Headed to the OR...

Tomorrow Gavin will be heading to the OR to have his infected central line removed and make an attempt at placing a PICC line. We are kinda taking a huge risk in placing another line with this big infection but it is a decision that will keep our little boy home -- hopefully.

Worse case scenario they are not able to place the PICC and they will then place a femoral line and admit us until we get a few days of negative cultures and them place another central line.

Thanks for the prayers. Tomorrow will be a long day.

It's Time...

It's time -- Gavin central line must be removed. His culture are now growing in less than 12 hours, which is bad news. There is one bug in particular, which has us concerned. It's very resistant and we have yet to treat through an infection without having to pull Gavin's line. This bug has grown in our past three infections and comes back within one week of stopping antibiotics.

I guess things are getting a little scary again. We are still working on a plan. Gavin's doctor is trying everything to keep Gavin home where he needs to be. We are going to attempt to pull the line and place a possible PICC (if they can place it) and then let us go home with the antibiotics as well as locks in the line. If that plan doesn't work out we will be admitted and a femoral line will be placed and we will have to wait it out and hope that the femoral line does not grow before we get a new line in.

Thanks for the prayers.

Update...

Well -- cultures are still positive for two bugs. The crazy thing is that Gavin is looking pretty darn good, a little pale, but good. Gavin's Doc was in touch with us today so hopefully we will try to come up with a plan.

Lets pray these bugs just go away.

A Day With Friends...

Yesterday I took the kids up to Easton, Pa to visit the Crayola Factory and hang out with some good friends. Madison had a blast hanging out with her boyfriend/buddy Alex, who we first met at DuPont three years ago and who also happens to be fighting Mitochondrial Disease. It was so nice to hang out with his mother and little sister and just be around people who truly understand what it is like watching this horrible disease.

The kids had so much fun, though Gavin fell asleep before we arrived at the Factory and slept for a solid 5 hours -not sure what is up with that. He is doing better today but is still looking very pale. I'm sure he will need more blood again this week. I haven't heard about any of his cultures -- I assume they are still positive. Gavin's Doctor will be back this week so we will see what the game plan is. Please say a prayer for our buddy Alex who is admitted to have his central line replaced.

We love you Alex!

Long Day...

Today was a long day at the hospital. Gavin's Hemoglobin was pretty low (6.3) considering it has only been 6 days since his last transfusion. Even after getting the blood he still looks rather pale. This all makes sense considering I was told that his cultures are still positive and the culture from yesterday is growing two separate bugs.

I'm really hoping these next few days bring some negative cultures. Gavin is feeling pretty good and it would just be nice for his "numbers" to line up with that!

Quick Update...

What a crazy busy week we are having -- all good, and the busyness is totally self-inflicted! Yesterday we spent the rainy day at the Please Touch Museum in Philadelphia. We had lots of fun but we left early as it was very crowded and I felt like the mask and hand sanitizer just wasn't enough protection for Gavin against the bugs in the crowd. Gavin was pretty ticked off as well as I really didn't want him touching anything -- I know, "Please Touch Museum." We all did have a good time and enjoyed the puppet show.

Today we went to the movies. We took advantage of the Family Fun movies hosted by Regal Theaters. All summer on Tuesdays and Wednesdays they hold free family movies! We had lots of fun and didn't even feel guilty about leaving a little early -- we didn't loose any money!

Tomorrow we will head to DuPont for some much needed blood for Gavin. He is doing much better and everyday he gets more of his strength back. His cultures are still positive so we switched antibiotics around last night and are hoping for some negative cultures soon!

We have more stuff planned but I'll save that for another post!

Weekend Update..

What a great weekend we had! Saturday morning we got to witness first hand all the love and support we have. The yard sale held by our community was a huge success! We stopped by around eleven and there were tons of people. The money raised is really going to help us out. We hope to make an appointment with a local dealer who only deals with making vehicles handicapped accessible. It will be interesting to see what all needs to be done to our van to make it accessible for Gavin, not to mention legal.

Sunday we went to church and then spent the day at my parents. Madison got a pair of roller skates at the yard sale that she wanted to try out. She had lots of fun -- it was probably more fun watching her. Daddy and Gavin enjoyed speed racing down the steep driveway as well -- against Mommie's approval of course!

Gavin seems to be feeling better. He wakes up feeling really well but by afternoon he is really worn out and his coloring starts to turn yellowish/green. I think he just may need more blood. Normally when we are admitted Gavin usually requires at least two transfusions to get him through the infection and recovery process.

This week we are hoping to see a house in Boyertown. From what we can tell it looks like this house will be perfect for our family and getting Gavin in and out of the door. We are trying to just sit back and trust that God will work it all out -- if this is the house or not. I also think I forgot to mention that we ordered Gavin's new power chair -- hence the rush to get a new house and van. If we get the chair it will be here in next few months, and the chair is very heavy and cannot be lifted without the help of four grown men. Needless to say our loves will be drastically changing -- but then again, Gavin's life will drastically change as well! We need lots of prayers that our insurance company approves this. Normally I would say there is no way insurance would cover this chair and we will most likely have to fight for it, but we have been so lucky on that end -- we've never had to fight for anything. Some of the equipment we have in this house isn't even heard of, so things have just really worked out for us in this area.

We are hoping for a quiet week -- maybe a trip for blood -- but quiet.

The Mercury...

To read the full article click here.

Rough Week...

I think everyone in this household is so happy today is Friday -- if only that meant things were getting better. It's been a rough week in so many ways. Besides Gavin's health we have had lots of car issues and currently our van, which is are only vehicle that can transport Gavin's wheelchair is in the shop. I did managed to take it apart and stuff it in the car to go pick up Adam from work -- but it was not easy at all!

We are also looking for a new house to live in. We currently rent a 2nd floor apartment in Pottstown, and while I love our actual apartment I do not love the school district and most of all I do not enjoy the two flights of steps to get in the door with Gavin and his equipment in my arms. Tonight we went to look at a place and it turned out to be a total flop. Disappointment. We did get the number for another possible place so please keep our housing issues in your prayers.

Yesterday's trip to the hospital turned out to be a nightmare both physically and emotionally. Wednesday night Gavin got very sick with very high fevers but we kept him home and was better in the morning. About an hour after arriving at duPont Gavin got very sick -- very fast. He was requiring O2 and his vitals were all out of wack. At that point the doc came down and saw Gavin and put in for an admission. I filled out all the paperwork for admission and our little Gavin decided to get better just as fast as he got sick. I asked the doc to cancel the admission and let us treat him at home -- and he did just that. Gavin received both blood and IVIG. His hemoglobin was 6 and his IGg levels were 200, not to mention his white count was 2 -- not what we want to see when Gavin is presenting with symptoms of a massive infection.

So here we are home. Gavin is not looking good. I'm not sure what his little body is doing. I forgot to mention that his blood cultures grew out within 12 hours for both Gram positive and negative rods. The doc feels that he is probably growing the same bugs he had a few weeks ago and so we are continuing the antibiotics we were on from the last infection. It's just sad. His body doesn't have a chance against these bugs.

We hate them -- and yes, hate is a very strong word.

Tomorrow we hope to find a glimmer of hope and joy. Our community is holding a yard sale to help offset Gavin's expenses -- and for that we are so grateful, much more than my words could express.

Not Looking Good...

Things are not going so well with Mr. Gavin today. It started this morning with lots of vomiting of rotten ostomy fluid. Then came the fever followed by the swelling. At some point today I got an message on my phone from Gavin's Doctor letting me know that Gavin probably has an infection as his hemoglobin took a major hit, so much that we will be headed down to the hospital first thing in the morning for blood. We are also going to check his IgG levels to see if we can give him some IVIg. He will probably need some lasix as well as albumin -- It will be a long day of infusions. Lets just hope we can get them all in with no reactions.

I am now waiting on Gavin's TPN delivery where I should find some Gentamycin and Levequin which I hope to run as soon as possible. Needless to say it has been very miserable today. He is still running a temp around 102, and swelling more and more. Lets hope the night is quiet and brings lots of pee pee.

Trip To Clinic...

Believe it or not Gavin made a trip to clinic to see Dr. R! This is probably only are second or third time ever going to clinic as we are always inpatient and never really have follow ups. Kinda weird but it was so nice to be able to talk about issues without being in immediate crisis. I felt like I actually could express what was on my mind because I wasn't in my typical I haven't slept in 48 hours frame of mind!

The biggest issue and most hard to swallow was the concern that Gavin is having some type of seizures. We have had this concern since birth as we has always has strange episodes that had us concerned, but Gavin has so many issues that it's not hard to attribute his weird behavior to one of his sick body systems. Lately Gavin has been having scary episodes of eye crossing along with strange arm tension. Most likely he will be getting a repeat EEG and possibly and traveling EEG as well. Seizures are very common with Mitochondrial Cytopathy so I guess we all kinda expected it as some point -- but that doesn't make is less shocking.

We talked about the activities Gavin is involved in including all his class at the YMCA, and he reminded me that allowing Gavin to experience life despite his fragile state is totally ok. He told me of a new study that shows despite the exercise intolerance seen in Mito patient, exercise might actually lengthen their life. He told me about a study with rats where they divided them up and genetically altered them to have a particular Mitochondrial deletion. Half the rats they made live in a box where the floor was a treadmill -- so they were forced to keep moving all day long despite their fatigue. The study showed that the group of rats that were forced to exercise lengthened their lifespan by 40%. Kinda interesting considering when we see Gavin become fatigued we see his body shut down -- but never the less it is interesting. Cruel to the rats (please don't leave mean comments - I didn't do the study) but interesting.

Of course we also talked about Madison and the struggles she has with having a seriously ill sibling. We talked about trying to find a therapist for her as well as figuring out what we will do next year when she is school age. The thought of trying to juggle school and Gavin's hospitalizations makes me sick -- I'm waiting until next year to start stressing about that one.

The last thing we discussed with Gavin's suppressed immune system. Although Dr. R is fine with Gavin being in open spaces at the YMCA with other children he gave us the big NO on taking him to Kid's Church, which I totally understand. The space is just to small and the infection risk is way too high. Last week was Gavi's first week in his Sunday School class -- I guess it was his only week -- at least we gave it a try! We are going to start giving Gavin more frequent IVIG infusions and attempt to keep his levels high, in an effort to help him with infection. We will start checking levels every week along with all his other weekly labs.

Enough info? I certainly think so. Today we are off to the pool for some relaxation.

Ahhh...

In The News...

Thank you to Bally Medical and Mishock Therapy for organizing this yard sale to benefit Gavin. We plan on using the money to off set the costs of making our van accessible for Gavin. It's getting harder and harder to get him in and out of the van and into his wheelchair. Every time we get him out of the van we take a huge risk of getting one of his many lines caught and pulling it out -- it has happened many times and sent us back to the hospital and into the OR for a new line.

We will be so grateful for any money this yard sale raises! To read the full story click here.

Home Sweet Home...

We pulled up to our little apartment last night and we all took and big sigh -- it's so good to be home. We had a great vacation filled with lots of memories but it is always nice to come back home. We spent most of our time at the beach. Madison found a new love in the ocean -- boogie boarding and Gavin and I spent most of our time walking up and down the board walk, sipping coffee and taking many breaks browsing inside the air conditioned stores.

We also made a trip to the zoo where we were once again reminded very clear and loud that Gavin does not like animals. He screamed most the the time, though he did calm down by the end and enjoyed watching the bears swim in their little pool. Madison's highlight of the trip was riding the boardwalk rides and of course eating ice cream!

Gavin did pretty well, although he is very tired and his poor little body is very weak. Hopefully we can get him back to baseline in a few days with the help of some major hydration and rest. Gavin has some exciting things happening in the next few months -- I'll post about this excitement later.

Enjoy the photos...

Long Overdue Update...

Sorry about the lack of updates -- trust me when I say that is a very good thing. We have been so crazy busy lately, as most of you know I try to cram all life's excitement into the short time we are home and out of the hospital. We mainly are spending most of our days at the pool and splashing in the water, which has been an absolute blast!

Today we spent the day down at duPont getting Gavin's new central line! The placement went smoothly and our buddy Dr. Katz was able to place the exact size line I requested without any issues. There is some concern over Gavin vessels as they are getting very small due to scaring. It's interesting that Gavin does not make enough platelets to keep his counts up and how this actually is working in his favor and is actually giving us more time as it lessens the chances of his vessels clotting. We did have a little scare with the Anesthesia today as it was very difficult to wake Gavin up. His autonomic issues seemed to heighten in response to the sedation and he basically went into a little hypothermic way to deep sleep -- but eventually came out in his own time.

Tomorrow Madison has her four year well check, which is a real highlight in her little life. I'm sure we will have lots of photos to document her special day! We will also be heading down to duPont again for wheelchair clinic where Gavin will be evaluated to a new wheelchair and some other possible equipment.

After are busy day we will all pack up and head down to the beach for the week! Let say lots of prayers Gavin does well and we all have a nice week without any drama!