Thursday, November 5, 2009

Inexpensive therapy..........

This is what I've decided blogging is. An inexpensive and easy access way of getting counseling. That is what my last post was about.....getting it all out and getting support. Sorry to say, but that is what this post's purpose is all about as well.

Last night after I dropped our older boys off at church for Cadets, out of the blue, I thought of other things that Gavin had to go through during the time before his stroke. I was driving to the store to get some groceries and I had to go home instead, because I was sobbing harder than I have in a long time.

I remembered that during the two days leading up to Gavin's stroke he also had a VERY high fever. It was running between 104 and 106.5 degrees! (Maybe another sign of dehydration???!!....thinking back I seriously wonder about the intelligence of the many doctors and nurses involved in his care at that time!) At the time, doctors were contributing Gavin's symptoms to his having C-Diff and going through withdrawls from the high doses of narcotics that he had been on for months. While some of his symptoms can be attributed to these things, many more should have been a big red flag to them, that much more was going on with him!

I want to say that I don't blame myself for what happened to Gavin. I just wish that I had fought harder to get the doctors to listen to my concerns. I really did all that I could. I told many doctors and nurses that I thought that he was dehydrated, they just didn't believe me. My only fault in any of this was trusting them. I figured that the doctors had to know more than I did. Obviously, in this case, they did not!

Anyway lastnight, thinking back to those couple of days before his stroke and remembering the high fever he had made me want to throw-up! The image that was in my head was of my sweet, precious baby having to lay there burning up, in pain, trying to tell us that something was wrong, not sleeping, continually shaking and on top of all of this.....they had him laying on ice packs and covered with ice packs! This is what I suddenly remembered lastnight. This is what made me break down again.

A mother is supposed to comfort her child and just imagine having to struggle like that while laying on ice!!! This thought and image is so horrible to me! It breaks my heart to think of him cold and suffering! The tears are still flowing this morning. I just pray that he doesn't remember any of that time and I pray that God had him wrapped in comfort during this time of suffering! Because it's almost too much for my mothering mind to think about! I would have taken away all of his pain if I could and I would erase his having to go through all of this if I could, but I can't.

Instead of getting groceries lastnight, I came home and looked at pictures of Gavin at the age he was when all of this happened. I also read some of my blog posts from that time. Here are a couple of picture of Gavin a few days before all of this happened.





Gavin used to always have his hands and fists up by his face. He would be sucking on them or holding them in front of his eyes staring at them. It was so cute to me! Especially watching him stare at them. It was like he had his own toys and entertainment. After the stroke he no longer did this. Several months after the stroke we found out why he no longer did this. It was because the stroke caused him to be legally blind. He is still considered legally blind today, but they believe the blindness stems from brain cell damage, not his eyes. Hopefully with therapy, his brain will relearn to tell his eyes what they are seeing.

Here are some words that I wrote on my blog just before he had his stroke:

Where do I start?! Gavin has had a rough 24 hours! He, nor I, have gotten much sleep. He had a couple of tests yesterday, which came back normal, but now they are again puzzled by what's going on with him. He was quite fussy yesterday and ended up running a 106.5 fever during the night! He was so agitated and just couldn't sleep. It was horrible for me to watch again.

He is also very dehydrated. He has been on a dieuretic 3 times a week, but when we got to this hospital they switched it to 2 times a day! They did this even though I told them that I thought it was too much. So, now he's dehydrated, like I thought he would be. They are going to put him back on his original dose and schedule. Hopefully this helps. Please pray that Gavin comes back around to his smiley self and starts to feel better soon!


Here is a picture of Gavin the days after the stroke, back on the vent and needing lots of medical intervention and some more words that I wrote just after his stroke.


Gavin needs lots of prayers right now! They are in the process of putting the ventilator back in! His breathing became very labored a few hours ago and his fevers are still very high.



The following paragraphs were also written on my blog following his stroke. This will just give you some idea of how he was doing and how I was feeling at that time.

Gavin is hanging in there. He is hooked up to tons of machines again and kept sedated most of the time. This is sooo hard to see after seeing him so well last week! His kidneys and bowels started giving out, but seem to be coming back again. His blood pressues have been quite low and he's been getting lots of support for this, plus lots of blood and platelet replacement.

Yesterday I reached an all time low since this all began. I can't see him suffering anymore! I have always concentrated my prayers on healing him, but yesterday I just kept praying that God would take him so that he wouldn't have to fight and suffer anymore! It is breaking my heart! I'm sobbing as I type this, it is just getting to be more than I can take! Please pray that God takes away Gavin's suffering; whether that means healing him and making his life worthwhile or calling him home to be with Him. Because right now Gavin's life is horrible! Our family life is stressful too! We are constantly running from work, hospital or kids. Our boys' lives are chaotic too. Pray that they feel cared for and loved too!


I am so angry about what has happened with Gavin this week! This shouldn't have happened! I feel it is so important that health care workers take the time to HEAR the patients and their families and not miss something because they weren't listening! There are a few simple things that could be changed to ensure this. Like, having more continuity of care. When so many doctors are seeing patients each week it is so easy for them to miss something because they can't compare the patient today with how they looked yesterday. Plus, they send out evaluations after the hospital stay is over to see how the patient feels their stay went, Why not do this during the stay too? This way problems could be fixed during the time the patient needs treatment, instead of when it's too late for that patient. They could ask questions, such as: Do you feel anything is being missed with your care? Are you being listened to? Are we as health care professionals communicating well with you? I feel this would leave a smaller chance for error to occur. No doctor can read a patient's whole chart everytime they see a patient and they are human too. So, keeping the patient and their family involved and getting their impute would help make sure that the doctor knows the patient's history and help prevent errors. Sorry for rambling! I guess I'm passionate about this topic right now!


Today my anger is fading. I'm glad about this. Yesterday I felt so uneasy all day with all that anger brewing in me! Today brings a feeling of defeat. I just feel depressed and anxious. There are so many uncertainties with Gavin's future. As if there weren't enough to begin with! Now we are uncertain about his brain function due to the seizures that he continues to have. They feel his brain is "irritable" due to the fevers, DEHYDRATION! and infection. The EEG showed low brain waves, which is not good, but they aren't sure if the results were skewed due to many factors. Those factors being: A lot of sedation from the anti-seizure medicine, being on the vent, having a pacemaker and a lot of electrical activity in the room with all the machines he is needing. So, add possible brain damage to all his other issues! I'm just ready to go to sleep for a week and to wake up finding this all to be a bad dream! It's hard to have hope when there are so many uncertainties! I'm still grasping for it though! I know that anything is possible with God and that miracles are still possible. Knowing this and having all the support we have from so many are the only things keeping us going. Which is A LOT! I just have to keep reminding myself this!

Please continue to pray for Gavin! Pray that his seizures will stop and that he will come back to us as he was, or pray that God calls him home to be with Him where Gavin's suffering will be no more! Pray that our family continues to look to God for all that we need and that we not be consumed with worry, knowing that God is in charge! Pray for wisdom for the health professionals! Pray for our extended family, knowing that they are suffering with this too!






Obviously, Gavin got better and eventually was able to go home again. If fact, Gavin was released from the hospital on Mother's day weekend, after having spent over 4 1/2 months in the hospital. To this day, it's the best Mother's Day gift I've ever been given!

Here are more words that I wrote on my blog during that time and a picture of Gavin the day before he left the hospital:


Happy Mother's Day to me!
Gavin is going home tomorrow!!!






Here is what I wrote on my blog the day after he came home and a picture of him home again:

Home Sweet Home!
GAVIN IS HOME!!! He is doing great and we are so glad to have him here! While driving home with him, I felt such relief and happiness! I thought that I would be worried, but so far I'm not. Another blessing from God! We are so very thankful!




What a sweetheart! Don't you think?!


Lastnight I asked Joel if I would ever be able to totally get past these times where I reminisce those days and have breakdowns like I do a couple of times each year. He said that maybe it's part of the grieving process. I suppose that it is, but it sucks! I feel guilty saying that I am grieving over this, because I still have Gavin and other moms are not as fortunate, but it has been a loss to me. I grieve for the baby that he was before the stroke and I grieve for the boy that he could have become, had these mistakes not been made and had the stroke never have occured. Plus, I grieve for the things that he had to suffer through!

I don't know if I will ever be able to get past all of this, but I am thankful that I still have Gavin! And, I'm thankful for the prospect of Gavin's and my life in heaven most of all! He's gone through so much and still does, but all of this will definitely be a faded memory when we are rejoicing in heaven one day!

I was reading the Bible to the boys after dinner lastnight. We read the last two books of Revelation. I don't get very excited about much these days, but reading these words sure did lift my spirits! I can't wait for this glorious day where there will be no more suffering, no more pain and no more heartache!

Sometimes I think we just go through life trying to enjoy what is here and only focusing on the present. What we should really be doing is focusing on the future! I need to do this more often! Because I have the knowledge of God and believe the truths that He has given us in the Bible, I know that my future will be SO WORTH all the suffering that we go through on earth! In fact, I believe that sometimes suffering is brought to us so that we will focus on the future! If things were always going so well, I know that I wouldn't look to God as often as I do. And, because I am so stubborn and selfish, God has had to show me which way I should be looking by bringing suffering into my life! It sure does sting, but I truly know that there is a reason and a purpose and a huge reward at the end of all of it! I can't wait for this glorious day!


"And behold, I am coming quickly, and My reward is with Me, to give every one according to his work. I am the Alpha and the Omega, the Beginning and the End, the First and the Last." Revelation 22:12-13

9 comments:

Alicia said...

Alicia,

Once again, I am at a loss for words. This post made me cry like a big ol' baby. In fact, I had to get up and walk away for a few minutes.

I too see blogging as a cheap therapy. Blogging has helped me express some of my most difficult emotions. More than that, the friends I have gained in the process are priceless.

I am angry for Gavin and you that these mistakes were made. I know that healthcare professionals are only human but they should not be so arrogant as to dismiss the thoughts and suggestions of the patient's parents and family. Just not right.

Please do not feel guilty for grieving the loss you experienced with Gavin. Your grieving this loss takes nothing away from anyone else's loss, no matter how severe that loss is. You have every right to grieve, for as long as you need to.

Again, I wish I had more thoughtful things to say. Just know that I am praying for your peace of mind and comfort and giving you HUGE cyber (((HUGS))).

Peace to you, friend.

Lacey said...

I hate to say that you'll probably never get over it, and its ok to have breakdowns every once and a while. I do the same thing, its because things happened to our babies that shouldn't have, and we wish we could have stopped it. I'm holding Jax as I'm reading this and it brings back memories for me too. To think all of this was happening while I was standing by his bed and doctors and nurses were clueless. Its the kind of injury thats hard to notice at first. And they look so good after. I remember bringing Jaxson home and thinking he was doing so good, and as the months went by and the he continued to regress and the seizures started, I realized how bad it really was.
I also hate that I know his vision is poor but no glasses will help it, although they do say over time it should get better because babies brains are so young and can repair themselves somewhat.
Our boys will be ok, we so need to get them together somehow to play.

Heather said...

Re-visting is also part of a necessary kind of therapy.It helps process it all and get it out.The important thing is how much time we spent in those moments.How long we dwell there.The future is truly what it is all about.Knowing that we cannot change the past,as much as we would like to sometimes but in the end, we have to believe that there is plan and purpose to it all.

I spent the better pat of yesterday with a friend who lost her little guy this past March.Her faith and strength is amazing and she said if she looks at it all as being part of God's plan then she can look at losing Thomas in a way filled with gratitude.Gratitude for allowing her to have him for 8 years.I found that simply beautiful and know that if she can look at the loss of her son with those eyes,I can surely accept the path that Zoey's life has taken.

Much love to you Alicia.

ANewKindOfPerfect said...

I don't think any of us will ever "get over" the grieving stage of this. It just is the way it is.

I hate that all of this happened to Gavin because they wouldn't listen to you. I totally agree on them asking us DURING the hospital stay how things are going. When it can still make a difference. Not after, when it's over!

Becky said...

Praying that you will have peace...and that the pain will become less and less...

Michelle said...

Oh girl, you break my heart. I hae to agree with everything. I don't think we will forget or stop having those moments. Even today, as I explained to someone that Lillian would probably never progress to a "normal" age, it made me sad. She's beautiful and happy and I love her, but that doesn't change any of what she's been through or continues to fight for. Just like Gavin. We are here for you sister. Sending you a big hug and lots of prayer.

shan said...

No words, just long distance hugs...

Kimberly Hass said...

Alicia,

So sorry that you are going through this. Please know that I think of you often and I'm keeping you (and the rest of the clan) in my prayers.

Love,
Kimberly

Amber said...

A completely moving and heart wrenching post. Thank you so much for being raw and real...for believing and trusting. Excellent reference at the end.
God bless you...