  She was still obviously a bit worn out from the procedure, as she was very content just sitting on the couch with her leg elevated, playing with lego blocks, her “Jenny doll,” playing the Wii, and doing “homework.”  She has a couple of those generic reading and math workbooks for kindergarten that she calls her “homework.”  We work in in once in awhile, and that evening, she worked for like an hour straight, her preference.  Though not feeling well last night (very, very tired, and has a cold), she is back to her happy, active self today.   We cannot let her do any standing at all, and for this first week, we are supposed to have her leg elevated as much as possible.  Thankfully, she has been ok with this (well, the first night, she told me to take her cast “off” before going to bed), going with the flow as usual.  She’s so dang wonderful; sometimes I don’t think I deserve her.

So…..5-6 weeks in the cast.  It is during this time in the cast, and especially the time when we take OFF the cast that I get nervous, because all of her fractures in the past occurred after casts were taken off.  She does have stronger bones now, though, compared to a few years ago when she had those fractures, so the hope is her denser bones will keep away fractures.  It is still a bit of a worry for me, though…

She will be having a couple more surgeries, scheduled now for April 2nd.  If you have some spare time, please pray that Ren’s appendix will be of adequate length for those surgeries.  (I’ll explain in a later post!).  Also, prayers for safe healing of her foot, and no fractures down the road would be super.  And as always, for her speech…and to remain seizure free.

Thanks and praise to our heavenly Father for her safe surgery and for her continued run of being seizure free since August.  Thanks to all who prayed.  I know He hears us all.

Her foot before surgery

Waiting before the surgery...

Her casted foot

Coloring in the hospital while recovering

Feeling better!

 

 

3/6/13 – Surgery

Ren is scheduled for surgery tomorrow at our local hospital.  They are going to do some tendon work on her right foot.  Her foot is starting to become more “deformed” per se, as her arch is extremely high, causing her to walk on just her heel.  Her tendons are really tight above her foot too, so they are going to “loosen” (snip) them, and to help lower the foot more and fix up the arch problem, they are going to transfer one of her tendons to underneath her foot.  There was something about drilling a hole in the heel bone, and having a “button” of sorts at the bottom of her heel on the outside to be able to “tighten” the tendon up.  I cringe writing this.   But, the main thing here is that if it does not get some correcting now, she will have greater problems in the future.

The original plan was to have the metal plate in her right femur removed as well……but we may change that plan now.   Some of you know her history with fractures after surgery, due to her bones weakening during the weeks of non-weight bearing (as they are already weaker than a “normal” individual because of her lack of jumping, running, etc. that would make the bones dense).  Our worry is that having a cast on her lower leg would cause extra risk, because she is a girl that likes to MOVE, and if she is twisting her leg around with that heavy cast below…we just worry that would cause the healing femur to be hurt. However, if we do not take the metal plate out now, it will still have to be done sometime in the future, which would be another time in surgery and anesthesia and six weeks off her feet at that time.

We are not totally decided in the matter, but we will obviously have to decide by tomorrow morning, when we take her in.   She will be non-weight bearing for six weeks.  Four weeks from now, however, we have her scheduled for more surgeries (in a non-local hospital) for her bowel and bladder issues.  I will discuss those as it gets closer to that.  Having these surgeries done while she was down anyway from her leg surgery/s seemed to make sense to us.

Please pray that we will make the right decision regarding the surgery — whether to just do the foot, or to do the femur as well.  And please pray that the surgery AND the recovery AND beyond (her past fractures always occurred AFTER the casts were taken off) will go well with no complications, and that Ren will cope well with recovery.   She is NOT going to like sitting and not being able to move around.

“Jesus replied, ‘I tell you the truth, if you have faith and do not doubt…..If you believe, you will receive whatever you ask for in prayer.”  Matthew 21:21-22