Wednesday, August 19, 2009

Still Home

We are still at home, waiting for Sam's site to heal. The late night /early morning antibiotic infusions are making for a long week, as are the daily dressing changes needed to monitor and keep Sam's site clean. Yesterday we saw a little improvement in the redness around the site. Today the site looked about the same as yesterday, but I accidentally created a new problem.

When Sam was younger we used to clean the area around his site with chlorhexidine. While Sam was in Boston initially he developed a sensitivity to the chlorhexidine and we stopped using it and switched to using Povidone-iodine. Becuase we have been battling so many site infections we started scrubbing Sam's line with chlorhexidine as the reports say that it is more effective on plastic than Povidone-iodine.

Yesterday while doing his dressing change I thought we would try chlorhexidine again. Bad move. We are down dealing with blisters all over the area around Sam's site. Another thing to keep clean and to watch.

Other than that Sam is still doing well and we are still hopeful that we are going to beat this infection and save his central line.

I also wanted to share an article from the from the London Free Press in Canada about Hunter. I mentioned Hunter a few months ago as his family contacted us when he was diagnosed with Microvillus Inclusion Disease. A link to the article is below:

That's all for tonight. We will keep watching Sam's site and will post again if there are any changes over the next few days. I guess this officially puts an end to our planned camping trip this weekend. I am starting to think that Sam may never get to go camping with us...

Monday, August 17, 2009

Home Again

We have been successfully discharged from the hospital and are back home. Sam looked very relieved to see his own bed tonight.

The strain of staph that Sam has this time is not the same as the last two infections which is very good news. This, with the addition of E-Coli growing on the site, indicates that the infection most likely came from the day that sam ripped off his dressing and pulled his line. With three site infections in the last three months we are adding another step to Sam's dressing change routine to hopefully help eliminate any bugs from sticking to his line.

We will be watching his site for any signs of changes over the next few days, with any luck the antibiotics will do their thing and we can get rid of the infection and save the line. If the infection moves up his tunnel or doesn't clear up in the next few days then we will be readmitted to Milwaukee to have the line pulled.

Sunday, August 16, 2009

Sunday Update

Bad News - The culture from Sam's insertion site has grown out both Staph and E-Coli.

Good News - No growth in his blood cultures.

The Plan - As long as the Staph does not turn out to be a resistant strain, we are going to attempt to save his line and treat through with antibiotics. The infection has not moved up the tunnel of his line yet so we are hoping that we caught this ealry enough. If the infection moves or the staph is resistant to antibiotics we will move Sam to Milwaukee and oull the line.

Saturday, August 15, 2009

You have got to be kidding...

I felt this way several times this week.

On Wednesday I walked into work after being outside for 10 minutes. I was greeted by the receptionist who told me that Deb was trying to get a hold of me and that I needed to call home right away.

Sam decided to remove his dressing and tried to tug out his central line after his nap. A quick trip to the ER confirmed that his line placement was still OK.

Thursday arrived along with a nasty head cold for Sam and for Myself. I started to feel better by Friday and Sam appeared to be feeling better as well. Then he woke up this morning screaming and tugging at his ear.So we rushed into this clinic to have his ears checked. No ear infection - most likely the fact that his molars are coming in that is causing the screaming.

Unfortunately as I was getting Sam undressed at the clinic I noticed that there was discharge around his central line site - AGAIN - so we are now inpatient - AGAIN- so we can start IV antibiotics -AGAIN- and hopefully be able to save this line. If we have to pull this line it will be the third in less than 3 months. I am so frustrated with the whole situation as there really isn't much more we can do to try to prevent these infections, but we can't continue to have new lines put in every few weeks.

I will update more as soon as we have any new information. It is way past time for Sam's nap and he really needs to sleep.

Sunday, August 2, 2009

The Difference A Year Can Make

A year ago today we landed in Boston for the first time. What a crazy whirlwind of a day that was. Looking back it is hard to believe that at that time that Sam would be such a happy healthy boy.

And even though we commented yesterday about it being a nightmare that Sam is walking, we are thrilled at the same time. This is a huge milestone for him and he gets so excited when he walks. Just another thing that he can finally do that he sees his big brother do. Today, however, he was a little frustrated when he couldn't figure out how to climb the wrong way up the slide like Ryan did.

So, what else have we been up to while we aren't at a docotors visit, or in the hospital, or flying to Boston??? We have commented a few times about working on the house. Last March, right before Sam was born a month early, we found this abandoned, forclosed eyesore that we couldn't resist. At that time we had no idea, of course, what the next year was to bring or we may not have taken on this challenge. The last couple months have been spent renovating the outside of the house and putting in lanscaping. Yet another example of the difference a year can make.

Saturday, August 1, 2009

Is This Nightmare Over?

It just might be. After spending 19 out of the last 43 days inpatient on three different occasions, in three different hospitals, we are ready for another long break from seeing the inside of a hospital room.

On June 18th, when we were first admitted in Milwaukee for a site infection, we had made it 263 days without an inpatient stay. Sam still had his original line that was place in May of 2008 and lasted 399 days. To be honest we were very lucky to have gone that long without an inpatient stay.

When we were discharged from Milwaukee we had voiced a concern that we didn't think that his course of antibiotics was long enough and we were nervous that we had not waited long enough before placing his new line. Everything seemed fine until the day after our clinic visit in Boston when Sam developed a fever of 103.2. Sam was admitted to start antibiotics and have blood cultures done.

Sam's cultures came back positive for the same strain of staph that was growing in his site just a few weeks earlier when we had his line pulled and replaced in a new site. Two days later I did a dressing change and could see that his site was infected as well. After talking with Dr. Puder we were in agreement that we really needed to pull this brand new line as we wanted to prevent a recurring issue with staph sticking to the cuff around his line. His line was pulled and then Dr. Puder left for vacation. As we have always received excellent care in Boston we were not concerned. Unfortunately this is when our inpatient stay in Boston turned into an absolute nightmare.

Sam's line was pulled on Monday morning. Sam spent the next 6 days without TPN. Because the concentration of Sam's TPN requires it to be delivered via a central line and he was living with peripheral IV access only that meant no nutrition for that entire time. In contrast, Milwaukee ran a "light" version of Sam's TPN while we were inpatient to keep him nourished. Deb had questioned this several times several times throughout the week but was blown off and never got any real answers. On top of that he became dehydrated as they were not putting anywhere near enough fluid into him. They realized this on Wednesday night. This delayed our new line placement to Friday afternoon instead of Thursday morning. Deb asked several times a day, every day, if the plan was to still discharge Sam on Saturday morning and every time the answer was yet, even at 8:30 PM Friday night when she left the hospital to head back to the hotel for the night.

On Saturday morning Deb arrived at the hospital. Sam's nurse came in and said to Deb "So you’re going home today!". So far so good. Then the resident came in and started talking to Deb about how critical Sam's labs were and how it would take a few more days for things to balance out before Sam could be discharged. What? Up to this point nobody had ever mentioned "critical" labs and not one person mentioned staying inpatient longer than Saturday.

The resident then started asking Deb "Who told you that you would be able to leave today?". "Everyone" was Deb's answer. The resident couldn't believe that anyone told Deb that they would be leaving and was obnoxious towards her. Deb demanded to talk to Dr. Puder. She told them that if he agreed that they needed to stay, they would. Since Dr. Puder was on vacation Deb was told that it may be tough for them to reach him. For anyone reading this who knows Dr. Puder, you will know firsthand that he is quite possibly the most accessible doctor in the world so this did not sit well with Deb.

An hour later Deb was told that they had been trying to reach Dr. Puder but were not able to. At this point it was already 10:30 and she needed to leave the hospital by 11:00 to make her flight. She told the nurse (as the resident refused to come into Sam's room or speak to Deb anymore) that unless she heard from Dr. Puder by 11:00, she was leaving against orders and would have him admitted in Appleton if needed. Amazingly enough they then managed to reach him and he gave the go ahead for us to head back to Appleton. When Sam got back here he looked terrible. We started his TPN right away and went up to a 20 hour cycle (we were down to 14 hours a day). We hoped this would help him return to normal. We were also running extra fluids throughout the day to try to get his hydration level back up.

Sunday morning I talked to Dr. Puder and found out that the resident had lied to Deb and in fact never attempted to get hold of him until Deb threatened to leave at 10:30.

By Monday Sam was looking worse rather than better despite our best efforts to keep him hydrated. By Tuesday he was sleeping most of the day and was very crabby when he was awake so we headed to the hospital for yet another admission.

Basically Sam was so malnourished and dehydrated that his body just could not stabilize itself. He had lost almost 7% of his body weight. His blood sugar and electrolytes were all over the place and it took a week of extra fluid and careful monitoring to get him back to his normal self. We are back down to having a 16 hour TPN cycle and we have increased his daily fluid intake greatly. He has gained back the weight he had lost plus some and is now over 20 pounds for the first time ever.

So now we are ready for this nightmare to be over and for our next nightmare to begin. Sam has started to walk...