Bad Day...

So far today has been a pretty rough day. The relief seen by the first dose of the Levequin was short lived. He has had a fever all day and has been very lethargic and irritable. Mistakes were made last night with his fluid orders and now he is very dehydrated. We are playing catch up now and trying to get him to make some urine, which will certainly help him feel a little better.

No word on exactly what bug is growing. We should know something within the next 24 hours.

Admitted...

Gavin was admitted late this evening after we received a call from the doc saying that Gavin's cultures were positive for yeast and gram negative rods. I'm so glad we brought him in as late this evening he got very sick spiking a fever over 104. After switching his antibiotics around he is doing much better.

We just got up to our room a little bit ago and needless to say I'm so tired. It has been a emotional past few days -- going from crisis mode to normalcy and back again so fast, it is just so draining.

I'll update tomorrow with the plan.

A Little Blood...

The blood is up and running -- finally! We have a few more hours left and then we should be going home. We drew some additional blood and fungal cultures to see if anything will grow. Gavin got very sick last night, though this morning he was doing a little better.

Thanks for your prayers!

Change Of Plans...

It's crazy how fast things can change!  This afternoon Gavin spiked a fever over 102, which is his first fever in quite awhile.  I also got a call from the hospital saying that Gavin's hemoglobin is extremely low and he needs to be transfused first thing in the morning.  So first thing in the morning we will be off to Delaware for some much needed and long overdue blood.  The doc said depending on how Gavin looks he may need to be admitted but we'll just have to see how things go.

I'll be sure to update tomorrow afternoon with any changes.

Three Weeks...

I can't believe I just typed those words -- three weeks!  This has truely been a dream come true, a much needed break for our family.  We are so grateful to Gavin's doctor for allowing his antibiotic and antifugal coverage to be extended a whole two weeks, which will be ending later this week.   We know that our time here at home will end soon, but for now we are still grateful for each day.

Gavin's small bowel follow through is scheduled for Feb 13th, which should allow for an admission and back home again before the testing is done.  We'll have to see if Gavin chooses to follow the schedule :)

Things have been a bit quiet around here.  Madison has been sick and Gavin has just been very tired and irritable.  We have been at home for the past few days -- and for those who know me realize that this is quite a task for my on the go personality!

Thanks for your continued prayers!

Something To Make You Smile...

Two Weeks...

I can't believe we have been home for two weeks.  It's funny how Adam and I have the ability to just forget -- forget all that is going on.  Even though Gavin is on tons of IVmeds and infusions, those things are routine to us and don't really interrupt our day.  When I think of all the things we have done and accomplished over the past few weeks, it feels like we have been home forever!

Gavin is doing ok.  Not great but that is to be expected.  I was really hoping to get him some blood this week but with his doc gone it seems like everything is a bit more difficult to get things done.  We were also hoping this week to have Gavin's small bowel follow through done, but it looks like that might not happen either.

I got a call yesterday saying that Gavin's blood cultures are positive for a bug that he not currently being treated for.  He is not very symptomatic so I think they might just "rearrange" some of the meds to get him better coverage.  His output out of his drainage bags is crazy high and he is looking a bit jaundice again so it looks like he may become more symptomatic soon, but we'll just have to see how Gavin chooses to respond -- he tends to make his own plans.

Remember that no news is very good news!  Thanks, as always, for praying for our family.

One Week - One Day...

This week has gone by so fast, which I guess is a good thing.  Gavin is holding his own, certainly getting tired, but still stable.  He is still on all three IV antibiotics/antifungal, which seems to be keeping infection at bay.  He still is running occasional temps but nothing that has us to worried.  Things that do have us concerned are his low heart rate.  he has been alarming every time he falls asleep with heart rates down in the 50's and below.  This can be caused by several things, one of which is the IV amphoteracin and the other is exhaustion.  When I say exhaustion, it's not the same kind you or I would experience but rather his goes all the way down to the cellular level, his body is tired not only from doing daily physical activity but also natural activity such as maintaining body temp and breathing.  

Last night was Gavin's first time in his special needs gym class.  I was pretty disappointed as I was thinking is was going to be more structured with activities but it really was just an open gym with lots of fun equipment -- great for Madison but Gavin wasn't able to do anything.  I think we will try it again and maybe go to the class that is earlier in the day.  

We have no plans for any upcoming appointments.  I'm sure Gavin will need blood in the next week but we are really hoping to stay out the hospital for at least another week or so.  I'm going to be doing some begging for a longer course of antibiotics to try to keep us home while our main doc in away.  We'll see.  

Thanks for continuing to think of our family!

Home...

Sorry for the lack of updates yesterday but the word on the street is that we are home.  We were discharged late last night after a chaotic day and some misunderstandings.  The first thing was the ultrasound - it showed a few things.  Again it showed that Gavin's liver like his spleen is down to his pelvis, which is huge!  The radiologist said ti also looks the the bile buts have increased sludging, even from the last film last week -- this is from TPN.  They took a look at the gallbladder and determined that ti is not infected at this time so we will just sit tight on this new issue.

Now, about that small bowel follow through.  It didn't happen, but only because I canceled it.  When all the details of the procedure were spelled out to me I was not aware of a few things that would really make Gavin uncomfortable.  That along with the fact that Gavin's doc is away I think it's just best to wait.  Plus Gavin is still not feeling well, so I can't put him through even more pain just for the convenience of having the procedure done inpatient.

Yesterday we also got to spend some time with friends who will be outpatient tomorrow.  This really was the highlight of my day.  Madison got to play with a  little boy who she is totally smitten over and I got to talk with another mom who knows exactly how crazy this life is.  Very cool. Thanks so much Katie for being a great friend.

So here we are -- Gavin was discharged, but with fevers.  We are treating him as if he has a fungal infection, though no cultures grew out, we are just going by his symptoms.  So here we are at home again with, what feel like a million IV meds to run.  

It's ok.  There's no other place I'd rather be right now.

Getting Better...

Things are looking a bit better today. Gavin temps are sill going up but they are also come down, which is a great sign. The plan for today is nothing! But tomorrow we are going down to ultrasound the get closer look at Gavin's liver and gallbladder, to see what the next step needs to be. We will then try to get a small bowel follow through done either Monday or Tuesday. Adam and I have tons of anxiety over this rather simple procedure because we know it is going to make Gavin very sick. His belly will have to be injected with a small amount of dye to be seen via fluoroscope go through his bowel. Since Gavin doesn't even tolerate his own secretions, he will most likely be left retching and vomiting -- something that just breaks our hearts. We were given a few tips from a wonderful mom who has "been there - done that," so hopefully these things will help Gavin. We are doing the small bowel follow through to see if another surgical type procedure is a possibility for Gavin. At this time we are choose not to give the details of this procedure until we decide if it is right for Gavin.

It's been a long weekend and we are looking forward to Monday, to get things moving again. We are so sad to see our doc go for a month but he really is only down the road at another hospital and can be reached it we need him. The other doc covering him is great it's just that we have a system with Dr. R that is very comfortable and convenient for us, meaning that we don't have to go through a lot of questioning when being admitted and we never have to give any information as He knows all of Gavin's information. But we'll sit tight, and it will be good to have a fresh set of eyes on the situation.

I'll try to update tomorrow after we hear the results of the ultrasound.

Oh Goodness...

I really wish I could give everyone who reads this blog a glimpse into how our life really is. The colors of emotions that are seem in one given day is enough to fill a rainbow. For example, Gavin was very sick yesterday, crying a lot and generally in a lot of pain. In that same day I spent about an hour in the hall with Madison and the Nurse Aide playing a crazy game of twister filled with giggles and smiles. Within five minutes of entering Gavin room again I have a talk with some of the nurses about end of life issues. This back and forth is what really makes this journey difficult. So many other families sit next to there children today in this and other hospitals feeling this same range of emotions. Many have other children at home, husbands at work and friends somewhere back on their path. It's a crazy life.

With that said -- Today Gavin took a turn for the better. So we all sigh with relief but at the same time our frustration levels rise even higher as we have no answers for the chaos churning in his body. These are the things we know:

Gavin's blood counts dropped and today he will be transfused.

An ultrasound yesterday sent panic through the chain of command that Gavin's spleen is "huge" (we already knew that -- but it was interesting seeing the look of their faces)

That same ultrasound also revealed that Gavin has Gallstones -- go figure. I guess he has been sneaking way to many double cheeseburgers. The doc does not think that this is related to this current episode but now we have another problem that needs to be monitored.

We did a culture from his J tube which still shows fungus living in the bowel, which can be normal but we were hoping there wasn't any as he in on so many anti fungals and as we know from history whatever bugs are in his bowels will eventually end up in his blood stream.

Our doctor is going to be away for one month starting Monday. Ahhhhh -- can you sense my panic? Thankfully today he will be sitting down with both Adam and I and discussing every possible scenario and what we need to do while he is gone.

Thanks so much for all the support on our last post. Adam and I sit here at the hospital and read them all, which gives is so much comfort. When we are so far away from reality is is often to easy to get lost and feel alone. Thanks for choosing to be apart of our life.

Loss For Words...

I really have nothing to post. Gavin is still running high temps and this time the Tylenol didn't bring it down at all. Clinically I think he looks worse, but his culture is still negative. We are going to give another IV med to try to help with the fever and make him feel a little better.

The IVIG went well yesterday and he actually seemed to be feeling a little better after the infusion, but that was short lived

I'm here alone with Madison today and to be honest I am so tired. Thankfully, the Child Life program is open today so I just dropped her off, where she hopefully will have a fun filled day of play time.

I am so frustrated and tired of all this. I just wish we could have the next year spelled out for us -- I want to know exactly how things are going to go, which I know, no one can tell us. We are just looking for some peace amongst this chaos -- I know it's there, I know He is there, it's just so hard to find sometimes.

Very Long Night...

I could could rate our night last night on a scale on 1-5 with 5 being the worst it would most certianly rank a 6. Gavin spiked high fevers all night long and continutially rolled back and forth saying that he hurt. He had a significant amount of swelling adding his already irritable state.

Cultures are still negative, we know they will grow, it will just take time. The plan today to to give Gavin an IVIG infusion, which should help boost his low immune system and help him fight infection. This is the first time Gavin will be receiving this type of blood product so please say a pray that he will tolerate it well with no complications.

We are also going to try Gavin on some IV reglan, which is a med he was on for the first year of his life to help promote his belly to move food, or in Gavin's case secretions, out and hopefully help decrease his terrible reching.

He looks very sick to us and my hope is that his culture grows out today and we can pull this line and get him feeling better. I realize the impartance of keeping a central line as long as possible but I just really want to see him acting like his normal self.

I'll update if we learn of anything new.