Tuesday, August 26, 2008

Gavin's New Wheels...



Our life has been forever changed -- for the good!  Gavin and I are both in love with his brand new set of wheels.  This was the best move we could of made.  Gavin now has an entire new world to explore, as he is upright and can see what is going on around him.  I am just loving the way the chair is easy to maneuver and also is great at carrying Gavin's load of medical equipment.

On another note, Gavin started with fevers again last night.  His Gastric drainage is telling us an infection is brewing as the bacterial overgrowth is very obvious.  Thankfully we have the absolute best doctor around who gave us a script for a seven day dose of both IV anti fungal and IV antibiotic.  Does he even understand how super-duper of a man this makes him?  Needless to say Adam and I are excited as we leave for vacation tomorrow morning and were worried our trip was going to have to be cancelled, for at least Gavin and I.

Please pray for a safe and healthy vacation!

Tuesday, August 19, 2008

Pure Sweetness...


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Home Sweet Home...



We are home!  The excitement of walking through our front door never grows old.  Gavin is doing well, although his kidney's still need to improve some.  We are still working on fixing some levels and because ofthis Gavin has not been able to receive his TPN but rather has been getting a much less calorie mixture.  We will be doing labs tomorrow to check his levels again and then possibly again on Friday. Gavin's liver and spleen continue to be very tender so we need to watch him closely for any sign of infection, as this is usually an indication of illness.  

Friday we go pick up Gavin's wheelchair!  We are all so excited, especially my right wrist, as it takes a beating while trying to maneuver Gavin's bag :)

Monday, August 18, 2008

Update...

I thought we would be out of here by now -- I was wrong. Gavin's labs are still not right. They are still trying to correct the electrolyte imbalances and bring his BUN and Creatine, which are measures of kidney function, down. I was told that we may be able to go home tonight but I'm choosing not to believe anyone until I am fast asleep in my own bed tonight.

These past few days have been so difficult. Our family is not together and I miss Madison and Adam terribly. Gavin is asking for Madi and well.. that just about breaks my heart.

Please God... give us a small break.

Sunday, August 17, 2008

Update...

Gavin is doing much better! Today has been a very busy day with lots of people in and out of the room. We started of with a Potassium infusion and then they gave Gavin a blood transfusion. He is now running an Albumin infusion and will then we getting some more Potassium. His kidney function is looking much better but now where they want it yet. The docs feels everything should be reversible but just may take some time. The infections disease team took Gavin off the Amphoteracin IV and replaced it with Fluconazole IV, which should cover the type of fungus which was growing last week.


Just another bump. We should come home tomorrow if his kidney function further improves.

Saturday, August 16, 2008

Back At DuPont...

I brought Gavin into the ER tonight because of the horrible time he has been having on the Amphothericin, his IV antifungal. His labs showed a severe electrolyte imbalance and renal failure. Needless to say he has been admitted and they are going to work on correcting these issues. It's such a hard battle. The things we try to use to help him also cause so much damage. Gavin's abdomen is also very tender and he is in quite a bit of discomfort

Please say a special prayer for Madison as she is having such a hard time dealing with all of this. I had just got off the phone with her thinking we were coming home and now here we are.

Friday, August 15, 2008

St Chris's and Ampho Issues...

Our appointment went ok at St. Chris, however it was not as spectacular as we had hoped.  Adam and I both walked in so stinkin' nervous and both walked out a bit disappointed.  The Doctor new nothing about Gavin so we had to recount his entire life from birth -- and let me tell you, it's quite a long story.  At first he didn't understand why we were referred to him just for Pseudo Obstruction -- he had no idea about the other million issues Gavin is dealing with. After we were able to bring him up to speed we could tell he was thinking but like most neurologist's they are usually men and women with many intelligent thoughts but very few words. We left with the agreement that He would look over the 100 page report that was faxed from duPont and give us a call with his recommendations.

The Amphoteracin or IV antifungal is making Gavin so sick!!  I'm talking about vomit, grey, bradycardic, sweating, pupils dialated, writhing in pain type of sick.  We have tried doing all kinds of premedication but it has only taken off the edge.  The crazy thing is that Gavin has had this medication in the past and has done fine.   He is looking very yellow/grey even off the infusion so please pray his body will react a little better to the nasty medication.

Thanks for your support.

Tuesday, August 12, 2008

We're Home...


Gavin is doing pretty well and we are happy to say that we are once again home. We will be on IV antibiotic for another 7 days and IV antifungals for another 14 days. Of course this makes us a little excited as it helps to ensure that we can stay home a bit longer. St. Christopher was also able to schedule an emergency appointment for Gavin this Thursday. We are really looking forward to hear what the neurologist has to say.

Thanks for everything you all have done for us over the past week, from providing meals, sending cards to visits at the hospital. We are so grateful for the massive support system God has provided for us.

We are asking that if you see us out and about, please try not to touch Gavin and keep some distance is you are sick. Gavin can get sick very easily right now as his body took a big hit during this most recent illness.

Sunday, August 10, 2008

RMC Benefit...

Thanks to all who participated in the RMC benafit for Gavin. We had a great turn out and I heard it was lots of fun. Gavin is doing well and we are very ready to have his new line placed tomorrow morning.






Late Update...

I woke up this morning and realized that I had forgot to update Gavin's blog, so here is the scoop on yesterday's events. There is basically nothing to report. We are so bored! Boredom can be viewed as a good thing when you are inpatient so I'm trying to keep a positive attitude about it. Gavin's red blood cells are holding steady and his platelets are still trending sightly downward. His spleen is still down to his pelvis, which is the cause of the low platelets. We were placed on isolation yesterday for the Enterobacter that grew in his blood culture, which mean no walk through the hospital to make the day go by.

We are scheduled for a new line at 8:45am. Lets see if this actually happens.

Friday, August 8, 2008

Getting Better...

I just love to get to the point where it is time to break out the "getting better" post. Gavin has once again defied the odds and is recovering nicely. He has been fever free all day and although his labs still look a bit off, clinically he is looking much better. The plan now is to stay infection free over the weekend so a new line can be placed early next week.

Thanks in advance to all who plan to attend the benefit for Gavin tomorrow. Gavin and I will not be able to be there but Adam and Madison will be heading back home in order to attend. It really is amazing to see a group who we really have no connection to reaching out to help our little family.

For more information on tomorrow's event click on the photo in the upper right hand corner of the blog. To read the article published in our local paper click here.

Thursday, August 7, 2008

Evening Update...

Things today nave been quiet for the most part. Gavin is still spiking fevers despite the treatment. We are thinking at this point that he now may have moved into the MAS as his hemoglobin and platelets took another hard hit overnight despite the transfusion and his WBC are down to 1. He is still very irritable and just can't seem to get comfortable. At this point we are still trying to get negative cultures. Now that he has the femoral line we have to be concerned about growing bacteria or yeast in the new line. If he truly is experiencing the MAS and not infection we simply have to wait it out. We talked a little today about the possibility of giving him steroids to treat the MAS but the doctors are in agreement that it would be way to risky in view of his infection rate. Right now we will just support him with pain meds and blood products.

Thanks for all the comments and prayers. We appreciate you all!

Update...

Late last night Gavin was admitted to the PICU due to losing all peripheral access and needed the placement of a femoral line. He did great with the procedure however he is still spiking fevers over 104. Please pray that Gavin can fight this fungus and clear it from his system. He is pretty unhappy and very uncomfortable not only from jut being sick but now he has the addition of the femoral line in addition to the many sore sites that were attempted first.

I'll update more tonight.

Wednesday, August 6, 2008

Changes of Plans...


So much for having good luck. Gavin was just too sick for the original plan so here I am waiting for Gavin to get out of the OR where he is having his line removed. He really gave us all a scare this morning but seemed to be doing a bit better before going downstairs. Now the issue is his access. Originally I had wanted a midline placed in, which is just like a normal IV in his arm only longer and can last longer. Well Gavin no longer has a midline so then the plan changed and they were going to place a femoral line in the OR. That fell through because not only does he have fungus but the OR was not set up for both a removal and placement.

So here we are. Gavin will be coming out of the OR with four or more IV placed throughout his poor little body. We need these lines to hold up. Dr. R. was in touch with Pittsburgh today and will be finishing up the paperwork his evening to send. I was a little taken by surprise on how fast things are moving as we are still not sure if we want the evaluation. We need some serious wisdom and peace. It hard when you have doctors telling you what they think is best but not really seeing things from the parents perspective.


Now the plan is to just hang out here at Hotel duPont and pray for negative cultures, lots of pee and for Gavin's liver and spleen to shrink and give him some relief.

Tuesday, August 5, 2008

The Plan...

As anticipated Gavin's blood counts took a massive hit overnight leaving him very pale and very irritable. We will be running some blood within the next few hour, which will hopefully make him feel a little better. Both the lumans in Gavin's central line are growing yeast and now are also growing some kind of Gram Negative bacteria. To begin treatment of his line we are choosing not to pull it. Instead we will start him IV Amphoteracin as well as 8 hour locks of a more concentrated Ampho right into his line. Dr. R. told us that unfortunately this means a lengthy stay for us but if it means saving Gavin from another central line placement it would be worth it.

I'm fully aware that the above statement probably makes no sense to most people but I needed to write it down and clarify it all in my own mind. Basically we are going to try to treat him without pulling out his line. We'll just have to see if it works.

Once again Adam and I are so grateful to each and every person who reads this blog. Your prayers and support are an inspiration to us. Thanks so much!

Monday, August 4, 2008

The Word On The Street...

Our quiet day ended with some bad news -- YEAST. Gavin's doctor recently read some pediatric article on treating fungus in central lines without having to pull the line by locking the line with antifungals. Because access is becoming such an issue for Gavin it would be wonderful if we can save this line. The only bad part of trying something new is that if it doesn't work we will still have to pull the line and pretty much double the length of our stay. He is feeling pretty well, still not himself but ok. We are also making some calorie adjustment in his TPN to help him put on some weight. He has not gained in almost 6 months -- we need to see some meat on those legs. He is now on D25 in his TPN, for all you who deal with TPN probably realize that it's a crazy high amount of sugar.

Thanks for all the wonderful comments today. I always love to read them throughout my long days here at duPont.

Sunday, August 3, 2008

Here We Go Again...

Gavin was admitted early this morning to duPont for high fevers. Thanks for the prayers!

Saturday, August 2, 2008

Fevers, Fevers, Fevers

I feel  like there should be some type of theme song on fevers and all things feverish!  Gavin was running a high temp all day yesterday.  We drew cultures around 5ish last evening and this morning he woke up his usual cold self.  So now we just need to hope that we can grow the bug if that is what the fever is from.  We'll see.

Friday, August 1, 2008

Gloves...

There are only a few people who will really appreciate the humor in this video including Gavin's Nurses and 3E Staff who have been witness to Gavin's obsession with gloves! Some of you may watch this is horror thinking of all the safety rules we are violating -- don't worry, I would never leave him alone.
Enjoy!
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