Unfortunately, Surgeries are Looming…

Yeah, I know.  I'm not really excited about it either.  We've been to 4 doctor's offices in the past 2 weeks, and we've seen 5 doctors.  

Within the last 3 weeks Isaac has started having an entirely new kind of seizure.  He has also run an intermittent low-grade fever.

We've also known for about 7 months that Isaac's hip is dislocating about 50% out of the socket in certain positions.

So two of his doctors have recommended surgery:  the neurologist and the orthopedist.  The neurologist has recommended an implant that might reduce Isaac's seizures.  The orthopedist wants to do hip surgery.

As we told the neurologist about the orthopedist's recommendations, she told us that if he is having a lot of pain in his hip, that could be causing the new seizures and the low-grade fever!  Right, so my son is in pain, and I didn't even have a clue.  I'm feeling really terrible about that right now!

So, we'll be seeing the orthopedist again soon, to have more x-rays taken, and to hear his recommendations.  This surgery is quite invasive, and would mean 6-8 weeks in a full body cast or brace.  I told Doug that we would definitely need nursing help following that surgery!

We will not likely do anything about the new seizures until after we have resolved the hip issue.  If it is pain that is causing the new seizures, then following corrective surgery, they should stop.  Normally.  Ideally.  In the usual cases.  (Yeah…I'm not holding my breath on that one!)

Needless to say, we are not feeling very happy about these situations.  We hate to see new seizures, no matter what is causing them.  We feel horrible to think that Isaac is hurting all the time.  We loathe the thought of another surgery, especially because he did so poorly during the last surgery.  We abhor the idea of more equipment and gadgets being implanted in his little body. 

I was going to include links to the two surgeries so that you could look at them, but I just got overwhelmed while reading the sites and had to stop.  When it's time to go forward with them, I'll give you a better idea of exactly what will be happening.

I know that my God is in control.  I know that God has His hand on Isaac's life and ministry.  I know that God has allowed us to walk some very difficult paths so that others would see Him in Isaac.  I believe that Isaac causes people to think about God, and reconsider what they believe about Him.  I have witnessed folks response to the peace that Isaac has, and to the peace that God has poured out on us.

Sometimes I don't like where God leads us, but I know it is for my good and for His glory.  So "I will follow, follow, all the way" just like the old hymn says.  It will be very interesting to see God work through this next stage of Isaac's life.

We certainly would appreciate your prayers for wisdom as we make the decisions for which procedures to do, especially the one on his hip.  There are innovative doctors doing wonderful things for our kiddos, but they are not covered by Isaac's insurance, nor are they in the state of Florida.  We need wisdom to choose what is best, while considering all the factors involved.

Thank you, in advance, for carrying us to God's throne in prayer.

Alesha

10 Replies to “Unfortunately, Surgeries are Looming…”

  1. Ah Alesha I’m so sorry. You know that both my girls have now had the hip surgery, don’t you? Little Fish has made an amazing recovery; Mog took a little (ok a lot) longer to recover but it has been good for both of them. It makes personal care much easier now their legs are in the right place and not crossing over all the time. Mog was in pain beforehand and now is not. If you can use a brace then it’s much easier than with a solid cast. But I’d definitely agree that you’ll need nursing care afterwards – Mog was discharged on a drugs plan which had us giving her something every 90 minutes around the clock! And it takes at least two people to roll the child and move them around for changing and comfort etc.
    Is the second surgery a Vagal Nerve Stimulator? We were talking about those this afternoon, not for Mog but just in general.
    One thing – if they think the pain could be producing the seizures could you try some heavy duty pain meds and see if that makes a difference? We chose to go for the hip surgery, but I have friends who decided differently, and who have a variety of different pain meds instead to keep their child comfortable.
    Tia

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  2. Tia, thanks. I knew that LF had just gone through this, but thanks for the reminder about Mog. I had forgotten. You know, I was wondering if we could just try some pain meds, and see if that helped decrease the seizures. I was thinking just something mild at first, Motrin or Tylenol, to see if we noticed a difference.
    And yes, we’re discussing the VNS. But we don’t even know if he would qualify, as of yet. His shunt is magnetic, so I don’t know how the two would work together. It is probably something we will consider, even if the hip surgery helps, because he just still has SO many seizures some days.
    My hubby is the one who has been so leery of nursing help. I am just about ready for it on the “normal” days. : / But yeah, I told him I would have to have help…just can’t be the Amazing Super Mom all the time! : )

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  3. Alesha – I’m echoing dear Mrs. C’s comment. I’m praying here! BTW, I FINALLY got the package off to you today. It went first class so it should be there soon.

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  4. (((hugs))) to you my friend. I am praying too, and know you are trusting God in all of this. Claim His Word concerning this situation.

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  5. OH Hun! Praying for you to have extra strength and wisdom as all these decisions need to be made. The decisions are hard to make, but I am sure with the LORD’s help you will make the correct one for you & Isaac. I keep holding my breath every time we see the ortho that he’ll be his same old uncommunicative self and NOT utter the words “time for surgery”
    Hugs & Prayers!!

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  6. I know YOU know, and I am so grateful for others who walk the same (or at least, very similar) path! It makes it easier somehow, but not that we’d wish it on any one else. You know what I mean? I also know that ya’ll are facing surgery soon with Josh. Know that we will be praying diligently!

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