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...

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