We are in need of people to paint at Gavin's House tomorrow. We need to get all the painting done tomorrow so the flooring can go in. I guess because of the humidity the paint did not dry as fast at what the team would have liked.
Saturday, October 31, 2009
last night was a rather quiet night. Gavin slept pretty well with the help of the breakthrough Morphine every 2 to 3 hours. Through the night his respiratory status did begin to worsen forcing us to turn up his O2 to maintain his levels. His chest is filling with gunk due to the narcotics suppressing his ability to take deep breaths. This is a hard balance -- keeping him comfortable but still able to breath.
Today was the first day with the new doc and he seems to be pretty on the ball with things, which makes me feel comfortable trusting the changes we will make to his plan today. We are going to put Gavin on a cough assist machine to help his break up the secretions in his chest and throat. We increased his Fentanyl patch to 75mkg and his continuous Morphine is a 2 mg per hour. For anyone who knows just how much medication this is -- unbelievable huh? This kid is just chewing through the these meds. Another issue we are dealing with is fluid retention.
He has full blown edema in most of his body. For those that know Gavin well these photos are crazy -- where is my scrawny little boy? Late yesterday afternoon his fever broke but during the night it retuned with a vengeance. Cultures are still negative, though I'm fearing that the femoral line is infected. I have no idea with the plan is going to be. We all want to give Gavin the best shot at life, and rushing into a new line will for sure shorten the time we have if we truly are dealing with a bacterial infection. I'm fine with waiting. Like I said before I have an odd sense of comfort in being confined to this room. It's still safe here. Outside these walls will bring reality -- I'm not ready for that yet.
Gavin's House is in full force! Adam showed me the video of the current construction and my heart skipped a beat. First because it was exciting but also because I can't believe it will be done this week! Everyone who is taking part in this project is simply amazing. The impact that you will have on our life can't be described. The fact that I get to come home to a new home -- one that will make our life with Gavin easier, will make all the difference in our ability to cope with the inevitable.
Friday, October 30, 2009
Today has been such a crazy day. My emotions have been all over the place, which leaves me at five o'clock ready to go to sleep. This morning I faced the sudden reality that Gavin would be going to surgery for the last time. Lots of tears followed, even down in the cafe while I was just trying to put the darn creamer in my coffee.
I get back upstairs and find that Gavin has a fever and the line cannot be put in due to the infection risk. All the sudden my tears are gone and I, for the first time in our long three year journey with Gavin, was so glad to be spending the weekend here at the hospital.
A few hours later I got the chance to speak with an art therapist who will be helping out our family. Madison and Gavin will be able to have sessions together and make some much needed memories while being in each other's presence without Adam or I. The Therapist even mentioned being able to video tape some of the session that we could have to keep as memories -- that just about melted my heart and the tears started flowing again.
In the next couple of seconds a "code blue" was called on our unit and my heart went into I panic and a ran down to hall to find Gavin still sleeping.
My pounding heart was so relieved.
Madison and Adam came by to visit and our time together was too short. It could have been longer but Gavin's pain is getting away from us again, which means that any noise stirs him up. I could tell Madi was having a difficult time -- I hate to see that sad confused look in her eyes.
It's going to be a long weekend.
Gavin woke this morning with a high fever. We will not being going to the OR today, as that will set us up for an infection in the new line and give us less time with Gavin. I'm feeling very relieved about this. Earlier they came in and told me that the OR called and wanted Gavin down there at 8 am.
I wasn't ready.
Emotionally I wasn't ready to do this one last time.
I know we will have to go back in a few days but I'm happy to have a few mores days looking at my babies bare chest with no plastic hanging from it. Our amazing doctor leaves for Guatemala this weekend for two weeks to do a medical mission type trip. He does this every year at a new location and every year I cringe when the day comes for him to go. He has been such an amazing support to our family, not just medically, that I begin to tremble in fear when I know I can't reach him.
This afternoon we will be sitting down with our Doc and also the doctor who will be covering him to go over all the possible issues we may have in the next two weeks and also to have a game plan. I'm not sure I could ever express to these doctors, who have really become our family, the intense impact they have made our our lives. They have taken Gavin in as their own and and choose not only to see his condition but also his spirit -- I will never forget this.
Thursday, October 29, 2009
I'm not going to lie -- it was a horrible day. Today we switched Gavin over from the morphine to the fentanyl patch and we lost so much ground as far as his pain control. It takes the patch up to 12 hours to become effective, so after we took Gavin off the morphine pump we were giving PRN doses of morphine, but nothing was cutting it for him.
Gavin's threshold for medication is through the roof. He is on an adult dose of fentanyl and is sill breaking through. We have made some progress this evening, as he seems to be a bit more comfortable, but it's going to be a long night.
I did get in contact with a hospice agency that might work for us. They will be coming out to the house next week to do the intake. I have mixed feelings about it but I'm trusting that God will give us direction and give Adam and I the strength to figure out what will work best for us.
Tomorrow Gavin is off to the OR for his new line and it will be a bitter sweet day.
I can finally tell him that he will never have to go through this again.
Wednesday, October 28, 2009
It's been a nice quiet day. We are finally keeping up with Gavin's discomfort which means our little boy is resting so peacefully. Adam and Madison went home today as it has just been very difficult having people in the room. Although Gavin is peaceful he is in such a light sleep. With any noise he wakes up moaning and then we start the process all over again.
Madison and I did get the spend a few hours together this morning painting ceiling tiles for our unit halls. I really can't wait to just get back home and start up our life again doing the things we always do. Speaking of which, Gavin is scheduled to go back to the OR on Friday, which means I we can go home later that night. I was really wanting it to be tomorrow but it just isn't happening. That stinks, but I guess I just have to deal.
We moved rooms last night and now we actually have a bit of natural light peaking in through the window. I know photos of Gavin have been scarce but he often looks so bad I'd rather not remember the bad moments. Today, although he looks a little sick in these photos -- he looks so darn peaceful.
Sorry for the lack of posting yesterday -- I was just so tired. Yesterday was a very difficult day for me, I think it was probably because things just started to sink in. Gavin was very restless and uncomfortable all morning and would not even tolerate being held, which of course broke my heart.
On the infection front, we were certainly loosing. The cultures from two days ago began to grow a secondary infection, which often happens because when Gavin gets sick he tends to just get sicker and weaker and unable to fight anything off. The even worse news is that it grew fungus, which is our number one enemy and the even worser news, if that's even a word, is that he also grew out a fairly common bug, but one that has become so resistant that we are now on isolation.
With that said, the line is now out so we just need to pray very hard that the nasty bugs didn't make there way to any other part of his body. It's so hard to tell just how he is doing. He's not really mounting a response to these infections beside being in pain. He has not had a fever the entire time we have been inpatient -- but is obviously very sick.
Yesterday we also had another carnival of infusions, with Gavin receiving blood, albumin and IVIG. I asked that he only be given a small amount, due to the fact that he is so swollen and his belly will only hurt more after the blood gets trapped in his liver and spleen. I guess we will see what his counts do today.
Today will just be another day of managing his comfort. He is now on a high enough dose on the Morphine pump to be switched over to the fentanyl patch. I'm not sure if this is the plan or not. We also have been looking into lots of different hospice options. I was referred to a place that sounded like a prefect fit for our family with lots of creative therapies but later found out that we live out of their treatment area. All the other places just don't fit us -- even their web pages make me feel like I'm in a nursing home -- that's not our life. We are a young family - active and still full of so much life despite Gavin's illness. I'm praying we will find some type of program.
Thanks for all your continued prayers and support. In case you are wondering due to the rain I think our move in date to Gavin's House will be delayed -- I guess someone doesn't want to do electrical work out in the rain.
What's wrong with that?
Monday, October 26, 2009
Gavin's blood cultures remain positive for a bacteria that is very resistant, hence the continuing positive cultures after days on all these antibiotics. So tomorrow Gavin will have his central line removed. We will then hang out here for a few days with a femoral line until the cultures are clear and then we will go back to the OR on either Thursday or Friday to have a new central line placed.
We continue to attempt to make Gavin comfortable. Today we switch him over to a continous Morphine infusion with rescue doses if needed. Gavin is chewing through the Morphine, so once the rate on the pump gets to a certain dose we will then switch him over to the Fentanyl patch and use the Morphine as back up. He continues to struggle with finding rest -- but I think we are getting there.
Today was talked about getting Hospice at home. We are not sure how we feel about it -- I'm not sure it will fit with our way of life. We will continue to be out and about and allow Gavin to experience everything life has to offer, so I'm not sure how hospice will play a role in our family. But we are not closing that door -- we just want to know more about it. I'm going to contact them next week to discuss what would be best for Gavin and our family.
Speaking of our family -- Did you remember that we are moving this weekend? All I have to say is -- holy cow. I'm a bit stressed but I know things will work out. I know that help is needed at the house this week with painting and other things. If you want to come help out in the evening go to the Gavin's House site and contact my wonderful mother Linda.
Sunday, October 25, 2009
Today has been a rather quiet day, which is a good thing. We increased Gavin's Morphine, which seems to be helping his discomfort. Tomorrow we will be talking with the Pain Team about possibly using a Fentenal Patch, though because of Gavin's size it might not be possible, but we'll see. Gavin cultures that were drawn yesterday are both positive for the nasty gram negative rods with a little note on the bottom that reads possible other organisms -- great.
Madison and I took a much need breath of crisp fresh air this morning. She has been having a difficult time here. Although we have not talked with her about things I think she probably picks up on a lot -- well, I know she picks up on a lot. I know all she needs is me. Adam does a great job helping her with things but she really just wants to spend time with her mommie -- which is just so hard because I just want to spend time at Gavin's side trying to comfort him. Learning to find a balance is difficult but I'm really trying hard.
I find these photos to be simply amazing -- just because they are simply Madison. Her personality shines -- her beauty is so strong both in and out. Please pray for our little girl. So much is going in our life right now not only sad things but also amazing things and I think that is hard for her four year old mind to cope with. Even Adam and I struggle to balance out the really happy emotions along side the very sad ones.
I just wanted to add just so we all are on the same page -- nothing has really changed in Gavin's condition. He has been getting progressively worse over this past year but nothing recently has really changed. It's just Gavin care that is changing. Our Doctor said that he can probably be keep Gavin alive for a very long time -- but he can not give him quality of life. We talked with the doc awhile ago and we all decided that quality is more important to us than quantity -- so that's what we are shooting for. Just wanted to clarify. Yes -- it is a very sad transition but one that will ultimately lead to Gavin's comfort and happiness.
Saturday, October 24, 2009
Today is a new day and with that I'm finding new hope -- or at least a sense of peace. I heard it said that one of the most difficult things in a situation like ours is, "believing for a miracle while living in reality."
Thanks for all the overwhelming support we have received via this website along with many emails. Adam and I just couldn't do this without the support of friends, family and all the many strangers we have come to love.
So things here at duPont have been a little rough. It is harder than you might think keeping our little man comfortable. He's a fighter -- even if it means being in pain. He fights through meds finding it very difficult to just rest. It seems like after only a few days on the Narcotics he is already needing more. Our little addict. We will find the perfect balance of meds it just might take a little time. Both his cultures from yesterday are growing gram negative rods. Our plan right now it so wait and see what grows. If it is the providencia, which has been growing very frequently we will pull the line as this particular strain of bug has mutated right before our eyes over this past year and is now resistant to many of the antibiotics and simply cannot be cleared out of his catheter.
If the line must go we will be getting a new line -- which we think will be his last line. We are going to start with a clean line and keep Gavin on antibiotics and try to treat the bugs as they grow and as they become resistant we will switch the meds around until we can no longer treat and then we will sadly be done, which may be tomorrow or it may be a long time away.
What that said, I am choosing life for my family -- as I hope everyone does for their own. We will continue to live each day as it is our last. We will look past the gloom and doom and choose to dwell on the amazing blessings God has placed in our lives.
Today is a new day.
Today we choose life.
Friday, October 23, 2009
There have been so many times over the past year that I feel like I'm living a nightmare and I just want someone to pinch me and I'll wake up. I guess in a way -- looking at our life as just a dream and not really our reality, is just another way we cope. Today was another day where now, at the end of the day, I look back over the last 12 hours and wonder if it was all just a bad dream or is this really all true.
Sadly it is all the cold hard truth.
This evening Gavin was admitted to duPont. He has been in bad shape over the past few days and this morning we felt like he was to unstable to be at home. After an emotional conversation with Gavin's doctor it was decided that Adam and I needed to site down with Dr. R and talk about things.
Tonight we finalized Gavin's DNR. Tonight we all talked about Gavin's death. Tonight for the first time I heard the words, "when Gavin dies."
No mother should ever have to hear those words spoken about her child. It's sucks and it just seems unfair.
We are switching a lot of Gavin's care around. He will be made comfortable at all cost even if it causes more harm and speeds up the process. He will be given narcotics to help ease his discomfort along side a few other meds to help his agitated state. We will be keeping Gavin on heavy duty antibiotics and antifungals to keep him infection free as long as possible before the superbug grows and we are done.
There are so many other things are we are needing to make decisions on. Please pray that Adam and I have clarity of mind to do this. We want to make Gavin happy and comfortable -- and sadly that most likely means a shortened life.
I'm not sure if I should be posting this or not. On one hand Adam and I live this life everyday and all this talk is just another chapter in our story. For some of you this is hard to read and may even be shocking -- and for that I'm sorry.
Thursday, October 22, 2009
Our Family will be on NBC 10 news tonight at 5:00 -- tune in to see what is happening at Gavin's house and Erin's Dream.
In other news we are at duPont now were Gavin will be getting blood. We found out yesterday that Gavin's blood cultures are positive -- and today during our interview we saw how sick he was. In the car he dropped in O2 and started his typical septic symptoms. We hopefull we get out of here after some IV antibiotics are started and after blood -- but I guess we will have to see.
Wednesday, October 21, 2009
Yes -- as many people have noticed Gavin is always wearing a hat of some kind. One of Gavin's first issues present since birth is his inability to maintain normal body temperature. Gavin was in an little issolette for most of his first year of life just so he could stay warm and grow. Currently we have an infant warmer in our home that Gavin needs to sleep under to help him stay warm.
At times Gavin becomes hypothermic which results in a very low heart rate and apnea -- so therefore he always has a hat on just to help him out. But in typical Gavin style it's not always that easy because Gavin also becomes hyperthermic -- will spike very high fevers not due to infection or illness but rather his body just gets out of whack and is unable to cool.
If anyone has ideas of places that sell cool hats I'm always looking for them. His head is getting way to BIG to squeeze into little infant caps!
Tuesday, October 20, 2009
Things are a little better around here. Gavin finally found sleep after 72 hours of restlessness. That poor little guy -- I can't even imagine the chaos going on in his little body. It seems that these past few days have really taken a toll on Gavin's body. Today without any meds he has been very weak and lethargic. Tonight when I got him out of his chair and into bed he was so weak he could hardly cry. I ended up giving him some meds just so he could be peaceful as it seems like he fights so hard to stay awake when his body is screaming for rest.
Today we did a little shopping for the new house. Very fun -- very exciting! We were over there today to drop some of our stuff off and it looks like things are starting to happen. I saw lumber in the yard, tools in the house and lots of dust -- I can only assume that means things are happening! This week will begin all the major renovations to the outside of the house. I can't wait to see that yellow tin off the side of the house.
Stay tuned to the Gavin's House site for news of what's happening at the house.
Sunday, October 18, 2009
Things are very intense around here regarding Mr. Gavin. For the past four months or so he has been becoming increasingly symptomatic of his autonomic dysfunction including small twitches that have now become full blown tremors, respiratory issues that revolve around crazy big drops in O2 saturations and also sleep issues -- just to name a few.
As most of you know Gavin tends to be a very fatigued and a sleepy guy. It is not strange for him to sleep 20 hours a day -- His body thrives on this kind of sleep. Well as part of the autonomic dysfunction Gavin is also having periods of insomnia. He is so tired but just can't get to sleep.
It's been 48 hours.
Adam and I are so tired. We were "nurseless" this weekend and therefore we were getting up to make sure Gavin was safe anytime he would start to cry, which was practically all night. I have been begging and pleading with the doc to try to figure something out for him but it seems like they just can't figure anything out. Gavin can only have IV medication -- which is making things difficult. He is also now running a fever. 101.3. Not high, but to high for still being on two antibiotics. His fluid from his belly is rotten which means things are headed in a bad direction. Just praying that we can hold off on a hospitalization until November.
I'm just to stressed right now.
Wednesday, October 14, 2009
I was reminded yesterday that I haven't really updated on how Gavin is doing. Sorry about that. Gavin is one difficult child to manage. There are so many variables going on in his little body that helping him feel good and keeping him stable in often easier said that done. While, he has been a little more alert he is still having times during the day where he is completely "checked out." Even when he is alert it just not right. He is having lots of tremors and at times he is still becoming completely out of control and a threat to himself or his tubes.
We are working hard of trying to find medication to help him. It's just hard because we don't know what exactly is going on. Some of what we are seeing his central nervous system being affected by the Mito, some of what we are seeing is pain and other things are just plain old "I'm three" behaviors. Trying to figure out which one of those issues is visible at any given moment if very difficult.
Gavin's hemoglobin is back down to 6 so we should be going in this week for a blood transfusion. We will be heading down to duPont tomorrow to visit the wheelchair clinic and make some adjustments to Gavin's chair including getting a O2 tank holder, getting a larger headrest and hopefully getting a new joystick that will be easer for Gavin to maneuver even when we is very lethargic and weak.
Our meeting with the Reading Eagle went great and we had lots of fun hanging out at the house with lots of great people. Tonight Adam and I will be heading out to pick out hardware for the kitchen, firming up our choices of countertops and also siding. We will then head over to the house to begin taping the trim to prepare to paint!
Tuesday, October 13, 2009
I have to admit that my nerves are jumping as I think about what is going to take place in the next 18 days. Yes -- I looked at the calender today and to my surprise we have 18 day until we are moving. This entire project is really crazy -- very crazy. It is so cool to see how God seems to be blessing our family above and beyond. As I keep reminding some of the people in charge of the new house -- all we needed was a ramp to get Gavin into the front door and I'm pretty darn sure we are getting more than a ramp.
We found out last week that they are going to be installing a mini kitchen with sink, fridge and counter space in Gavin's bedroom. This is going to be wonderful, as it will give us a place designated to Gavin's IV and other various supplies. Currently Gavin is pretty much is taking over my kitchen and fridge with his supplies.
Tonight we are headed over to the house to meet up with Erin with Erin's Dream and also the Reading Eagle who is doing a story on Erin's Dream and also Gavin's House. Enjoy the photos of Madison -- we took these on the way in the door today -- that girl is full of faces. I just never know what I'm going to get.
Monday, October 12, 2009
We have created a new Gavin's House web page so everyone can check up on the progress of the house, see photos of the house and find out ways to get involved! I changed the link at the top of this page to take you directly to Gavin's House instead of Erin's Dream. You can then find lots of information on that page including a calender to find out what's going on at the House!
In case you didn't notice we have a new look to the blog! Thanks to the Polka Dot Pig for the cheery new look!
Saturday, October 10, 2009
Our new house project is officially beginning. They are calling it Gavin's House as this house is being made to fit our little guys needs -- every last one. Today we were excited to do another walk through and get even more excited about modifications being planned out and also lots of extras that will really make this house our home!
Many people have been wanting to help our family for a very long time. So many of you have done amazing things for us -- and we are so grateful! This is one way where you can help us out in a very concrete way. We have so much stuff to do in the next three weeks -- did I mention we are moving into the home in just three short weeks?! If you have skills that you would like to put to use please contact Erin's Dream and they can help you be apart of this incredible blessing to our family. I added a little "Gavin's House" button on the top left of this page where you can click and be taken to a contact page for Erin's Dream. Make sure you include specific areas that you can help in.
As always, we treasure your friendship, prayers and support! We really just can't believe this is actually happening.
We are so very excited!
Friday, October 9, 2009
As some of you know, one of our biggest challenges we are currently facing is our housing situation. We live in a second floor apartment and for obvious reason this living situation and haveing a child who is wheelchair dependent just doesn't mix -- not even a little bit. Everyday I load Gavin up from his crib into his old kid cart, being sure not to pull any of the various drainage bags out of his belly, trying not to rip the O2 off his face and most importantly trying to lift his heavy IV pump bag without breaking his central line, aka his life line. It's a scary frustrating thing. What is even more frustrating is that I then have to manage to get that wheelchair including Gavin and his equipment down a flight of stairs and then transferred over into his new wheelchair.
It literally makes me frazzled thinking about it -- and to think I do this several times a day. I'm not looking for pity because really, I choose to leave the house -- it's just how we roll.
Anyway the big news is that last night we signed papers on a new house! A house that through the heart of another family who has endured massive crisis is being totally renovated to meet the needs of our family. The house will be completely accessible for Gavin. I'm literally floored every time I even begin to think about the donated manpower that is coming together to make this dream a reality.
Erin and Jeff and endured such intense heart break over the past few years. Here is a small excerpt off their blog, "Most families encounter misfortune – some more than others. Against all odds, Erin and Jeff lost two beautiful children to Infant Leukemia in less than two years. They now have a third child who is also considered at risk for the same deadly disease. Every parent’s worst nightmare became reality, twice." Adam and I are grateful beyond words, and truly overwhelmed, that this family is reaching out to us and making our life a little easier -- even in the midst of their own grief and loss.
Thanks to Erin's Dream and the community around us for making this dream happen. You all are simply amazing!
Wednesday, October 7, 2009
We are home after a long crazy day at the hospital yesterday. Yesterday Gavin received blood and platelets before going to the OR as his counts took a huge drop over night. He did well with the new line, though they were unable to do the bone marrow aspiration due to lack of staff. No big deal. These photos were taken on our way out the door yesterday, and as you can see he is looking a bit rough around the edges. He is doing well today and slept the entire day, which is a good thing as his body just needs to rest.
So now we get back into the swing of things. We have some crazy/good changes happening in the next month, which when the time is right I will share. Please keep us in your prayers are we tie up lots of loose ends in our life!
Thanks for helping us through yet another stay at DuPont!
Tuesday, October 6, 2009
We are an "add-on" for the OR today to have Gavin's central line replaced, his femoral line pulled out and a bone marrow aspiration. "Add-on" can mean anything from early this morning to sometime next week -- I'm praying for somewhere in between.
It's been long stay here -- not so much in the number of days but rather the high level of stress. We are ready to go home. Please keep in prayer the many families that spend countless days in this place, particularly a little girl we met who will be traveling to CHOP after her long six week stay here.
You all are the best!
Monday, October 5, 2009
One of the hardest part about raising a child with a progressive illness is looking back at old photos and videos. Adam and I don't always see the small ways that Gavin is getting sicker, which I'm sure is a good thing and just another way we cope. Today I was looking through some old photos on the computer and I found these photos from only a few months ago. I really miss this kid. For sanity's sake I probably should not be looking to the past, but these are the memories I want to keep close to my heart.
Yesterday was a day I never want to repeat. Gavin was tired to the point of psychosis and nothing was helping. The morphine finally gave him the relief he needed and he slept most of the night. This morning he is still dealing with intense agitation but thankfully seems to be sleeping better, as he has been asleep for the past hour or so. We have some plans and far as making him comfortable but the docs just need to make sure nothing is going to make his other issues worse.
He continues to look more yellow today with out any answers why. I haven't heard of his bili levels today. As I kinda figured we will not be going to the OR today. Maybe tomorrow. They are trying to coordinate his bone marrow biopsy to be done the same time as then line.
Sunday, October 4, 2009
I don't' have the energy to go in to all the details of the day but things here been so stressful. Gavin has been awake for about 20 hours, which if you have read this blog for any period of time, you will understand that this is a huge red flag. We have tried so many medications today to get him to calm and sleep but so far nothing is working and some have made it worse. Today we almost lost his fem line due to him thrashing around and he has been in restraints most of the day.
We are about to try morphine -- so please pray that this does the trick. Also Gavin's bili is on the rise and today his eyes are a nice shade of yellow -- and no one have any clue why.
We are so incredibly stressed.
Saturday, October 3, 2009
Nothing new to report today. Gavin continues to be about the same, maybe a little more alert -- maybe. He is currently getting some blood so hopefully it will give him a little extra boost. This morning we spent wandering around the halls trying desperately to entertain ourselves. I always try to explore with Madison and try to find new area of the hospital we have never been before, but that game is impossible anymore without setting of an alarm or actually leaving the hospital.
I heard a rumor that they are trying to get Gavin a new line on Monday -- that feels a little too good to be true but I guess we will see.
Enjoy the photos.
Friday, October 2, 2009
I feel like I could just cut and paste about half the posts on this blog and it would apply to our day here today. It's been long and tiring. My feet hurt, my back hurts and I'm just really tired. Gavin is stable and his body seems to be happy that the infected line is out. I can't say that he is looking good, but certainly is looking better. He was awake for awhile today, though when he is awake he tends to be very agitated and combative -- I don't' blame him.
It was a really hard day for Madison and I. I can't even begin to explain how difficult it is to find balance while raising a child who although is not ill, is struggling every bit as much as her brother. She is coping very well but I just hate so much that she has to deal with these things. She is becoming so much more aware of Gavin's illness and is starting to sense on her own that her brother is not going to get better.
It really breaks my heart.
This weekend should be very quiet. Gavin was in need of blood today but I asked them to hold off until tomorrow since he is stable. When Gavin gets blood it causes his liver and spleen to swell, as they trap the cells and causes him pain -- I just didn't want that for him today. Tomorrow I know he will need it and the poor guy also needs his flu shot.
Adam and I are so amazed everyday and the number of people who are supporting our family. At times it is overwhelming to think of the army of prayers that surround us everyday. Our words can never show how much this means to us -- and we never want you all to forget our gratefulness!
Thursday, October 1, 2009
What a long day it has been. We left for the hospital around 10 this morning and at around 10:30 Gavin decided that he wanted to get sick -- very sick. There is nothing like trying to drive down the highway while trying to adjust the rate on the O2 tank behind you. Gavin was very ill by the time we arrived and they set up the ER room like an OR and removed the Central line and placed a femoral line within 30 mins of arriving.
Gavin is still not great but he looks so much better than this morning. We now just sit here through the weekend and reevaluate things on Monday and see if Gavin is ready for a new line.
Thanks for your prayers.
We've got lots of issues right now that we are dealing with. Gavin's blood counts continue to fall and seem to be falling faster than we can get blood into him. Yesterday we spent the day at the hospital getting blood and another injection of the GCSF, which right now we are only getting twice weekly and I have a feeling he will need this given daily, as his White count was back down to 1. He is also now growing fungus as well as the other gram negative bugs.
Gavin will be admitted today after he is becoming more unstable here at home. Last night he was dealing with intense riggors, high fever and low O2 sats -- it's time to be admitted.
Last issue is that if you look at the photos in this blog you will notice my child has been wearing the same clothes for the past three days. ooops. If you look even harder at the blog header and intro photo, you may think that we haven't changed him in over a year. Well we have, but I think he is due for an outfit change. Prioritize people. Wardrobe in on the bottom of my list. I promise to put a new shirt on him.